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| 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 |
| Comments: | Our partners : <a rel="dofollow" href="http://www.freewebs.com/abdulmetin/terbinafine/terbinafine-cream.html">terbinafine cream</a> is about terbinafine cream... <a rel="dofollow" href="http://heddan.2trom.com/buspar/buspar-dose.html">buspar dose</a> is about buspar dose... great site! I liked the little picture on the start page. Don't mind to visit our site Nice site, Stay Safe! |
| 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 |
| Name: | Leila |
| E-mail address: | leilahowell@gmail.com |
| Country?: | USA |
| Comments: | Hi Sharon,
I was sitting here at work and for some reason thought of you and the time we spent together at Diabetes :) Hope you are well. xxx |
| Name: | Marcia (Marcy) Seelig |
| E-mail address: | marcylea@yahoo.com |
| Country?: | USA |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Ileostomy |
| Comments: | I just found this page today. I am so glad i found it. I had my surgery done when i was 16 years old i am now 67. When i was 22 years old i became the mother of identical twin sons. Then i had 2 miscarriages. Then 16 years after the twins i had another son. I feel so blessed to have my 3 sons. I am also the grandmother of 6 grandchildren. This coming Oct. will be 4 years that i was told i have PSC and have 10 years to live. I have beat the odds all my life and i feel like i can do it again. I also have Osteoporosis. I live each day to the fulliest. I have always been a happy go lucky person. I don't let people know how really bad off i am. I don't want people to feel sorry for me. I am so glad i found your page. Please feel free to email me anytime. Marcy |
| Name: | Terry Works |
| E-mail address: | davisworks@comcast.net |
| Country?: | USA |
| Type Of Surgery : | colostomy |
| Comments: | Just ran across your webpage and wanted to say hello. |
| Name: | LORI MCDERMID |
| E-mail address: | lmcdermid@bmts.com |
| Country?: | CANADA |
| Type Of IBD: | SPINAL CORD INJURY |
| Type Of Surgery : | PERMINENT ILLEOSTOMY |
| Comments: | I AM 36 TERRIFIED MY SURGERY IS FEB 8.HOW LONG IS THE USUAL HOSPITAL STAY? PAIN? ANY INFO PLEASE. I AM SCARRED. |
| Name: | MJ |
| E-mail address: | hamlvr@yahoo.com |
| Country?: | USA |
| Comments: | Hey from Texas!
For all of you who might remember Ryan Whitmire from last year.....he just returned to his hospital room after his return to ostomy land. After his reversal March 2008, he had another adhession surgery October 2008...and now again. His friends here at Shaz's helped him so much last year. I'm hoping he will be back here soon with a post. God Bless All of You! MOM |
| Name: | Steve |
| E-mail address: | stevepatterson69@hotmail.com |
| Country?: | United Kingdom |
| Type Of Surgery : | Ileostomy |
| Comments: | Had my surgery last may, thought it was the end of everything.
Not at all, after long stay in hospital I'm now still in touch with medical staff and go out regular with them for drinks etc..... Thanks for creating the site.... |
| Name: | Steve |
| E-mail address: | stevepatterson69@hotmail.com |
| Country?: | United Kingdom |
| Type Of Surgery : | Ileostomy |
| Comments: | Had my surgery last may, thought it was the end of everything.
Not at all, after long stay in hospital I'm now still in touch with medical staff and go out regular with them for drinks etc..... Thanks for creating the site.... |
| Name: | Lisa |
| E-mail address: | lisa.brown@paradise.net.nz |
| Country?: | New Zealand |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Ileostomy & Jpouch |
| Name: | Sandra Stevens |
| E-mail address: | woolley1898@verizon.net |
| Country?: | U.S.A. |
| Comments: | Hi Shaz;
I was wondering if there is anyway that you can get some sort of a list started,by having the Ostomy people put the State,City or Country that they are from,when they write or just sign in on it.That way when we are writing to someone with an Ostomy problem we have an idea where they are from,and if we are close to each other,maybe we can meet up some where and get to know each other.I think it would be a nice way to meet and make friends so that we can share our problems in person,if possible. Just a thought,and hope that you concider it.I think a lot of us would love it. I am from Martinsburg,West Virginia. Sandra Stevens (Colostomy) |
| Name: | Marty Langford |
| E-mail address: | MartyBLJr@cox.net |
| Country?: | USA |
| Type Of IBD: | UC |
| Type Of Surgery : | Bowel resection |
| Comments: | I've dealt with Ulcerative Colitis since 1994, but without too much trouble - pretty well controlled on 6-MP. In November I developed a pain that I hadn't had before. Turned out I'd ruptured a diverticulum. They resected about a foot of colon, cleaned out the infection, and left me with a colostomy. They're planning on reconnecting it in another couple weeks, which I'm anxiously awaiting. I don't think I've dealt with the world of ostomies as gracefully as you seem to have. All the best - nice page.
Marty |
| Name: | DINA |
| E-mail address: | WEEZ1967@YAHOO.COM |
| Country?: | USA |
| Comments: | THANK YOU FOR INFORMATION |
| Name: | maree balzer |
| E-mail address: | balzer5@ozemail.com.au |
| Country?: | Australia |
| Type Of IBD: | temp ileostomy |
| Type Of Surgery : | bowel resection |
| Comments: | Thanks your page was really intersting. I am having a bowel resection on 22nd Jan, for bowel cancer and I am trying to learn all about these new terms to be informed.
