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J-Pouch Contact List - Page 2
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30 September 2002
Name: Evan Brodie
Email: evan_brodie@hotmail.com
Age:28
Country:Fresh Meadows, New York, USA
IBD:UC
Surgery: J Pouch
More Info: It has been six months since I've had a colectomy with an ileoanal pullthrough (J-Pouch surgery), and I am having a pretty rough time adjusting, physically, spiritually and emotionally. Granted I am now completely off all the horrible medications of Asacol, 6-MP and prednisone, my body is extremely sensitive to all types of food, and I need to empty my pouch at least 20-30 times a day.
When I had ulcerative colitis, at least I had some understanding of my body, and could understand what was going on inside based on the most subtle of feelings of pain, indigestion, etc., so with the exception of my former chronic abdominal discomfort, I was in pretty good control of my symptoms, and felt adventurous and enthusiastic in trying out different remedies, from Chinese herbs to supplements to customized diets.
Now, however, I feel somewhat disconnected from myself, in that I don't know who I am inside physically anymore. I have yet to take control of my bowels, understand the different degrees of pain and discomfort I feel and act accordingly, and really regain that sense of complete inner control I used to have as my only source of comfort.
I am so lucky to have the most caring girlfriend in the world, and I love her so much. She understands that my sexual drive has diminished, at least until I fully recover and regain my strength and nutrients back in my system. But it's very painful and frustrating, when I cannot always provide what she needs. This will be another adjustment I need to cope with, along with not being able to do my favorite physical activities of rollerblading and paddleball that occupy most of my free time. On the brighter side of things, this will be yet another major challenge and test of character in my life. This experience has really reinforced the truth that family and true friends are the most valuable possessions in one's life
8 September 2002
Name: Patricia
Email: Gwynn1@worldnet.att
Age:46
Country:Maryland, USA
IBD:UC
Surgery: J Pouch
More Info: Hi, going to have surgery this Sept. 13th, 2002. I will have the two surgeries. first the ileostomy then the j-pouch, Hopefully, after two months, anyone with any helpfull information will be greatly apprecated.
18 August 2002
Name: Michael
Email: indecisive6@aol.com
Age:20
Country:Long Island, New York, USA
IBD:UC
Surgery: J Pouch
More Info: Diagnosed in 1997 at 15 years old with UC. Tried all meds, asacol, dipentum, 6MP. rowasa as well as cortenemas, finally colozol. Only relief was with prednisone, no real remissions. One step j-pouch done May of this year, no complications, feeling better every day. I have a life again thanks to two very fine surgeons at Mt Sinai in N.Y.C.
19 June 2002
Name: Caralyn WIlliamson
Email: caralyn.williamson@chesterton.co.uk
Age:29
Country:Scotland
IBD:UC
Surgery: J Pouch
More Info: Diagnosed with UC July 1999 - had colon removed Dec 1999!! Formation of ileo-anal pouch and loop-ileostomy March 2000 (lots of problems)!! Take-down January 2001 which lasted 2 days and I ended up in Intensive care on a ventillator as I had undetected fistulas, causing scepticemia and my body to 'shut-down'. Awaiting MRI scan to detect all of the fistulas - once these have been corrected, the take-down will happen (hopefully) once more!!
21 May 2002
Name: Amy Sussman
Email: amysussman2001@yahoo.com
Age:32
Country:Cherry Hill, New Jersey, USA
IBD:UC
Surgery: J Pouch
More Info: I had my j-pouch surgery in 3 steps due to toxic mega-colon. The surgery took place in 1991. I have a six year old son. Pregnancy was great and delivered by planned c-section. If anyone has any questions please feel free to write. Also looking for anyone who may have infpormation on probiotics for the treatment of pouchitis. Hope to hear from you soon.
19 May 2002
Name: Emma
Email: snowwhite_55@hotmail.com
Age:18
Country:Ireland
IBD:UC
Surgery: J Pouch
More Info: Hello, I have a j pouch for the last 2 years and I am always having trouble with it. I get alot of pouchitis and on average I go to the toilet 12 - 15 times a day and when I eat something I shouldn't then I am practically stuck in the bathroom for the night. I am still getting up during the night to go to the toilet which is the most annoying thing ever. I am still in school and my education is been ruined over the toilet. I have a very important exam next year that I have to sit and it will determine my future and my career so I am getting worried about that. If any teens would like to advise me please please contact me.
