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| Name: | Emma |
| E-mail address: | emma@yahoo.com |
| Homepage URL: | http://www.freewebs.com/ruutiii/ultracet/index.html |
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| Name: | Bonnie West |
| E-mail address: | periwinkle9@hotmail.com |
| Country?: | USA |
| Type Of Surgery : | n/a |
| Comments: | 11/18/09 I really appreciated your Website. I'm a medical transcriptionist at a nursing facility in Canton, NY, USA, and was typing a doctor's report about an ileostomy. I looked up the word to be sure I was writing it correctly (I've only been doing medical transcription about 6 months) and noticed your Website. I've added your information about stoma's and the difference between an ileostomy and colostomy, because I didn't have that information in my ongoing collection of medical terms. I also felt better to read your story. My daughters have a best friend who has been very ill and is going to have a portion of her colon removed; she's 23. I feel better knowing that you can have a full life with the removal of a portion or all of your bowels, as you've done just fine. So thank you for being so open about your life!! |
| Name: | stacey |
| E-mail address: | sc17carter@yahoo.com |
| Country?: | USA |
| Type Of IBD: | Crohn's/Colitus |
| Type Of Surgery : | Ileostomy |
| Comments: | I've had Crohn's/colitus for 12 years. I was advised in 2006 to have my entire colon removed. I stuck it out a few more years. But alas the drugs aren't working any longer and now it's time. The doctor says it's inevitable I will live longer then my colon:/ I'm very fearful about this surgery. Yet after reading your pages I'm a little less. Thanks for taking the time to write your thoughts and all this wonderful info. The page about what happens before,during and after the surgery had me crying like a baby but ha ha it made me realize I can do this. I want a life back:]I'll probably schedule my surgery for January 2010. Ugh What a way to start the new year...But hey perhaps it will make life better. No more needing to go to every bathroom on the planet ha ha Thanks again. Stacey |
| Name: | Toni Shearer |
| E-mail address: | shearertoni@yahoo.com |
| Country?: | US |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Brooke ilestomy |
| Comments: | Had surgery when I was eight (1978 for Colitis. After developing the rashes I had the BCIR done in 1999 but had chronic pouchitis in spite of the anitbiotics. The BCIR was reconstructed 3x until we finally gave it up. Am back to the Brooke and very healthy. Combat the rashes with Hibiclens (works very well.) Am very active...ride horses and race Outrigger canoes. Life is good!~ |
| Name: | sandy |
| E-mail address: | sshornstein@gmail.com |
| Country?: | usa |
| Type Of IBD: | ulcerative colitis, krohns |
| Type Of Surgery : | ileostomy |
| Comments: |
I've just celebrated 11 years of being cancer free!! I've never felt better. I enjoy your site. thanks sandy |
| Name: | Catherine |
| E-mail address: | catspaz11@aim.com |
| Country?: | USA |
| Type Of IBD: | Hirschsprung's |
| Type Of Surgery : | Ileostomy |
| Comments: | My 4 year old daughter was born with Hirschsprung's Disease. She had a colostomy for the first 9 months of life and had it reversed. A little over a year ago she had an ileostomy done because she was in the hospital so much. It will hopefully be reversed in the next year, but the outcome from giving her time to grow and be healthy is not known, only time will tell. What a great site! Thanks |
| Name: | Ravi Shukla |
| E-mail address: | ravinmargo@hotmail.com |
| Country?: | INDIA |
| Type Of Surgery : | Colon Cancer |
| Comments: | I would like to sign in as a Member, but I am not able to do so. 5 out of 5 login attempts. HOW do I go about it? |
| Name: | Marcella Taylor-Billing |
| E-mail address: | redrumian@yahoo.co.uk |
| Country?: | London UK |
| Type Of IBD: | |
| Type Of Surgery : | Illeostomy |
| Comments: | just found this site, and it's great!
I have had my ostomy since 1986 so well used to it... that doesn't mean I like it. but I have got it so just get on with my life, as there is nothing I can't do. I have been to OZ twice to see my sister also to the US and had many holidays on the contiment so travel is no problem, I have never missed a days work since I had my surgery, but thank goodness I have now retired and enjoy relaxing taking life day by day. However I have not been able to find a companion my husband died in 97 from cancer and life gets lonely somtimes so why not drop me a line would love to hear from anyone thanks from Marcella |
| Name: | Sandy Fulgoney |
| E-mail address: | samlee324@comcast.net |
| Country?: | USA |
| Type Of IBD: | ulcerative colitis and anal carcinoma |
| Type Of Surgery : | will be having it soon |
| Comments: | I have to make a decision over the next few days to either have my colon removed when the rectum and anus are removed, or to keep it and remove the rectum and anus only. I've had ulcerative colitis for 15 years and it was generally mild to moderate. I'm talking to the surgeon next week and need to consider what option is best for my future. |
| Name: | Tiana Senn |
| E-mail address: | missscoobyca@yahoo.com |
| Country?: | USA |
| Type Of IBD: | Crohn's Disease |
| Type Of Surgery : | A few, but soon for "the BIG one"! |
| Comments: | Greetings all! My husband was surfing the net for ostomy info and came across this site. I love it!!! =) I think I might qualify as an honourary member of the ostomy club, as I have a pouch, but not a stoma...YET! lol Let me explain. I have Crohn's Disease, and I had a second abscess connected to a fistula pop up and had a drainage tube inserted. Due to the radiologist's incompetence and a back-up situation, I ended up having to have my tube exit my body and be inserted in an ostomy bag! I am currently STILL waiting for the infection and drainage to stop/reduce enough to have my small bowel resection surgery. My current surgeon (who I finally get to replace - HOORAY!!!!) keeps telling me it is VERY likely I will need the temporary ileostomy after surgery. I am looking at my current situation as "in-training" for the actual ileostomy! One of my fistula openings is just an open hole we put bandages over, but the new one is the "ostomy" one. I can relate to a lot of the ostomy humour and stories. The one thing that does totally suck though, is that since it was not a planned osotmy, it is on my side! Instead of more towards the front area, mine is about where your elbow falls at your side! Makes it impossible to lay down, sleep, wear a seat belt in the car, and wear jeans for sure! I am actually looking forward to the ostomy so it can be in a more convenient place! lol Sorry this was sooo long, but I am excited to speak to some people who understand what I am dealing with because it's not like you can spot "us" in a crowd and strike up a conversation! lol Looking forward to getting to know everyone! Thanks! =) |
| Name: | James W. Horning |
| E-mail address: | shorning2@aol.com |
| Country?: | USA |
| Type Of Surgery : | ostomy |
| Comments: | I was told six years ago I had colon cancer. After 27 days of radiasion, 18 weeks of chemo, and three surgerys I'm still up right and taking in fluids. I got my first ostomy six yrs ago. Had it 4 month and the doctor was able to reverse it so I spent the last 5 years with nothing. Then July 6, 2009 I callaps and was rushed to the local hospital. They installed a new ostomy bag above my belt line I was unconscious for 4 weeks and in a recovery home for 5 weeks. Just another leaning expernce. I finally got to see the orginal doctor from six years ago. He hopes to reverse my ostomy again as soon as the stomack wound heels.
But I'm 70 yrs. old and there is some risk at that age. Loved your story, being positive is the most important thing you and I can do/be. |
| Name: | PEARL |
| E-mail address: | pib925@yahoo.com |
| Country?: | USA |
| Type Of IBD: | ?urostomy? what is "IBD" |
| Type Of Surgery : | urostomy |
| Comments: | I'm a recent osomate, however, I have been in hospital the past six months because of c-def infection I contracted in hospital after my surgery. I almost died. Now I'm out of hospital and just now beginning to cope with my "bag". I'm glad there are others I can talk to about my urostomy. |
| Name: | shirley |
| E-mail address: | maudkitty40@aol.com |
| Country?: | usa |
| Type Of IBD: | colostmy |
| Type Of Surgery : | colon |
| Comments: | I have had my ostomy since feb 2005
and had to have a repair in nov 2008 due to an infection i have a largh hernia that really make my life painful. i really can't go to dinner and a movie becauce as soon as i eat i need to go empty bag' however i try to keep a postive attutidue 90% of the time at times i get depressed but it usually last 20 or 30 minutes. |
| Name: | Helmien Joubert |
| E-mail address: | helmienj.joubert@gmail.com |
| Country?: | South Africa |
| Type Of IBD: | Ulcerative colitis |
| Comments: | Just followed your link from Healingwell forum.Shaz,you are absolutely amazing,it was a priviledge reading your story,love Helmien |
| Name: | mirrianmirrianz |
| E-mail address: | mirrianz@hotamail.com |
| Country?: | China |
| Comments: | Hi,Shaz,How are you,My hat is off to you for having the courageto post your experiences which no doubt are going to help people in similar situations.By the way,I am a oncolegy nurse,and I need to understand how to support my Clients with stoma as well.Keep in touch. |
| Name: | fareeha |
| E-mail address: | atherandfareeha@yahoo.com |
| Country?: | usa |
| Type Of IBD: | ulcerative colitis |
| Name: | mike |
| E-mail address: | mike@wimanx.net |
| Country?: | england |
| Type Of Surgery : | urostomy |
| Comments: | hi shaz , l have had my urostomy all my life 55 yrs , so know no difference, have seen so many changes in the pouches , bags etc . does not stop me doing nearly anything . if anybody would to email , would love to hear from you . tell me what equip you use etc , take care,
l am lucky l do not have to pay for any of my products . mike. |
| Name: | michelle |
| E-mail address: | rustonlanigans@bellsouth.neu |
| Country?: | USA...louisiana |
| Type Of Surgery : | ileostomy/j pouch |
| Comments: | Hey shaz!!! Long story ...I will try to make it short. Dx'd 4-10-07 w/rectal cancer. Had numerous treatments...chemo, radiation, surgeries.(5 in 6 mos.) chemo caused blood clot in upper vena cava so stopped that. Had main surgery on 7-24-07...LAR, j-pouch, and ileostomy. I never could get used to that thing! Leaks, painful and frequent changes.had reversal 10-5-07. 1st 6 mos. I stayed in the tub most of the time trying to relax my bottom. It forgot reality fast and it gives me trouble to this day. If cancer returns I'm screwed! Can't take chemo again and will NOT go through that again!!! All this is on top of an earlier dxs of m.s. I am happy that you have had better luck than I did. Thanks for letting me share. |
