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| Name: | sisrodgers |
| E-mail address: | sisrodgers@comcast.net |
| Country?: | usa |
| Type Of Surgery : | not sure what's called |
| Comments: | I do want to know more and soon will since my surgery is scheduled for the 21st of May. I will have a permanent colostomy. Cancer of the rectum was my illness. the cancer is gone now but the surgery is to prevent any reoccurence if possible. My family wants me to have it done so they can see my pretty face for a while longer. |
| Name: | Alison Lagalo |
| E-mail address: | alisonlagalo@yahoo.com |
| Country?: | usa |
| Type Of IBD: | cholacal extrophy |
| Type Of Surgery : | ileostomy |
| Comments: | Hello Shaz,
i'm an 20 year old girl from michigan, i just wasn't sure if you were familier with cholaocal extrophy, i was born with it, its were most of your intestines and bladder are on the outside of your body when your born. i wasn't born with a large intestine too. since i also have bladder extrophy i also have to cathederize along with my ileosotmy, i was just wondering if you've ever talked with anyone that has this condition.my doctors did tell me its a very rare condition, coming either from just not developing right or i could have been a conjoined twin because my body was completly open from about my stomach down. well just wondering if you've heard of choloacal extrophy let me know :) |
| Name: | ingrid |
| E-mail address: | gutierrezingrid5@gmail.com |
| Country?: | usa |
| Type Of Surgery : | total pelvic exenteration colostomy and miami pouch urinary diversion |
| Comments: | SHAZ THANK YOU SO MUCH MY MOM AND I WE LOVE U SO MUCH |
| Name: | Shanaaz |
| E-mail address: | shanaaz_nyu@yahoo.com |
| Country?: | USA |
| Type Of Surgery : | Ileostomy |
| Comments: | Hi Shaz
Just a quick hello form New York and a heartfelt 'thank you' for your amazing website. I have a patient who recently had an ileostomy and while she's doing great adjusting after surgery, directing her to your site has helped more than any piece of doctor/patient explaining and comforting ever could. You are an inspiration. Stay blessed Shanaaz |
| Name: | Mary Bennett |
| E-mail address: | marybenn2@embarqmail.com |
| Country?: | USA |
| Type Of Surgery : | Lg intestine removal |
| Comments: | I have greatly appreciated reading of your experience, especially as it relates to the importance of a positive attitude. It actually is my husband who will have surgery on May 12 to remove his large intestine (his sigmoid was surgically removed on Nov. 20, 2007), and he has had real difficulty addressing the fact that he will have to wear a bag following surgery. I believed that if I could give him first-hand accounts of people living with an ostomy bag, it would help move him up out of his depression and into a more positive outlook. Thank you for your sharing.
Mary Bennett |
| Name: | Kimberly |
| E-mail address: | leohrt81969@yahoo.com |
| Country?: | United States |
| Type Of Surgery : | ileostomy |
| Comments: | Thank you so much for all the info you have on this page it has been such a great help. I had my surgery Sept 15,2007 due to a large abscess in my abdomen they suspect it was from diverticulitis. I am 38 years old and would enjoy talking to others that have had an ileostomy. My ileostomy is temporary but I cannot have it reversed right now due to the fact I do not have insurance coverage and the first surgery was quite expensive and I did not have insurance for it either. The hospital will not do my reversal until I have financial aid of some sort. Medicaid denied me due to the fact I have not had this problem for a year. I just want to thank you for having the info here and the support that I need . |
| Name: | Sandra Stevens |
| E-mail address: | woolley1898@verizon.net |
| Country?: | USA |
| Type Of IBD: | N/A |
| Type Of Surgery : | N/A |
| Comments: | Hi everyone;
I would like to direct this to anyone who has a permanent colostomy.I have my colostomy two years this coming June.I was never told to expect what I am now going through,and hope that maybe someone out there is either going through it or has it,and it has been taken care of.I am have a real bad problem with constant mucus draining from my rectum,along with what looks like diarrhea.It has basicly put a hault to me going out for any length of time because of it.I have to wear a pad to cover my rectum,but that really does not work.I still manage to over flow.The doctors are just guessing and what it can be,but I am tired of it.Summer is coming and I love to swim,but I can not go into the water with this going on.If any one has been through this,or has any idea of what is going on,I surse would appreciate hearing from you.This has been going on for about seven months now and is getting worse.No matter if I am sitting,standing,walking,or lay down,here it come,24/7. PLEASE HELP!!! I am desperate. Thank You Sandy |
| Name: | Ruth Tinney |
| E-mail address: | rt@mymacmail.com |
| Country?: | Australia |
| Type Of Surgery : | Colostomy |
| Comments: | Had emergency surgery for perforated bowel caused by diverticulitis in Feb 2007, resulting in a very poorly formed colostomy. Attempted reversal in Oct 2007 that failed and now have a lovely colostomy called Charlie. First one saved my life, had massive complications, septicimia/renal failure/massive infection near spleen/MRSA in wound resulting in reopening of wound. But the stoma was inverted and constricted so the reversal was considered vital. Unfortunately it failed because of adhesions and problems with blood supply. Charlie was created and has been wonderful, no problems or leakage like the first one. Am aiming for another attempt at reversal in the next 2-3 months. Wonderful page Shaz, found by accident, but bookmarked and and enjoying looking around. |
| Name: | Mary A De Suno |
| E-mail address: | Vesuvio1986@yahoo.com |
| Country?: | usa |
| Type Of Surgery : | ileostomy |
| Comments: | I am new to this and am trying to get as much info I can had my surgery 1-28-08 I can't wait to go back to my water aroebics classes but must wait for my wound at the anus to heal. Any suggestions about the water in a pool with chlorene? Will the bag adhear in the water? Hope to hear from you soon. Not sure how to use blogs I am a 62 year old female new to home computer. |
| Name: | Barbara Poolos |
| E-mail address: | bbpoolos@gmail.com |
| Country?: | USA |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | total colectomy/ileostomy |
| Comments: | I received a MacBook as my 2007 Christmas present from my son. I am teaching myself to use it,since it's my first computer,and I know no one in my rural,mountain town who uses Apple. I tried to connect with your website in Feb.'08,and failed miserably, probably as a result of no internet savvy. I am hoping that I get through this time(April'08),because your site looks so informative. My son is getting married in June '08,in a hot climate, and I would
love to download your travel documents. Also,ways to stay hydrated and cool during his 4-day wedding. I don't know what Homepage URL means. Can you help me? I don't know what goes after http://_______________?? I hope I don't erase this info. You sound so interesting!! |
| Name: | Marie Apodaca |
| E-mail address: | marie.apodaca@ttuhsc.edu |
| Country?: | United States |
| Type Of Surgery : | ileostomy |
| Comments: | Hello Shaz, Well we just got told yesterday my husband will be having this surgery to remove the rest of his colon. He had a portion moved 12 years ago and I think I will need a support group to hep me help. We are still very worried of his health and I want to be able to help him in any way I can, t I think you have a wonderful website, contact me please, Marie |
| Name: | Ian Besley |
| E-mail address: | ian_besley@hotmail.com |
| Country?: | New Zealand |
| Type Of IBD: | whats an IBD? |
| Type Of Surgery : | colostomy & Urostomy |
| Comments: | Nice Page/work.
I'm 36, my bags are 30 and i act like a 10yr old sometimes |
| Name: | Gloria Weaver |
| E-mail address: | gloweaver@pennswoods.net |
| Country?: | USA |
| Type Of Surgery : | Illiostomy |
| Comments: | I'm 50 years old and just got out of hospital 4 days ago. Nothing is going right with my bag, If I get one leak stopped another appears. I have had visits with ostomy teams and still it leaks. It's hard to stay positive when you see a large brown stain on the front of your clothing and your in public.
