Hi everyone...I have "stalked" this site since I was hospitalized in August '08. I finally broke down and officialy joined the group now. I would love to meet and chat with others, especially women who have the Jpouch, learn of others experiences etc. I asked my surgeon if they could hook me up with someone locally for support but so far no luck...so now you are all stuck with me!!!

Hi....
Welcome to the site....I am also an Upstate NYer...from just outside the Utica/Syracuse area...I have the jpouch but it's disconnected
right now....
I have not heard of Leicester, NY..
I know there are a few others here from NY too... You may also like to click on the "chat" and see if anyone is around in there. I'm not sure of the times people most frequent it, I'd say mostly evenings. I just wanted to say hello and welcome you!
Char...

HI!! Thanks for the welcome. I'm having trouble getting into the chat...says something about my server and the firewall. I'm not sure how to disable it I'm still working on it. Leicester is near Geneseo...about 30 miles south of Rochester.

I had a colectomy and the Jpouch created in Dec, but I'm not connected yet, I have an end ileo right not. Hopefully next surgery will be March if all goes well. Nervous but anxious at the same time to finally use it!

Becky

Hi Becky,

I am from Rochester. My surgeon is Dr. Rauh. My J-Pouch was hooked up in December 2007 and is working very well. I have had no problems and it's great not to have to put up with all the issues associated with UC. There isn't anything I can think of that I haven't been able to do.

How are you managing with the ostomy? Who is your doctor?

Welcome to the site!

Vic

Hi Vic!!

Thanks for the welcome, you are the first person who I have met that actually lives "locally" to me!!

My surgeon is Dr. Salloum. Originally my surgeon was going to be Dr. Hendrin but she left Strong to go practice in Michigan - I was bummed, I really wanted a female surgeon and spent alot of time meeting with her while I was in the hospital in August (almost had to do the first step on an emergent basis). I really liked her and was disappointed, but so far I'm happy with Dr. Salloum who she recommended.

My surgery was done at Strong. I ended up with an end ileo since my intestines wouldn't cooperate for the loop ileo as planned (not enough messenary plus adhesions from prior pelvic surgeries). I had alot of trouble with leakage under the wafers at first due to my stoma being recessed and inverted (the outlet drains straight down), but after returning to the hospital in Jan. with an abscess, the ostomy nurses worked really hard and found me an appliance that works very well. So now I could actually live with the ileo if I had to.

I have my pouchogram on the 23rd, and if all is healed, will be reconnected in March. I'm looking forward to it but also apprehensive at the same time. I still have some lower back and rectal aches along with lower abdominal pain from the first surgery, but my surgeon says the second step will be a piece of cake compared to the colectomy, ileo and pouch formation...I sure hope so LOL. I already know it can't be done laproscopically, he will have to reopen my large pubic hairline incision I have so the recovery will longer again. But hopefully all of this will be well worth it in the end. I'm looking forward to days of being able to eat, make it to the bathroom and actually enjoying life again. Its been years since I could eat without pain, scoping out all the public restrooms and all the other fun things that come with UC.

What made you decide to have the Jpouch surgery, was it by choice?? Were you diagnosed with UC a long time before your surgery? Are you happy with the pouch?? Did it take you long to adjust to the pouch after having an ostomy?? I haven't been able to work since July, I'm nervous about adjusting to the pouch and then going back to work with it. How did you do with returning to work? I'm a nurse and when I return to work I'll be lifting patients again, I frequently get mandated to work double shifts, and wonder how stress will effect the pouch. Even a little stress caused my UC to flare...

Well I've written you a book, hope your eyes aren't tired!! Thanks for introducing yourself and its sooo nice to meet someone locally who has had UC and the surgery. Looking forward to chatting with you.

Becky

Becky,

I'm glad to hear you found an appliance that is working for you. I had a very difficult time with leaking under the wafer after step 2 (loop ileo).

It sounds like you've had some out of the ordinary circumstances. I didn't know you could have the pouch created and also have a end ileo. Is the intestine severed just before the pouch and then re-attached in the next surgery?

I had UC for about 20 years and sort of lived with the symptoms. About 5 years ago I had a major flair that landed me in the hospital. I was just about to have surgery when my doctor tried remacaid which had just been approved for Chrons/UC as a last ditch effort. Remarkably, the flair turned around. When I went for a maintenance dose I had a terrible reaction and couldn't use it anymore. So much for that approach.

In March of 2007 I had another flair which led to an emergency colectomy and an end ileo. This was pretty easy to manage and once I healed from the surgery I felt better than I had felt in many years. No more having to go ten times before noon. No more urgency. No more fear of not making it in time. No more of that achey, feverish feeling. I told my doctor I felt so much better and he said "no, you feel normal".