| Name: | barbara |
| E-mail address: | bsch1@msn.com |
| Country?: | USA |
| Type Of Surgery : | ileostomy |
| Comments: | recently done (5 months ago) and just starting I think to get the hang of it. thanks for your website Barbara |
| Name: | Nancy Heard |
| E-mail address: | dnheard@brazzosnet.com |
| Country?: | USA |
| Type Of IBD: | colostomy |
| Comments: | Does anyone use Synergy Esteem by Convatec? I use the closed end pouches and having trouble with the adhesive not being strong enough to hold anymore. I have used these for 4 years with no problems but now, seems as though they are cutting corners by not using the same quality of the adhesive. I am now a proud owner of 4 boxes of 60 each and $124.00 each tp replace. I called Convatec and they sent me 10 replacement pouches which didn't quite cut it. I'm at my wits end to try and figure this one out and it is so depressing having no sense of security when I go away from home and even in my home, especially during the night. I don't want to quit Convatec mouldable wafers because other brands eat my peristomal skin up. Thanks, Nancy in Texas |
| Name: | Mark McBride |
| E-mail address: | ostyclean@gmail.com |
| Homepage URL: | http://www.ostyclean.com |
| Country?: | USA |
| Type Of IBD: | RECTAL CANCER |
| Type Of Surgery : | COLOSTOMY |
| Comments: | Hi Shaz,
Just though I would drop you a Quick story. I had my surgery in 07 but the fun was just beginning. Over the last 2 years I have had my cancer show up in my lungs,had 2 bad ports, one port let a staff infection into my blood stream that lead to a mass growing in my heart that lead to open heart surgery. As for right now the infection and heart surgery are behind me and i only have two more treatments to go for the cancer. I know so many people go through years of pain and suffering with colitis, crohns and other diseases so my story is not special just a little different. |
| Name: | anna brejchova |
| E-mail address: | lumpik@hotmail.co.uk |
| Country?: | england |
| Type Of Surgery : | ielostomy |
| Comments: | hi my name is anna, i had my ielostomy done on 25.4.2009, after years of sufferin with abdominal pains, constipation and vomiting. im undergoing tests to find out what exactly is the problem, so far i have been diagnosed with hyper mobile joints which make my connective tissues too floppy, so nothing seems to work. since i had my surgery i hd a skight improvement but now for past 2 months pains AND VOMITING IS BACK AND SEEMS TO BE WORSE. i find it very hard to deal with my stoma as it affected me a lot, but i know im not the only one just hope i get to know what exactly is wrong with me and see if there is something which could be done for me, i wanted to thank u for your lovely page it gave me hope to fight this. i wish evrybody the best for them, as i understand what it is like to live with it. take care and thank you
|
| Name: | Azelin Mohamed Noor |
| E-mail address: | azelinmohamednoor@yahoo.com |
| Country?: | Malaysia |
| Type Of IBD: | SLE |
| Type Of Surgery : | Ileostomy |
| Comments: | Now I am in a period of depression and fear. Scheduled for a reversal. My husband almost left me while i was recovering from the ileostomy because of a misunderstanding with my family. I fear what will happen next. However reading what you went through gave me strength and confidence. I know our battle is not over and what is important is how we perceive life and challenges. Thank you for sharing with all of us something very intimate and encouraging. |
| Name: | Frances |
| E-mail address: | fd.miller@ntlworld.com |
| Country?: | Hertfordshire - UK |
| Type Of IBD: | leostomy |
| Name: | Rhonda Harris |
| E-mail address: | robrhonharris@aol.com |
| Country?: | USA |
| Type Of Surgery : | Ileostomy |
| Name: | Melinda |
| E-mail address: | Melmorgan12@gmail.com |
| Country?: | USA |
| Comments: | Hi Shaz,
Iam actually a nursing student in Florida, and I ran across your page in studying for a test that I have tomorrow on colostomies. I just wanted to let you know that I found your site to be very informative and a great tool for me so I will have some sort of actual understanding when I do have a colostomy patient. Take care |
| Name: | kelly Ingleson |
| E-mail address: | kellyingleson@hotmail.com |
| Country?: | England |
| Type Of IBD: | Severe large bowel constipatiion, due to large bowel defect |
| Type Of Surgery : | Ileostomy |
| Comments: | I am 29 years old and have recently just had surgery 3 weeks ago, so I am new to this and am still getting used to my stoma and body issues. I have to say I am alot better and have no bowel pain or bowel obstructions and don't take 60 tablets a day anymore, so it is a bonus. Will have to make a decision at some point to have it reversed and probably go back to the way I was or have permanent ileostomy.
Previous operations 2004 - Sub-total colectomy and ileo-anastomosis. 2007 - Laparotomy 2009 - Laparotomy and formation of ileostomy. |
| Name: | stephen lafferty |
| E-mail address: | stephenlafferty02@yahoo.co.uk |
| Country?: | ireland |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | none |
| Comments: | just stumbled across your page, an find the information very helpful,as of yet i have been fortunate not to have any surgery but its been close. i'm a slow reactor to the medications that i have been given but hopefully over time i will continue to get in a better condition! |
| Name: | Deborah Quick |
| E-mail address: | Quickdeborah@aol.com |
| Country?: | England |
| Type Of Surgery : | Ileostomy |
| Comments: | I have had an ileostomy since November 2002, it saved my life, can be a pain at times, but I am alive thats all that matters. I'd like to chat to anyone who been through it or the other type of colostomy, we are all in the same boat.
|
| Name: | karen |
| E-mail address: | karensrainbow4@hotmail.com |
| Country?: | USA |
| Type Of IBD: | UC |
| Type Of Surgery : | Ileostomy |
| Comments: | Hi all! I write in every once in awhile. My heart is sad for those who cannot find the joy in life. We could have died, but we didn't. Instead, we received life, and the only change is a tiny flange and pouch, and how we use the facilities. My surgery was 22 years ago, almost to the day. I am 42 years old, and I love life out loud! I cliff hike, scuba dive, lift weights, do pilates, travel, ride horses... My life wasn't saved so I could feel bad about myself or my situation, or to hide myself away. I take care of my body and my appearance, I take pride in who I am and how I present myself to the world, and live as if each day is a gift, because it is. Am I in love with having the ostomy? Oh, heavens, no! BUT, I do not dwell on the ostomy, but the life that was given to me because of the surgery. To those who live in joy - you have my admiration. To those suffering due to the change - you remain in my thoughts, and I hope you will accept what cannot change, and learn to love all of the other aspects of your body and your world. The ostomy wasn't a choice for most of us, but how we live our life with the ostomy is! Blessings, dear ones! |
| Name: | Ben Osato |
| E-mail address: | bosato@primus.ca |
| Country?: | Canada |
| Type Of IBD: | colon cancer |
| Type Of Surgery : | colostomy |
| Comments: | Ben Osato |
| Name: | Ben Osato |
| E-mail address: | bosato@primus.ca |
| Country?: | Canada |
| Type Of IBD: | colon cancer |
| Type Of Surgery : | colostomy |
| Comments: | I found your site in Contact Magazine published by
Convatec Canada. I have had a colostomy since 1982. Hope you the best with your site. Best Regards, Ben Osato |
| Name: | Paddy (Pamela)Quinn |
| E-mail address: | paddyquinn12@btinternet.com |
| Country?: | Ireland |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Ileostomy |
| Comments: | Hi, really ejoyed your site...have had my ileostomy since Fri Sept 13 1968 -so "His Lordship" is just gone 41- when I was 17, having been ill since I was 12. Would recommend the surgery to anyone. Best of luck... keep the fun going...it's the only way to live. |
| Name: | john james marr. |
| E-mail address: | john.marr4@bigpond.com |
| Country?: | Australia |
| Type Of IBD: | u/colitus |
| Type Of Surgery : | s pouch procedure |
| Comments: | Hi Shaz.
We have corresponded before. I saw the Crohnes and Colitus support group post yesterday and there were a couple of people called Dazza and Foxy that were asking for info about J pouches. I have had and S pouch for u/c since 1981 and have not had too much trouble with it ,I believe I was one of the first pouch ops done in Ausralia. I could not log onto the support web site so If you like could you please give them my email address if they would like to ask me any questions. Best Regards. jj marr. |
| Name: | john marr |
| E-mail address: | john.marr4@bigpond.com |
| Country?: | Australia |
| Type Of IBD: | u/c |
| Type Of Surgery : | s pouch procedure. |
| Name: | Emmie Lou |
| E-mail address: | glenandloudavis@windstream.net |
| Country?: | USA Georgia |
| Type Of IBD: | Cdiff |
| Type Of Surgery : | ileostomy |
| Comments: | I was totally unprepared for this!!! I went in the hospital for a total hip replacement,having had a routine colonoscopy nine days prior. The day after my hip surgery I started getting sick. Things went from bad to worse, I wound up in ICU after going septic (renal failure, heart problems body shutting down) Exactly one week after my hip surgery they did emergency surgery to remove my entire colon and a small portion of my small intestines thus leaving me with an ileostomy. It has been almost nine month ago now and i still am not able to go back to work. It is a completely different life style for me. I have always worked ,I was working sixty plus hours a week and loved it now I do good to walk to the mailbox and back. AS soon as I am able i want to have the BCIR surgery I think this will be the best for me. I hate having this appliance. I keep a yeast infection under my wafer all the time and I haven't found any way to deal with it as if you do the crusting then you can't keep the wafer on. Any ideas from you ostomates thathave been at this for would be very welcomed
God Bless and good luck to you all |
| Name: | Marion Brugmans |
| E-mail address: | brugmans@frontenac.net |
| Country?: | Canada |
| Type Of Surgery : | kock pouch for a bladder |
| Comments: | Hi ..I read your story and am very proud to know you.