So...tell me. How do you stay positive and not become so frustrated? Did you have leakage problems at first? |
| Name: | Carrie |
| E-mail address: | chriscarriegodard@yahoo.com |
| Country?: | Canada |
| Type Of IBD: | I.C. |
| Type Of Surgery : | Urostomy |
| Comments: | I have had a urostomy for 8 years now. I am 37. I have never met anyone in my situation as a result never had anyone that can relate. Having a urostomy for me has been horrible but not for the reasons I have read from most. I have extreme frequency. I have to be completely dehydrated to be able to leave the house. That will buy me 10-15 mins. before I need a washroom again. If I drink anything. I am in the washroom every 2 mins. with a full pouch for up to an hr. This surgery was supposed to help. It has made things worse. At least when I had my bladder, I had the option to hold it if I couldn't get to a washroom. I can't seem to get any help. Dr.'s can't find anything wrong. Is there anyone else who has had this problem? Thank God I have a supportive husband but this situation hold our lives up horribly. |
| Name: | Yvonne Bedford |
| E-mail address: | Kylbedford@blueyonder.co.uk |
| Country?: | UK |
| Type Of IBD: | UC |
| Type Of Surgery : | None, but may be in near future |
| Comments: | Good page, just what I was looking for. May have to an ilestomy in future, trying to come to terms with it mentally.
Thanks |
| Name: | Linda |
| E-mail address: | utahcousin@aol.com |
| Country?: | USA |
| Type Of Surgery : | tranverse Colostmy (husband) |
| Comments: | Just want to say it is people like you who have made this entire experience barable. This has been very hard on me, and I know after people like you that I need to be thankful my husband is alive. He is having reversal in 5 days. Keep him in your prayers.....
Linda |
| Name: | Rosalind Chambliss |
| E-mail address: | Ros78@comcast.net |
| Country?: | USA |
| Type Of Surgery : | Ileostomy |
| Comments: | A wonderful site and have found lots of helpful information thank you all. |
| Name: | Marie |
| E-mail address: | Mboy313@aol.com |
| Country?: | USA |
| Type Of IBD: | Chronic constipation |
| Type Of Surgery : | subtotal colectomy/ileostomy |
| Comments: | Hi, My name is Marie. My surgery is coming up on April 3 which is next Thurs. I am very nervous as you can imagine. I have scleroderma which is an autoimmune illness. Because of pain meds and the loss of sphincter muscles and motility problems due to scleroderma, I have chronic constipation. I wont go into the gory details either, lol. But lets just say that my colon is FULL!! I havent read your story yet but I plan to do so later on today. If you have any words of wisdom that you would like to tell me before my surgery, I would love to hear from you. You are the ONLY person that I have been in contact with that has as stoma. I dont know anyone else that has one. So I would love to be in contact with someone who does and would love to have a new friend :).I hope to hear from you soon. Thank you, Marie |
| Name: | Ian Rose |
| E-mail address: | ir740@aol.com |
| Country?: | Canada |
| Type Of Surgery : | Colonostomy + |
| Comments: | Thanks, Shaz |
| Name: | Holly |
| Country?: | USA |
| Type Of IBD: | UC |
| Comments: | My husband had surgery in January after 20+ years of living with UC. He has an ileostomy now and going in for the reversal surgery in September. Having his last major flare up in September he's been on high doses of prednisone. It has caused problems healing and he now has to have an additional reconstructive surgery to repair the pouch. Has this happened to anyone? I told my husband about your site and all the wonderful people sharing their stories about good days and bad days and what they've learned about life with an ostomy. I thank everyone out there for being so brave and strong to share their lives. Thank you for talking about your adjustment period and letting those out there in doubt know that life will go on and you can lead a normal life. |
| Name: | SANDRA HARRIS |
| E-mail address: | s.harris2@ntlworld.com |
| Country?: | SCOTLAND |
| Type Of IBD: | CHRONNS DISEASE |
| Type Of Surgery : | ILEOSTOMY |
| Comments: | HAVING MY OP ON 3RD APRIL, I AM IN BITS ABOUT IT, WONDERING IF I AM STRONG ENOUGH TO COPE WITH THE CHANGE IN MY LIFE STYLE. I AM A VERY HAPPILY MARRIED WOMAN OF 49 WITH ONE SON, OF 17 YEARS OF WHICH I ADORE, I AM A KEEN CYCLIST AND AM APPREHENSIVE ABOUT REMOVAL OF ANUS AND RECTUM BECAUSE OF THE SURGERY I'M TOLD CYCLYING MAYBE BE A PROBLEM AT THIS NEWS I AM DEVASTATED AS IT IS A BIG PART OF MY LIFE I AM HAVING GREAT FUN WITH MY FAMILY WHILE I CAN I HOPE TO KEEP MAYBE WRITING AN UPDATE TO YOU IF THATS OK WITH YOURSELF AND IF YOU HAVE ANY HINTS FOR ME I WOULD BE GRATEFUL THANKS FOR LETTING ME BABBLE ON
REGARDS SANDRA HARRIS |
| Name: | Susan Edens |
| E-mail address: | susan_edens@nps.gov |
| Country?: | USA |
| Comments: | Hello Shaz,
I have been doing research on behalf of my partner, who is looking to having a colostomy due to mainy things, (colon cancer, pain, and more I won't go into ...) and your site (which I haven't yet explored) came up in my search. It made me happy to come upon on that was not a medical language essay on the subject. Thank-you! Susan |
| Name: | Mandy |
| E-mail address: | butterflies@wosib.org |
| Homepage URL: | http://www.wosib.org |
| Country?: | England |
| Comments: | <!--Start Social Butterflies Code-->
<center> <font face="arial, verdana, tahoma" size="3"> <a href="http://www.wosib.org" target="_blank"> <img border="0" src="http://www.wosib.org/socialbutterflies/cards/card3.gif"></a><br> This is a most cordial invitation<br> To join a wonderful group.<br> The Women of Strength and Inner Beauty<br> Think you are strong beauty, too.<br> Women from all walks of life,<br> Coming together here online,<br> We think you'd make a wonderful addition.<br> Please, consider making a positive reply.<br> The sisters would be most happy<br> To have you and your lovely site<br> Come and be among us.<br> It would be to our delight.<br> ©MissZ<br> <img src=http://www.mandysdepression.com/GuestbookGraphics/mandya.gif border="0"></a> </font> </center> <!--Stop Social Butterflies Code--> |
| Name: | Joanne |
| E-mail address: | jlinihan@sbcglobal.net |
| Country?: | USA |
| Type Of IBD: | Crohns |
| Type Of Surgery : | Ileostomy |
| Comments: | Hello All,
Glad to be here. Question:Anyone else depressed dealing with daily pain? I sometimes must force myself to participate in life. I'm just happy to pull the covers over my head and let the day pass. Is anyone else cold all the time? Sorry to be so down. Would you believe I take an antidepressant and still feel this way? |
| Name: | Belinda Robson |
| E-mail address: | binnirob@btinternet.com |
| Country?: | England |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Ileostomy |
| Name: | Linda Austin |
| E-mail address: | musical88keys |
| Country?: | USA |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | possible ileostomy or J pouch |
| Comments: | Thanks for sharing your story. I need to make a decision abut having my colon removed. After an ileostomy, do you have to be on a special diet? Are there other challenges that the doctors don't tell you about?