7 May 2002
Name: Tanja Mulders
Email: tanja.mulders@communication.gc.ca
Age:39
Country:Canada
IBD:UC
Surgery: J Pouch
More Info: I had ulcerative colitis in 1989 and was operated (3 times) between 1990-91 to get the pelvic pouch. I did very well for ten years, but since recent months had increasing problems with bloating, cramps and constipation. I turned out that the upper part of the rectum had gotten so narrow over time (from scar tissue) that it was virtually closed. A few months ago I had surgery for a temporary ileostomy, and my doctor suggested that there is a type of surgery - and I don't know what it's called - where they can remove the (closed) part of the rectum, move the pouch down and attach it to the remaining part of the rectum. I can choose between this or going back to a permanent ileostomy. Is there anyone who had the same procedure done? Apparently it's quite rare! I would be glad to hear from anyone who can tell me about it.
1 May 2002
Name: Susan Claffey
Email: Susan.Claffey@syssol.ie
Age:32
Country:Ireland
IBD:UC
Surgery: J Pouch
More Info: Had to have revision surgery as damaged section of ileum was left following initial ileoanal anastomosis. 2 years in tremendous difficultly as the problem was not identified.
28 April 2002
Name: David
Email: dalussie@mts.net
Age:24
Country:Winnipeg, Canada
IBD:UC
Surgery: None yet
More Info: I've had UC for 13 years and have had it. The last month or so has been really bad. Thinking about a 2 step procedure ending up with a pelvic pouch. Any opinions? Please let me know...
21 April 2002
Name: Kim Best
Email: kimclwbest@yahoo.com
Age:36
Country:Atlanta, USA
IBD:UC
Surgery: J Pouch
More Info: African American, 1st surgery in 1992. I only have occasional problems with gas. Am pregnant for the 1st time now, I'm due May 7, '02.
22 April 2002
Name: Dewonna Bradley
Email: yorkwalden@aol.com
Age:33
Country:Arjay, Kentucky, USA
IBD:CD
Surgery: J Pouch
21 April 2002
Name: Diana
Email: Draysplace@aol.com
Age:49
Country:Louisville, Kentucky area, USA
IBD:UC
Surgery: None yet
More Info: I have had UC for over 25 years and I feel that I have waited a little too long for this surgery, but now is better than never. I could use any information about J-pouch surgery and what to expect afterwards. I will have to wear a bag on my side for 2 months until the second surgery. I am really in limbo here on how to feel about the whole thing.
10 April 2002
Name: Holly
Email: hollymaria@ivillage.com
Age:30
Country:Virginia, USA
IBD:UC
Surgery: J Pouch
More Info: I am 8 months pregnant with my second child (1st post J Pouch surgery). I would be happy to discuss my experiences with you and hear yours as well.
6 April 2002
Name: Keith
Email: kega@xtra.co.nz
Age:63
Country:Auckland, New Zealand
IBD:Cancer
Surgery: J Pouch
More Info: Had a resection in May 2001 which required me to have a j-pouch and temporary ileostomy. Went through a reversal procedure for the ileostomy on 20 March 2002 and now slowly getting back to a normal life.
12 Mar 2002
Name: Ann Agar
Email: annagarfareham@aol.com
Age:40
Country:Hampshire England
IBD:UC
Surgery: J Pouch
More Info: Hello. Like so many of you, I've had a long journey after nine years of suffering with UC and two differcult pregnancies. My life was saved by Commander Lester at Haslar Hospital, Gosport when my bowel collapsed in 1991. I was given an Ileostomy. Two operations later, I had the J pouch which has not been problem free but I don't regret it, just leave the peanuts and corn on the cob alone!!
I am now happy but careful with a lovin' husband and two six foot plus sons. Would love to talk to and/or help other people on the same journey.
18 Feb 2002
Name: Doug
Email: taniaclibbens@ntlworld.com
Age: 29
Country:England
IBD:UC
Surgery: J Pouch
More Info: I have a J pouch and I'm still having to visit toilet 15 - 20 times per day. Suffering with weight loss and constant tiredness. I'm using codiene and immodium to help reduce the amount of times I go loo. Could anyone please e mail me and offer some advice?