I have had osomy in my side for a bladder for 13 years( kock pouch inside). I am not as young as you. I do not think I can understand all you have been through. I know it was very hard to get used to. I now have a stone which they say is the size of a tennis ball in this pouah. An operation is in the near furture. I hope they can repair this. Your story is sure a lift to those of us who think we are the only one with these type of problems. I wish you all the very best. May all good things come your way...Marion |
| Name: | Patty |
| E-mail address: | maddoxgardener@aol.com |
| Country?: | USA |
| Type Of IBD: | Crohns |
| Type Of Surgery : | pernament ileostomy |
| Comments: | Hi, I had my pernament surgery December 2006, before that I had my large colon removed. Continued with problems with J-pouch, Had a ileostomy,I thought for a year I had a gaurdian angel, I was able to have my ileostomy reversed. Best day of my life! a year and a half later I had an emergency ileostomy surgery, which became pernament with no hope of ever going away. I am having surgery in November because I continue to have problems with alot of pain. I know alot of you think an ileostomy was great for your situation.I hate everyday of it. I wouldnt wish it on my worst enemy. |
| Name: | Veronica Mackinnon |
| E-mail address: | vhamack@yahoo.com |
| Country?: | U.S.A. |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | ileostomy |
| Comments: | Great meeting you and happy to see this great attitude and i agree with you about attitude and how you accept things. I had my surgery at 15 yrs. old, 5 days after i turned 15., many yrs. ago in 1965,; i am 59 yrs old. Tried the continent ostomy awhile but it failed; i was dissapointed ; but glad to have it out and be healthy again. I made a good friend at the hospital who was from England and he had a sister who had the same surgery and she lived in australia. E-mail me anytime and will write more later. eronica |
| Name: | rose-bud41 |
| E-mail address: | bevck41@gmail.com |
| Country?: | australia |
| Type Of IBD: | ileostomy |
| Type Of Surgery : | hartmans procedure |
| Comments: | hi to all fellow ostomates. i've been an ostomate for 8 years now but to me it feels like forever!!!!!! just having a look at this website i was told about by a fellow ostomate. now all i have to do is join-up!!!!! cheer's all. rose-bud41..... :)))))))) |
| Name: | jasmine cook |
| E-mail address: | bevck41@gmail.com |
| Country?: | australia |
| Type Of IBD: | ileostomy |
| Type Of Surgery : | HARTMANS PROCEDURE |
| Comments: | HI TO ALL IM NEW TO THIS SITE TODAY. I HAVE BEEN AN OSTOMATE FOR 8YEARS NOW,BUT FEELS LIKE A LIFETIME!!!!!!! I HAVE JOINED THIS SITE BECAUSE A FELLOW OSTOMATE TOLD ME TO TRY IT OUT AS SHE SAY;S IT;S THE BEST SITE EVER. COME AND CHAT TO ME AS I COULD REALLY DO WITH SOME TIP'S OK. CHEER'S. ROSE-BUD40...... :))))))) |
| Name: | Rob |
| E-mail address: | pinkfloyd@cbmma.net |
| Country?: | USA/NL |
| Type Of IBD: | UC |
| Type Of Surgery : | Ileostomy |
| Comments: | Life goes on!!
This is what I could not say before my surgeries. Now I can. For those who face the same: life DOES go on! There are many uncertainties I read, and Sha'z site is a good start to overcome these. No need to worry. You will live your life the same way with a stoma, and if you need a support buddy, feel free to contact me. I am very active, and always interested to hear about ostomy products that are holding up well. I swim, lay under cars, ride bikes, play sports, you name it. Having good experiences, than let me know about it! Thanks! Rob |
| Name: | Paul Foulger |
| E-mail address: | paul.foulger@btinternet.com |
| Country?: | England |
| Type Of IBD: | Permanent Colostomy |
| Type Of Surgery : | Perineal Resection |
| Comments: | This is a great idea, there are so many of us colostomates that our voice can be so strong and effective, we just need to be heard to let the world know that we are not freaks and live normal lives |
| Name: | Paul Foulger |
| E-mail address: | paul.foulger@btinternet.com |
| Country?: | England |
| Type Of IBD: | Colostomy |
| Type Of Surgery : | Perineal Resection |
| Comments: | This is a great idea, there are so many of us colostomates that our voice can be so strong and effective, we just need to be heard to let the world know that we are not freaks and live normal lives |
| Name: | Paul Foulger |
| E-mail address: | paul.foulger@btinternet.com |
| Country?: | England |
| Type Of IBD: | Colostomy |
| Type Of Surgery : | Perineal Resection |
| Comments: | This is a great idea, there are so many of us colostomates that our voice can be so strong and effective, we just need to be heard to let the world know that we are not freaks and live normal lives |
| Name: | Jean |
| E-mail address: | jcarzz@yahoo.co.uk |
| Country?: | Scotland |
| Type Of IBD: | Crohns |
| Type Of Surgery : | Ileostomy |
| Name: | Georgie Williams |
| E-mail address: | geo10@blueyonder.co.uk |
| Country?: | UK |
| Type Of IBD: | Permanent |
| Type Of Surgery : | Colostomy. |
| Comments: | Hi, like you I too suffered from ulcerative colitis, crohns and diverticulitis for many years. Finally at 65 yrs, things became so gross it was impossible to go on as I was, hence the op. Things did go badly wrong, but now I have never felt better, had a wonderful surgeon and its great to be alive.
I think your poem re `attitude` is fantastic and I couldn`t agree more. Hope you get loads of comment, good luck. Georgie |
| Name: | Michael Hassett |
| E-mail address: | atygla@aim.com |
| Homepage URL: | http://www.mhassett.com |
| Country?: | USA |
| Type Of IBD: | Ulcerative colitis |
| Type Of Surgery : | Jpouch then permanent Ileo |
| Comments: | Love the page, you expresses all my sentiments exactly...........Love Michael |
| Name: | AmberWytch |
| E-mail address: | amberwytch@hotmail.com |
| Country?: | USA |
| Comments: | My father had surgery a year and half ago to remove colon cancer and ended up with a ostoma bag. We're having a problem with it as it was placed wrong. Now we are trying to find him some dress clothes that he wear. For the last year, he's been stuck wearing jeans that are a size or two too big and sweats. If you have any info on where to find dress pants with a lower than normal wasteband it would be wonderful!! |
| Name: | Brian |
| E-mail address: | brian100@iprimus.com.au |
| Country?: | Australia |
| Type Of IBD: | Chrohns/Ulcerated Colitis |
| Type Of Surgery : | Colectomy |
| Comments: | When I was 26 I was told I had Ulcerated Colitis and was put on Prednisone and Salazopyrin for 14 years until I was rushed to hospital to have my large bowel removed. There is a lot more to the story but I thought a quick summary is enough.
The surgeon said I had Chrohns disease but in the end the operations to save your life is the same. I have an Ileostomy and live an active life, surfing etc. If anyone needs to talk or needs advice, send me an email. |
| Name: | marsha rogers |
| E-mail address: | m_cam_33@sbcglobal.net |
| Country?: | kansas, usa |
| Type Of IBD: | crohns |
| Type Of Surgery : | havent had one yet |
| Comments: | my dad has a colostomy since 82. I think im going to have to get one 2. what am I going to b able to wear like shorts and jeans and all i hope i can wear them still. My dad wear overalls all the time since his. If u can help please do thanks marsha |
| Name: | JODI SCHIMINSKI |
| E-mail address: | MARK.SCHIMINSKI@QWEST.COM |
| Country?: | USA |
| Type Of Surgery : | COLON AND RECTAL |
| Comments: | I WILL BE HAVING A COLON RECTAL SURGERY ON THE 8TH OF SEPTEMBER TO REMOVE MY CANCER IN THE RECTUM AREA I WILL BEHAVING A OSTOMY OF SOME SORT DO NOT KNOW WHICH ONE YET WAITING TO SEE RECTOM SURGEON ON THE 2ND THIS WEEK I DO NOT KNOW HOW I AM GOING TO REACT TO HAVING A BAG ON ME FOR THE REST OF MY LIFE I HAVE AN UNDERSTANDING HUSBAND WHO WILL BE BY MY SIDE THROUGHOUT IT ALL ANY THING I NEED TO KNOW ON HOW MY SURGERY WILL GO WHAT TO EXPECT AND ALL THE THINGS THA T GO WITH HAVING ONE OF THESE STOMAS THANKS |
| Name: | Bob |
| E-mail address: | bob_r_61@yahoo.com |
| Country?: | USA |
| Type Of IBD: | colorectal cancer |
| Type Of Surgery : | proctocolectomy |
| Comments: | Just poking around the internet looking for new products and other people who are in a similar predicament. You really can't talk to anybody else about your situation.