Maree |
| Name: | Vernetta Eriksson |
| E-mail address: | vkleriksson@hotmail.com |
| Country?: | Sweden |
| Type Of IBD: | internal pouch |
| Type Of Surgery : | bladder cancer |
| Name: | Joshua |
| E-mail address: | joshua_biotech@yahoo.com |
| Country?: | India |
| Type Of IBD: | Familial Adematous Polyposis |
| Type Of Surgery : | Ileostomy and Ileo RectalAnastamosis |
| Comments: | Hi,
I am known as Joshua and I am from India and I am 24 years old. I actually saw your comments posted on Shaz’s website regarding your type of disease and the surgery. I had to undergo a similar condition in 2002. I was diagnosed with Familial Adenomatous Polyps and they did this ileostomy. But after six months they performed a reconstructive surgery [Ileorectal Pouch Anastomosis]. I am doing fine by the grace of God. Regards, Joshua |
| Name: | Joshua |
| E-mail address: | joshua_biotech@yahoo.com |
| Country?: | India |
| Type Of IBD: | Familial Adematous Polyposis |
| Type Of Surgery : | Ileostomy and Ileo RectalAnastamosis |
| Comments: | Hi,
I am known as Joshua and I am from India and I am 24 years old. I actually saw your comments posted on Shaz’s website regarding your type of disease and the surgery. I had to undergo a similar condition in 2002. I was diagnosed with Familial Adenomatous Polyps and they did this ileostomy. But after six months they performed a reconstructive surgery [Ileorectal Pouch Anastomosis]. I am doing fine by the grace of God. Regards, Joshua |
| Name: | Jo Copeman |
| E-mail address: | Jo.Copeman@perthradclinic.com.au |
| Country?: | Australia |
| Type Of IBD: | Crohn's |
| Type Of Surgery : | Ileostomy |
| Comments: | Had surgery 26 November and still struggling to sit and stand straight but gradually getting there (probably due to osteoporosis caused by years of Prednisolone and general ill health thanks to Crohn's prior to operation). The stoma itself has been the least of my problems behaving itself quite nicely!
Just would like to thank Shaz for this amazing site, helped me immensely in actually deciding to have the surgery in the first place and not be so freaked out about it all. Such a relief to find out there are so many of us out there! Have decided that 2009 will be the start of the "new" me, 42 years old and in robust good health, will make a nice change! Cheers and good health and happiness to you all. Jo. |
| Name: | Amy Steele |
| E-mail address: | amysteele476@hotmail.com |
| Country?: | USA |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | total colectomy |
| Comments: | It's actually my daughter that has had the above done. I am just her support person. Wish I could have had it done to me that's for sure. She has been awesome. Enjoyed your site. Thanks for sharing!
Amy |
| Name: | Carol L. Rosson |
| E-mail address: | clr319@gmail.com |
| Country?: | USA |
| Type Of Surgery : | Colostomy |
| Comments: | Happy New Shaz. I'm new at all this stuff it been 6 weeks now. I need to know so many things; foods to eat or not eat, what is the best type of bag? I worry about is there an odor,when will I be able to put on my bag by my self? |
| Name: | Amy |
| E-mail address: | asyrell@skidmore.edu |
| Country?: | USA |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Temp. ileostomy, j-pouch created; entire colon removed |
| Comments: | I was diagnosed with Crohn's only 5 years ago so am a late arrival to the club. Just this year my doctor determined that I probably have 'only' UC. None of the medications we used would hold off flares effectively for more than 6 months. This fall it was determined that I was a candidate for colon removal. I had 2 surgeries as the surgeon initially just hooked the ileum up to the j-pouch. For whatever reason, my system didn't like that so an emergency temp. loop ileostomy was done. I went through 6 different brands and types of supplies before we found a system that would work for me. I've been in a hospital for over 4 weeks just since the first surgery on Oct. 9th. Does it really ever get better? |
| Name: | John Smith |
| E-mail address: | jsmith117@triad.rr.com |
| Country?: | USA |
| Type Of IBD: | Chrohn's |
| Type Of Surgery : | Colon removal |
| Comments: | Had my surgery on Dec. 19 and was released on Dec. 24. I was happy to be home for Christmas. Had chrohn's for 21 years. Found the cancer during an annual colonoscopy. Caught it early and thankfully, I don't need chemo. Just checking out your web site and hope to hear from you soon. Happy New Year, John |
| Name: | Barb Lithander |
| E-mail address: | BarbLilthander@gmail.com |
| Country?: | USA |
| Type Of IBD: | rectal cancer |
| Type Of Surgery : | sigmoid colonoscopy |
| Comments: | I just ran across this site today. I was very pleased to find it! I had my surgery 2 months ago. I think maybe I saw this listed on Facebook? I tried to be included in the "group" or whatever it's called, but I never got a confirmation. Then again, maybe it's not you at all. I haven't had a chance to get through the entire site. I'll do that now. Thank you. |
| Name: | diane |
| E-mail address: | duskyrose17@aol.com |
| Country?: | United States |
| Type Of Surgery : | colostomy |
| Comments: | Hi shaz
your page is most inspiring, even though i had my permanent colostomy over a year now iam still depressed about it iam recovering from rectal cancer stage 3 so i know the ostomy saved my life hopefully in time i will adjust u are a angel and a uplift to me iam 59 years old mother,and grandmother i also suffered from ulcerative colitis as a child so i can relate to your experience. love diane |
| Name: | Mark |
| E-mail address: | the.fone@gmail.com |
| Country?: | United States of America |
| Type Of IBD: | Crohn's |
| Type Of Surgery : | Ileostomy |
| Comments: | Thanks for creating this web site. I just recently had an ileostomy and it's been a challenge to get used to it. I've had a few "accidents", one in a movie theater and once while I was asleep, where the pouch leaked everywhere, and those experiences have made me even more paranoid about being able to master this. I know that will come in time but for now it's still pretty difficult. Anyway, thanks for making this site for people like me, it makes me feel less alone with this. |
| Name: | Kathi Elder-Hibler |
| E-mail address: | IHSM@aol.com |
| Country?: | USA |
| Type Of IBD: | temp ileo |
| Type Of Surgery : | rectal cancer |
| Comments: | hoping this site will help me find answers to questions like...how to shower without changing the bag daily, how to us public bathroom when bag needs emptied, how to drink cola pop without the bag ballooning up from the drink...etc. stuff they don't tell you in the hosp.
