J-Pouch Contact List - Page 1

Name: Paul Roy
Email: pmroy24@aol.com
Age: 35
Country: Virginia, USA
Surgery: J Pouch
IBD: UC
More Info: I was diagnosed with Ulcerative Colitis in 1997, and began taking several medications to control the symptoms. My symptoms were fairly constant, not come-and-go, and the only drugs that would help was prednisone. Soon even prednisone wasn't working, and my condition was deteriorating. I was eventually forced to take a disability retirement from the military after one year of worsening Ulcerative Colitis. Finally, with no other choice I agreed to the J-pouch surgery. Mine was done with three operations, because there was a chance my colitis might actually be Crohns Disease. First operation my colon was removed and Crohns was ruled out. Second the J-pouch was created. Third my ostomy was closed and the j-pouch was connected. These were done over about a one year period. Now I am doing great, comparatively speaking. I still go to the bathroom about 6 times per day, and twice at night, but I have control of when I go. With colitis I was going 20-30 times per day will no contol at all, and a lot of pain. It was a nightmare.

Name: Jeni Wade
Email: desert_rose_72@hotmail.com
Age: 28
Country: Arizona, USA
ICQ: 103727006
Surgery: J Pouch
IBD: Familial Polyps
More Info: I had surgery 13 years ago and now have one child, 4 years old. My pregnancy had some minor problems but all in all it was almost a normal pregnancy and delivery. If I can help anyone with any questions feel free to contact me!

Name: Vernon
Email: Squid60@hotmail.com
Age:
Country: USA
Surgery: J Pouch
IBD: UC
More Info: Had ileostomy with eventual J-pouch. Would like to know alternative medicines to help with pouchitis re: bloating and mild inflammation. Was advised of fatty acids recently, flaxseed etc.

Name: Stephanie
Email: sgtita@aol.com
Age: 26
Country: Broward, Florida, USA
Surgery: J Pouch
IBD: UC
More Info: Diagnosed in Dec '96 with UC and went on several meds that made me sick and eventually did nothing. AFter having my third child in Aug '99, Drs told me to prepare for the worse which came in May 2000. I was so sick that they thought they would lose me. June 6 2000 I had the 1st of 3 operations. The 1st was total removal of colon. 2nd was in Sept 2000 when J pouch was put in and in Jan 3 2001, was the closure surgery. Trust me when I say it was hell and still it is not easy because life will never be the same for me or anyone with the J pouch. But it beats living with pain. I thank God for Dr Henry Wodnicki from Mount Sinai Hospital in Miami - he was sent from up above. For those that are considering this surgery, have faith and all will be good. God bless you all.

Name: Susan Foust
Email: sfoust@ford.com
Age: 39
Country: Saline,MI USA
Surgery: J Pouch
IBD: UC

Name: Chris
Email: pakimegs@yahoo.com
Age:
Country: Mishicot, WI
Surgery: J Pouch
IBD: UC
More Info:My husband had surgery in 1998 after being very ill for about 1 year. Surgery was done at University of Chicago. He has had no problems. We are both willing to be a support system for anyone who needs it. It is hard on the whole family.

Name:
Email: n_l_a_l@hotmail.com
Age: 22
Country: Canada
Surgery: J Pouch
IBD: Friend had ulcerative colitis, now has crohn's
More Info: I'm looking for some info for a friend. She would like to find a woman in her mid to late 30's who has ulcerative colitis, crohn's and a j-pouch. In our search we've been able to find crohn's and a j-pouch or UC and a j-pouch but not both. Please contact me if that is you or you know anyone. Much appreciated:)!!!