Good luck to all |
| Name: | Rebecca Craig |
| E-mail address: | bec_5383@hotmail.com |
| Country?: | Australia |
| Type Of IBD: | CD |
| Type Of Surgery : | Future Colostomy |
| Comments: | Hi Shaz
I was forwarded on here from the IBD Support site. Congratulations on the page, the hit counter says it all. Looking forward to gaining much information before and after my upcoming surgery. Bec (LilBec83) |
| Name: | Janet Adams |
| E-mail address: | seidwinder@charter.net |
| Country?: | USA |
| Type Of IBD: | vaginal wall cancer |
| Type Of Surgery : | transverse loop colostomy |
| Comments: | Hi Shaz!! Thank you for this website. I just had my colostomy on 5/22/09, so I am a new comer at this interesting journey I am on. I too have named my stoma: Her name is Grace. She is the MOST beautiful little one. After she arrived, it seems I have more energy and am no quite so tired as I was before. Grace came about because I had vaginal wall cancer in 1999 and had radiation treatments from January to March of 2000. I developed radiation proctitis and then my sigmoid colon closed off. They couldn't get a probe through to do a colonoscopy. The Doctor said to take out the colon, so we did. Still am learning but look forward to each new and exciting day. |
| Name: | Francine |
| E-mail address: | lvsdyln@comcast.net |
| Country?: | USA |
| Type Of IBD: | Crohn's |
| Type Of Surgery : | ileostomy |
| Comments: | i came across your site in the strangest way. i was on my way to another site & somehow i landed here! i must have an angel looking out for me. i have had crohn's disease since i was 16 & had 8 surgeries before the ileostomy. it will be a year next month. still adjusting. went to the UOAA national convention earlier this month & it was awesome. it really helped & i met the most wonderful people ever. it was life altering, to say the least. looking fwd. to visiting your website. thanks for starting it. |
| Name: | Wendy Smith |
| E-mail address: | russandwendy@sympatico.ca |
| Country?: | Canada |
| Type Of IBD: | Rectal Cancer |
| Type Of Surgery : | Colostomy plus 3 follow ups for complications |
| Comments: | Thanks for your site. As with most troublesome things in life it's made easier knowing you are not alone. |
| Name: | Doreene Jardine |
| E-mail address: | ufoundsarah@ns.sympatico.ca |
| Country?: | Canada |
| Type Of IBD: | Cancer |
| Type Of Surgery : | colostomy |
| Comments: | I am happy that i stumbled onto your site as i was alot older than you and it makes me glad to know you are doing so well |
| Name: | Catherine Jane Dawes |
| E-mail address: | cathy-dawes@hotmail.com |
| Country?: | 13 |
| Type Of Surgery : | Ileostomy |
| Comments: | Hi Shaz,
My name is Cathy, I am 52 years old and had my surgery on 23rd April this year after throwing a blood clot in the main artery to my bowl and collapsing with sepsis, multi-organ failure, pneumonia and multiple other problems. Was in a coma for 5 days, they didn't think I'd make it. It took them 3 weeks to have a look at my bowel. They couldn't find the constant cause for the sepsis and MRSA, until they called in the colorectal team, who did a laparaotomy which resulted in me losing my large bowl, which was dead and gangrene basically. Part of my small bowl was removed as well, but thankfully not to much. I was not aware of the surgery or the trachey I was given the day before the resection for a number of weeks. In all I was in hospital 15 weeks, 7 in ICU. A big ordeal when I hadn't even been ill. I have moved from Sydney to Tweed Heads last week to live with my daughter and grandchildren. I am learning to live with the bag and its' appendages (seals etc). It's great to see your sight and to read your story. I haven't spoke to any other ostomites as yet, but fully intend to do so. I have to cope with this and move on. This I will do. Would love to hear from you Shaz, and anyone who reads this and would like to chat. |
| Name: | Priscilla Cockerell |
| E-mail address: | leeorpriscilla@aol.com |
| Country?: | USA |
| Type Of IBD: | diverticulitis |
| Type Of Surgery : | colostomy |
| Comments: | A year ago this month I had a laparoscopic sigmoidectomy (due to diverticulitis) which failed after 6 days. I developed peritonitis and had to undergo emergency surgery which resulted in a colostomy and ultimately a colonic fistula and a large abdominal hernia. I had many many complications - between May 2008 and October 2008 I spent 51 days in the hospital and was terribly debilitated for months. In Feb. I found a wonderful colorectal surgeon. Last month I had an 8 hour surgery during which he removed a large amount of scar tissue, took down the colostomy, performed a partial proctectomy to remove the fistula and repaired the hernia. I'm happy to say that I am doing great - all systems are "go" (pun intended!) and I am well on the road to full recovery. What I particularly want to share is the type of colostomy bag I used. I was sent home from the hospital with the kind of bag which must be cleaned (squeezed out from the bottom). I just hated it and then discovered that disposable bags existed. I told my husband that I wanted a year supply of disposable bage for Christmas - forget the bling!! The disposable bag was a huge improvement on the "yuck" factor but the bag itself had to be thrown away, so that required lots of ziplock plastic bags in which to put it and making sure it went immediately into the trash into the garage - no matter how much I wrapped the bags, they made their presence known. Then -eureka! - I found out that liners existed for the disposable bags! They are thin plastic bags, and when full, can simple be carefully pulled out of the disposable bag and flushed. What an improvement! I changed my bag every 4 days, normally, and the disposable bags, with the use of the liners, almost always lasted for the 4 days. I just wish someone at the hospital had told me about this much earlier....I was too ill to go to an ostomy clinic for a couple of months, where I finally found out about the liners. They made life so much easier and more pleasant. |
| Name: | Lei Lane |
| E-mail address: | Leilpt@yahoo.com |
| Country?: | USA |
| Type Of IBD: | Crohns |
| Type Of Surgery : | Ileostomy |
| Comments: | So glad to find this site. Grateful for holistics, that totally work for me. I'm a Physical Therapist, 44 y/o, still able to help others and keep-on-keepin on! Working out daily, the spiritual stuff, and living oceanfront in FL ( facing the would-be hurricanes head on)makes my body's challenges wayyyy ok!! Looking forward to meeting those out there who share the common, and maybe not so common daily experiences. |
| Name: | George Bishop |
| E-mail address: | gpbandsbb@aol.com |
| Country?: | usa |
| Type Of Surgery : | urostomy |
| Comments: | Just found your page I had surgery on 4/1/02 and with the help of UOAA am doing very well |
| Name: | Elly |
| E-mail address: | EllyChlec@aol.com |
| Country?: | UK |
| Type Of IBD: | UC |
| Type Of Surgery : | Ileostomy |
| Comments: | Hi Shaz
It is great to read through your website, really inspiring! My fiance has recently became an ileostomate and I have been trying to research information/support for this. It is really difficult to come to terms with it at the moment as he went from a fit, healthy 36 year old with no past medical history to being diagnosed and in theatre within a week of each other so we had no time to consider what was to happen. But by reading this website it has inspired me to remain positive, which I can pass on to him and we can start to get on with the rest of our lives together! Thank you |
| Name: | MARIE JAHN |
| E-mail address: | chaqita46@gmail.com |
| Homepage URL: | http:// |
| Country?: | United States |
| Type Of IBD: | ILIOSTOMY |
| Comments: | HI SHAZ, I HAD MY ILIOSTOMY SURGERY IN 07/07 AND STILL HAVE DO NOT LIKE IT. I HAVE A RARE INCURABLE ILLNESS WHICH LED ME TO HAVE BOWEL OBSTRUCION ONE AFTER ANOTHER. THE ONLY OPTION WAS TO HAVE THIS PROCEDURE DONE PERMANENTLY. NOW I AM DEALING WITH BUMPS ON MY STOMA THAT ARE EXTREMELY PAINFUL WITH PASSING OF STOOL AND EVEN IF MY BAG TOUCHES MY STOMA. TWO SUGEONS AND MY GI MD DO NOT HAVE AN INCLINATION OF WHAT THESE PAINFUL BUMPS COULD BE, SO I AM GOING TO BE SCHEDULED NEXT FOR A BIOPSY. PLEASE KEEP ME IN YOUR PRAYERS AND ANY ONE ELSE THAT READS THIS. I BELIEVE IN THE POWER OF PRAYER. I ALSO AM GOING TO JOIN A SUPPORT GROUP SOON HERE IN WAUKESHA, WI TO HELP WITH RELATIONSHIP SHYNESS SINCE I GOT THIS BAG. TAKE CARE SHAZ. |
| Name: | Paul Nason |
| E-mail address: | doctor_prophet@hotmail.com |
| Country?: | UK |
| Type Of IBD: | U/Colitis |
| Comments: | Had my baggie for 3 years, finally got rid and had an internal pouch constructed this year. It's a lot harder than having the bag. i kinda miss it. |
| Name: | deb |
| E-mail address: | dreamerd7@yahoo.com |
| Country?: | usa |
| Type Of Surgery : | ileostomy |
| Comments: | Hi,
I am a new ileostomate and I am trying to get adjusted to the habits of my bag. I am better than I have been in two years and am happy about that but some days I really do not like my ostomy. I am happy to have found your site and your story. Thank you for being there. Deb |
| Name: | Shayne |
| E-mail address: | shaynefuxa@yahoo.com |
| Country?: | US |
| Type Of IBD: | none |
| Type Of Surgery : | Colostomy to divert due to hysterectomy |
| Comments: | Hello, My name is shayne and i came across this while looking for clothing of ostomeetes. I had to have my since May 27 /09 during a hysterectomy that didnt go so well, he aslo put 2 fistuals in my bladder. I was on the hunt for some clothing that would hide my new friend. Since i should be lugging this around for another year
Thanks |
| Name: | Julia in Georgia (USA) |
| E-mail address: | jpetrides@hotmail.com |
| Country?: | USA |
| Type Of IBD: | Ulcerative Colitis |
| Comments: | I haven't had surgery yet, but after 35 years of putting up with UC, which is getting really bad now, I'm scheduling an ileostomy for next month. I got the term "ostomates" from the Mayo Clinic webpage, which led me to your page. It looks very helpful! |
| Name: | ALONDRA |
| E-mail address: | ALONELSON100@YAHOO.COM |
| Country?: | USA |
| Type Of Surgery : | LVN |
| Comments: | HI SHAZ. I'M A NURSE. I HAVEN'T AN OSTOMY BUT I CAN IDENTIFY WITH YOU AS I CARE FOR MANY PEOPLE WHO DO. THANK YOU FOR SHARING YOUR PERSONAL JOURNEY WITH ME AND I WOULD LOVE TO DIRECT MY PATIENTS TO YOUR WEB SITE FOR ENCOURGEMENT.
SINCERELY, ALONDRA |
| Name: | Patti Iverson |
| E-mail address: | randpi2@charter.net |
| Country?: | USA |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | ileostomy |
| Comments: | Just thot I'd check in again and see whassup after 5 years. I was constantly on your site years ago, right after my surgery and it was a godsend to me then--so God bless you, as I can obviously see He does! Thanks for being you and using your gift, for it is that, you know! Helping and bringing folks together with a common bond and a common need: connection! Love, Patti Iverson in Medford, OR |
| Name: | Leda Diedrich |
| E-mail address: | musicmaker01@tulsacoxmail.com |
| Country?: | United States |
| Comments: | Hi, Shaz -- I wanted to thank you for your wonderful article re: ostomies! I'm a medical records coder ... that means I read medical records & assign number codes to the diagnoses & procedures related to hospital stays. I code surgeries involving ostomies all the time, but your article gives a very informative (but readable) description of the many types of ostomies. Thanks again, and God bless you!
Leda Diedrich |
| Name: | Michael Collins |
| E-mail address: | Nikkicole39@yahoo.com |
| Country?: | USA |
| Type Of IBD: | ileostomy |
| Comments: | Hi shaz! My name is Mike but my friends call me Nikki. I have a complete ileostomy. I was the first child in south carolina to ever have that type of surgery. It was done in 1966. I was 3 years old. Today, July 14, is my birthday! I am 46 today. So I guess that makes me and you veterans at this. Keep in touch. |
| Name: | PETER KARANJA |
| E-mail address: | petkaran8@aol.com |
| Country?: | USA |
| Type Of IBD: | Urostomy |
| Type Of Surgery : | ROSTOMY |
| Comments: | Dear ostimies,I have a urostomy since 2001,It has not been an easy way but God is good,with His strength we shall endure and overcome.Am a born again christian and have derived alot of strength from the word of God.He has been my hope and source of comfort when nobody can understand my likages,and even when i have to change it more than once a day,and all we as ostomites undergo anyboby out there understand what I mean?God bless you all. |
| Name: | Leigh |
| E-mail address: | leigh@cox.net |
| Homepage URL: | http://biologiams.8m.com/kamagra-oral-jelly/kamagra-oral-jelly-order.html |
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| Name: | sharon dunne |
| E-mail address: | sharonguerrine@hotmail.com |
| Country?: | ireland |
| Type Of IBD: | nec |
| Type Of Surgery : | bowel resection |
| Comments: | hi shaz have just found your page now , my 7 month old son has an illiostomy since the age of 5 weeks its been hard but were getting there.we are hoping to get it reversed on monday 19 th july its a pitty i only found you now it would have been nice to tlk, best o luck in the future sharon dunne x x
|
| Name: | Lyn Wilson |
| E-mail address: | lyn@brenan.net |
| Country?: | USA |
| Type Of IBD: | Colorectal cancer |
| Type Of Surgery : | proctocolectomy |
| Comments: | On May 22nd of this year (2009) my colon and rectum were removed. This was my third colorectal cancer in 2 1/2 years.