I would love to hear from you if you have time. Thanks, Linda |
| Name: | caroline |
| E-mail address: | carolinejoywood@yahoo.co.uk |
| Country?: | england,uk |
| Type Of IBD: | uc |
| Type Of Surgery : | subtotalcolectomy |
| Comments: | hi,lovely to find you and your very informative site.I'm caroline & my hubby had his surgery jan08 after 15yrs with uc. not doing well mentally,so often it's the psychological issues with the bag/stoma with men,eh?(i've called it "basil" & was smiling when i read you call yours "harriet" as hubby thought i was mad&the only one to name the stoma!!!).
your smiling face and friendly style of writing was a nice change to the dry,medical sites i've been visiting to try to find info for my hubby.thank you so much for sharing. we came to your lovely country last yr but our time was marred big time by hubby having seriuos flare-up.so sad as the people and fab sites etc were so so great.!!but we did come across lots of loos(and may i add,so much cleaner and well-equipped than brit bogs!!). nice to "speak"to you,best wishes,c. |
| Name: | Genev |
| E-mail address: | geneva_hamo@hotmail.com |
| Country?: | Samoa |
| Comments: | hey hi its nice to meet you on the internet and I dont have much to say coz I havent met you before...i hope to catch up with you later... |
| Name: | Susan Jane Mifsud |
| E-mail address: | susan.mifsud@ntlworld.com |
| Country?: | UK |
| Type Of IBD: | UC |
| Type Of Surgery : | Total Colectomy |
| Comments: | HI just found your website, I'm quite new to this. I had my op on 30th Jan so 5 weeks tomorrow!! I've got an ileostomy ( Rosie ) and also a mucous fistula ( Billy), i'd suffered with UC for 11 years and had run out of options. Just recovering at the mo so am browsing the web alot!! |
| Name: | Ron Pearson |
| E-mail address: | ronsjohn2@live.co.uk |
| Country?: | England |
| Type Of Surgery : | You can take your pick! |
| Comments: | Hi everyone, it isn't myself that has the problems but my loving wife, the past few years have been hell for her and yet she still manages a smile to greet me every day - here I'd better correct myself for at present she is in the Intensive Care Unit before her next operation later today -her age? let's just say that I'm just into my 80's and leave it at that.
I know that she will love your site when she is "up and about" again, a pity I hadn't found it sooner before she had to start on her ostomy journeys a few years ago now. Her sense of humour and always a ready smile has hidden what she's suffered,and as she managed to joke when we were knee deep in s*** with a ready quip if this was money we'd be millionaires many times over. Her consultant I'd better not name but she is a remarkable lady, approachable, caring and always tells and makes sure we understand what she is going to do, and she makes time to listen to us as well and that is worth a lot. I leave you for this time and go to join my wife, hopefully before this trip to the operating theatre but before I close may I say that this site is a revelation to how you people cope, I would hope that our Government Health Board take a good, long look at it before they put into practise their proposed cuts in the services that are at present available to ostomites. Keep your chin up everyone there's a brighter world out there. Regards Ron Pearson. Humberside, England. |
| Name: | val cooper |
| E-mail address: | valeriecooper@tadaust.org.au |
| Country?: | Australia |
| Type Of IBD: | colon cancer |
| Type Of Surgery : | colorectal |
| Comments: | I Have had an ileostomy for 5 years now. Best thing to happen to me - saved my life. I still have so much to achieve .
I am only 74 years young. Would love to hear from others in my age group or anyone interested in writing. If I can be of help to anyone or if my story may be of interest I am willing to share. |
| Name: | Jon Meagor |
| E-mail address: | j.meagor@ntlworld.com |
| Country?: | England |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Ileostomy |
| Comments: | Just coming up to my 10th anniversary with my ileostomy - i'm 36 now !! No problems other than the odd leak which is generally very rare. In the 10 years I've lived life to the full, got married, have 3 kids,set up my own businesses, just feel lucky. Have the odd bad "feel sorry for myself" day but remembering back to the UC which i had for a short time (3 months) but very severe - happy to live with the bag. Shaz great site, and great to be able to leave a note to all. Jx |
| Name: | Warren |
| Country?: | Alberta, Canada |
| Type Of IBD: | Crohns |
| Type Of Surgery : | Illeostomy |
| Comments: | I had it done in 1978, again in 1979 and 1980. That's 28
years ago and life is good. I'm a very active electrician, got married even with the pouch!You can too. |
| Name: | Sue Knight |
| E-mail address: | sknight46@yahoo.com |
| Country?: | USA |
| Comments: | My friend Jenni had emergency surgery yesterday in St. Louis.
She works in a thrift store here and is my dearest friend since I moved here from CA year ago..She has a large tumor in her colon and she is to have radiation/chemo for 12 weeks after the surgery and then go in for another surgery. Thank you for your webpage..it certainly is encouraging to know that others have these surgeries and live full lives. will pass along information to Jenni..thank you Sue Knight Harrisburg, IL |
| Name: | Barbara Poolos |
| E-mail address: | bbpoolos@gmail.com |
| Country?: | United States |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | ileostomy |
| Name: | Tim Currid |
| E-mail address: | timcurrid@eircom.net |
| Country?: | Ireland |
| Type Of IBD: | Crohns Colitis |
| Type Of Surgery : | Bloody Enormous!! |
| Comments: | Hi from the other side of the world....I hope you guys are all watchin the six nations and learning how to play some decent rugby!!......I have had five laparotomies now, and hope to god that i have seen the last of the theatre. My first was a total colectomy and my last was removal of rectum and anal cavities.
All in a days work!! Still starting to feel pretty good |
| Name: | barbara |
| Country?: | australia |
| Comments: | Just visited your site out of curiousity really. It's always been my greatest medical fear having any sort of ostfter looking it up, I guess it's not insurmountable! Thanks for your honesty! Cheers! Barbara |
| Name: | Lynette Hendriks |
| E-mail address: | hendriks4@bigpond.com.au |
| Homepage URL: | http://groups.msn.com/shopdolls |
| Country?: | Australia |
| Type Of IBD: | : illeostomy |
| Type Of Surgery : | Total pelvic exoneration cancer |
| Comments: | I have had my illeostomy attachment for over 12 years now but at the moment I am having terrible trouble with the appliance leaking
Never had any trouble before Any body have any magic methods to overcome this problem I have tried different size waffers but no improvment Looking forward to getting to know you all Lynette |
| Name: | Terri Toland |
| E-mail address: | territoland@yahoo.com |
| Country?: | USA |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | illeostomy |
| Comments: | It's been nine months since my surgery. My quality of life is 200 percent better now, but I still have "pity parties" some days. This is one of them....just having a bad day. But I pray, and I'm thankful this surgery is possible. I have no regrets, just still adjusting some. I'm having trouble finding "normal clothes" to wear. I always wore jeans, and all the styles are hip huggers and low rise now, and they're not very cute with a pouch sticking out of the top. Thanks for your site. Talking about my surgery makes me feel normal. |
| Name: | Leslie |
| E-mail address: | Cleansweeperz@yahoo.com |
| Country?: | USA |
| Type Of IBD: | None |
| Type Of Surgery : | None |
| Comments: | Hi Shaz-I am a nursing student. My professor put a link to your site in our online study guide about ostomies. I have enjoyed visiting your site and reading the positive things that ostomates are saying about how this surgery saved and changed their lives. This is the kind of information that is so important to convey to people facing an ostomy. It is inspiring and gives hope. I plan on sending patients to your site as a means of educating and encouraging them. Thank you.
|
| Name: | Jean Kelly |
| E-mail address: | JMK717@comcast.net |
| Country?: | USA |
| Type Of IBD: | Ileostomy |
| Type Of Surgery : | Rectal cancer in 1999 ~ eventually leading to removal of colon due to radiation damage |
| Comments: | You are an inspiration. Thank-you.
I originally had an ileostomy two years ago which I had reversed. Well, it tuns out that because of radiation damage and obstructions, I had to have a permenant ileostomy done. I had emergency surgery on Dec. 23rd. 2007.......... I feel so good now. Everything is working out good, and I can eat whatever I want!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I was so afraid of having the ileostomy again. I wish I never got it reversed. I almost died because I tried to wait as long as I could before getting another ileostomy. How silly I was. My Christmas present was a new life. I am very happy now. I hear Perth Austrlia is a nice place. I watch every documentary on Australia that is on the Television. I know Heath Ledger was from Perth. How sad about his tragic death. Well............... Thank you for your encouragement!! Cheers, Jean Kelly New Jersey, USA Jean |
| Name: | evelyn mills |
| E-mail address: | duane.mills2sbcglobal.net |
| Country?: | USA |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | ostomy |
| Comments: | I had surgery in 1960.
