I had a partial obstruction a few weeks ago and got an X-ray. Finally saw the doctor today to tell me the results.

My pouch has grown so big that it has gone up my right side and curled around, like a big J near my heart. This explains why my belly at night is all puffed up with air and I play the drums on it. He said he has seen this before and sometimes it twists back on itself and causes recurring obstructions. Then he has to go in and remove the redundancy. Anyone have any experience with this?

Am bumping this up because I am hoping someone has some advice about how I can prevent it from getting twisted. I really don't want to go through steps 1 and 2 again. Please... I guess I'm just scared.

I have never seen or heard of this. Give it time I very rarely get on here even though I am having problems. I am sorry you are going through this. We have all had enough of this horrible disease that gets no attention, therefore no government grants.

Thanks for the kind words.

I can't believe no one has any advice or info about redundant pouches. If anyone does, please speak up. If not, well, then I'm glad none of you have had to deal with this.

Who is your surgeon? I too live in the Tulsa area. My surgeon is Dr Rocklin at Tulsa colonrectal surgery. I had my takedown in June of 2009 at St Francis and just recently had surgery for a temporary ileo due to unexplained terrible pain in my j-pouch. They still don't know what was wrong, just that whatever it was the surgery fixed. I still have my j-pouch, its just temporarily by-passed for now. He also found an area in my intestine where there was a partial blockage due to fatty tissue. He removed that peice of intestine and it didn't cause trouble at all. Don't be scared about the possibility of more surgery. Your quality of life is whats most important, so do whats best for your health and the well being of your family. I just had a baby in April and I had my surgery to get healthy again for him. I was tired of being sick. Did your surgeon say you would have to go through steps 1 and 2 again, or can he just fix your j-pouch in one step? I was cut down the middle again for this operation and was out of the hospital in 3 days. Its only been a week and a half and I can already lift and care for my baby so don't worry, things usually go better than we think they will!

I saw my surgeon today because my incision from last week's surgery has been leaking and opened up after I got the staples out. I asked him what he thought caused all my pouch pain before the surgery and he said he doesn't know, maybe just pouch dysfunction due to a large pouch. He said when I am ready to think reversal in a year or so he will do a pouchagram to make sure my problem isn't a large pouch that is having trouble emptying all the way. He said if thats the problem he couldn't reconstruct my j-pouch to fix it, which I don't understand because I have seen other people on this forum mention getting their j-pouches reconstructed due to pouch dysfunction, and you said your surgeon could remove the redundancy on yours. Maybe if I have the same problem as you Tulsamom then he can remove the redundancy and I won't need this ileo forever. Do you have problems emptying properly due to the large pouch, or is it just obstructions?

I had Dr. Craig Johnson. He might be in the same group as your doctor.He didn't actually give me any details, just that if it continued to give me problems he could fix it. You know he's so charming and nice that I forget to ask follow-up questions. And his nurse doesn't appear to want to ask him questions for me when I call. So I feel pretty alone out here wondering what I might be in for.

As for complete emptying, I'd say that I usually have to go several times in a row to really empty. And I have had my share of obstructions and times with severe gas pains that are excruciating. Gas meds don't work because it's way down and in my pouch. So I hope I won't hear that they can't fix my pouch. But honestly, I am afraid that my rectal continence will become even worse with another surgery. And that really scares me. Maybe a smaller more normal pouch would let my stools be more formed and less likely to leak out even after I empty. I'm talking about leaking during intimate times. Not just everyday, thank goodness.

I hope you continue to recover in an uneventful way and enjoy your baby. And PM me if you want to get together here in town. I'd love to meet and chat.

Yikes, I know what you mean about the gas pains! I had so much excruciating pain in my pouch from gas I was on pain killers all the time. I was on morphine for pain 24/7 and entocort by the time I said enough is enough and went for a temporary ileo. I was so tired of having to take pills all the time to be "normal" enough to function. My gas pain was gone from the moment I woke up from surgery, and even though the surgery hurt like crazy it felt so good to not have the pelvic pain anymore. I used to be scared silly of surgery, but I have since given that fear to God. Surgery saved my life when I had UC and colon cancer, and I actually like hospitals now(I know I'm weird). I am considering going back to school to be a nurse after all this. I don't think another surgery would cause more incontincence if you continue the kegal exercises which I always forget to do. I had leakage daily and had to wear a pad all the time for it. I also would get terrible rectal yeast infections and was on diflucan all the time. I actually am preferring the ileostomy bag now compared to all the j-pouch crap I went through (no pun intended). I just pray about everything including surgery and if something doesn't "feel" right I don't do it. I felt totally right about this past operation and I am so glad I did it. It would be good to chat with someone locally who has an idea of what I have been through! I sometimes feel so alone with all this, especially when people tell me I am "so young" to go through it all (I'm 26), because mostly old people have ileostomys. People have no clue what they are talking about and no regard for others feelings when they say stuff like that. I may be young, but I survived, and I'm gonna live my life to the fullest anyway!