So I am a new ostomate and I am a "babe in the woods" but learning and adjusting to the changes. Thank you for providing so many useful links. I would be interested in hearing about new stuff too. Again thank you, your site is very helpful. Lyn |
| Name: | Pat Chatto |
| E-mail address: | pchatto@msn.com |
| Country?: | USA |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | illiostomy |
| Comments: | Had an illostomy Feb 2008.Suffered from colitis for over twenty years. In and out of the hospital, steroids,azuldine, asacol and finally a new drug Lialda.Had the illostomy and spent a month in the hospital.One infection after the other.Had three months of therapy at home. So sick I couldn't walk. Lost 45 pounds. Finally was on the road to recovery and then had a heart attack in May of that year.Had two stents put in and once again back to having nurses coming to the house and therapyst until September.I went through hell, but guess what I am feeling great today. No more cramps, no more being afraid to go out for fear of cramps and diarhea.The illostomy is just a little annoyance that I have to put up with, but it was worth it.Changing it and cleaning it is no problem. Life is once again good. |
| Name: | Karen Williams |
| E-mail address: | grammykkw@yahoo.com |
| Country?: | USA |
| Type Of Surgery : | Colostomy |
| Comments: | Hello, Ran across your homepage and stopped to read. I con't usually communicate like this but couldn't resist your invitation. Had my surgery in Sept 2006. Tried to reverse it in Sept 2007. But could not. Resigned to deal with it for the rest of my life. Am trying to gather support for as support group. Not having much success. Trying to find what works to interest people with ostomies. Any suggestions. Thanks. Karen |
| Name: | Des Hover ( pronto ) |
| E-mail address: | hover959@btinternet.com |
| Country?: | UK |
| Type Of Surgery : | Illo |
| Comments: | Hi Shaz first time I,ve been into your book well done .. I do use the forum side of the site and enjoy the arcade Des |
| Name: | PETER KARANJA |
| Country?: | USA |
| Type Of Surgery : | UROSTOMY |
| Comments: | Hi Shas,
I first read about you in 2002,while visiting US,I also had my urostomy surgely done the same year.Now am back again to the US.and its nice to visit your site.I'm glad you have continued to help and encourage new ostimates may God bless you for the wonderful work.I have been well with my stoma;and with God's help am doing well.Are there any born again christian out there who are ostimate?I would like to get in touch with them.My email adress:petkaran8@aol.com Peace and may God bless all of us AMEN |
| Name: | Linda Osborne |
| E-mail address: | ronosborne@suddenlink.net |
| Country?: | United States |
| Type Of IBD: | C-diff |
| Type Of Surgery : | permanent ileostomy |
| Comments: | read your story--please please help me--my husband just had a ileostomy--no health problem just got a terrible infection which killed his colon-have so many questions that noone seems to want to help me or talk to me about--anyone that sees this please e-mail me at ronosborne@suddenlink.net---I don't know what to do-between crying and trying to help him this is breaking my heart---Linda Osborne |
| Name: | karen havins |
| E-mail address: | karen.havins@yahoo.com |
| Country?: | Texas, USA |
| Type Of IBD: | ileostomy |
| Type Of Surgery : | proctocolectomy |
| Comments: | Not sure if that is the correct spelling or word for my surgery, but I had my entire colon and rectum removed due to ulcerative colitis which led to colon cancer. I just finished 6 months of chemotherapy and it was a success. I am now cancer free and thrilled. Had lots of support from family and friends and a wonderful husband and children. I had my surgery 10/29/08 and I am still getting used to the ileostomy, although it has been very successful. While doing the chemo, had lots of leaks and was kind of depressed about this, but since I've been done, for about a month, things are alot better. I made a deal with God that if I got through this cancer thing, that I would get tougher and learn to accept the ileostomy and quit feeling sorry for myself. There are alot of worse things than this. I will be back to work full time soon, but I worked about 25 hours a week while having chemo. It helped keep my mind off of things a bit. I think your site is very nice and informative and yes, I am glad not to have ulcerative colitis anymore. I had it for 12 years. Thanks for sharing with all of us who love to talk to folks with our same situation. Feel free to email me. Karen |
| Name: | Deb Flora |
| E-mail address: | kelley53k@aol.com |
| Country?: | usa |
| Type Of Surgery : | repair of laserated colon /temp bag |
| Comments: | I had surgery in Nov 2008 with a temporary ostomy, not sure I ever want to go threw that again, so might keep this bag.I am going to start to irrigate soon my ostomy nurse has you do it with her for instruction, the first time. i am not sure about that since nothing is sacred these days. I want some kind of privacy. Good luck to you all. |
| Name: | leonard ball |
| E-mail address: | lrsball@gmail.com |
| Country?: | canada |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | ileostomy |
| Comments: | I have had your page bookmarked since my surgery in 2001, thanks for being there. |
| Name: | pam bland |
| E-mail address: | pbland@telkomsa.net |
| Country?: | south africa |
| Type Of IBD: | eileostomy |
| Type Of Surgery : | total colectomy 1967 |
| Name: | fran |
| E-mail address: | fran-mackinnon@hotmail.com |
| Country?: | canada |
| Type Of IBD: | chrons |
| Type Of Surgery : | illeostomy |
| Comments: | thanks for your site. i needed to see something positive today. i am still struggling with the outcome of my operation. i didnt know i had chrons and was never sick! it has only been a year since my op. some days are great but others not so much. but today your site has helped and i want to thank you for that. |
| Name: | Noreen |
| E-mail address: | noreen.gardner@mvms.com |
| Homepage URL: | http://www.mvmsinc.com |
| Country?: | United States |
| Type Of IBD: | None |
| Type Of Surgery : | None |
| Comments: | Hi Shaz,
I just wanted to say hello all the way from Colorado in the USA! I found your site on healingwell.com and just wanted to let you know that I loved reading your story! I work for a medical supply company and although I am not an ostomate, we deal with many customers that are. It helps to get first hand accounts to help me help them! So, thank you for your help! Take care! Noreen |
| Name: | drew ngigi |
| E-mail address: | drewngigi@gmail.com |
| Country?: | usa |
| Type Of IBD: | ille |
| Comments: | recent (7 months)_ ille. me and "stacy" are still gettin 2 know each other. she's very tempremental. just chekin sites hav a gud one aussie |
| Name: | Christopher Mott |
| E-mail address: | cbshorty@gmail.com |
| Country?: | United States |
| Type Of Surgery : | Illeostomy |
| Comments: | Great site!! |
| Name: | Debbie |
| E-mail address: | number_one_13@hotmail.com |
| Country?: | Canada |
| Type Of Surgery : | Temporary Transverse Colon Colostomy |
| Comments: | Hey, I had a Hysterectomy in Sept 2008 and a 2 hour surgery turned into 6 hours resulting in waking up with 3 types of Cancer, one of which had grown and punctured through my Rectum, leaving me with a Temporary Loop Ostomy. I will have it for an additional year while I await more surgery as a result of Radiation burning the Rectum and Vaginal wall. Just found this site and wanted to connect with others about Ostomy products. "Skippy" misbehaves regularly. I have plans to be in Australia this August 2009 and a friend nicknamed my Colostomy "Skippy the Bush Kangaroo". Said I was trying to be an Aussie by being a Kangaroo...pouch=Roo...teee heee. |
| Name: | Tony Hendrix |
| E-mail address: | tonycarolhendrix@bellsouth.net |
| Country?: | usa |
| Type Of IBD: | Hirschsprung's disease |
| Type Of Surgery : | Ileostomy |
| Comments: | My nephew is only 7 months old and has Hirschsprung's disease and has already had 70% of his colon removed. His name is Hayden. He might have to have an Ileostomy. We hope and pray he can make it . He is just a baby. Thank You Shaz for sharing your story and testimony. Tony |
| Name: | Deb Finnestad |
| E-mail address: | debfinnestad@aol.com |
| Country?: | USA |
| Type Of IBD: | Crohn's Disease |
| Type Of Surgery : | proctolectomy |
| Comments: | Actually reading as my husband has had Crohn's disease for 19 years and we just found out he has colon cancer and will be having a total proctolectomy with a iliostomy.
I am wanting to learn more about what life will be like for him and I'd love for him to get involved with a support group or just find someone who has went throught this and can give him some comfort and peace. Thanks for having this site! Deb |
| Name: | Naaem |
| E-mail address: | naaem@yahoo.com |
| Homepage URL: | http://cones.20m.com/actos/index.html |
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| Name: | Scott Hamlin |
| E-mail address: | hamlin38@msn.com |
| Country?: | USA |
| Type Of IBD: | Preforated Diverticulitis |
| Type Of Surgery : | From way below to above my belly button |
| Comments: | Hi Chaz.
You don't know how important you and your web site is for the rest of us trying to discover and cope. I only have a Colostomy. And hopefully it's supposed to be reversed -that is if Diverticulitus is all that it was. But you know? Even if it is reversed, I'm going to be an ostomate for the rest of my life. By the way -lucky you!!! I never made it to Perth. I lived in Sydney -actully Kirribilli -right across the harbour from Sydney Proper. I made it to Canberra, and Queensland -Whitsunday.... I love, love, love Australia. Cheers, scott |
| Name: | bruce edwards |
| E-mail address: | vjd3512@yahoo.com |
| Country?: | oz |
| Type Of IBD: | ileostomate/crohns |
| Type Of Surgery : | ileostomate/crohns |
| Comments: | circumnavigating oz solo in my 28ft yacht ex nz, then the planet. |
| Name: | amanda manifold |
| Country?: | england |
| Type Of IBD: | UC |
| Type Of Surgery : | ileostomy |
| Comments: | This was due to ulcerative colitis.I had suffered from this for nearly 8 years before they removed my bowel. |
| Name: | John Covington |
| E-mail address: | jcovington@roseandwomble.com |
| Country?: | USA |
| Type Of IBD: | Ileostomy |
| Type Of Surgery : | Complete resection of large intestine and anus. |
| Comments: | Shaz, I read your article. Beautifully written.
I had U/C for 22 years before the Dr's (3 to b exact) that there was a 95% possibility of having colon cancer. I had "elective" surgery on 10 FEB 1983, on my Mother's birthday, I might add. When the results came back, I didn't even have a pre-cancerous condition. I went through hell for about 6 months blaming myself for having agreed to the "mutilation" of my body for no reason. Whenever I would have to empty my pouch, I had the greatest desire to take a sharp object and "mutilate" my stoma. I spent about 9 months with a psychirist. I finally accepted it and am happy that I did have the operation, because the last 26 years, I have been extremely healthy Once again, thanks for the article, I enjoyed reading it. |
| Name: | Richelle Caffall |
| E-mail address: | richellecaffall@gmail.com |
| Country?: | United States |
| Type Of IBD: | Crohn's |
| Comments: | I stumbled upon your page while looking for info on Ileostomies. I just found out that I will probably need one in the next couple of years. Thank you for being so public with your info...it makes my future look hopeful and less scary!