Still going strong. I would like to help anyone if they need it. |
| Name: | Steff Ross |
| E-mail address: | www.Steffanie.Ross@education.nsw.gov.au |
| Country?: | Australia |
| Comments: | hey
John Farnham is my favourite singer too, even though i have only been around for 12 years. I have only known about him for about 2 or 3 years. He's awesome. C YA !!! |
| Name: | Tiana Morris |
| E-mail address: | tlmorris1313@aol.com |
| Country?: | United States |
| Type Of IBD: | Crohns |
| Type Of Surgery : | ilieostomy |
| Comments: | I started a page with forums and discussions, I am also offering pouch covers to fashionably cover our "bags"
http://www.freewebs.com/custompouches/ Tell me what you think... |
| Name: | Mada |
| E-mail address: | hamlvr@yahoo.com |
| Country?: | USA |
| Comments: | While I am stoma free, my 19 year old son just had one done 48 hours ago....during his 5th surgery. We may be looking at a reversal in 6-12 months. This site is just what he needed! I'm sure he'll be adding his 2 cents worth as soon as he is out of the hospital. God Bless all of you for your bravery in dealing with your individual "friends"! |
| Name: | ShirleyAnn |
| E-mail address: | tbell@mchsi.com |
| Country?: | USA |
| Type Of IBD: | sister-UC |
| Type Of Surgery : | ileostomy |
| Comments: | My first post was on Nov 29, 2007, the day of my sister's surgery. I have received some emails from readers of this guestbook & have forwarded them to my sister. How nice!! After being treated for Crohn's for many many years (patchy like Crohn's & fistulas), the super specialists diagnosed her with UC. That means the ileostomy cured her, since UC doesn't travel like Crohn's. Great news!! She gained newfound energy soon after surgery. The drs said her sick colon was making her stay sick. After years of high dose daily prednisone, she's now on a minimal dosage & will soon be free of that too. She's can now enjoy a car ride without the fear of finding a bathroom. Her life has changed for the better. Thanks for this awesome website. I hope she soon shares her story with all of you. Shirley Ann |
| Name: | carol |
| E-mail address: | cadunphy@rogers.com |
| Country?: | canada |
| Type Of IBD: | ileostomy |
| Comments: | Hi,
great site. and i love how you speak of stoma(s). i find the info you have here very helpful and enjoy hearing others speak of their experience. i had surgery Jan.11/08 and this is all very new to me. my surgeon tells me we will reverse the ileostomy once the resection of my colon has healed. thanks for the site and most especially your great attitude toward the stoma. carol (in toronto) |
| Name: | Argie Eldridge |
| E-mail address: | glitsagirl@hotmail.com |
| Country?: | USA- Mich |
| Type Of IBD: | Crohn's |
| Type Of Surgery : | 4 bowel resections |
| Comments: | Started looking for some advice if I should get ileostomy as I now have short gut syndrome (only have 3 feet of small intestine left. My backside has Crohns, and now after 15 years since my last surgery, my rectum has given out,I am in pain fromit all night, not to mention my going to bathroom about once and hour all day and night. I am afraid because I have most of my small bowel gone, that I will filling up the bag alot all day and have to empty it out quite a bit. Also, will my stoma be just as irritated as my rear is? Is there any one out there is somewhat in my predicament or can offer advice, please email me at glitsagirl@hotmail.com |
| Name: | Claire McIntosh |
| E-mail address: | claire.mcintosh89@hotmail.com |
| Country?: | Scotland |
| Type Of IBD: | FAP |
| Type Of Surgery : | Ileostomy |
| Comments: | Hi,
Im almost 19 and on the 4th of January i had surgery to remove all my large colon as i have a genetic gene passed from my dad to myself, i have had my bag for over a month now and i must say after looking at this web site im alot happier to know they is a lot of others out there with a bag.(although i dont wish it on anyone!) I would love to know if you have any tips? I have been quite positive about the hole thing and i think its actuarly quite cool now after reading your pages im alot more possitive about all of it. Thank you so much i think your definatly right when you say attitude is more important than apperance, i have found that with a positive attitude and a smile on my face i can do just about anything. |
| Name: | Doris |
| E-mail address: | Rose |
| Country?: | USA |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | ileostomy |
| Comments: | I too lived with my desease for many years, in and out of hospitals. I had my surgery in 1967, 41 years ago. For me it was a rebirth and I have never looked back. Like you the only thing I can't do is wear a bikini but so what, there are many styles that I can wear and water sports were one of many that I enjoyed and participated in over the years. Riding and showing my horses, raising and showing llamas and many other activities. No one knows that I wear an appliance except my husband to whom I have been married to for 39 years and who is a truly remarkable person. I can only say to anyone that is facing a similar procedure..there is a good life ahead. |
| Name: | Colin Clarke |
| E-mail address: | leasgrandad@sky.com |
| Country?: | England |
| Type Of Surgery : | balder cancer(urostimimist) |
| Comments: | Had bladder removed in 1998(10yrs in may)Happily still around to celebrate my 38th wedding anniversary in April.
Had heart attack and hip replacement since but still going strong. |
| Name: | Ned Goodrich |
| E-mail address: | eogoodrich@hotmail.com |
| Country?: | Philadelphia |
| Type Of Surgery : | General |
| Comments: | I;ve done a few, being FACS, but recently encountered a person post bladder resection and was looking for an e-mail or snail-mail local (Washington or Baltimore would be OK) contact like I used to use in New Mexico. EG,MD. |
| Name: | Mary |
| E-mail address: | m.mcdonach@btinternet.com |
| Country?: | Scotland |
| Comments: | I have been asked to get info for my mother in law and your site made that really easy in an informal,cheery way so I'd like to thank you. |
| Name: | suzanne woodward |
| E-mail address: | suziequat@hotmail.com |
| Country?: | australia |
| Type Of Surgery : | illeostomy |
| Comments: | hello Shaz,have been searching net, my husband has had ileostomy op three weeks ago he has lost 20kg, everything is so new to us,may need to ask you some questions very soon thanks for your site, sue woodwarn |
| Name: | JANECE LANE |
| E-mail address: | janecelane@yahoo.com |
| Country?: | USA |
| Type Of IBD: | UC |
| Type Of Surgery : | ILEOSTOMY |
| Comments: | Thanks for such a wonderful site! I have had an ileostomy since 1960 and am now 56 years old. I have never found so much useful and fun information in one place before.Even though I have lived as an ostomate for 48yrs I still am finding out things I did not know before. Thanks again!! |
| Name: | JANECE LANE |
| E-mail address: | janecelane@yahoo.com |
| Country?: | USA |
| Type Of IBD: | UC |
| Type Of Surgery : | ILEOSTOMY |
| Comments: | Hi Shaz! I love your site. I have had a ostomy since 1960 when I was 8yrs old and have never seen this much useful info in one place before. I have one question though. When I have registered (twice) I then recieve an email to validate my account. However, when I click on the link nothing comes up on the page so the process can't be completed. What am I doing wrong? Any help you can give would be greatly appreciated as I would like to be able to access some of the forums. Thanks! |
| Name: | Alannah |
| E-mail address: | hellewellda@hotmail.com |
| Country?: | Australia |
| Type Of IBD: | ulcerative colitus |
| Type Of Surgery : | ileostomy |
| Comments: | Thank you for this page, I have had my "bag" for 10 years now. it is just a oaet of me. |
| Name: | Doug Haught |
| E-mail address: | wvqd@aol.com |
| Name: | SueAnn Schoonmaker |
| E-mail address: | sueanns@gmail.com |
| Country?: | USA |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Ileostomy |
| Comments: | I was only sick one week, but bleeding so badly that I went into the hospital right away and after one month of lots of different transfusions, treatments and consultations, I had my surgery.