Name: Laura
Email: lbaiton@yahoo.ca
Age: 30
Country: British Columbia, Canada
Surgery: J Pouch
IBD: UC
More Info: Diagnosed with UC in October '93. Asacol gave me pancreatitis. On prednisone for 1 1/2 years and switched to 6MP which stopped working. Had 3 step j-pouch procedure done in two steps in Sept '97 and Jan '98. Started having pouchitis in July '98. Found a cyst between my spine and pouch and had it drained for the first time Nov '99. Cyst drained again in April '00 and Dec '00. The first and second time the cyst was drained the pouchitis went away....this last time it didn't. I suffer with a lot of sacral area pain that is quite debilitating at times. Have been told to start seriously thinking about an ileostomy again. Am interested in hearing from someone in Canada that has a BCIR and their trials and tribulations with it please. Look forward to hearing from anyone else too. What doctors do you recommend for the BCIR in Canada?

Name: Geni Swarbrick
Email: genis@agh.com
Age: 53
Country: Laguna Niguel, U.S.A.
Surgery: J Pouch
IBD: UC
More Info: I was diagnosed with Ulcerative Colitis in 1990. I was treated with steroids for a few years. Just this year I had my whole colon removed and and went through 2 more operations when I had the J pouch. I have had some little discomfort but am so happy to be living a normal life. With God's help I've only had some minor infections of the rectum, and I've lost considerable weight. But am sure with time things will even get better.

Name: Georgianna Ahmed
Email: gigiinmass@webtv.net
Age: 48
Country: Randolph, Massachusetts, USA
Surgery: J Pouch
IBD: microscopic colitis/ cologinis colitis
More Info: The end of June 2000, I had a total colectomy and a temporary ileostomy and a j pouch put in. Then the end of September, I had the bag removed and the j pouch connected. About one week home from the hospital I got an infection where the bag was and the incision was made. This landed me in the hospital for another 5 more days. I was so sick I found myself thinking maybe I had made a mistake by having this surgery. That was only because I was feeling so bad. Today I am so glad I did it. I feel like a million dollars! I would recomend this surgery to anyone who wants to feel better.

Name: Kathy
Email: k_parrow@yahoo.com
Age: 37
Country: Harbor City, California, USA
Surgery: J Pouch
IBD: UC
More Info: I had UC for 5 years and it never really went into remission, none of the meds were working at the beginning of this year. Had 1st surgery April 27th and the 2nd on June 13th this year, I've had my ups and downs and would like to get some support in the recovery period and depression during recovery.

Name: Neil
Email: flies@iafrica.com
Age: 34
Country: South Africa
Surgery: J Pouch
IBD: UC
More Info: I have had the 3-stage colon removal, pouch formation and closure operations. The last op 6 months ago. I have been experiencing problems. A section of the ulcerated rectum (5cm) was not removed surgically. I also have a fistula emerging from it. I still go to the toilet 15 times a day, am extremely thin and weak, and seem to be experiencing blockages accompanied by acute cramping and continuous discomfort. Any advice appreciated.

Name: Jan Dollar
Email: stevedollar@home.com
Age: 45
Country: Fremont, California
Surgery: J Pouch
IBD: UC
More Info: I had a 1-step j-pouch in 1995 after more than 25 years of UC (mostly in remission). I am a RN (retired) and a mother of two teenage boys. I would be happy to lend support to anyone considering this surgery.

Name: Karyn McHale
Email: karyn@argonaut.com
Age: 33
Country: London, UK
Surgery: J Pouch
IBD: UC
More Info: I would just like to reassure anyone that maybe considering or will be undergoing an Ileostomy and Pouch surgery that yes both operations are long and you'll will have some post-op discomfort, but it is worth it. After a particulartly bad bout of UC and a 4 week stay in hospital it was pretty clear to me that the only way I was going to recover was to have an Ileostomy. I was pretty scared and apprehensive about the surgery but the nursing staff especially my stoma and pouch nurse, Claire and Julia were wonderful and of course my amazing surgeon Mr.P. MacDonald. I will remain forever grateful for the care and support I received from those that looked after me at Northwick Park and St Marks Hospital. Having an Ileostomy and now having a J-pouch hasn't really prevented me from doing anything that I did before surgery. I don't consider having to do number two's more often than most people an annoyance but I can say I much prefer having a pouch than having UC. Anyway I think I'm going on a bit now.