Richelle |
| Name: | Natalie |
| E-mail address: | diamondtrenf@netscape.net |
| Country?: | USA |
| Comments: | Hi, Wow you sound like a very strong woman, may God bless you. I am just reading about this because my brother is suppose to be having surgery on Monday. When I first found out I felt like his world was ending and I was falling apart. But after reading your blog I realized life goes on. Thank you for allowing me to see part of your world. Sincerely, Sue |
| Name: | Alison Hunt |
| E-mail address: | alih3105@hotmail.co.uk |
| Country?: | UK |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | j-pouch |
| Comments: | hi.. i was diagnosed with UC in April 1995, i was in a feeding unit for 8 weeks to give my bowle time to rest and hopefully take to the treatment (steroids) this worked but only for a couple of months. after being admitted time and time again over the next few months i eventually had my first major op on November 5 1995..
i had a temporary ileostomy for 12 weeks and then had it reversed. due to complications i had a second bag fitted for another 6 weeks whilst everything calmed down.. i hated it at first as you can imagine i had only just gone 15 in the may of my op so this was like an alien thing on me.. i eventually got used to it but only as i know it would soon be reversed. i have to admit i was at my best and most well when i had my bag on (winnie i called it as in winnie the poo!) :-).. i could eat what i wanted, the only downside of it was the wind and also as i used to sleep on my tummy id wake up and had a few accidents but i suppose it couldnt be helped.. (still embarrassing though) i had the bag reversed for the second time vowing to never have another again.. i am unable to eat what i want and have to be so careful, to be honest i hate it, my diet is horrible and i have terrible cramps and bloating now. this can really get you down but as my specailist advised the only was to avoid this would be to have a permanant bag on.. (as much as i got used to having winnie with me 24 hrs a day) i have just gone 29 and i dont even want to think about having one back on.. maybe if i was married settled down and in my 40's/50's, but how do you explain it to future partners..... would love to speak to other people with j-pouchs as i dont know anyone in my situation and would love to pick up ideas/info of how they cope.. thanks for reading my bit.. hope to hear from someone soon alison x |
| Name: | stephanie |
| E-mail address: | stephaniea52@msn.com |
| Country?: | Canada |
| Type Of IBD: | BE |
| Type Of Surgery : | urostomy |
| Comments: | I have had my urostomy now for 51 yrs, before that I wore a colostomy four yrs, Im 57. I have a question I have had many infections over the years,and have passed many kidney stones (since my teens) but the last three years I am making these stones to big so have to have surgaries to get them out, which I rather not do again, last yr I had the tubes into my back and kidneys for 5 months not the best feeling packing 3 bags. I was told the other day that the stones might be because of Parathyriod has anyone ever heard of this? Thank you Steph |
| Name: | shonda baswell |
| E-mail address: | thebaswells@yahoo.com |
| Country?: | usa |
| Type Of IBD: | colostomy |
| Type Of Surgery : | colon cancer |
| Comments: | im fixing to have my rectum removed and i want to know what to expect as far as where they sew you haw bad it hurts and where do they cut you |
| Name: | Sandra Stevens |
| E-mail address: | woolley1898@verizon.net |
| Country?: | U.S.A. |
| Type Of IBD: | Constant N.T.Urination |
| Type Of Surgery : | Urostomy |
| Comments: | Hi to all that is reading this;
"I am in need of some information reguarding,having a Urostomy done." I had my rectum removed the end of March.The doctor wanted me to see a Urologist before he did the surgery to see if my bladder should be removed or just have it re-routed.She said that she found nothing that warrented having my bladder fixed,but yet she wanted to do the Botox injections after my surgery and I was back on my feet.I found a good Urologist near me,that I went to see,a month ago.We talk and I told him that I am up at least 3 to 5 times a night going to the bathroom.He send me have a bladder and kidney scan done.He does think that the Botox injections would help me.When I lay on my sides at night,it is a sure bet the with in a half hour I am in the bathroom,so I have to lay on my stomach all night long.I have a bad back as well,so I can not lay on my back.The doctor has tried to give me a couple types of medicine to help stop me from going to the bathroom that I have not has yet been on in the past to help me from going so much during the night,but I can not take them,because I have Restless Leg Syndrome,and the medicine interfers with that.So I was wondering just how is the surgery done,where do they put the stoma at,and are you cut down the center of your stomach or just above the pelvic bone.I have also had a permanent colostomy for three years this coming June.I was just wondering if maybe someone can give me some ideas on how it is done.If you can,I would love to hear from someone who has had it done.There is a good chance that I may have to have one done. I love this site and have been on it several times.I love reading it at least once a week. Thank You Sandra |
| Name: | constance lofty |
| Country?: | usa |
| Type Of IBD: | e colitis and polyps |
| Type Of Surgery : | ileostomy |
| Name: | Kathy |
| E-mail address: | kathryn5340@hotmail.com |
| Country?: | UK |
| Type Of IBD: | FAP |
| Type Of Surgery : | Ileostomy |
| Comments: | I had surgery in 1980. |
| Name: | Karen |
| E-mail address: | karensrainbow4@hotmail.com |
| Country?: | USA |
| Type Of IBD: | UC |
| Type Of Surgery : | Ileostomy |
| Comments: | Hi Shaz,
I haven't "stopped by" in awhile, but thought I'd pop in and say hello to all the other gorgeous "bag ladies and gentlemen" out there. Life remains wonderful. It's been 21 1/2 years since my sugery, and at 42 I am healthier than ever. I remain an adventure junky and hope my fellow ostomates are finding joy in adventures, too. The ostomy was such a life saver (many of us wouldn't be here without it), so I try and take each day as a chance to love life. I don't recall ever say "I can't" because of the ostomy - but an always excited "I can" - not really paying attention to the ostomy (it's just how we use the bathrom, right - and nothing more). So, those who know me know I'm still an exercise junky, a scuba diver, a traveler, and a nature freek. Thanks to ostomy surgery, I am alive today, and get to cliff hike in Tobermory, scuba dive in Key West, ride horses through the Mountains, and dance on the beach at sun rise (starting at sunset - of course!). Love life, dears ones. We were ALL given a gift. Use it to your fullest and most heart-felt efforts. Be happy! |
| Name: | Karen Taylor |
| E-mail address: | kat221@bellsouth.net |
| Country?: | U.S.A |
| Type Of Surgery : | Colon resection that didn't turn out right. So now a temporary ileostomy until everything heals. |
| Comments: | I love your outlook on life Shaz. My biggest problem is leakage since I'm now well enough to be more active. I was sick for about 3 months afterwards, and I was in and out of the hospital. |
| Name: | Lisa |
| E-mail address: | 1235813@charter.net |
| Country?: | USA |
| Type Of IBD: | Crohn's Disease |
| Type Of Surgery : | Ileostomy |
| Comments: | Wow! What a great site you have! I was searching online to see what a urostomy bag looked like and found your site. Great tips. And I thought I knew all after 15 years...! |
| Name: | Terry Edwards |
| E-mail address: | tbe1217@aol.com |
| Country?: | USA |
| Type Of Surgery : | PMP |
| Comments: | An online friend recommended your site to get ideas about my diet. I had my PMP surgery April 13, 2009 and having a few eating, digestion, elemination problems.
Thank you for helping us. |
| Name: | Joan Warner |
| E-mail address: | wwjwbjw@embark.com |
| Country?: | USA |
| Type Of Surgery : | Colorectal |
| Comments: | I just had my surgery in Feb, 2009. I am still getting used to taking care of the colostomy bag. I am 74 and have a good attitude. |
| Name: | peter Magee |
| E-mail address: | between2parks@rogers.com |
| Country?: | CANADA |
| Type Of Surgery : | COLONOSCOPY |
| Comments: | LOOKING FORWARD TO 'WORLD OSTOMY DAY
OCTOBER 3, 2009 |
| Name: | beccagal |
| E-mail address: | beckydylan@yahoo.com |
| Country?: | usa |
| Type Of IBD: | ulceritive colitis |
| Comments: | I have had my colon removed in October 2008. I went to the doctor today because I have been havig bleeding from my rectal stump which was left in place only to be told that I am going to have to have my rectal stump removed. What is the procedure and is it easier than the surgery I had to have my colon removed? |
| Name: | margy |
| E-mail address: | margy@vic.chariot.net.au |
| Country?: | Australia |
| Type Of Surgery : | permanent illiostomy |
| Comments: | Hi Shaz,
I had my surgery in 1998. I was 1st fitted with a temp bag but unfortunately complications arose so 2 months after I had to have a permanent bag..... which I loath. I am trying to seek information regarding a J pouch.. is it an advantage or does it just make things "worse". |
| Name: | margy |
| E-mail address: | margy@vic.chariot.net.au |
| Country?: | Australia |
| Type Of Surgery : | permanent illiostomy |
| Comments: | Hi Shaz,
I had my surgery in 1998. I was 1st fitted with a temp bag but unfortunately complications arose so 2 months after I had to have a permanent bag..... which I loath. I am trying to seek information regarding a J pouch.. is it an advantage or does it just make things "worse". |
| Name: | Betty Kanavel |
| E-mail address: | kanavel@msn.com |
| Country?: | United States |
| Type Of IBD: | Diverticulosis |
| Type Of Surgery : | No Surgery |
| Comments: | Hey Shaz,
I have been trying to e-mail you and I can't. The Reason I was trying to reach you was I now have a web cam and I thought you and I could talk over the internet. What calling program do you use Shaz. I have Skype and Windows Live and Yahoo. Please e-mail me and tell me what time is good for you. I can tell you that 10pm Saturday my time and 1pm Sunday your time. We could switch the days like Friday and Saturday. Love Ya Betty Kanavel |
| Name: | Betty Kanavel |
| E-mail address: | kanavel@msn.com |
| Country?: | United States |
| Type Of IBD: | Diverticulosis |
| Type Of Surgery : | No Surgery |
| Comments: | Hey Shaz,
I have been trying to e-mail you and I can't. The Reason I was trying to reach you was I now have a web cam and I thought you and I could talk over the internet. What calling program do you use Shaz. I have Skype and Windows Live and Yahoo. Please e-mail me and tell me what time is good for you. I can tell you that 10pm Saturday my time and 1pm Sunday your time. We could switch the days like Friday and Saturday. Love Ya Betty Kanavel |
| Name: | Claire Clancy |
| E-mail address: | clairebear04@optusnet.com.au |
| Country?: | Australia |
| Type Of IBD: | none |
| Type Of Surgery : | none |
| Comments: | I'm a student(enroled nursing) at TAFE in SA who was researching for a question i needed to answer for an assignment, came across your site. I just wanted to say how normal you make it sound to have Harriot .I am currently a carer at a nursing home and I attend to a couple of clients that have colostomy's, I have seen them acept the condition they now have to live with, but they haven't embraced the fact that they are still alive,they seem to be a bit uncomfortable about their condition, maybe its because of their age or even their upbringing. Anyway I was enthused with your aceptance and happiness in the way your site is set up, keep up the good work with chearful words and encouragement to all. God bless Claire |
| Name: | ryan anderson |
| E-mail address: | ryesuperman@yahoo.com |
| Country?: | USA |
| Type Of IBD: | crohn's |
| Type Of Surgery : | ileostomy |
| Name: | Jolene |
| E-mail address: | maynerjolene@yahoo.com |
| Country?: | USA |
| Type Of IBD: | Ileostomy |
| Type Of Surgery : | Ovarian cancer recurrance |
| Comments: | Thank you so much for being so darn positive.