kathi in Oregon |
| Name: | K |
| E-mail address: | karriebud@hotmail.com |
| Country?: | USA |
| Type Of IBD: | none |
| Type Of Surgery : | none |
| Comments: | Shaz, I am a medical student in Nebraska and I just wanted to say thanks for the site about the different types of ostomies. It was a comprehensive and well put-together overview of the different surgeries, which is just the kind of thing I was looking for to review. Thanks again, and keep up the great work! (PS - I'll trade you the weather in Austrailia for the below 0 degree weather we've got here right now!) |
| Name: | Harry Dym |
| E-mail address: | dyhar01@yahoo.com |
| Country?: | usa |
| Type Of IBD: | na |
| Type Of Surgery : | na |
| Comments: | I am a radiology tech-student. I was searching for info on ileostomy and came across your page.
All the best Harry |
| Name: | Deborah Elaine Gordon |
| E-mail address: | starlightbarking@hotmail.com |
| Country?: | Canada |
| Type Of IBD: | ileostomy |
| Type Of Surgery : | uneccessery |
| Comments: | Have had ileostomy for 14 yrs due to having a blockage in my small intestine they did not operate for a week after I went into the hospital,by then my bowl had gangrened and I have been left with a small amount of small intestine.Nobody seems to understand how unfeminine with one.I use an open end drainage pouch(hollister)people when they find out yes go OOHHGGGRRRRGGGRRROOOSSS.I was told it was cancer and send home to die,we found out 3 weeks later it was'nt cancer just a blockage.I used to ride horse and show dogs proffessionally but that has been curtailed.Still breed arabian horses and sometimes green break them,but my 26yrold daughter does the rest and shows them.My diet is a laugh so many foods you can't eat.I'm glad I found your site a found a little bit of what goes on in someone elses life.And its neat you are in australia as my brother is a proffesser at the univesity of austraila.Take care |
| Name: | Carol Green |
| E-mail address: | carolanngreen@yahoo.com |
| Country?: | USA |
| Type Of Surgery : | colostomy |
| Comments: | I ate Frank's hot sauce two weeks ago and every day since I have had huge messes of orange looking oil on my wafers, bags, sheets, clothes. One drop makes the wafer lose its contact with m y skin and fall off. My ostomy specialist (40 years experience) and my colorectal surgeon have never heard of something like this going on for more than two days. It is like this ostomy is into a non limited orange oil field and it is processing that oil to dispense daily. Help!! I have taken Imodium as my surgeon suggested: no cure. |
| Name: | Ramesh Babu |
| E-mail address: | mail2rameshbabu.m@gmail.com |
| Country?: | india |
| Type Of Surgery : | UroStoma |
| Comments: | HI SHAZ,
I am very happy to see all on this forum .I am an urostomy from my childhood onwards. right now I am 25 ,working as a software engineer in one of the MNC in India. I am living with my parents and two elder brothers. Really i am getting motivation and help from my family . I completed my B.E (BACHELORS OF ENGINEERING IN COMPUTERS). Right now i am working as webdeveloper (Sharepoint(moss2007) and .net technologies) Suggestions to Urostoma People: 1> Be positive always. 2> Drink plenty of water . 3> Take lightweight food. 4> Maintain stoma appliances as much as we need. Life is going cool now.. recently i attended for the ostomates india annual meeting in Bangalore. I was really happy to meet the people in the annual meeting of ostomates. About Me : DOB:1983 type of stoma :Uro Stoma( from 1983) EDUCATION:BE(COMPUTERS SCIENCE) Working as :Software Engineer in Indian MNC EMAILID:mail2rameshbabu.m@gmail.com country:india state:bangalore Inspiration: Mother Teresa,Abdul kalam,Stephen William Hawking. My INTERESTS: EACH AND EVERY DAY I WILL LOVE TO LEARN NEW THINGS IN TECHNOLOGY AS WELL AS IN LIFE. Hobbies: watching movies. surf the web. If you want any suggestions on Urostomy PLEASE FEEL FREE TO SEND A MIAL. mail2rameshbabu.m@gmail.com Thanks & regards Ramesh |
| Name: | Beth Cole |
| E-mail address: | tutukeb@wmconnect.com |
| Country?: | usa |
| Type Of IBD: | diverticulis |
| Type Of Surgery : | permanent colostomy |
| Comments: | Hi,Shaz!I am so glad thatI found this site..I have been feeling like I am the only person with this type of problems.I would really love to chat with you or someone.I have had 5 surgeries since Oct.2007...One of which i was home only 1 day after surgery and preferated and had to have emergency surgery..My biggest problem is that they cant seem to find the right products for me..My bags come loose all the time and the most stay on for 2 days. In my town there is only 1 ostomy nurse and she is new but does her best. I have been home from the hospital 2 weeks now after having been there 26 days..Pretty slow recovery right now.Anyway thanks again and hope to hear from you or someone soon...I live in West Virginia and I am 55years old Have a blessed Christmas...Beth |
| Name: | Elise Lambert |
| E-mail address: | Shimjung@aol.com |
| Country?: | USA |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | ileostomy |
| Comments: | I had ulcerative colitis from age 18 to 30 at that time I had to get a whole colostomy and now I have an ileostomy. The problems I have are: dehydration, low energy. I give myself a B12 shot once a week but it doesn't seem to be enough and I am not sure of the dosage.