Name: Aric Rankin
Email: monkey.bite@mailexcite.com
Age: 18
Country: Windsor
ICQ:5381270
Surgery: J Pouch
IBD: UC
More Info: Hey, howz it going? I know that suffering from any type of IBD is not a great time. But it's friends, Family, Doctors, Nurses, and most importantly people who listen. That make things a whole lot easier... The best thing that ever happend to me before sugery was talking with an ostomy patient that is now a great friend of mine. It's one thing to hear support from just anyone, but to hear it from someone that has been there is alot more reassuring.

info....
Diagnosed: June, 1999
Cause: accutain (acne pill med)
Time in hospital: 2 months
Location of surgery: London, ont.
Do i regret sugery: Do dogs pee out their ears?

Anyways, i'm hear to listen and support.

Name: Michael
Email: mstevenson20@home.com
Age: 39
Country: Indianapolis, USA
Surgery: J Pouch
IBD: UC/Cancer
More Info: Diagnosed with UC in '83, had the 2 step j pouch surgery in '98. So far, no complications worth mentioning. It just takes a little time to adjust to the new "feeling" that you experience. FYI: I'm a Firefighter with a very active lifestyle. I have only had to make some minor adjustments. Not bad considering the alternative. If I can help please write me.

Name: Carrie
Email: chilton@ccb-inc.com
Age: 25
Country: USA-Maine
Surgery: J Pouch
IBD: UC
More Info: I had the J-pouch operation when I was 20, after suffering from ulcerative colitis and the occasional pancreatitis since I was 16. I would be glad to talk to anyone about my experience and/or answer any questions.

Name: Carrie
Email: giggles62@msn.com
Age: 38
Country: Aurora, CO
Surgery: J Pouch
IBD: UC

Name: Shelby
Email: shelbycrabtree@hotmail.com
Age: 28
Country: Burkburnett, Texas USA
Surgery: J Pouch
IBD: UC
More Info: I am a 28 year old mother of 3. I have had Ulcerative Colitis for 6 years. I am scheduled to have the 2 step, J Pouch surgery on July 25, 2000. I am very nervous about it and look forward to talking to you and hopefully becoming more prepared for what I'm about to go through. Thanks in advance.

Name: Mike Rigby
Email: anneandmike.rigby@ukgateway.net
Age: 63
Country: England
Surgery: J Pouch
IBD: UC
More Info: After 15 yrs of UC I had a total colectomy in Dec 1995 and ileal pouch fitted in Jan 1996. Was left with pouch anastomosed to rectum at 6cm instead of usual 2-3cm. This caused 4 yrs of retention causing me to frequent loo 12-15 times a day with probs, especially at nites. Hospital didn't tell me of problem so had 2nd opinion in 1999 and am now using medena catheter to evacuate. It was also found (duringEUA) I had a vey florid fissure and anal skin tags which meant I couldn't have a "pouch revision". When latter becomes much worse I will have to have an ileostomy unless anyone has any alternative info. I'll keep listening out here. Thanks

Name: Sabine
Email: conor2003@aol.com
Age: 35
Country: Austria
Surgery: Ileostomy
IBD: UC
More Info: I have got an Ileostomy since Sept.99 and I am doing fine. I will get the rest of my colon removed in autumn and my surgeon offered me a J pouch. Should I do it???

Name: Jen Cohen
Email: jencohen@smileyface.com
Age: 13
Country: Canada
ICQ: 25414358
Surgery: Ileostomy and now J Pouch
IBD: UC
More Info: Adhesions removed- March 2000,. Now have a J Pouch.

Name: Marek
Email: mwojak@nsw.bigpond.net.au
Age: 35
Country: Sydney, Australia
ICQ: 40626116
Surgery: J Pouch
IBD: UC
More Info: G day
I'm 35,male,good looking & seeking a fellow (female) ostomate for chat & possible meeting in the future
Its dam hard to have relationships with the so called "normal" ppl/women as once they find out u have a "bag" they tend to shy away from a relationship!
Any women in the same boat with men?
Drop us a line
PS Women need only apply.....hehe

Name: Barb
Email: Barb_24@hotmail.com
Age: 23
Country: Australia
Surgery: J Pouch
IBD: UC
More Info: I was diagnosed with Ulcerative Colitis when I was 3 and had my first ileostomy when I was 7.