It's been just since last June I had my surgery. I was told that it would be temporary and am waiting, as patiently as I can. I hate having to hide the pouch, wear different clothes, hide myself from the world. I haven't been so kind with my name for my stoma, I'll keep that a secret for now. Anyway, thank you for your positive attitude, perhaps it'll rub off on me. PS Do have a job? How do you deal with your pouch and the removal of the waste in an eight hour day? |
| Name: | Mrs Margueriye Moss |
| E-mail address: | mardiamos@yahoo.co.uk |
| Country?: | Manchester Gt Britain |
| Type Of Surgery : | ileostomy |
| Comments: | I have had my ileostomy for 10 years now due to ulcerative colitis which took away my life for nearly 5 years. I have had no problems until now and have had to have an hysterectomy 4 weeks ago due to the fact that my vagina fell into the crevice made by the removal of my bowel. Ah well life goes on, you have a very positive attitude and I wish you a long and happy life. Marguerite Moss |
| Name: | Sounida |
| E-mail address: | sounida69@gmail.com |
| Country?: | India |
| Type Of Surgery : | Illeostomy |
| Comments: | Hi Shaz,
Good to see a person with the same status as me.I too had my Illeostomy at the age of 12.I had gone for a Cystoscopy & the die administered burnt my entire baldder & left ureter.I went into lots of complications and was in Coma for 15 days.Lord Jesus revived me.I had my urostomy after that and am happy now.Now I am 39 and have a son aged 19.I would like to keep in touch with ostomates like me.Keep in touch. Sounida. |
| Name: | Bonnie |
| E-mail address: | bflikke@hotmail.com |
| Country?: | USA |
| Type Of IBD: | ileostomy |
| Type Of Surgery : | TEM/Bowel Resection/Hysterectomy |
| Comments: | Hi Sharon and Harriet,
Finding and reading your page was a wonderful thing. I am almost 4 weeks post surgery and have yet to name my stoma. It will be with me for a bit longer so as I heal up i'm sure something will pop into my head. Thank you for making this web site for people like me to help me feel more comfortable with having an ileostmy. Sometimes I feel so alone with it. |
| Name: | Bonnie |
| E-mail address: | bflikke@hotmail.com |
| Country?: | USA |
| Type Of IBD: | ileostomy |
| Type Of Surgery : | TEM/Bowel Resection/Hysterectomy |
| Comments: | Hi Sharon and Harriet,
Finding and reading your page was a wonderful thing. I am almost 4 weeks post surgery and have yet to name my stoma. It will be with me for a bit longer so as I heal up i'm sure something will pop into my head. Thank you for making this web site for people like me to help me feel more comfortable with having an ileostmy. Sometimes I feel so alone with it. |
| Name: | Sandra Stevens |
| E-mail address: | woolley1898@verizon.net |
| Country?: | U.S.A. |
| Type Of Surgery : | Recum Removal |
| Comments: | HI,
I have been having a lot of problems with drainage from me rectum and vagina,for two years now.I have been to six different doctors and none of them could find the problem.So my husband and I decided to widen our search for a Specialist that knew what was happening and what to do about it.We ended up all of the way up in Pittsburgh,PA.,which it about a two hour drive from where we live.But we found a specialist that knoww the problem and is going to fix it for me.I am having my rectum removed,on the 30th of this month.I already have a permanent colostomoy,which was done three years ago this coming June.I have also been told that there is a hernia that has attached itself to my stoma.So the surgeon also have to try and find away to try and remove the hernia with out messing up the stoma.I may also have to have me stome re-routed.I am looking forward to getting the surgery done and over with so that I can get rid of this mess that I have been dealing with for two years now.But I am also starting to get nervous and my body is filling up with anxiety.There are a million things running through my mind now,and I am counting down the day until my surgery.I don't really like being that far from my husband,family and friends,but I guess I don't have a choice at this time.I will be in communication by phone.My pastor said that he my try and make it up there if he has the time,and bring my husband with him.He just live two doors down from us.I have had a lot of surgeries,but this will be the longest one I have yet to be under for.The surgery will be about four to five hours with all that he has to do. I am a regular member of the Ostomy site the Shaz's has up and running.I have got a lot of answers from that site and love it.It has been a big help to me.If any one who reads this,can give some input on what to look forward to,I sure would apprecite hearing from you. Thanks for reading this,and god bless you. Sandra |
| Name: | Celina |
| E-mail address: | musicula@yahoo.ca |
| Country?: | Canada |
| Type Of IBD: | UC |
| Type Of Surgery : | Ileostomy |
| Comments: | In Vancouver BC or Canada, has anyone out there had a J-pouch redone (after one has failed) and if so, can you provide me with a doctor's name that will do it?
I have had my colon and about 1 ft. of small intestine removed with rectal stump still intact. I only have the rectum because I was too ill for them to do more surgery @ that time. This was 20 yrs ago and was told the rectum was no longer viable (due to muscle control) and of course if it too failed, living with less small intestine (shortened bowel syndrome) obviously, would be even worse. Back then they did an S-pouch and soon after, stopped doing them at all, because they realized it wasn't as good as the J-pouch. I was young and didn't know that the hospital having only done 60 of these surgeries was not a good number! I obviously just wanted the reversal done asap. I was a rare and acute case @ the time, but I recovered quickly from the pouch procedure. About 10 days later however, a suture somehow burst and developed peritonitis, then a nurse gave me an enema that wasn't supposed to be done and I became deathly ill (once again) and was lucky to survive, and lost the pouch. I cheated death 3 times in 9 months, after only having UC for 8 months (and 15 emerg visits in 1 yr). I didn't react to any meds and had to learn about the disease only after nearly dying from it. ANYWAY...I just want to know if anyone has had a J-pouch redone, preferably in Canada, successfully or not. Any info will be greatly appreciated! Bless you all, my kindred spirits.. Celina. |
| Name: | Celina |
| E-mail address: | musicula@yahoo.ca |
| Country?: | Canada |
| Type Of IBD: | UC |
| Type Of Surgery : | Ileostomy |
| Comments: | In Vancouver BC or Canada, has anyone out there had a J-pouch redone (after one has failed) and if so, can you provide me with a doctor's name that will do it?
I have had my colon and about 1 ft. of small intestine removed with rectal stump still intact. I only have the rectum because I was too ill for them to do more surgery @ that time. This was 20 yrs ago and was told the rectum was no longer viable (due to muscle control) and of course if it too failed, living with less small intestine (shortened bowel syndrome) obviously, would be even worse. Back then they did an S-pouch and soon after, stopped doing them at all, because they realized it wasn't as good as the J-pouch. I was young and didn't know that the hospital having only done 60 of these surgeries was not a good number! I obviously just wanted the reversal done asap. I was a rare and acute case @ the time, but I recovered quickly from the pouch procedure. About 10 days later however, a suture somehow burst and developed peritonitis, then a nurse gave me an enema that wasn't supposed to be done and I became deathly ill (once again) and was lucky to survive, and lost the pouch. I cheated death 3 times in 9 months, after only having UC for 8 months (and 15 emerg visits in 1 yr). I didn't react to any meds and had to learn about the disease only after nearly dying from it. ANYWAY...I just want to know if anyone has had a J-pouch redone, preferably in Canada, successfully or not. Any info will be greatly appreciated! Bless you all, my kindred spirits.. Celina. |
| Name: | Terri Dial |
| E-mail address: | tazz238@aol.com |
| Country?: | USA |
| Type Of Surgery : | Total Colectomy |
| Comments: | It is nice to be able to see others that are going through some of the same things. I had my 3rd baby on January 5th and 48 hours later was taken in to emergency 'exploratory' surgery where they removed my colon. This has been very overwhelming for me but I am blessed to be otherwise healthy. The Dr's are not sure what happened -- twist, nicked during delivery??? I am scheduled for a re-anastamosis in a couple of weeks and am looking forward to it but at the same time very nervous. |
| Name: | Dani DeCamino |
| E-mail address: | ddecamino@msn.com |
| Homepage URL: | http://myspace.com/danidec |
| Country?: | United States of America |
| Type Of IBD: | Crohns and other stuff |
| Comments: | Thank you! :) I sent you an email. |
| Name: | Jessica Savage |
| E-mail address: | jessicalynnsavage@gmail.com |
| Country?: | USA |
| Type Of IBD: | Crohn's Disease |
| Type Of Surgery : | reversal |
| Comments: | Hi,
Your story sounds just like my Dad's. The only difference is that he suffers with chronic diarrhea. It's constant and he is miserable most of the time. I was wondering if you deal with this? He had Crohn's and had to have a bag due to an emergency surgery. A few years ago he had it reversed and is almost to the point of wishing that he had not due to the diarrhea. Do you know of anything he can do? He has been dealing with the diarrhea for ten years and is desperate. He has tried everything and has went to several doctors. Any advice or remedy you can suggest, he would try. Thanks for your time. |
| Name: | Tina Michelle Eller |
| E-mail address: | carebear422001@yahoo.com |
| Country?: | United States |
| Type Of IBD: | Ulcerative Colitis,Chrons, and Gastroparesis |
| Type Of Surgery : | entire colon removed and now have permanent illieostomy |
| Comments: | Hi Shaz,I just wanted to tell you how much I love your site and how inspiring it has been for me to read about other ostomates, I don't have any family members that understand how it is to deal with the daily challenges that I have to deal with having an ostomy along with other medical problems, it's refreshing to know that I have somewhere that I can connect with others. |
| Name: | rhonda gilbert |
| E-mail address: | rkg3369@gmail.com |
| Country?: | united states |
| Type Of IBD: | ileostomy for now |
| Comments: | i really enjoyed reading your story. for now i have an ileostomy but thats about to change. i was diagnosed in 2004 with colorectal cancer and had the ileostomy done tempoarily (supposedly)! it has been nearly 5 years now and after several attempts to repair the radiation damage i have come to realize im gonna have this for life! tomorrow i am havin surgery to change to the colostomy. I put it off over and over with the hope of a miracle! now i realize i AM the miracle! im nearly five years cancer free and get to enjoy life with my family every day! |
| Name: | Sue |
| E-mail address: | hsshupert@aol.com |
| Country?: | US |
| Comments: | I am signing in on behalf of my spouse who is going to have surgery soon. He has has ulcerative colitis for 5 years and it has been really hard for him especially since he is or was very active. He recently was hospitalized for the 3rd time for severe bleeding and all that goes with that. The drs have been using drugs to help since he was diagnosed and nothing has worked. This visit to the hosp. helped him make the decisions to have the surgery. I found your web site as I was surfing and it has been a help to me to understand what is going to happen and things we need to know. Thanks for all the sites we can go to through your site. I will keep you up todate on our experiences. Thanks again |
| Name: | Cliff from Canada |
| E-mail address: | cbeagan@cogeco.ca |
| Country?: | Canada |
| Type Of Surgery : | sub total colectomy 1996 |
| Comments: | Hi again Shaz. Haven't been here for a long time. Too busy attending birthdays, figure skating,ice hockey, school socials, etc., with my 14 grand kids. Have had no Ostomy problems for the last 7 years but I think I should get rid of my rectal stump. Problems with it this past month.