I'm so glad it was a good choice for you. To be out of pain is a biggy. Hey, I was 34 with an ileostomy. I actually liked it better than the torture that pooping had become. But the adhesives reacted so badly with my skin that it was an entirely new hell. If I have to go back, I hope they have invented something for people whose skin feels like it's burning with itch and where the skin blisters wherever there is adhesive. I couldn't go a whole day with a bag on. Still, it was better than UC.

HI tulsamom.

I have been told my pouch which is a W pouch, has stretched and become very large and floppy.
A W pouch is just as it looks, more limbs, shaped like a W out of my small intestine, rather than a J shaped pouch.
It was thought the W pouch, because it is larger than the J would give better control, and less trips to the toilet.
But almost immediately I have had problems with the pouch/emptying and killer GAS pains.
And now after having the pouch for 12 years, it is very large.
This makes emptying so difficult.
I have to take epsom salts every day to make my pouch empty.The salts drag all the fluid from my bowel into the pouch, which after an hour or so gives a strong urge to evacuate the bowel.
It is very painful and take several attempts before I feel empty and relieved of pain.
I have to lie on the floor on my stomach,(bed is not hard enough and wont work)and I put a very hard folded pillow under my stomach, and get into a position that looks like I am skydiving. This is the only way I can get rid of the gas. It wont come out sitting on the toilet, most likely because as the surgeon says, the pouch is so large and floppy, it folds over on itself.
So between lying on the floor and up and trying to defaecate on the loo, then back on the floor, and so on ...this takes a fair bit of time and it is quite distressing because of the pain.
Surgeon does not want to operate to make it smaller.
I have a sh!tload of adhesions, and have had 9 open surgeries, and no-one wants to go in there.

My surgeon has the attitude, that yes, it's inconvenient, but you look fine.
I feel it is more of a disability than an inconvenience as it prevents me leaving the house for more than a few hours. I can't lie on floors in public bathrooms or workplaces , which stops me working, and enjoying a 'normal' life.
I take a lot of crap for pain. I hate asking for it, you always feel the Dr's don't really believe you.
I have been taking oxynorm 10mg, and even that doesn't really help. When I have the gas pains or a full pouch or both that won't empty, the pain is similar to giving birth.
When I have a pouch full of S%&@# and it wont budge, I can hardly walk, and at times end up in hospital having to be emptied out under general anesthetic with morphine to help with the pain.
I have stopped eating all fruit and vegetables on advice from my surgeon.
I would say it has helped somewhat, but not nearly enough.

I know I have added my story on here a few times, boring the buggery out of some of you, but I can't shut-up about it.
This is the best place to vent.

If your surgeon is willing to operate and make it smaller, I would definitely consider that option if it was me.
All the best

Hi
I had problems with my first pouch (got it revised in London in 08). Prof Nichols there recommends using a Medina catheter (also called ileostomy catheter) to help empty the pouch. Just use it to irrigate the pouch. Great for getting of gas.
Company Astra Tech AB, Po BOX 14, SE4321 Molndal, Sweden Ph +46317763000

V-U, Wow, that's rough. I hope you finally get some resolution with your situation. My thoughts and prayers are with you.

W-W, When you had the revision did you have to have an ostomy for 2 months and then a take down?

Here I am again a year later dealing with the same problem. For the most part, the last year was fine. But I'm having the feelings of partial obstruction and super painful gas again. Also a general yucky feeling in my tummy so I don't want to do anything.

I'm just wondering if there is something non surgical that I can do that will keep the giant pouch happy. Sometimes I can't eat cause I feel to sick and then I'm super hungry and eat and feel worse. Anybody getting along with their redundant pouch?

I agree with winter wish, I think a catheter or an enema is your best bet.

Sue

Ooo... that sounds yucky and scary. I was hoping for an answer like 'eat smaller meals' or 'lay on your tummy whenever you can.'

I have a hard time with just putting on barrier cream when I have butt burn. I'm a bit squemish and don't like messing about down there. Plus, I thought we were never to put anything inside for fear of damaging something.

On the other hand, I've dealt with all kinds of dirty nasty back when I had UC. And surgery has all kinds of yuck involved. Just hoping for a simple solution to keep me out of surgery. Thanks for the suggestion.

Anyone else who has a streched out giant pouch want to share what they've done to keep out from under the knife?