A J-Pouch was also made but when I had the reversal of the ileostomy the pouch failed to work and I got adhesions. They tried this a second time a few years down the track, but it still failed. Over the years I've had 5 stomas and 9 operations. One of these being a Liver transplant in April 1999. I had this because I had the diseases Cirrhosis and Sclerosing Cholangitis. Apparently 1 in 10 people with Ulcerative Colitis get liver disease as well. I was one of these people. The initial operation I had when I was 7 was supposed to stop the liver disease getting worse, but it didn't.

Anyway, I'm going well now and would be happy to talk to anyone who wants a chat.

Name: Ebony
Email: ebnsteve@optushome.com.au
Age: 28
Country: Melbourne, Australia
Surgery: J Pouch
IBD: UC
More Info: I made it through surgery and now I eat whatever I want - even curry!!! I've got lots of tips on how to eat anything (except nuts) and not be in pain.

Name: Michelle
Email: gordon7314@aol.com
Surgery: J Pouch
More Info: I am trying to find information about giving birth after j-pouch surgery. If you have any information for me or if you can tell me where to find this information please email. Thanks

Name: Angel
Email: angelzscentblair@netscape.net
Age: 31
Country: USA
ICQ: 47989995
Surgery: S Pouch
IBD: UC/Cancer
More Info: I have a S pouch but have experienced pancratitis, infection, obstruction, dehydration, etc. throughout my ostomy experience.

Name: Colleen
Email: colleen_dean@hotmail.com
Age: 31
Country: Canada
IBD:UC
Surgery: J Pouch
More Info:I was diagnosed with mild ulcerative colitis in 1998. Over the next year, it became very severe, and I wasn't responding to any of the drugs. I had my j-pouch surgery in 3 stages: April, Sept. and Dec. of 1999. I'm doing really well so far!

Name: Marsha
Email: marira@dellnet.com
Age: 54
Country:NYC/USA
IBD:UC
Surgery: J Pouch
More Info:Thinking about J-pouch surgery. Have hernia now. Hair is falling out and I'm a woman, when does this stop?

Name: Michelle
Email: Gordon7314@aol.com
Age: 26
Country: Mississippi
IBD:UC
Surgery: J Pouch
More Info: I would like to talk to other young adults who have had the J-pouch surgery. Please contact me so we can chat.

Name: Marsha Herman
Email: marira@dellnet.com
Age: 54
Country: New York
IBD:UC
Surgery: Ileostomy
More Info: I have a month to decide whether to have J-pouch surgery. Am not doing well on the pouch. Feel that I'm too old for J-pouch surgery. Any comments?

Name: James
Email: jjpm24@aol.com
Age: 24
Country: Minnesota
IBD:UC
Surgery: J Pouch
More Info: Disease hit very quickly, two weeks after diagnosed was in hospital and 40 lbs lighter. Had j pouch surgery and am doing great.

Name: Ricky
Email: RickyB14@aol.com
Age: 15
Country: USA
IBD:UC
Surgery: J Pouch
More Info: Had Jpouch with temporary ileostomy. Feel free to email me, I want to talk with anyone, esp. other teens with colitis, Jpouch, or considering surgery.

Name: Irma
Email: eyespees@aol.com
Age: 46
Country: USA
IBD:UC
Surgery: J Pouch
More Info: Would love to hear from people around my age that have had this done.

The surgery is a bitch BUT I am finally coming out of it. I had the ileostomy and j pouch surgery close together(7 weeks after ileostomy). Today is a great day and I am not any meds anymore. Just be patient with the surgery and it will all work out.