I am an artist painter and have presently wrote and illustrated a children's book. I am researching about how to get it copyrighted and published. I am looking to chat with other ostomates to exchange info and ideas. |
| Name: | Hannah Lawson |
| E-mail address: | Han19law@gmail.com |
| Homepage URL: | http://www.ucandkids.blogspot.com |
| Country?: | United States |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | j-pouch |
| Comments: | They took my colon in 2005. Got my j-pouch 3 months later. Had a few complications. But life is good, attitude is everything..and I'm glad to be rid of the sick colon! Good luck and thanks Shaz! I like your site! |
| Name: | Alan |
| E-mail address: | alanhwillson@btinternet.com |
| Country?: | United Kingdom |
| Type Of IBD: | Diverticulitis and IBS |
| Type Of Surgery : | total colectomy with permanent ileostomy |
| Comments: | This is a great site. Well done. I had my operation in june this year but they still can't seem to get the pouch fitting right and I am having leaks every 6 - 8 hours. Hope they get it right eventually!! Happy Christmas!! |
| Name: | Lisa |
| E-mail address: | lisa.brown@paradise.net.nz |
| Country?: | New Zealand |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Total Colectomy |
| Comments: | Your page is awesome. I have had my ileostomy since January 2008, am supposed to have reversal as have had a J-pouch formed. Am considering keeping my ileostomy as had complications when doctor tried reversal. I am 39 and had Ulcerative Colitis for 17 years before surgery. |
| Name: | Daun Troncin |
| E-mail address: | dauntroncin@yahoo.com |
| Country?: | USA |
| Type Of IBD: | divirticular abscess |
| Type Of Surgery : | transverse colostomy |
| Comments: | Shaz;
Your site and the C3life site have saved my sanity this year. Just reading all the comments and experiences helped me so much. I have had successful reversal and now am healing from that. Three surgeries this summer have made me stay in more than usual. You have been my savior. Thank you so much blessings delta |
| Name: | bostomy |
| E-mail address: | tom_harrington2@yahoo.ca |
| Country?: | canada |
| Type Of IBD: | ? |
| Type Of Surgery : | illeostomy, |
| Name: | laurie |
| E-mail address: | lauriearts@aol.com |
| Country?: | unites states |
| Type Of IBD: | ucleractive |
| Type Of Surgery : | ileostomy |
| Comments: | would love to here from you. I am 41 years old and had surgery this past april. will be going to get my rectum removed here dec 11th at cleveland clinic. i am keeping my bag and love it. life is good after 22 years of pain, running to the bathroom, and not eating. |
| Name: | Glenn Baldwin |
| E-mail address: | jib@netspace.net.au |
| Country?: | Australia |
| Comments: | Shaz.
There should be an award for your effort. 10 years ago I was a lost parent with a child with Hirchsprungs disease. 10 years on, I am still appreciative of what your site did for me back then. You are one wonderful person. You gave support by email in the hard times, for which I will never forget. But most importantly you are holding a site open that gives everyone a place to research. You are a legend, I admire you. You are a very special person. |
| Name: | Shelly |
| E-mail address: | shelly410@charter.net |
| Country?: | USA |
| Type Of IBD: | dont know what this means |
| Type Of Surgery : | temp colostomy |
| Comments: | I was looking on the net for support groups or sites with others who have a colostomy. Your site is great...thank you! |
| Name: | Marilyn |
| E-mail address: | mreichard7@msn.com |
| Country?: | USA |
| Type Of Surgery : | Colostomy |
| Comments: | Very nice page! It's wonderful to have found other ostomates. Fantastic of you, Shaz, to take the time & interest to help others.
I hope to get active in the site, and to make new friends. God Bless. m. |
| Name: | ernest federspiel |
| E-mail address: | beibejones1@aol.com |
| Country?: | usa |
| Type Of Surgery : | colostomy |
| Comments: | have had this for a years and eight months, have been struggling to find someone to talk to. thanks for having this page ,now maybe i can get some answers and get on with my life. bless you |
| Name: | Kristen R, |
| E-mail address: | remingkm190@potsdam.edu |
| Country?: | United States |
| Type Of IBD: | Crohns |
| Type Of Surgery : | Ileostomy |
| Comments: | Wow! I love your page!!! This is exactly what I have been looking for! I am 22 and had to have an emergency ileostomy because of severe Crohns and a perforated bowel (in 3 places...wooo) This site is wonderful, thank you so much! I am glad to find a place where I can relate to everything. I am having the rest of the rectum removed in a few months to make it a permanent ileostomy, and I am happy to see that there is a site that shows the joys of having a "normal" life with a stoma. |
| Name: | Kristen R, |
| E-mail address: | remingkm190@potsdam.edu |
| Country?: | United States |
| Type Of IBD: | Crohns |
| Type Of Surgery : | Ileostomy |
| Comments: | Wow! I love your page!!! This is exactly what I have been looking for! I am 22 and had to have an emergency ileostomy because of severe Crohns and a perforated bowel (in 3 places...wooo) This site is wonderful, thank you so much! I am glad to find a place where I can relate to everything. I am having the rest of the rectum removed in a few months to make it a permanent ileostomy, and I am happy to see that there is a site that shows the joys of having a "normal" life with a stoma. |
| Name: | httpd |
| E-mail address: | manager58429189@ballyfinance.com |
| Homepage URL: | http://homeimprovement.hit.bg |
| Country?: | Engl |
| Comments: | sdewqd |
| Name: | Nick Trubov |
| E-mail address: | ntrubov@ipa.net |
| Country?: | USA |
| Type Of IBD: | cancer (rectal) |
| Type Of Surgery : | removal and ostomy |
| Comments: | Shaz,
I just returned from reading your great "history" of ostomies. I look forward to being a regular on the ostomy group whose WWW site is being "fixed" as I type. Thanks, NT |