1 Feb 2002
Name: Suzi
Email: suzijp11@aol.com
Age: 32
Country:Flanders, New Jersey, USA
IBD:UC
Surgery: J Pouch
More Info: Had UC for only 3 months, colon perforated, emergency resection then within 2 weeks complete colonectomy with bag, 3 months later j-pouch. Now starting my 3rd month in my first pregnancy with LOTS of questions/concerns for anyone who ever went through pregnancy with j-pouch
1 Feb 2002
Name: Becci Cribbs
Email: mbcribbs@msn.com
Age: 38
Country:Dade City, Florida, USA
IBD:UC
Surgery: J Pouch
More Info: I was diagnosed with Ulcerative Colitis in May of 1998, had my entire colon removed in August 1998 and Jpouch surgery on the March 22, 1999 and the final surgery on June 6, 2000. I have had great success and no more drugs such as asacol etc or ostomy supplies for me.
I actually live my life as normal as I did before I had an ileostomy, I may use the restroom a little more frequently some days more than others but have complete control and eat everything and anything I please.
I'll be glad to chat more with you if you are thinking about having this procedure and answer any questions you may have.
Looking forward to hearing from you!
14 Jan 2002
Name: Kelly
Email: NYKelly2000@yahoo.com
Age: 29
Country:Seattle, USA
IBD:UC
Surgery: J Pouch
More Info: Hello fellow people who know what it feels like to live with one of the worst disease's there is!
Well I have a long history. I was told I had colitis when I was seven years old. I have tried many drugs, sugerys, side effects, depressed days. I now have a jpouch. I guess I am doing ok. I am still here!!! well the thing I am interested in is trying to have a baby. Any info.? would be splendid. My husband has been god sent. Through having a bag ect. I wish this one thing for him (and me)! Want to chat??? A friend who understands? drop me a note.I would love to hear from everyone!
3 Jan 2002
Name: Jackie
Email: rhopeter@hotmail.com
Age: 29
Country:Canada
IBD:UC
Surgery: J Pouch
More Info: I've had UC for 7 years. For the last 3 years I've had 3 surgeries for the J-pouch. Just this past year I had the last one. It went all okay. But the thing is they're trying to get me off the prednisone. So far the only thing is that my energy level is going down. So if there are any suggestions out there or if ya can relate. Please reply!! Thanks!
1 Jan 2002
Name: Holly Johnson
Email: hollymaria@ivillage.com
Age: 30
Country:Richmond, Virgnia, USA
IBD:UC
Surgery: J Pouch
More Info: I am due with my second child (1st child post-J pouch), in May 2002.
23 Dec 2001
Name: Daniel
Email: daniel.c@tpg.com.au
Age: 28
Country:Australia
ICQ: 13302806
IBD:UC
Surgery: J Pouch
More Info: Hi. I had my whole large bowel removed in April 2001 and illeostomy formed. I've just had the J Pouch formed in December 2001, and will have the final closure procedure in a few months.
8 Nov 2001
Name: Bruce
Email: rose@cablerocket.com
Age: 45
Country:Canada
IBD:UC
Surgery: J Pouch
More Info: I'm interested in support groups or information on the pouch and after surgery life. Medications and other suggestions and stories of others.
21 Oct 2001
Name: Corie-Jay
Email: corie-jay@sympatico.ca
Age: 36
Country:Montreal, Canada
IBD:Indeterminate Colitis
Surgery: J Pouch
More Info: Hi, I am a 36 yr old female who was diagnosed with UC when I was 18. My disease progressed over the next 12 years with the typical prednisone treatment and frequent hospital stays. When I was 30 I finally had to have surgery and I had my entire colon removed and I now have a J-pouch. I considered myself to be very lucky since I had the surgery in one step and I had NO complications for the past 5 years. Well all that has changed now. I got pouchitis for the first time and have had it for the past two months. I was hospitalised and now they are not even sure if it is pouchitis or Crohns. The flagyl helps a bit but I cannot stop taking it or I get sick again immediately. I hate the Flagyl SO MUCH. It makes me feel naseous all the time and I am beginning to wonder if I will ever be able to get off it. I would love to talk to anybody in a similar situation. I know that I am not alone, but of course when you are suffering you feel like you are! Write me to give OR receive support.
19 Oct 2001
Name: Anita
Email: runningmuffin@hotmail.com
Age: 18
Country:San Diego, USA
IBD:UC
Surgery: None yet!
More Info: I was diagnosed in 1990, and have recently been given the option of surgery. I'm eager to have the surgery for two main reasons: obviously, UC is unpleasant, and also, I've been told that people who have had this for 10-15 years should be aware of a greater risk of cancer. I've had it for 11 years, so I think it's about time to do something about it. I'm looking at having ileoanal anastomosis, but am worried about the possibility of complications necessitating an ileostomy or other 'external hardware'. I'm trying to find someone who can tell me more about what to expect. Thanks!