Name: Stacia
Email: harger@atlascomm.net
Age: 25
Country: USA
IBD:UC
Surgery: J Pouch
More Info: I was diagnosed with Ulcerative Colitis in December of 1997. I have only had 1 attack...a severe one, and it has never gone into remission. February 1, 1999 I had the first of my j-pouch surgeries. March 15, 1999 I had the second (take-down) surgery to close my temporary ileostomy. I have been doing GREAT since. Only go to the bathroom about 6 times a day...can even wait up to 7 hours between trips!!!!! Sometimes I even forget I ever had UC or the surgery (until I see the scar). Would love to talk to anyone who has had this surgery or is thinking about it.

Name:Veronique
Email: plasticdragons@hotmail.com
Age:35
Country:Western Australia
IBD:UC
More Info:Hi there.........I have a W pouch......similar to a J pouch..cept bit more roomy.....I lived with an ileostomy for 3 years becoz I was really worried about having the w pouch surgery....thinking better the devil you know than the one you dont kind of senario. Had the w pouch for 12 months now and am so pleased with how it has all gone..........am really healthy and well. I was very depressed after my bowel perforated whilst I was in the hospital begging for a total colectomy ileostomy....(the gastroenterologist thought I was putting it on and prescribed me anti depressants ) took me a few months to get over the shock of a perforation in hospital care and to get use to life with an ileostomy...but once I did it really became second nature and I really didnt give it much thought apart from the maintenence it required....but I just went on automatic with that and life was certainly better than U.C days. I had a hard decision as to go for the pouch or not...and now that I have am very happy...it has worked well for me....So anyway living with the ileostomy for 3 years I am really happy for anyone who wants to pick my brains about my experience or any questions that i can answer having experienced both sides of this fence...SHAZ...you devotion to your site and to the people out there searching for support is a real credit to you ...ONYA GIRL.....

Name:Ginny K
Email: ViKin818@aol.com
IBD:Indeterminate Colitis
More Info:I have had a j-pouch for 12 years. I have been trying to locate other people with indeterminate colitis to find out what type of meds they are using. With sulfasalazine, my pouchitis is in remission. I have tried to stop taking it because it causes extreme fatigue, but it starts bleeding after a few days.

My doctors don't know why the sulfasalazine works for me nor do they know of any other patient using it. But with it, frequency is 2-3 times per day with no other thickeners, anti-diarrheals, etc. If you are in a similiar situation or can offer any suggestions please e-mail me at ViKin818@aol.com

Name:Gina Morrow
Email: gmorrow@2ki.net
IBD:UC
More Info: Just want to know how other people are coping with a J-Pouch.

Name:Brian McMurren
Email: mcmurren@wcl.on.ca
IBD:UC
More Info:Thinking of having J-Pouch surgery. Any comments, advice, or just plain old conversation with fellow ileostomates will be greatly appreciated. Will also answer any questions that you may have regarding living with an ileostomy.

Thank-you

Name: Susan
Email: srbbcb.balmas@prodigy.com
IBD: Daughter had UC
Surgery: Daughter has j pouch surgery
More Info: If parent needs help in understanding what the docs are saying, needs help in making appropriate choices for their child or just an ear of a parent who has been through it with a child, I would be happy to be there for you. Our daughter was diagnosis at age 2 with UC. We did the usual, prednisone, azulfidine, later it was asacol, bleeding, pain, scary tests, describe to a doc where it hurts your baby when you don't even know how it feels, been there and done all that. Now we are facing dysplasia and removal of the colon (hey, a dramatic cure for this disease!) (Note: Claire has now had j pouch surgery - all in one operation - Shaz). Boy, is that a heavy decision to make for your child. Would be happy to help you with any part of this that you are experiencing I could.

Name: Anne Murphy
Email: acmurph@bigpond.com
Country: Australia
Surgery: Initially a J Pouch but had to be converted to an ileostomy
IBD: UC
More Info: Happy to talk to anyone who wants to know which road I have walked down and what has happened. Different experiences re-told can give a variety of perspectives. I hope that my experiences can help someone/anyone who needs to walk down that same road to do so more easily.