It's been 40 years now and I'm still here. |
| Name: | helen rigby |
| E-mail address: | vernhel@manx.net |
| Homepage URL: | http://manx.net |
| Country?: | isle of man, british isles |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | ileostomy |
| Comments: | My 13 year old Daugter had an ileostomy feb 2007, she now wants to look at the reversal operation, The J Pouch. Her surgeon suggested at least 1 year after the initial surgery to rest her body and to then look in to the pouch surgery, she is hopeing this will give her a complete normal life, can somone please give info as to how much rectum control she would or should have. My husband and i worry as she has a complete normal life since having the bag, nothing holds her back and she joins in all sport and teenage activities, would this set her back? |
| Name: | zahid |
| E-mail address: | zkadir@hotmail.com |
| Country?: | Pakistan |
| Type Of Surgery : | ileostomy |
| Comments: | Hi
your site is very useful . i like help people who is suffering UC specially who live in Pakistan .If u know anyone please email me there email address so i can help them. i had my permanent ileostomy in 2004 from london Uk. U have done a good job . keep it up . thanks zahid |
| Name: | Diane Transue |
| E-mail address: | dtransue@fluno.com |
| Country?: | USA |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | 2 Surgeries complete removal of my colon |
| Comments: | If anyone with this terrible disease is scared or wandering what it will be like after surgery, please feel free to email me. It is the best thing I have ever done after 10 years of ulcerative colitis and being sick all the time. My colon was full of polyps it was junk. I had "S" pouch surgery and my rectum scraped, that was in 1991 and I have lived a normal life. They made a funnel to my rectum with part of my small intestine. I do not eat certain foods, that I can live with, I wouldn't have lived without the surgery. |
| Name: | Lorae |
| E-mail address: | Lorae33@aol.com |
| Country?: | England |
| Type Of IBD: | Ulcerated Coltis |
| Type Of Surgery : | ileostomy |
| Comments: | Good to know i'm not the only one.Reading these pages made me feel better.
Thanks |
| Name: | Susan Waller |
| E-mail address: | Rivendell8@gmail.com |
| Country?: | USA |
| Type Of IBD: | Unknown now |
| Type Of Surgery : | Ileostomy |
| Comments: | I enjoyed visiting your website. I have a 19yr old son who just underwent surgery to remove a portion of ulcerated large intestine but later perforated and had to have an ileostomy for a second time. The first time he was only 2mths old.
Thank you again for your site! |
| Name: | Gaila Cassiday |
| E-mail address: | Cassidaygm@aol.com |
| Country?: | United Stated |
| Type Of Surgery : | Colostomy |
| Comments: | Hello Shaz,
I had a colostomy on December 15, 2007, not a very nice Christmas present but I am very thankful to be alive. I am learning to live with it, realizing things could have been so much worse. I came an hour of dying because up to one half of my bowel and colon had died and had been doing so for some time. Yes, I was so lucky. After a colonoscopy next month, the Doctor will determine when a reversal can be done...again lucky. I am 64 years old and I am NOT going to let this change my life style. God has given me another chance to do something I have always wanted to do.......volunteer work at a Women's Health Center, hoping I can be an inspiration to other women. But not yet, I need to finish recovering. Thank you so very much for your web site. I have decided I need to "name" my stoma...lol. Thank you again. It feels good to speak to someone about this that has already been through it. Sincerely, Gaila Cassiday AKA "Cassi" |
| Name: | Margaret McLean |
| E-mail address: | mmclean52@hotmail.co.uk |
| Country?: | Scotland |
| Type Of Surgery : | Colostomy |
| Comments: | Thank you for putting you website on the internet. I have been searching for info on having a colostomy operation. It is really helpful for me to come across your website.
I would appreciate it if you could email me back. Thanks Margaret |
| Name: | Elaine Hay |
| E-mail address: | elhay@sympatico.ca |
| Country?: | Canada |
| Type Of IBD: | cancer |
| Type Of Surgery : | colostomy |
| Comments: | Have just read a little bit of your site so far, but will peruse much more as after nearly 20 years of wearing this thing, it will be nice to read about others in the same situation. |
| Name: | sian matthias |
| E-mail address: | meirion@fazey.go-plus.net |
| Country?: | Wales U.K. |
| Type Of IBD: | Crohns |
| Type Of Surgery : | ??? |
| Comments: | I am reading your pages to help me to decide whether I should go ahead with surgery. I have had a rubbish year, in and out of hospital. Sometimes I feel almost normal and then I think having a stoma would be too drastic a move. Then something else happens and I get disheartened. Anyway I am going to read on and see if more info will help my decision. Thanks for this website, it is just what I need. |
| Name: | Mike Paahana |
| E-mail address: | mpaahana@clearwire.net |
| Country?: | USA |
| Type Of Surgery : | with knife |
| Comments: | i get wet dreams now |
| Name: | Tim Penton |
| E-mail address: | tim_penton@yahoo.com |
| Country?: | United States |
| Type Of IBD: | FAP |
| Type Of Surgery : | ileostomy |
| Name: | maureen Henderson |
| E-mail address: | mauranmitz@yahoo.co.uk |
| Homepage URL: | http://yahoo.co.uk |
| Country?: | England |
| Type Of IBD: | colitis |
| Type Of Surgery : | ileostomy |
| Comments: | Hi Shaz, I'm a new member of the ileostomy club, it's been 3 months since my surgery, i'm coping pretty well with Gurgling Gertie (my stoma).I had my fiftieth birthday in hospital, it was 10 days after my operation.
I like to read about other peoples journeys in life and how they cope with having a stoma, it;s all food for thought for me. Thanks and all the best Maureen |
| Name: | n a wesley |
| E-mail address: | tarainjtown@netzero |
| Country?: | us,ga. |
| Comments: | facing ileoostomy need infor....veery afraid....dr. has said is my only option. have had colon recet 10 years ago no one will tell me what to expect. I live alone. I need to hear sucess storys please help me make friends with my fear. need to hear something soon thanks lots. this message is coming from a sister repeating my sisters crys. |
| Name: | Mrs Rose Flannagan |
| E-mail address: | rose.flannagan@ntlworld.com |
| Country?: | United Kingdom |
| Type Of IBD: | Crohn's disease |
| Type Of Surgery : | Ileostomy |
| Comments: | I am 54 years old and had my ileostomy done 36 years ago. I have been married for 23 years and had 2 children. I divorced and have recently remarried. My ileostomy has not held me back in any way, I have done everything I wanted to over the years. Occasionally I wish I didn't have it but generally I have a good quality of life and I'm very happy. |
| Name: | Kathy Jonson |
| E-mail address: | kathyjohnson@pldi.net |
| Country?: | USA |
| Type Of Surgery : | Ileostomy |
| Comments: | Thanks so much for sharing your story. Both my husband & I enjoyed reading about you & Harriett. I got Bettie my bag in Mar of 2007. I was told not to eat corn or nuts, anything with seeds so just wanted to know from another ostomate if this something I should avoid.
Thanks again! |
| Name: | Jan |
| E-mail address: | lewtasg@pipeline.comau |
| Country?: | Australia |
| Type Of IBD: | Bladder Cancer |
| Type Of Surgery : | Bladder Removal |
| Comments: | My husband wears a pouch to collect urine after having his bladder removed due to bladder cancer. Like Corrine he has trouble finding appropriate clothing to wear swimming as the stoma is just on waist level (problems with belts as well). We hope to travel overseas and are wondering if there are any tips from people with similar issues out there? e,g How do we manage the long flight? Any ideas or places to find answers, welcomed.