Hope all are fine. Cliff Beagan |
| Name: | Jim Short |
| E-mail address: | jshort@arvis.us |
| Homepage URL: | http://arvis.us |
| Country?: | USA |
| Type Of IBD: | UC |
| Type Of Surgery : | total colectomy |
| Comments: | Hey there! I didn't have to deal with Ulcerative Colitis for years, I had mine compressed into 1 month. Went in the hospital on 11/15/08 (or 15/11/08 for you crazy Europeans), responded to no treatments, had to have surgery or die. So, on 12/08/08 (or 08/12/08 *sigh*) I had my colon removed and live with an ileostomy. At first, I thought I'd rather die than live with this thing. . .now, the entire process of caring for Henry (my stoma) is rather meditative. Nothing is allowed to interrupt my one on one time with Henry. No phone calls are answered, no door buzzers are responded to, etc. etc.
(p.s. I know you're not "technically" European, but after living 8 years under W's control, we're all a little confused over here in the USA - but we're feeling better) |
| Name: | Donna Dellow |
| E-mail address: | ddellow@hotmail.com |
| Country?: | New Zealand |
| Type Of IBD: | Colostomy |
| Comments: | I had no idea so many accesories were available |
| Name: | Lana Morris |
| E-mail address: | lm014w5515@blueyonder.co.uk |
| Country?: | United Kingdom |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Colostomy/ileostomy |
| Comments: | I am booked in for 24th March for above operation and getting quite nervous - but after reading your page I feel much calmer.....Thanks Shaz!! |
| Name: | uzma |
| E-mail address: | uzma_ahmad@hotmail.com |
| Country?: | pakistan |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | total colectomy |
| Comments: | u r seemed a brave lady, i m inspired of u as u gave me courage to live with stoma. i m 32 years old lady n a school teacher.my surgery have done in september, nowadays i m under treatment of cancer, that is chemotherapy.yup i had cancer of rectam.but thanks god 2 give me a new life |
| Name: | awilmeth |
| E-mail address: | bigawilmeth@yahoo.com |
| Country?: | USA |
| Type Of IBD: | n/a |
| Type Of Surgery : | n/a |
| Comments: | RN taking refresher course after 18 years off for child rearing. Inspiring story good resource |
| Name: | Kathy |
| E-mail address: | kdbeeson@sbcglobal.net |
| Country?: | USA |
| Type Of Surgery : | ileostomy |
| Comments: | I am so pleased to have found someone who faces the same challenges as I do. I am especially thrilled to have found an Aussie from down under. I live in Texas. Thank you for sharing your story with the world. You are indeed a very special person. |
| Name: | linda young |
| E-mail address: | gogrl54@yahoo.com |
| Country?: | usa |
| Type Of Surgery : | colostomy urostomy |
| Comments: | I love your site i'm just haveing trouble with all the supplies thank you for the lift-up i needed that!! Bless you |
| Name: | Lady Na'ilah |
| Homepage URL: | http://www.sugarsisters.org |
| Country?: | USA |
| Comments: | Dear Sister,
This is a special invitation for you to come and visit our site S.U.G.A.R at http://www.sugarsisters.org We all experience life's season and sometimes we can not define our purpose. At SUGAR we will walk along with you all seasons and periods of your life; when there is love, warmth and joy as well as in any time of difficulty, sorrow or sickness, weather you are too tired or too busy. We will encourage one another to live life at its fullest sharing our experiences, talents and abilities. We will walk this journey together! A mission to think about each other as sisters in everything we do. EVERY WOMAN COUNTS! Looking forward to see you with us, Love and Blessings, Lady Na'ilah |
| Name: | Antonio Diniz |
| E-mail address: | mhdiniz31@dataone.in |
| Country?: | India |
| Type Of IBD: | Ulcerative Collitis |
| Type Of Surgery : | Ileostomy |
| Comments: | Hi Sade,
You seem to be a bold, courageous and friendly lad at 13. It is unfotunate that you to wear a bag at this tender age. I truely sympatise with you. I started at the age of 60. I too went through severe pains and excessive bleeding, needing about 18 pints fo blood transfusion. Surgery was the only solution.Colectomy rids you from your illness, except that you are left with a handicap that is quite manageble.I doing fine. Sade let me assure that your positive attitude I am sure you will do well in life. You will get plenty of support and encouragement through Shaz's Ostomy pages and your future will continue to be bright Best of luck and regards. Antonio Diniz, India |
| Name: | Antonio Diniz |
| E-mail address: | mhdiniz31@dataone.in |
| Country?: | India |
| Type Of IBD: | Ulcerative Collitis |
| Type Of Surgery : | Ileostomy |
| Comments: | Hi Sade,
You seem to be a bold, courageous and friendly lad at 13. It is unfotunate that you to wear a bag at this tender age. I truely sympatise with you. I started at the age of 60. I too went through severe pains and excessive bleeding, needing about 18 pints fo blood transfusion. Surgery was the only solution.Colectomy rids you from your illness, except that you are left with a handicap that is quite manageble.I doing fine. Sade let me assure that your positive attitude I am sure you will do well in life. You will get plenty of support and encouragement through Shaz's Ostomy pages and your future will continue to be bright Best of luck and regards. Antonio Diniz, India |
| Name: | Antonio Diniz |
| E-mail address: | mhdiniz31@yahoo.com |
| Country?: | India |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Ileostomy |
| Comments: | Hullo Shaz,
Shaz's Ostomy Pages is invaluable, informative and very useful. It provides a kind of succour to people who are ostomates giving them a sense and feeling that they are not alone with their handicaps. Your pages bring together people various parts of the world together to share their experiences and also receive ideas, suggestions and above all messages of comfort and encouragement. Keep up your good work! Regards, Antonio Diniz India |
| Name: | Sade Weathers |
| E-mail address: | sadeinatl@aol.com |
| Country?: | usa |
| Type Of IBD: | ulcertive colitis |
| Type Of Surgery : | colectomy |
| Comments: | Hi im 13 years old and was diagnosed with UC in November of 2009 and in december had to have my whole colon removed and i currently have a ileostomy. I wanted to share my story with other teens and let them know that it isnt that bad. im not saying that somedays you may be sick of it because beleive me i do. but one thing that really helps me is i think about the people that have to have there's for the rest of there life. lucky for me i dont. And for the people that are about to have the surgery i just had dont be scared beleive me, if you had the same pains i had with UC then after the surgery you will feel TONS better. i promise. but you have to keep in mind that its not forever. Oh yea and also at first i didnt want this bag because i thought i wouldnt be able to wear my normal tight shirt and jeans but i tried it and guess what?! you can! :] but anyone that wants someone to talk too or can give me any tips PLEASE email me! |
| Name: | bostomy |
| E-mail address: | tom-harrington2@yahoo.ca |
| Country?: | Canada |
| Type Of IBD: | ileosomy |
| Type Of Surgery : | three times no large bowl and 6 14 removed from small bowl |
| Comments: | Hi would like to jion this site i think that I may have about 2 years ago and dont know acc. old email was about the same as now |
| Name: | Patty DuShane |
| E-mail address: | Iam424pd@aol.com |
| Country?: | USA |
| Type Of IBD: | Crohns Disease |
| Type Of Surgery : | Ileostomy |
| Comments: | This is so great to be able to share stories with people who understand what it's like living w/an ostomy |
| Name: | Farhat Ali |
| E-mail address: | capricorn_king@hotmail.com |
| Country?: | Pakistan |
| Type Of IBD: | UC |
| Type Of Surgery : | Ileostomy - J pouch - Takedown in 3 months |
| Comments: | Hi all
UC, ileostomy and jpouch, all these are not common in Pakistan (in fact in whole Asia u may not find much), I havent found any jpouch person in Pakistan except few. But thanks to the internet i found almost all of the requisite info. My special thanks to shaz n people alike. Not much of Ostomy products are available in Karachi, Pakistan (currently i use coloplast 2 piece), while I could not find any supporting products. The year of UC was most painful in my life, lapses, flare ups, steroids, take offs from the work and career, are my memories. At first I was afraid of surgery, cause there was no example infront of me but after having my colon removed life become much easier, almost normal, the only add thing is bag. I have some skin irritation issues after my jpouch surgery (thats may be b/c this time its loop ileostomy compare to end ileostomy of the first operation). I hope thing will be remain good after my takedown. my message for all u people is "Keep fighting" UC started : June 2007 removal of colon (collectomy ?): August 2008 removal of rectum n preparation of jpouch : January 2009 takedown : in 2-3 months time |
| Name: | sammies |
| Country?: | usa |
| Type Of IBD: | crohns colitis |
| Type Of Surgery : | protocolectomy ileostomy |
| Comments: | THANK YOU for this site!!! I'm here from the healingwell forum. surgery scheduled for end of February I just started reading your pages tonight and will read and read again. So helpful. I am so thankful!! Had to take a few deep breaths with the pics--but please a big thanks to each and every person for sharing. I hope I can be as brave. |
| Name: | Leila |
| E-mail address: | leilahowell@gmail.com |
| Homepage URL: | http://expatriatelives.blogspot.com |
| Comments: | Hi Sharon,
For some reason I was sitting here at work and thought of you and working at Diabetes Aust. Hope you are well. xxx |