I had the 3 step procedure so in October 2007 the pouch was created opening up the same incision as the first time (sounds like you're having the same thing). The loop ileo was much more difficult to manage and I struggled with it. The good thing was it gave me more incentive to have the take down which was done in December 2007.

I was kind of anxious about how it was all going to turn out. The first few days following the take down procedure were rough. I had to go just about every hour (sometimes twice) and I really wondered if I had made a really big mistake. Within the first week though things started to settle down. But, even when things were at their worst, I never felt urgency like with UC. Everyday I felt like I had to go less often. Six weeks later I was back to work which invloves flying every week.

Now, a little more than a year later, I use fiber capsules (3 in the morning and 3 at night) to help with consistency. I also use immodium to help with frequency (2 in the morning and 2 at night. Before I fly I find it helps to take 4 although I flew for almost a year before I started taking any. The immodium just makes it more comfortable and slows down the frequency a little. In an average day I have to go 6 to 8 times. A lot depends on how much I eat. With the j-pouch it's pretty simple - the more you eat, the more you have to go. We only have so much storage and that's all there is to it.

I find it interesting that even after 14 months I still feel little bits of improvement, It seems I can hold it a little longer even when I feel like I have to empty. I never feel like I can't hold it until I can get to a restroom and I've never had and accident. Except for how often I have to empty, I feel pretty normal. My surgeon put in a way that gave some good perspective. Many people are in the bathroom 6-8 times a day just to urinate. We're in there the same number of times (give or take a few)just leaving a differnt kind of deposit.

I'm also glad to be able to chat with someone so close to home. I'm very interested in how things go for you. I hear people say it's a little different for everybody, but I am happy to answer any questions you may have now and as things progress.

For what it's worth, I am so glad I had the procedure done. If I knew at the first flair what I know now, I would definitely have had the surgery then. I have had no complications/problems and life is good with the pouch. I know I could have lived with the end ileo, but I feel the pouch is a much better solution and gives a little better quality of life.

Stay in touch, I usually check in at least every couple of days.

Vic

Becky,

I'm glad to hear you found an appliance that is working for you. I had a very difficult time with leaking under the wafer after step 2 (loop ileo).

It sounds like you've had some out of the ordinary circumstances. I didn't know you could have the pouch created and also have a end ileo. Is the intestine severed just before the pouch and then re-attached in the next surgery?

I had UC for about 20 years and sort of lived with the symptoms. About 5 years ago I had a major flair that landed me in the hospital. I was just about to have surgery when my doctor tried remacaid which had just been approved for Chrons/UC as a last ditch effort. Remarkably, the flair turned around. When I went for a maintenance dose I had a terrible reaction and couldn't use it anymore. So much for that approach.

In March of 2007 I had another flair which led to an emergency colectomy and an end ileo. This was pretty easy to manage and once I healed from the surgery I felt better than I had felt in many years. No more having to go ten times before noon. No more urgency. No more fear of not making it in time. No more of that achey, feverish feeling. I told my doctor I felt so much better and he said "no, you feel normal".

I had the 3 step procedure so in October 2007 the pouch was created opening up the same incision as the first time (sounds like you're having the same thing). The loop ileo was much more difficult to manage and I struggled with it. The good thing was it gave me more incentive to have the take down which was done in December 2007.

I was kind of anxious about how it was all going to turn out. The

Becky,

I'm glad to hear you found an appliance that is working for you. I had a very difficult t

Hey Vic!!

The best way to describe what I have in terms of my ileo and pouch is this ~~ I'm sure you have seen pictures of what your insides look like with the pouch created and a loop ileo, well where your loop is, mine is completely cut all the way through - one end is completely closed shut and the other end is my stoma. It leaves several inches of my intestine leading to my pouch (the end stapled closed). The other end of the intestines is my stoma.

So yep, my next surgery they will cut a small portion of the closed end off(to get rid of the scar where it healed together)that leads to my pouch, and then reconnect it to my stoma end.

I was hospitalized in Aug and was scheduled for an emergent colectomy also. One week after my first does of Remicade there was no improvement on my scope, so I tried a second dose Remicade (only a week after the first), then they rescoped me, it showed some improvement so I decided to try the Remicade infusions and not do the surgery then. But after doing the infusions every 4 weeks for Sept/Oct/Nov I wasn't able to go the recommended 6-8 weeks in between infusions, the relief only lasted 3-4 weeks before my symptoms were back. That is when I decided to have the surgery. I had to try the Remicade because I didn't want to have the surgery and then wonder later "what if..." if I hadn't given the Remicade a chance (it was the only medicine I hadn't tried to treat the UC). It also gave me time to really think about the surgery and accept it vs. it being told to me I had to do it.

I just hope a year from now I can travel and not worry about making it to the next bathroom, be able to handle the stress of work without being sick all the time, and learn to enjoy food and eating again. Those are my goals for after my surgery!!

Take Care, Talk to you again soon! Becky