| Name: | mela |
| E-mail address: | piotrkows2@aol.com |
| Homepage URL: | http://yahaoo |
| Name: | mela |
| E-mail address: | piotrkows2@aol.com |
| Homepage URL: | http://yahaoo |
| Country?: | us |
| Type Of IBD: | ostomy |
| Type Of Surgery : | colosmy |
| Comments: | i am regestered with you |
| Name: | graeme sheriff |
| E-mail address: | graemesheriff@hotmail.co.uk |
| Country?: | england |
| Type Of IBD: | UC |
| Type Of Surgery : | LARGE BOWEL REMOVEDI |
| Comments: | first let me say what a great site i used to feel very alone when i first got diagnosed with colitis that was nine years ago ispent alot of time in hospitals seeing specialists and doctors none of my friends or work mates had heard of this very horrible disease so iused to make ajoke out of constantly running to the toilet but it eventually got to point when i got very ill and i suppose depressed two years ago i had my bowel removed it made such a difference to my life i could take my kids out, take them to football matches go campingand even go swimming before my surgery this would of been impossible twelve weeks ago i had to have my rectum removed because i was still bleeding inside thats the final stage of what has been adifficult nine years but because of the surgery i feel i can live again and after reading some of the stories irealise i am not alone thanks shaz good luck and good health to everybody who reads this web page |
| Name: | joanna middleton |
| E-mail address: | joannarachel@hotmail.co.uk |
| Country?: | uk |
| Type Of IBD: | perianal chrons |
| Name: | Joyce Cafasso |
| E-mail address: | Guidoswife@Verizon.net |
| Country?: | USA |
| Type Of IBD: | Colostomy |
| Type Of Surgery : | Rectal Cancer |
| Comments: | I had my surgery in 1986 and still going strong. I also had 5 weeks of radiation and no return of the cancer.
I do have a problem with occasional Intestinal Blockages and have to go to the ER to get treatment. ):-( I also irrigate every 2 to 3 days which seems to help but then I get a blockage and I'm not sure what I ate that did it. |
| Name: | Joyce Cafasso |
| E-mail address: | Guidoswife@Verizon.net |
| Country?: | USA |
| Type Of IBD: | Colostomy |
| Type Of Surgery : | Rectal Cancer |
| Comments: | I had my surgery in 1986 and still going strong. I also had 5 weeks of radiation and no return of the cancer.
I do have a problem with occasional Intestinal Blockages and have to go to the ER to get treatment. ):-( I also irrigate every 2 to 3 days which seems to help but then I get a blockage and I'm not sure what I ate that did it. |
| Name: | Shelley Quinn-Becker |
| E-mail address: | sqb@charter.net |
| Country?: | USA |
| Type Of IBD: | Ulcerative colitis |
| Type Of Surgery : | Ilieostomy |
| Comments: | I have been reversed for about a year and a half; still have fears...so you are not alone. |
| Name: | DAVID CHALK |
| E-mail address: | dachalk3@tesco.net |
| Country?: | U/K |
| Type Of IBD: | U/COLITIS |
| Type Of Surgery : | COLOSTOMY |
| Comments: | I WAS THAT ILL AND DEPRESSED,I WANTED TO DIE.
NOW WITH MY BAG,THE WORLDS MY OYSTER.. |
| Name: | JEANIE HUDMAN |
| E-mail address: | top_klass@yahoo.com |
| Country?: | USA |
| Type Of IBD: | cancer |
| Type Of Surgery : | colostomy |
| Comments: | Hey Shaz! enjoyed your site, this is a surgery very soon to happen, have tried all sorts of 'remedies', have pretty radical radiation damage, and at the end of my rope, had been nice to see how, and hear how someone else is coping. Thanx, for taking the time to do this. Your site, does help this to not be so 'scarrey'!
so thanx again, and I hope you are doing well. xoxo Jeanie |
| Name: | JEANIE HUDMAN |
| E-mail address: | top_klass@yahoo.com |
| Country?: | USA |
| Type Of IBD: | cancer |
| Type Of Surgery : | colostomy |
| Comments: | Hey Shaz! enjoyed your site, this is a surgery very soon to happen, have tried all sorts of 'remedies', have pretty radical radiation damage, and at the end of my rope, had been nice to see how, and hear how someone else is coping. Thanx, for taking the time to do this. Your site, does help this to not be so 'scarrey'!
so thanx again, and I hope you are doing well. xoxo Jeanie |
| Name: | Linda Fleming |
| E-mail address: | lindafleming@att.net |
| Country?: | USA |
| Type Of IBD: | breech of small intestine from medications |
| Type Of Surgery : | iliostomy |
| Comments: | Had what I thought was a simple appendectomy in March of 2008. Turned out to be a breech of small intestine due to chronic use of steroids and other meds for RA, dermatomyositis, and myasthenia gravis(spelling?). Was in the hospital for 7 months and am now home with 24 hour care that is costing a lot, but I have gained weight (72 pounds to 110) Am hoping to get back to work in the New Year to pay off my debts. In all, I feel blessed and happy. My book is almost done and my life is filled with wonderful people. Thanks for listening! Goodnight! By the way, I also named my iliostomy. "Junior" |
| Name: | Adam Kelley |
| E-mail address: | adamjameskelley@gmail.com |
| Country?: | USA |
| Type Of IBD: | Crohn's |
| Type Of Surgery : | bowel resection |
| Comments: | Hi Shaz
I came across your site while doing research on my new ileostomy (2 months old now). My doctor's say it's reversible but, it's still pretty scary. I love that you named your ostomy; that never would have occurred to me. Just wanted to thank you for sharing your story. It makes it easier for us newbies to hear about others with ostomy experience. Thanks again ~Adam |
| Name: | Loretta C. Pincent |
| E-mail address: | cpinsec632@rogers.com |
| Country?: | Canada |
| Type Of IBD: | Colorectal Cancer |
| Type Of Surgery : | Colostomy |
| Comments: | Scheduled for surgery in 3-3 weeks...scared to death and looking for any/all the support I can get from people like yourself who have 'been there-done that'...