17 Oct 2001
Name: Alicia
Email: chekthetek311@hotmail.com
Age: 20
Country: USA
IBD:UC
Surgery: Boyfriend has J Pouch
More Info: My current fiance has had j-pouch surgery, I would just like to know what to expect. Anybody?
15 Oct 2001
Name: Jim
Email: jimdurnford@yahoo.com
Age: 39
Country: Alberta, Canada
IBD:UC
Surgery: S Pouch
More Info: I was diagnosed with UC in 1987. It was quite bad for 2 years including 6 months on disability, blacking out, hopital, and a lot of searching for a bathroom. In March 1994 I had surgery (s-pouch), 6 weeks before my first son was born, and 6 months later closure of the ileostomy. Since then I go to bathroom about 8 times a day (once or twice during the night) but have good control.
15 Sept 2001
Name: Mike
Email: nicholaslauren@msn.com
Age: 36
IBD:UC
Surgery: J Pouch
More Info: I had ulcerative colitis since 1994. Living with UC is not fun. You never know when it will act up. I had many flare ups in the last 7 years. July 2001 I was told I needed to have my colon taken out. On August 13th I had j pouch surgery (which was supposed to be 2 stages), the doctor was able to do it in one stage. My hospital stay was rough, I came home to my family (3 month old, 6 year old and wife for 7 years). I was so happy to get home!! I feel weak and I am trying to find the right doses of imodium and fiber to take each day. I am using the restroom 8-12 times a day. I am driving my wife crazy because I feel lousy all the time. Is there anyone out there with a similar situation? Someone who has had the same surgery recently? Someone who had the surgery a while ago and how are they doing? I appreciate the help!!!!!!!
11 Sept 2001
Name: Gia
Email: slinkyminx@starpower.net
Age: 29
Country:Virginia, USA
ICQ: 33436985
IBD:UC
Surgery: J Pouch
More Info: I am a young lady who had modeling aspirations at the time and had to experience the J POUCH surgery. Right now I am doing fine, at least overall. Depending on my diet, sometimes I go more and sometimes I go less. But at the time I wish there was someone with similar aspirations who could talk to me about visible scars and things like that.
7 Sept 2001
Name: Bob Kermgard
Email: rkermgard@wi.rr.com
Age: 61
Country:Kenosha, Wisconsin, USA
IBD:UC
Surgery: J Pouch
More Info: I am a 61 year old male with 35 years of UC and user of Prednisone for the entire 35 plus years. The long time use of Prednisone has caused side affects, like osteoporosis and cataracts. This was the reason to remove the colon and go for the j-pouch. First stage on January 26, 2001 with creation of j-pouch and loop ileostomy. After 4 months strength regained and had second stage to put the loop inside on May 24, 2001. Since have had many problems of lack of control, butt burn, lots of sleepless nights and accidents resulting in the constant use of adult diapers. Also developed a blood clot on 3rd of July and now have polyneuropathy or nerve disease of the feet, causing numbness and pain in the feet. Am seriously considering reversing the procedure and going back to the external bag where I was learning to live with it. Except for bag placement which interferred with belt line and trousers, and some leakage due to mucous from rectum which would be eliminated with a permanent ileostomy. I realize there is no going back, but I am losing weight and my quality of life is important to me. A younger person may adjust quicker, but I don't have as many years to adjust. The j-pouch surgery itself seems to be successful and it is doing what it supposed to do, but the leakage or residual causes a very uncomfortable and uncontrollable problem for me. Comments about my decision will be appreciated, and I welcome hearing from both sides.
Name: Christine
Email: whistle@compwest.net.au
Age: 43
Country:Australia
IBD:Familial Polyps
Surgery: W Pouch
More Info: Hi Guys, I have lived with familiar polopsis in my family for 3 generation, I being the 3rd and my middle child (daughter) being the 4th generation. My first op was when I was 18yrs old and a resection at 25yrs and I had a W Pouch made for me when I was 36yrs after cancer was found on a polyp hiding in my rectum. I lead a very full life , run two Businesses and Sail a Dinghy all Summer. I have my ups and downs but Life is pretty normal as we know it. I have an adoring husband and 3 children and I will be a grandmother in december. If anyone wants to chat drop us a line as only to happy to compare notes.