Thanks Jan |
| Name: | karen |
| E-mail address: | karenarbour63@hotmail.com |
| Country?: | canada |
| Type Of Surgery : | urology |
| Comments: | i jsut had my surgery on Dec 12/07 i am finding this to be the hardest thing i had to deal with |
| Name: | alison |
| E-mail address: | stuart.jackson@onetel.net |
| Country?: | scotland |
| Type Of Surgery : | ileostomy |
| Comments: | have only had POB (Pee on Belly) since june when I discovered bladder cancer & had to have a full hysterectomy also. I am 36 & overall have coped very well & altho sometimes bulges through my trousers when needing emptied it just looks as if I have a lot of change in my pocket (ha ha). I am back at work full time now and all is going well except my stoma has been bleeding since mid october - have adjusted size of hole etc but it will not stop & as a result smells a little fishy - any advice would be appreciated. |
| Name: | LaVerne |
| E-mail address: | laverneps91@aol.com |
| Country?: | United States |
| Type Of Surgery : | Whole colon out |
| Comments: | I don't remember these names yet and I will....I am sixty-four years old and my complete colon is sick and Dr. is going to take it out so I can use the bathroom, not hurt and be bloated all the time, I have so many people telling me that this operation is Not Good...that my life will be ruined and I don't believe it, I saw your testimony and wanted to email you. Thank You so much, LaVerne~~ |
| Name: | Sonja |
| E-mail address: | pinkwheels54@msn.com |
| Country?: | USA |
| Type Of IBD: | COLOSTOMY |
| Type Of Surgery : | UROSTOMY |
| Name: | Sue Barnett |
| E-mail address: | cbarnett19@sbcglobal.net |
| Country?: | USA |
| Type Of Surgery : | colostomy |
| Comments: | Love your site have tried to join several times, but the link you send me does not work. When I click on the link
it doesnt` go anywhere. Oh well, will come in and read anyway. Thakns for a wonderful site. |
| Name: | Bill |
| E-mail address: | wschrei@bytehead.com |
| Country?: | USA |
| Type Of IBD: | Colostomy |
| Type Of Surgery : | Abdomino perineal resection |
| Comments: | I've had the colostomy for about two years and today I ordered an irrigation kit from Edgepark. I hope then I will be able to go to the opera and not have to leave 20 minutes before intermission and disturb everyone. |
| Name: | kNOP |
| E-mail address: | earlyshirl@aol.com |
| Country?: | Canada 6months Florida |
| Type Of IBD: | oleostomy |
| Comments: | You instill the positve attitude which one needs so as not to become discouraged. I worked in Melbourne for 6 months after I retired. Love Australia. |
| Name: | Alice |
| E-mail address: | DANwwc@aol.com |
| Country?: | U.S.A. |
| Type Of IBD: | urostomy |
| Type Of Surgery : | Bladder Cancer |
| Comments: | Happy Birthday Harriet!
I named my stoma Sally Ann. She will be 5 on Feb.10. I am 56. |
| Name: | Jennifer Barrett |
| E-mail address: | Jennbarrett@hotmail.com |
| Country?: | US |
| Type Of IBD: | Ulcerative Colitis |
| Type Of Surgery : | Iliostomy/J-Pouch |
| Comments: | I have had to have an iliostomy twice in one year. The first time I didn't keep it long enough and suffered with leaks in my small intestines. I have been in and out of the hopital so much this past year that I call it my home away from home. Hopefully I have a reversal of my iliostomy soon and all will be well. I have had this second one for 10 weeks and plan to keep it for at least 4 more. I have felt much better though since getting it and hope I feel better when I get it reversed. |
| Name: | Tamara |
| E-mail address: | tamara.campo@sympatico.ca |
| Country?: | Canada |
| Type Of Surgery : | Colostomy |
| Comments: | Hi all-The site looks amazing Shaz!!! I tried to register but seem to be having trouble-No doubt I am doing something wrong-LOL...
Would like to join and get to know more incredible Ostomates. Happy New Year to All of you! xoxo |
| Name: | Gareth David |
| E-mail address: | davidgareth@hotmail.com |
| Country?: | England |
| Comments: | Tried to sign in for mailing but address saw full. would like to be included if possable |
| Name: | Jenni |
| E-mail address: | hutch.welding@bigpond.com |
| Country?: | Australia |
| Type Of IBD: | UC |
| Type Of Surgery : | Ileostomy |
| Comments: | We have just celebrated Roma the Stomas first birthday - she's belongs to our four year old son. Its amazing to see how many people our out there going thru the same things. Why is it all such a secret?? We live in a small town in rural NSW Australia - everyone knows what he's been thru and are very accepting - what happens when he gets out in the wider world- maybe if everyone just let a few more people around them know they have a stoma it would not seem such a 'foriegn and weird' thing to the rest of the world. |
| Name: | Ronnalee |
| E-mail address: | ronneewitch@hotmail.com |
| Country?: | USA |
| Type Of IBD: | Chronic Ulcerative Colitis |
| Type Of Surgery : | ???? |
| Comments: | I was diagnosed with CUC back in 1993,Was in remission for years with a few hospital visits, I am very affraid to have surgery, I don't want a bag, the resection doesn't sound to bad, if youv'e had this done please email me and let me know how your'e doing. Thank You & stay healthy |
| Name: | Andrew C.Okoro |
| E-mail address: | chumazealatc@graffiti.net |
| Country?: | Togo |
| Comments: |
Yap! so nice and good to write home about. |
| Name: | Tom Howarth |
| E-mail address: | Ikenasai@aol.com |
| Country?: | USA |
| Type Of IBD: | ? |
| Type Of Surgery : | Ileostomy |
| Comments: | This website has been a pleasure. I am extremely happy to have found it. |
| Name: | susan kierstead |
| E-mail address: | susan_kierstead2003@yahoo.com |
| Country?: | maine |
| Type Of Surgery : | Ileostomy |
| Comments: | my whole colon was remove june 29 this year and i had a Ileostomy june 6, 2006 but got real sick and i could not eat so they did this one this year cause of the same thing they also foud my appendicts were ready to burst. i was very lucky i also have a lot of physical promblems i am in a wheel chair. but i loved what you said about having a good attiude i am working on that right now i want to change my thinking to postive and accept this in my life so tank you for getting me on the right path, again. |
| Name: | JAMES ROBINSON |
| E-mail address: | FIELDSTONE@LYCOS.COM |
| Country?: | AUSTRALIA |
| Type Of IBD: | ILLOSTOMY |
| Type Of Surgery : | LAP ANTERIOR RESECTION |
| Comments: | HI, FOLKS, WHAT EVER YOU THINK OR FEEL ABOUT YOUR CONDITION, AT LEAST WE WAKE UP EVERY MORNING WITH THE SUN SHINING AND AIR IN OUR LUNGS, JUST REMEMBER THAT WHEN YOU ARE FEELING DOWN OR DEPRESSED, ITS THE ONLY WAY, DONT DWELL ON THE PAST, JUST THINK OF WHAT YOU HAVE IN LIFE IN THE PRESENT, DONT GIVE UP OR GIVE IN. JUST ENJOY WHAT EVERY DAY, I,M ONLY 38 WITH A WONDERFUL WIFE AND 2 YEAR OLD GIRL, AND I LIVE FOR THEM, ANYWHO, MERRY CHRISTMAS ALL, KIND REGARDS JAMES |
| Name: | JAMES ROBINSON |
| E-mail address: | FIELDSTONE@LYCOS.COM |
| Country?: | AUSTRALIA |
| Type Of Surgery : | LAP ANTERIOR RESECTION |
| Name: | George |
| E-mail address: | george.kulo@seflex.co.za |
| Country?: | South Africa |
| Type Of IBD: | Ileostomy |
| Comments: | Had an ileostomy due to diverticulitis, damn thing burst inside me and I thought I was just getting fat. Got through the OP but really having difficulty trying to accept that I may have to wear this "thing" for the rest of my life. BTW the sex life is crap as I keep poking holes in the pouch. Anyone with similar problems? |
| Name: | Julie Edwards |
| E-mail address: | momx16@hotmail.com |
| Country?: | USA |
| Type Of IBD: | ulcerative colitis |
| Type Of Surgery : | permanent ileostomy |
| Comments: | 20 year owner of ileostomy! |
| Name: | Carol |
| E-mail address: | carolnvenice@aol.com |
| Country?: | usa |
| Type Of Surgery : | bladder removal |
| Comments: | I still consider myself very new to a whole new world. I had bladder cancer and treatments didn't work so in April '07 i had my surgery. God bless everyone who was there before me. Creating a site for me to come to when I'm down or needing to hear from someone who knows exactly what I'm going through allows me a private place to cry, understand and laugh at this whole ordeal.
