Hello My name is Karen. I'm posting this again as I cannot find my first post. don't know if I am posting this is the correct location so I apologize in advance.

My husband David was diagnosed with Ulcerative Colits about 3-4 years ago. He has been to many doctors and tried every medication there is on the market with no success. After being on Remicade for six months also with little success we made the decision to try high dose Remicade and started infusions two weeks ago. So far the Remicade is still not working. David's doctor stated that if the Remicade does not work, surgery is the only other option.

We have been in contact with some wonderful people that we found from the website Great Combacks who had ileostomy surgery. Thanks to them IF David needs to have surgery we are a little less frightened.

If David is a candidate the newer procedure ileoanal pouch (J-pouch) sounds interesting to us. However, we have heard that there are many complications from this type of procedure and we should talk to as many people as possible before having this procedure done.

I'd like to hear from those diagnosed with UC that have had the J-Pouch surgery. I'd like to know if the procedure was successful, if not, why? Likes, dislikes, etc., etc., etc. Any information you can provide would be very appreciated. We would be interested in speaking with you and if you are ok with that let me know and we will somehow exchange contact information.

Hi. My name is Lisa and while I don't have UC, I do have a jpouch. I have FAP and have had my pouch for about 5 yrs. It does come with both pros and cons, but after an adjustment period most people prefer it over an ileostomy. Good luck and God bless!

hi yes i had uc for ten years had the jpouch surgery two years ago well worth it depressing for a while wearing the bag but i managed through the pain ive worked hard on being fit and being a young lady im in 30s was depressing with poo on my belly in bag. The only side effect since is i had a blockage....i had dr simmang grapevine texas also hes in dallas. good luck

Hi Salute,

I am also in Texas. I had my first surgery 7 weeks ago and now waiting to fully recover and have the second (take down) surgery, hopefully in Feb 2010. I don't know if your husband already had surgery or not, but if I can help you in any way, please feel free to contact me. BTW, I was told that most people go with j-pouch.

Salute, Any update on your husband's condition?

Hello...I'm brand new to the group still trying to figure out what all is available...I'm from Louisiana....thought I was close enough to Texas for y'all to allow me in the group lol...I've had a j-pouch since 1995 and the surgery was performed in Dallas...If anyone would like to chat or have any questions, let me know...Hope to hear from y'all and good luck to everyone...Rich

Hi,

My name is Kim and I was here formerly as Nocolon but can't figure how to sign back in as myself. lol

I have had my j-pouch working since 4/18/2000. It's not been an easy road but life is great! I take a probiotic nightly and it's been a pouch-saver for me!

Feel free to contact me if you want to talk.

Hi.

My name is Gordon from Dallas, Tx (Rowlett) . I had a subtotal colectomy w/j-pouch in Feb 2000.
I have not had any problems with it thus far. I am so thankful that the J-pouch option
was available! It's been 11 years now and my life is next to normal but for the fact that
I have to go to the bathroom more frequently. The J-pouch will expand over time and reduce the need
to go as often as when the surgery is first performed. My takedown was done w/one operation.

This is the first forum I've found that really addresses the j-pouch procedure and people that
have similar experiences. I look forward to discussions and will help anyone to the best of my ability.
Please fell free to contact me with any questions or concerns you might have.

Gordon

Welcome to the forum, Gordon.
It's good to hear that you didn't have any problem. When you say you go fequently, how many times in 24 hours?
I am in Gerapevine. Do you know of any local support group meeting in-person?

Thanks!

hi beucfree,

I "go" an avg of 12 to 15 times a day, although I never really counted. Sometimes it can still be frustrating even after 11 years.

The only support group I've found so far is at the UT Southwestern Medical Group in Dallas. I will get the link and post it later. It's from a recent post though, so I'm sure it's still valid.

How have you been doing with your UC/J-pouch? I'm interested in hearing from others. Feel free to e-mail me or PM me whenever! TTYL

Gordon

Hi

I hope everyone is doing well. I'm now about 6 years out from my letdown surgery. I've found the main problems to be occasional blockages that land me in the hospital and that when I get a stomach bug it's harder on me that it would have been presurgery. Life is so much more enjoyable although I must admit I still find myself wishing I was "normal" on occasion...usually when I have a blockage or stomach bug. I am so much healthier now than I was before my surgery. I am able to enjoy my life with my hubby and our 2 daughters, the youngest also has familial adenomatous polyposis and will begin her yearly scopes in the next couple years.

I would love to hear how y'all are doing so please update us.

Lisa

Hi

My name is Michael from Waco, TX. I was diagnosed with UC in 1979. I hated having UC and it became more unbearable up until my surgery. I had the 2 part j-pouch surgery in May and September of 2009. I developed two fistulas after the 2nd surgery and had leakage comming from my incisions. The doctors felt that they would heal on their on, but they didn't. I tried 2 glue procedures in November and December of 2009, both unsuccessful. I finally had a 3rd surgery in March of 2010 and had about 8 inches of the small intestine removed. This totally changed my life. Before, I was still wearing pads and bags to catch the leakage from the fistulas and feeling dissapointed with my progress most of the time. Now I'm free of all of that and when I eat right, I feel fantastic! I have found out that I can easily get a blockage when I eat nuts. Nuts had been one of my favorite foods and had no problems with eating them even after the 3rd surgery for several months. Then last Christmas (2010) I made a bunch of peanut brittle (as I do every year) and had severe pains in my abdomen. I felt nauseous and threw up and was having these severe cramp-like pains every few minutes. After an hour of this, I tried drinking a laxative and immediately threw that up. This lasted for about seven hours and finally I went to the restroom and felt immediate relief. I didn't immediately tie it to the peanuts then because I had eaten several other foods and didn't have my usual intake of water that day. I did go into the hospital the following day and had a CT-Scan that came back normal. This has occurred several times throughout this year. Once, after eating more peanuts, another time after eating a slice of pecan pie, and another after eating some walnuts and again last week after eating just a couple of almonds. No more nuts of any kind for me! :-( I am still so grateful for this surgery and feel healthier than ever!

quote:

UT Southwestern Medical Group in D

I would love the info for this since I am going in for surgery soon I suppose. I live in Dallas, TX.

Trying for jpouch but might end up with the BCIR

Hi Vanessat

I have FAP also. Diagnosed in 2005 with stage 1 cancer. How are you feeling? I know I felt very alone because I didn't know anyone else who had gone through this. I am so thankful I found out early enough to be able to just do the surgeries and not have to go through chemo. Sid the doctor explain what would happen if you didn't do the surgery. This is a condition for which there is no cure, only treatments. I won't lie...recovery is no fun, but in time it all becomes a big blur and I feel so much healthier now. If you have any specific questions feel free to ask. God bless!

Lisa

Here's the link to UT Southwest Medical Center Crohn's and Colitis Support Group Meeting. I think it's a monthly meeting. There is a phone number where you can call for information. I doubt if there are j-pouchers in this meeting.

http://www.utsouthwestern.edu/...stive/resources.html

Crohn's and Colitis Support Group Meeting
Where: Outpatient Building, 4th floor, Room WA4.102, UT Southwestern Medical Center
Information: Contact Rose Deward at 214-645-0565 or Rosemarie.Dewald@utsouthwestern.edu