Name: Sandra
Email: sandrasuew@aol.com
Age: 54
Country:USA
IBD:UC
Surgery: J Pouch
More Info: Have had two ostomys and two take-downs for j-pouch, had CMV virus during all this and a ruptured ovary which had to be surgically removed (had 2 surgeries in a week that my virus was probably the worst). Have had the 2nd j-pouch for little over a year now. My problem is that i have been having blockages since last November - at first every 2 months or so, then every week, with extreme pain. My doctor says it is adhesions and they must be surgically removed. Scheduled surgery for Sept 12 but have not had a blockage since July 21! Has anyone else had experiences with blockages? Do I really need surgery? Has anyone else had these problems? How often should blockages occur? Need help fast! Thanks.
Name: Tamatha W
Email: twilcox@digitalsolution.net
Age: 25
Country:Hudson, Florida, USA
IBD:Chronic Intestinal Pseudo-Obstruction - possibly Hirschsprungs
Surgery: J Pouch
More Info: I've had intestinal problems since the birth of my daughter 3 years ago when I was 21. Since then, I've had my colon removed, been on TPN/EN for a year, been in ICU, had blood clots, numerous central line infections, emergency Ileostomy - feel like I've been through "almost" it all, and on top of it all, haven't eaten normally (without getting very sick) for 3 years now. I go for j-pouch surgery in exactly ONE WEEK!!! Hopefully, one day there will be an end to all of this, and I will be able to eat normally again. Anyone out there NOT an Crohns/Colitis person???
Name: Jonathon
Email: jonswans@aol.com
Age: 25
Country:Wales, UK
IBD:UC
Surgery: Ileostomy
More Info: I would love to chat with anyone who has experienced 'J Pouch Surgery'. There is nothing quite like getting it from someone who has been there and got the t-shirt
Name: Brian Heisler
Email: brianheisler@hotmail.com
Age: 35
Country:Pepperell, Massachusetts, USA
IBD:UC
Surgery: J Pouch
More Info: I had symptoms for years but was too busy and embarassed to deal with it. Finally it got bad enough and I had the Parks procedure done in August of 1999. The surgeon was Peter Mowschensen, in Boston's Beth Israel. No complications once I got out of the hospital(30 days) and I just avoid nuts and seeds totally. Supposed to avoid chocolate and caffeine, but I can cheat in these areas if I plan carefully. Only about 3-6 trips per 24 hrs now, quality of life is 100% better now. Don't miss my colon at all, and I can do everything I couldn't do the past 7 years or so. Life saver!
Age: 33
Country:Michigan, USA
IBD:UC
Surgery: J Pouch
More Info: Just found out I had UC in April of 2000. By November of 2000 I was in the hospital with no other option but the complete removal of my colon. Now I am just home yesterday from the second phase of the J-pouch surgery and am just looking for other people's experiences. My husband is very suportive but it would still be nice to hear from other people who have had or are going to have this surgery. Would like to talk to anyone who needs support or that we can support each other. God bless.
Name: Keren
Email: keren.moses@stanfordalumni.org
Age: 26
Country:Illinois, USA
IBD:UC
Surgery: J Pouch
More Info: After 4 months of UC with no remission I had my j-pouch done in three steps, finishing in May 2000. I'm pretty happy with it, despite a few problems, and would be happy to talk to anyone considering a j-pouch, or any current j-pouchers.
Name: Maria
Email: maria@btinternet.com
Age: 36
Country:London, UK
IBD:UC
Surgery: J Pouch
More Info: Approx 4 years with ileostomy, then J-pouch 18 months ago, hard at first but great now, almost like before UC. Younger brother had same done. Older siblings didn't get this, why is that!! Became pregnant with second child while with ileostomy - no problems whatsoever - except when giving birth midwife tugged at ileostomy bag saying 'how do I get this off!' Well you've got to laugh.
Did have anal irritation with J-pouch for a year before Immodium/loperamide capsules suggested, did the trick. St. Marks, London, great place to get your surgery done!! Prof. Nicholls brill, as are the stoma nurses. Here if can be of any help at all.
Name: Darleen McDurmont
Email: jmcd@means.net
Age: 35
Country:Winthrop, MN, USA
IBD:UC
Surgery: J Pouch
More Info: Hello, this is Darleen's husband. My wife had surgery week ago and I want to do everything I can to help her accept this. She has had ulcerative colitis since 1989. She was suffering so badly the last 8 months that none of the drugs seemed to be helping. The surgeon said she had only 4 inches of good colon left so she had surgery. Any advice or help on the subject would be comforting to us. Thank you....James McDurmont
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