Carol Venice, Fl |
| Name: | Francie |
| E-mail address: | francie355@yahoo.com |
| Country?: | MN, USA |
| Type Of IBD: | chronic ulcerative colitis |
| Type Of Surgery : | Kock pouch continent ileostomy |
| Comments: | I haven't visited any ostomy sites before. I had a successful surgery in 1979 and have had very few problems with my Kock pouch. Now I have large calcifications at the ileum/pouch juncture, and have stopped taking my pouch's health for granted. I was hoping someone would know about these stones; most doctors seem to know little about this combination of conditions. Nor is there much literature available to non-medical persons.
I noticed the main page for this organization doesn't have a listing for Kock pouches. I'm feeling a little like a dinosaur! |
| Name: | Millard Hicks |
| E-mail address: | mhicks44282@sbcglobal.net |
| Country?: | USA |
| Type Of IBD: | colonoscopy |
| Type Of Surgery : | colon rectal |
| Comments: | My wife is the the one with the colonoscopy.She had colorectal cancer in July and had surgery to remove a large tumor and all of her decending colon and part of her vagina.She is doing pretty good now,after the radiation and chemo. |
| Name: | Susan Moskowitz |
| E-mail address: | sem4748@gmail.com |
| Country?: | USA |
| Type Of Surgery : | total colectomy |
| Comments: | Surgery on Nov.9,2007. Still trying to figure out periostimal skin protection. I'm changing wafers every 36 hrs or so due to leakage. Any suggestions? |
| Name: | Debs |
| E-mail address: | hob_nobs1@hotmail.com |
| Country?: | uk |
| Type Of IBD: | n/a |
| Type Of Surgery : | n/a |
| Comments: | Hi all, im a second year student nurse doing research into stoma care. i hope to work as a stoma nurse when qualified and i would appreciate it if you would email me about things that you feel nurse's could do or even say that would have made your jouney with your stoma's easier. even if its something that seems obvious to you sometimes as a nurse you are that focused on a medical or surgical condition that you dont always see the person behind. i hope that by listening to peoples views and stories i can become a better nurse and help people when they need it the most.
shaz i think this is a great site it helps not only people who have bowel conditions but also allows people who are unaware of such conditions to get an insite into what you go through.By making people aware of these things hopefully the general public will have a better understanding sooner than just seeing a bowel problem as a taboo subject...... thx again Debs x |
| Name: | gn |
| Country?: | us |
| Type Of IBD: | uc |
| Type Of Surgery : | intestinal reservoir |
| Comments: | thank you for your lovely website! |
| Name: | Karen |
| E-mail address: | karensrainbow4@hotmail.com |
| Country?: | USA |
| Type Of IBD: | U.C. |
| Type Of Surgery : | Ileostomy |
| Comments: | Hello All,
My stoma (Oscar) and I just recently celebrated our 20th anniversary together (in October). I was 20 at the time of my surgery - so we have officially been together for half of my life. I continue to stay busy - and love traveling. We took a recent trip to Nashville, followed by a week in the mountains, which I have always loved. I remain blessed, continue to do yoga, scuba dive, and recently took up some kick boxing and increased my ab (double crunches! They are as bad as they sound - but I like the results) and weight workouts, to make up for that "turning 40", gravity thing! I can honestly say, although an ostomy isn't what I planned for my body, it hasn't changed what I do, have active I am, what I eat, wear....It gave me my health, and I choose to live life to the fullest! Why let a tiny little pouch and flange change a healthy, active life style? Each day we get to choose how we want to be in this world. I choose active - and I choose joyful! May all of your life choices be just as fulfilling to you. |
| Name: | john michael scholey |
| E-mail address: | jhnscho@btinternet.com |
| Country?: | england |
| Type Of Surgery : | total colectomy |
| Comments: | have had fred(name of ileostomy) since 2001.Have been looking for aweb site like this for ages,somewhere i can let of steam + get advice if" fred" has a bad day. |
| Name: | Tifani Witherspoon |
| E-mail address: | tifanim@aol.com |
| Country?: | usa |
| Type Of IBD: | Unknown |
| Type Of Surgery : | Colon Cancer |
| Comments: | My dad recently passed away and he was using the Convatec Sur-Fit Natura Drainable pouch w/clips, and the skin Barriers. He had colon cancer and in 2001 had surgery. Due to the location of the cancer, his rectum was removed. He was never the same man after the surgery (that was only his opinion), the cancer later spread to his stomach and lungs. I probably have a years supply and would like to give it to someone who has to pay for these supply. Please email me if interested. God Bless You All.
Tifani |
| Name: | ginger |
| E-mail address: | necurrie2@hotmail.com |
| Country?: | USA |
| Type Of IBD: | UC |
| Type Of Surgery : | proctocolectomy with ileostomy |
| Comments: | Hi, I just had surgery 4 weeks ago. Am much better but still getting used to the whole thing. Glad you are here. Also you have special greetings to those in Worc. MA USA, I live 20 minutes outside of Worcester- funny.
ginger |
| Name: | Mark Dumouchelle |
| E-mail address: | mdumouchelle@hotmail.com |
| Country?: | Canada |
| Type Of IBD: | Diverticulitis |
| Type Of Surgery : | Hartmann's Procedure |
| Comments: | Had ruptured colon due to diverticulitis, removed 20 cm colon and have temp colostomy...it is very deep convex and has taken alot of time to heal...still bleeding but less now after 10 weeks...it has been very trying and i thank god for my family..there are many brave souls out there who suffer, endure, help and care....they do make a difference i met many of them on this journey...for me this was tough... acceptance is the best advice i had |
| Name: | David Otness |
| E-mail address: | djounderthevolcano@yahoo.com |
| Country?: | Alaska |
| Type Of IBD: | U.C. |
| Type Of Surgery : | Ileostomy July 1988 |
| Comments: | This is the first time since my initial surgery that I've thought about actually making contact with others, actually it occured to me I might find a female partner who might be intersted in Alaska---- not Anchorage, Fairbanks or Juneau),--- the real Alaska, Bush Alaska. Also the possibility of visiting her country of origin if different from Alaska.
Over the course of my nearly 57 years I have come more and more to think of my life-long home as a separate, sovereign entity from the rest of the U.S. Unfortunately, it is a minority viewpoint but I will survive. Thanks for the site and sharing your story. DaveO |
| Name: | ShirleyAnn |
| E-mail address: | tbell@mchsi.com |
| Country?: | USA |
| Type Of IBD: | sister-crohn's or UC |
| Type Of Surgery : | ileostomy today |
| Comments: | My sister had an ileostomy today. She is 57 & has been told she has Crohn's for many years. Earlier in 2007, she went to a well-known hospital, instead of her local. The new drs questioned if she has Crohn's at all. They wondered if it might be UC. They tried Humira & Methotrexate together, but neither worked for her. She's also tried another Rx long ago....MP6, I think. She's been on maintentance doses of prednisone (20-30mg)for about 10 years, along with other drugs. She seldom leads any kind of normal life & can't really go places much at all. Her outlook is positive that this surgery will change her life. Your web page caught my eye, so thanks for sharing. |
| Name: | Steve Kugler |
| E-mail address: | steve_kugler@yahoo.com |
| Homepage URL: | http://www.causeseffects.com |
| Country?: | Flagstaf, AA, USA |
| Type Of Surgery : | ilostomy |
| Comments: | Age 60, retired, housed, have two bachelor's in journalism and psychology. Handicap discrimination is intense. It is difficult maintaining a low profile, especially when making farting noises. Would like to hang out with other ostimates. |
| Name: | Barbara Cox |
| E-mail address: | b-cox@ihug.co.nz |
| Country?: | New Zealand |
| Type Of Surgery : | Colorectum |
| Comments: | Oh the relief to finally find your website - it's amazing. I've been that depressed the past couple of days due to my reversal surgery but now there is light at the end of this "experience". I hope to gain many new friends and also help other folk with my experiences.
You are amazing poeple and oh so helpful. with great appreciation and much gratitude Barbara :) |
| Name: | Kay Carsley |
| E-mail address: | kaycarsley@hotmail.co.uk |
| Country?: | England |
| Type Of IBD: | What does this mean? |
| Type Of Surgery : | Temporary loop Ileostomy |
| Comments: | Hello Shaz.
