Can anybody relate? I had my Jpouch surgery in two steps, with the takedown in March 2006. I was so sick in between the two surgeries I was hospitalized for 5 weeks in between. I was also in hospital twice this summer due to extreme abdominal pain and nausea. Now I continue to have abdominal pain, cramping, urgency, and last night had a leakage!
I hope someone can show me some hope! I do think maybe I have pouchitis and started Xifaxan two days ago.
Thanks.

Well, I went four years with chronic cuffitis before it was treated. I'm fine now (into my 12th year).

Jan

Hi Alicat,
I two was very sick between surgeries. I was hospitalized 4 times for dehydration and was drinking as much as I possibly could. About six months after 2nd part was back in hospital for a week with a blockage. Had to have NG tube and all. I don't think I have ever really fully recovered from it all. I am now suffering with chronic pouchitus. My symtoms are exactley the same as you when I am really sick. Leakage,Urgency,Pain,raw behind,and Nausia. Good luck. Don't know if I helped just know your pain.
Marie

I was hospitalized for 30 days after my takedown, had many complications, including a third surgery. Missed 3 months of work and didn't feel well at all until a full year and a half after that. Then it finally got better to where I feel I can live like this, even though I've had pouchitis ever since (four years). Most people may do well after this procedure, but not all.

They sure do not I was in hositol for 2 months after step 1 coma, infections, etc , etc blood transfushions u name it. Was still sick they had setp2 longer than planned but still was sick and now 8 months later still sick.\


Prolly won't go to work for a couple of years went from 170lbs to 398lbs in hositol now 125lbs and full of nasty marks from being so filled with water from coma. We are here for each other and some of the doctors just go on to there next case while we struggle trying to live.

I been married 5 yrs and been sick 4yrs and want to have kids this is not fair to my wife but she is hanging in there.. so I know how you feel about being sick I hope the best for you and everyone we deserve a better life

Good luck get better

Thanks everyone for your responses!!!!
My surgeon's office is over 1 1/2 hours away and I cannot find someone in my city that knows very much about the J Pouch.
Although it is bad that others have my same problem, I definitely feel more validated because of reading your posts.
It is hard to hang in there sometimes! I feel like you guys had almost identical problems as mine, I too had many blood transfusions, NG tube due to blockage, etc.
I didn't sign up for this when I agreed to the surgery! I though life would be free and easy afterwards!
Thanks for listening!

One idea would be to ask your surgeon if they can recommend a family doctor that has experience with the jpouch. I was lucky enough to get a doctor who has a pouch. He didn't admit that to me, but a local surgeon told me to use him. He always refers to a friend of his with a similar condition when we discuss it.

For the feeling bad, I try to rehydrate with gatorade and water. I wasn't that sick between my surgeries and actually went to college, doing my takedown over spring break between trimesters. In hindsight going back to college 7 days after getting out of the hospital from the pouch construction surgery was a questionable move. I was barely strong enough to walk but did it.

Having a pouch isn't the holy grail, but I'd still take it over the bag any day.

Consider using a probiotic too. That may help even between surgeries.

Ali I wished your doctor would have done your procedure in 3 steps with some more time in between since you where sick....I was sick like you and after my first surgery to have my colon removed there was a 7 month break before she performed the second one to create the jpouch and 3 months after that to have the takedown and didnt like having the bag for ten months where most people go through the stages in 4 to 6 months but hopefully if this pouch works out with little complications the exra bag time will be worth it....you can still win this thing just dont give up hope and we all have been there

Jeff