I am thankful for this Site and good supportive people like yourself. I will be visiting quite often after my surgery. ..LP |
| Name: | Lucy Konradi |
| E-mail address: | lkonradi@swbell.net |
| Country?: | USA |
| Type Of IBD: | Colostomy |
| Type Of Surgery : | Removal of rectum and sigmoid colon |
| Comments: | Dear Shaz:
I just read your wonderful page regarding the ileostomy you've been living with for such a very long time. Your attitude is inspiring, to say the least. In my case, I was diagnosed with a rectal tumor in June, 2007, had surgery to remove it and its lymph nodes in July, 2007 and by the time I could get to the oncologist who was to put into action a treatment plan of chemo, the cancer had gone from stage 1 to 3 and had metastasized to my lung. A good size tumor was then removed from there and I finished two rounds of chemo about 3 weeks ago. The least CT and PET scans showed no further development of tumors and, for the moment, I am in remission. Radiation was unavailable to me for this cancer go-round since I had the maximum rads possible when I was treated for a stage IV cervical cancer in 1994-5-6. My doctor had little hopes for me then but, here I am, still kicking around and am a joyous and relatively happy 75 year-old, delayed-development "teen-ager"...... or so I'm told. I simply cannot relate to other 75 year olds-- they all seem to act so "old" to me! Anyhow Shaz you are an inspiration and I'm so glad I discovered you on my latest google-ing around. :) Lucy Konradi |
| Name: | Irene |
| E-mail address: | ikw99@aol.com |
| Country?: | USA |
| Type Of IBD: | Ulcerative colitis (for 15 yrs) |
| Type Of Surgery : | Ileostomy (1985) |
| Comments: | Shaz...
I was fascinated by your story, and I must say we have more than one thing in common: 1) the ileostomy, and (2)a positive attitude. I fully agree that Attitude is the making or breaking ingridient in life. So, for now let me wish you the best. God Bless you and yours. |
| Name: | Brenda O'Neil |
| E-mail address: | jjoneil114@Comcast.net |
| Country?: | USA |
| Type Of IBD: | Ileostomyous /and descending |
| Type Of Surgery : | Cancerous polyp |
| Comments: | I have been looking for a support group in my area for a few months to no availi so when I came across this site I became excited to know that there are other people with the same problems who are willing discuss it with other people. In December of 2007 I went in the hospital to have my polyp removed which was attached to my stomach side. My two day surgery became a one month stay and three operations later. I'm 59 years old and I wasn't quite ready for this change. While in the hospital I lost 49 pounds,which was a good thing. Because I am a diabetic it took eight months for my incision to heal. My husband and I have had some funny episodes and some very depressing ones. We're dealing with it, but with the support of my husband , sister and family I know I'll make it. |
| Name: | fedrick |
| E-mail address: | adrianfedrick@bellsouth.net |
| Type Of Surgery : | ileostomy |
| Comments: | fistula repare didnt work i died three times they said had a colostomy first that messed up then to save my life they placed a ileostomy on my side |
| Name: | Sue Rizvi |
| E-mail address: | sahr786@msn.com |
| Country?: | usa |
| Type Of IBD: | cancer |
| Type Of Surgery : | ileostomy |
| Comments: | I am considering having my ileostomy reversed but would still have my colon. Since I had the ileostomy due to cancer and it was given while my colon healed. I woke up to find out the durgeion removed my rectum. Now I have the option to keep the ileostomy or have it reversed. But I would still have a colon and the possibility of cancer returning to the colon. Help!
Thank you for your help. |
| Name: | Katrina Whitcher |
| E-mail address: | wombag@googlemail.com |
| Country?: | uk |
| Type Of IBD: | Uncontrolled Crohn's Disease |
| Type Of Surgery : | Abdominoperineal Excision of Rectum (APER) |
| Comments: | HAD CROHN'S FINALLY DIAGNOSED IN AUGUST 2000, AFTER SYMPTOMS BEEN AROUND FOR YEARS, IGNORED BECAUSE BEING LADY IT WAS ALL TO DO WITH PERIODS!!! HAD TEMPORARY ILEOSTOMY IN FEB 2001, TO GIVE MY LARGE BOWEL A REST THEN TREATED WITH INFLIXIMAB, HAD A HERNIA BEHIND ILEOSTOMY SO I NEEDED IT TO BE REMOVED,IN MARCH 2003. I HAD CROHN'S THAT WOULD NOT BE CONTROLLED PROPERLY WHERE I NEEDED TO HAVE A HOSPITAL STAY OF 10 WEEKS THAT CULMINATED IN A LOOP COLOSTOMY IN JUNE 2005. I THEN STARTED TO SUFFER FROM PROBLEMS WHERE THE COLOSTOMY BEING A LOOP COLOSTOMY IT MEANT THAT I STARTED TO POOH IN MY BAG BUT AT THE SAME TIME, I WAS STILL POOHING FROM MY RECTUM AS WELL AS BLEEDING AND IT WAS GOING TO TOILET UPTO 20 TIMES EACH DAY. THEN IT CULMINATED IN ME HAVING TO HAVE AN ABDOMINOPERINEAL EXCISION OF RECTUM (APER), WITH A PERMANENT COLOSTOMY AFTER THEY TOOK AWAY MY COLON!!!! THIS WAS DONE ON 10TH DECEMBER 2007, WELL THEN I CAUGHT MRSA IN MY BLOOD AND BOTH OF MY OPERATION SITES, SO I WAS IN HOSPITAL ALL THROUGH CHRISTMAS AND NEW YEAR, I AM STILL TRYING TO RECOVER FULLY FROM THE OPERATION AT THIS TIME!!!! THANK YOU FOR READING MY LITTLE LIFE STORY
FROM KATRINA |
| Name: | hugh o donnell |
| E-mail address: | HOD_05@HOTMAIL.COM |
| Country?: | IRELAND |
| Type Of IBD: | FAP |
| Type Of Surgery : | ILLEOSTOMY |
| Comments: | HAVE FAP SINCE I WAS 14 HAD MY ILLEOSTOMY IN 1998 AT THE AGE OF 22 WHICH WAS HARD AT THE TIME ,ITS NOW 10 YEARS ON AND I HAVE LEARNT ALOT IN DEALING WITH FAP BUT SINCE I LIVE IN IRELAND NOT MANY PEOPLE LIVE WITH FAP IN IRELAND SO I WOULD TO HEAR FROM PEOPLE WITH FAP AND LOVE TO HELP PEOPLE WHO ARE GOING THRU THE SAME AS I DID. |