I had uterus and ovarian cancer in 2005 and ended up with a colostomy bag due to a tumour on the outside of my uterus being attatched to my rectum. I have just had a colostomy reversal operation and now have a temporary loop ileostomy. I found it quite easy coping with a colostomy but this ileostomy is absolutely horrible. I am not coping too well with it at the moment. My stoma is in a dip of my belly and this makes it more prone to leaking. Thankfully I only have to have it for 3 - 6 months. I have always been on the look out for different coloured stoma bags. These "flesh" coloured ones are not very glamorous! Bye for now Kay Carsley |
| Name: | lee walker |
| E-mail address: | leewalker05@hotmail.co.uk |
| Country?: | scotland |
| Type Of IBD: | ulcerative colitus |
| Type Of Surgery : | large bowel removed |
| Comments: | hey great page! got alot of respect 4 u having had your op so young! i had my large bowel removed in 1999 at the age of 18! had tried every medicine on the market for a year and a half was like a guinea pig lol! was goin 2 toilet 50 times a day and spewing into a bucket at the same time. have had four ops for pilonidal disease on my bum and developed septicaemia so enough was enough. now live with the girl of my dreams and a father to two gorgeous boys! lee walker |
| Name: | cary |
| Country?: | canada |
| Type Of IBD: | ulceratve colits |
| Type Of Surgery : | J pouch |
| Comments: | had my surgury best thing i ever did. |
| Name: | Kathy Trow |
| E-mail address: | rickkat@verizon.net |
| Country?: | USA |
| Type Of IBD: | n/a |
| Type Of Surgery : | ileostomy |
| Comments: | I was diagnosed with familial multiple polyposis when I was 16 years old. Had an ileostomy when I was 16 years old. I've been an ostomate for 30 years.
This is a beautiful site you've created here - and I look forward to surfing around. |
| Name: | Laurie |
| E-mail address: | lmorgan85@charter.net |
| Country?: | USA |
| Type Of IBD: | uc |
| Type Of Surgery : | ileostomy |
| Comments: |
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| Name: | Gail |
| E-mail address: | gaily2_2000@yahoo.com |
| Country?: | USA |
| Comments: | I was given the news that I may or may not have a temp or permanent ostomy during my surgery on Dec. 5th.
I have Psuedomyxoma Peritonei which is really cancer of the appendix. I saw your site and started to read this guestbook. Thanks for this good info as I am more than a little freaked out! Best to all - Gail in New Jersey |
| Name: | Gary |
| Country?: | memphis USA |
| Type Of Surgery : | none |
| Comments: | Good luck with the website. Great idea. Gary. |
| Name: | Jimmy Alequin |
| E-mail address: | jalequin@onelinkpt.net |
| Country?: | Puerto Rico |
| Type Of IBD: | Rectum cancer |
| Type Of Surgery : | colostomy |
| Comments: | Surgery to be peformed on January 2008 but I am getting information on everything related with stomas, bags,ostoamtes, etc.. Question: On taking a shower, do patiens remove the bag?. Any problems driving a car because of pressure of safety belt?. Is depilation a good option to help secure the bag?.When using a cap, is it ok to wear something like an excersise fat reducing band to prevent leakage?. Only the rectum will be removed, will I still get the urgency if I keep the stoma closed with a cap ?. I may be nuts, but I plan to get an adapter for the bathroom lavatory / sink with a hose and a funnel with hose
in a stand to empty the bag & rinse it. I may even take it along while traveling for Hotel use. Your site has given me strength to go on with the Colonscopy and strive for an "almost normal" daily routine. I imagine there is a local Chapter of Ostomates Association in San Juan, Puerto Rico. I'll find out, but if you got some contacts it will be faster. God bless everyone. Jimmy Alequin jalequin@onelinkpr.net |
| Name: | JImmy Alequin |
| E-mail address: | jalequin@onelinkpr.net |
| Country?: | Puerto rico |
| Type Of Surgery : | Colostomy |
| Comments: | I'll have colostomy early January 2008, so I want to be ready for the "unexpectëd" |
| Name: | maikl |
| E-mail address: | spammit@mail.ru |
| Homepage URL: | http://www.massageparlourss.phpnet.us |
| Country?: | USA |
| Comments: | My wife had surgery for colorectal cancer.They removed all of the lower colon permantly.
I really like your site it gives my wife hope and a better feeling about herself. Thank You! |
| Name: | Richard Martin |
| E-mail address: | disneydad@charter.net |
| Country?: | United States |
| Type Of IBD: | Crohn's |
| Type Of Surgery : | colostomy |
| Comments: | Good to find a site that has information in "real talk" rather than "Doc talk". |
| Name: | rob |
| E-mail address: | freakypunk20@yahoo.com |
| Country?: | usa |
| Type Of IBD: | ? |
| Type Of Surgery : | Ileostomy |
| Comments: | hello wussup i am new into the world of austomy and cant spell well srry but i thought id sigh ur book ta show some love ~1~ |
| Name: | rob |
| E-mail address: | freakypunk20@yahoo.com |
| Country?: | usa |
| Type Of IBD: | ? |
| Type Of Surgery : | Ileostomy |
| Comments: | hello wussup i am new into the world of austomy and cant spell well srry but i thought id sigh ur book ta show some love ~1~ |
| Name: | Paul White |
| E-mail address: | whitep_41@yahoo.com |
| Country?: | USA |
| Type Of IBD: | Ileostomy |
| Type Of Surgery : | Rectal Cancer |
| Comments: | Shaz, you answered a question I posted on Yahoo Answers a few weeks ago. It asked how do you use ostomy paste. You were the only one who answered the question knowledgeably and in great detail. I just wanted to thank you for doing this. Unfortunately for me, the paste did not work. My ostomy nurse finally got me to using a Coloplast shallow convex bag, and it is working really well. |
| Name: | a dodson |
| E-mail address: | oat1@charter.net |
| Country?: | usa |
| Type Of IBD: | ulcerative colitus |
| Type Of Surgery : | illeostomy |
| Comments: | hello,
Just wanted to say hello to anyone struggling with accepting life as it comes to you. There's no guarantees in life only opportunities. Rise up and overcome. |
| Name: | Millard Hicks |
| E-mail address: | mhicks44282@sbcglobal.net |
| Country?: | USA |
| Type Of Surgery : | colon rectal |
| Comments: | My wife had surgery for colorectal cancer.They removed all of the lower colon permantly.
I really like your site it gives my wife hope and a better feeling about herself. Thank You! |
| Name: | Merilyn |
| E-mail address: | newstiger2003@yahoo.com |
| Country?: | USA |
| Type Of IBD: | colostomy |
| Type Of Surgery : | hemicolectomy |
| Comments: | Found out I had a cancerous polyp had to have it removed, when they went in to get the cancer (found early),praise the lord.. there it was located very close to the rectum. So there was my stoma.. which I understand is to be reversed in 3 months. Wow was I surprised.. because orginally there was no plan for a stoma.. My problem is that I lost from 145 pounds at the time of surgery down to 139 pounds after 13 days in the hospital.. then after coming home on antibiotics for 2 weeks. I could not eat dairy or dairy products .. so lost another couple pounds... now at this moment down to 132.( That is what I weighed when I first got married 36 years ago...) Want to find some good recipies that will work for me and my stoma and give me high high calorie count.. If anyone knows any good web sites like this please let me know or if someone on this site can email me I would appreciate it very much. Nice to find your site.. |
| Name: | Dennis & Lynn |
| E-mail address: | lynngillikin@verizon.net |
| Comments: | any information on stimulating "appetite" post-ostomy? |
| Name: | caroline |
| E-mail address: | caromallow@hotmail.c.nz |
| Country?: | newzealand |
| Type Of IBD: | urostomy |
| Type Of Surgery : | illeal conduit |
| Comments: | i am so pleased to have found your site.same great info.i was 7 years old when i had my opp.I was born with an enormous sacrococ |