Hello.

I am a mother of a son who just had the jpouch done in one surgery on 06-26-15. So we are a little over 2months out and having a hard time. Many many bathroom visits. I know they said it would be a lot but he cant even get up to walk around without going. Even when we are having dinner it seems two to three bites in he has to go. Just wanted to know if anyone had it done in one step and how long till you felt good. He also has a lot of stomach pain before he goes. Thanks so much

Original Post

I had a 1-step in 1995. It was rough for about 6 months, but I had a lot of early complications (bowel obstruction, deep vein thrombosis, wound infection, presacral abscess). But those were sorted out within the first couple of months.

 

I had a high frequency the first 3-4 months and was onthe maximum dose of Imodium. Eating anything stimulated a bowel movement. But, I was never incontinent. Around 4 months out I was able to take a 6 hour road trip, stopping only every couple of hours.

 

It gets better.

 

Jan

I had a good result with a 1-step in 2002. I don't recall the exact frequency, but I was in fine shape to fly home after three or four weeks, and return to (desk) work in six weeks. I did use Lomotil quite regularly in the beginning, as well as Metamucil, and I had good success with trying to "hold it in" for longer and longer intervals to "stretch the pouch." How old is your son? That can affect what approaches are practical.

Scott F,

My son is 14 and had UC for we think about since he was 9. It took awhile for him to get diagnosed. While we were trying to find out what was wrong with his stomach we found out that he had ITP and had to be hospitalized.(another auto immune disease) He does take the lomotil and it helps sometimes but they tell him not to take all the time and no more than 25mg a day. They say it can be addicting and could constipate him. He takes the bulking fiber pills, eats cheerios,oats but mostly watery stool. He tries really hard to hold it. At fist he was good(the fist post op appointment doing good could hold it )but at our second post op( not doing so good and he has a hard time holding and pain, seems like not matter what he eats he is in bathroom) he is scheduled  for  I guess a colonoscopy to check pouch. All his blood work is good. Everyone said to give it time and it will get better.

Hi
Something in your last post struck a cord with me. You said your son eats Cheerios. Cheerios absolutely kill me. It's one of the few foods I cannot eat. They have me In the bathroom all day. Different foods effect different people but if he's eating Cheerios daily, they could be effecting him negatively like they do me. Just a thought.

I'm glad he's scheduled for a scope, worriedmom. He can't have a "colonoscopy," because he has no colon. The procedure is called a pouchoscopy. It's sometimes scheduled as a "flexible sigmoidoscopy" (flex sig), because the staff doesn't know what a pouchoscopy is, but he doesn't have a sigmoid colon any more, either. Good luck with the Cheerios elimination diet!

I have had the Jpouch surgery all in one and it's been a nightmare. So bad that I feel like I have UC again. Pain, going to the bathroom 15-20 times a day. Not having a good sleep. I take a tylenol 3 before I go to sleep just for it to slow down and so I can sleep a few hours. I've had pouchitis that won't let up, and now all weekend have been in bed feeling lousy and with a fever. I see my surgeon on Friday. My surgery was June 6/15.

Hello all.
I was not eating cherrios but a different cereal and didn't know it at the time but it was messing me up bad.  Finally figured that one out.
Two months is not long after surgery.  When I was two months out I was still very sick.... Sore... In bad shape.
I had lapro and two open surgeries. 
It took me forever to get to feeling ok. 
But my situation was different and everyone's is so you can't compare one to another.  You can....  to see if you need things checked by a Dr... And get opinions. 
It took nine months for me after surgery to just get back to work.  I had my surgery in October of 13...thought I would be back to work by February of 14.
No way.  It was June of 14 before I went back and was still weak. 
I still have problems.  No infections or anything.   Just won't work right.
I hope you get it figured out.  I know it's tough. But you have to be patient and give it time to work.  Also high foods to eat and avoid.
Good luck to you.

Hi Worriedmom,

I had a CT scan a few weeks after i got out of the hospital. I Hope your son feels better. I have an appt with my surgeon today and I am going to talk to him about a reversal. I am supposed to back to work in Oct. but there is no way. My sick benefits run out in Oct, so I don't know what I am going to do. I have two girls to support. Life sucks sometimes. LEt me know how your son is doing. It's a rough things for a child to have to go through, and I am sorry he is experiencing this.

Hi, WorriedMom,
I am also a worried mom. My son was diagnosed with UC at age 13. At first sulfasalazine worked. Then about 1 1/2 yrs later he started to flare. Nothing worked- steroids, remicade, suppositories, antibiotics, diets etc, and 2 hospitalizations. He got TPN in a PICC line, then a laproscopic colectomy and ileostomy last November (age 15). At that point he still had his stapled rectal pouch. Nine days after his colectomy he needed emergency surgery for a complete small bowel obstruction. At that point, we decided with his doctors to wait 8 months before getting the J pouch. He was so weak, underweight, and malnourished. He had his rectum removed and the J pouch June 24 of this year (16 yrs old). It was one step (2 if you count the colectomy). No temporary loop ileostomy.
He is going to the bathroom about 6 times/day, but still has a lot of discomfort before going. Eating stimulates him to go. He also sees blood about 1/3 of the time. He's not been able to gain weight (5'8.5", 111 lb), and doesn't have a very large appetite. He's in school full days (11th grade), but still trying to complete 10th grade with tutors. He's also tired all the time-- he's up at least once in the middle of the night to go.
I hope your son improves soon! Best wishes!
Nan

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