| Name: | Marisol Gloriani |
| E-mail address: | marisol_gloriani@yahoo.com |
| Country?: | Singapore |
| Type Of Surgery : | Ileostomy |
| Comments: | Good to know I'm not alone ..it must have been hard for you, too ..at the start ..but we're are still blessed with ever supporting family ..but mine is not permanent . I will be having my 2nd surgery by November i went thru 8 sessions of chemotherapy and 6 weeks Radiation because mine was considered cancer of the colon stage III |
| Name: | Karen |
| E-mail address: | karensrainbow4@hotmail.com |
| Country?: | USA |
| Type Of IBD: | U.C. |
| Type Of Surgery : | Ileostomy |
| Comments: | Hello Shaz and fellow Pouch People :)
I admire those with positive attitudes, and pray for those who are fearful, suffering or angry. I have had my ostomy for 21 years, and I just turned 42. I know how hard it is to be young and sick, and dealt with U.C. for 5 years, until my blessed surgery. Oscar and I do well together. He causes no troubles, and I find staying fit, exercising daily, and eating healthy keeps us both well and in good shape. I am a vegetarian, I lift weights, do yoga, SCUBA dive, swim, and even wear a bikini (with a high waist bottom. I travel, shop, and enjoy life to it's fullest. The ostomy saved me - and I will treat each day as a blessed gift. I do hope you can all do the same. Best wishes, dear ones. |
| Name: | Hulda Kristín Valgarðsdóttir |
| E-mail address: | huldakv@simnet.is |
| Country?: | Icland |
| Type Of Surgery : | Ileostoma |
| Name: | Estelle Winchester |
| E-mail address: | estellewinchester@hotmail.com |
| Country?: | Australia |
| Type Of IBD: | Bowel Ca |
| Type Of Surgery : | Resection and Colostomy |
| Comments: |
I was very inspired by how you managed such huge surgery at such a young age. I am 65 and recently had my plumbing rearranged. I have found it very tough going, indeed. May your life be full and joyous - you really are "something else". Some guy is gouing to "land" a very special woman. Regards. Estelle |
| Name: | heidi hess |
| E-mail address: | hess-vesbeck@web.de |
| Country?: | Germany |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Kock Pouch |
| Comments: | Hi, Shaz!
I am very glad that my long-time friend in USA, Janet, told me about your side. H i s t o r y : I got to know about the colitis when I was 17. I had to be operated in the age of 27. I think, I do not have to tell you how difficult it was to say `yes´ to this special operation.. ( no one of my neighbours, friends, kollegues knows about it). `No! You can ask me again when I am 60!´, I told my doctor in Hannover, Germany. But it HAD to be done (I weighed 35 kg by then..., I am 1,67 m tall! and 60 kg is normal). So I got a `normal´ ileostomy for 2 years. K o c k P o u c h: Then I went to Gothenburg in Sweden, where I met the wonderful!!! Prof. Kock. He operated me in `Carlanderska Sjukhemmet´( Carlanderska hospital). Since these days, in January 1979, I celebrate a second birthday !!! Yes, I do! I have NO! problems with the Kock Pouch at all. There is no better operation than this! It is absolutly continent and I just only go 3 times/day to the toilette, even less when we are on a journey. I, myself, sent about 30 patients to Prof. Kock and they all are happy! S t o n e s ( facel stones ): I heard that VERY few patients have problems with stones. I have THE cure for it! Ask your doctor about a medicine for the gall liquid! The boddy cannot get it back as we do not have the great intestine anymore. So we need the help of some meds. In the moment I take `Vasosan´, by Dr. Felgentraeger, Germany. It is a colestyramin and in the first place it is made for people who have too much colestrol in their blood, but for our purpose it helps as well. It is perfect! B e n d C a t h e t e r : Something else: There are no bend!!!! catheters anymore on the market. If you need them, like I do, write to: Frau und Herr Marianne und Klaus Paschke Peterstr. 9 66424 Homburg Germany They still produce them. Believe me! It took me a long time and many phone calls to find these people. If I can help someone, do write me a mail. B U T !!!! My biggest problem>>> I have only very little time! VERY little! Your Heidi |
| Name: | Julie Lyons-Vague |
| E-mail address: | lyons-vague.julie.m@edumail.vic.gov.au |
| Country?: | Australia |
| Type Of IBD: | Bladder Cancer |
| Type Of Surgery : | Ileal conduit |
| Comments: | Hi Shaz,
Not many urostomates here. I live in country Victoria so not much support around. I'm doing really well though in the last 7 months. Cheers Julie |
| Name: | mela |
| E-mail address: | piotrkows2@aol.com |
| Country?: | u.s. |
| Type Of IBD: | colostomy |
| Type Of Surgery : | part of large intestine removed |
| Comments: | Hi Shazs
My name is mela i been looking for a site like yours. I see i am not the only one the problems is i was operated only 2months ago.And was told nothing and i am learing on my own I keep asking for a support in my area N.C, but no luck please help me .I still feel sick not ony do I have a colomy I also have RA.very bad. I need to know how often do you remove the pouch. and when do you become regulated Iam tied walking with full pouch. ThankYou for listening mela Oct 15 2008 |
| Name: | Tara Marino |
| E-mail address: | tara.marino@hotmail.com |
| Country?: | US |
| Comments: | I am a student nurse looking for resources for patients that have new ostomies when i found your site. i will be sure to pass it on!
Thank you! |
| Name: | Linda |
| E-mail address: | ltristram@yahoo.co.uk |
| Country?: | England |
| Type Of Surgery : | Illeostomy |
| Name: | Sandy Gordon |
| E-mail address: | packrats@wctc.net |
| Country?: | usa |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | illeostomy |
| Comments: | I have had my ileostomy for 33 years. I am very pleased with the results of my surgery. I was sick for 8 years with uc and I am thankful for my life as an ostomate. |
| Name: | Anita Iannuzzi |
| E-mail address: | anitaeye83@optonline.net |
| Country?: | USA |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Ileostomy |
| Name: | John Simmonds |
| E-mail address: | samsimmonds@bigpond.com |
| Country?: | Australia |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Ileostomy?Failed J Pouch |
| Comments: | Well Done Shaz for putting this together. It is always great to read about other ostomates and to be assured that we are not alone with this curse. I welcome any persons comments if you too have experienced a failed "J" pouch as yet I have not found anyone else. |
| Name: | Lee Walden |
| E-mail address: | mlwalden@comcast.net |
| Country?: | USA |
| Type Of Surgery : | Colon removal |
| Comments: | I appreciated your comments about a positive attitude. I am just getting acquainted with my stoma. My surgery was just seven weeks ago. I may give it a name, like you did. |
| Name: | Debbie Cianci |
| E-mail address: | josephine_515@yahoo.com |
| Country?: | usa |
| Type Of Surgery : | colostomy |
| Comments: | I'm so glad I found Shaz's Pages.I had my surgey March 27th 2008, Had another one April 7th 2008,it took time for me to adjust to it, thanks with the help of my friend Ana. I was in the hospital for 23 days she was with me evey day,even when I went home,she came every day,she taught me how to put on my colostomy bag,went to the wound clinic and all my doctor appointments with me. I,m learning to live with it. Thanks to her. Now your on my favorites. Looking foward to following up on your site. |
| Name: | Dan tobar |
| E-mail address: | benbolt8@aol.com |
| Country?: | USA south texas |
| Type Of IBD: | colitis |
| Type Of Surgery : | ileostomy |
| Comments: | Had mine @ 18 Iam now 41 ola my friends |
| Name: | Jane Reynolds-Tate |
| E-mail address: | srt@uwclub.net |
| Country?: | United Kingdom |
| Type Of IBD: | rectal cancer |
| Type Of Surgery : | resection |
| Comments: | Hi Shaz, My dad has just had a resection leaving him with a stoma and bag. He is 77 years old. His operation was 3 weeks ago. He is having problems wth sever tummy pains and vomiting. Reading your letters and looking at other sites on the internet i have discovered that a few patients do have these symptoms. My dad is so dehydrated and weak and looks so poorly. His stoma is working now hopfully he will pull through. He is on a rehydration drip and special food drip. I want him to come through this so much. THank you for your site and information it helps alot. |
| Name: | Jamie Gambino |
| E-mail address: | aldinesxychica@yahoo.com |
| Homepage URL: | http://www.myspace.com/xxjaylynnxx |
| Country?: | US |
| Type Of IBD: | Ulcerative ColItis |
| Type Of Surgery : | ileostamy |
| Comments: | Hello everyone, im so glad I found this site, wish i could have found it a little sooner. I had my ileo surgery a week after my 18th birthday and was already in the hospital 2 weeks previous so my whole ordeal was pretty depressing for me. not saying that its the easiest thing in the world to go thru otherwise but i just felt like that should have been a good peek in my life and there i was layin in a hospital bed sick as a dog. lol but im sooo much better now. I still have my days when i think about my scars i have and the scars to come in the next few weeks for my Jpouch surgery but im sure i will get used to those also. i have a great family and great partner whos been there through it all and still makes me feel like im his everything on the days when all i can see or think about is my flaws. ive been looking for sites like these because as much support i get from them it would still be nice to talk to and hear from other people who are actually going thru the same thing or that have in the past. u can contact me on either addresses i would really love to hear from you all. thanks!
Jamie Lynn |
| Name: | Donna B |
| E-mail address: | donnabenson31@yahoo.co.uk |
| Country?: | England |
| Type Of IBD: | Familial Adenomatous Polyposis |
| Type Of Surgery : | Ileostomy |
| Comments: | I was diagnosed with FAP in 1996 and had surgery in 1997 aged 16. I originally had the ileo anal pouch but due to major complications-the blood supply was cut to the pouch causing it to die and developing gangrene, which led to further surgery to create an ileostomy. Which later became permanent. I call my stoma "Stevie!!!" Although I had symptoms before I was diagnosed with FAP I wasn't in any pain, but now I am in constant pain as a result of scar tissue and nerve damage etc due to many many operations. It would be lovely to chat to fellow ostomates and people who also have FAP from around the world.
Fantastic site!! |