Advice needed: J Pouch fistula

If nothing has been working up to this point it seems that throwing yet something else at the symptoms is counterproductive. If you have pouchitis you should be on antibiotics. If you have cuffitis you should be on other drugs. This could be just the normal post-surgical progression. You could also try a fiber supplement like Metamucil wafers, Benefiber or Citracel.

Maybe you could ask your doctor where he would suggest you could optain tincture of opium.

I think you need to see your doctor so that he can determine what is behind the new symptoms.

kathy

One tip is to lay flat on your stomach when trying to pass some gas in the bathroom. When things are liquidy it definitely helps to get the gas to come out. Good luck!

I had that same issue yesterday and today about passing gas with surprises - not fun. I took some metamucil this afternoon and it seemed better. I have no idea if that's what helped. It's so hard to tell with this recovery. I had my takedown on the same day you did. It has been a long, difficult journey but appreciate the days when I feel well. Hang in there.

Christine

The tinture of opium did not help all that much with my boyfriends output. But usually you can get it filled through a pharmacy that is within a hospital. Sometimes the doctors don't write the dosaging the correct way so maybe work w the pharmacist.

Due to my partner high output OSTOMY and jpouch when he had it, he was ha great success with a medication called octreotide. It actually is a shot that is used more within the oncology field but wasnthe only thing that slowed down his output. I would suggest usually all the Benefiber opium regime and do it consistently do rule in and out what and when the meds are helping.

Remember alot of these specialists dont really follow the aftermath or are ontop
Of responding to output issues so make them
Do there research and let them
Know if you can't get access to a medication due to
Challenges finding it or insurance. They can take a min to help figure out the logistics

Good luck danielle

Thank you for the responses so far.

In terms of pouchitis/cuffitis, from what I was told that diagnosis would be likely if I had bleeding and a fever as well, which I don't.

My doctor is an hour away so he doesn't have much insight into local pharmacies so I made the calls.

I think I'll go the fiber route, I'd imagine it could potentially help, I wasn't sure if it would be too soon to start that and I neglected to ask.

Unfortunately, I have an open wound at the stoma site so laying on my stomach isn't comfortable.

Does anyone know of either a specific link or discussion on here about what specific foods or food qualities to eat and avoid during these stages? I received a pamphlet from the hospital but it is not too specific.

Thanks again, I look forward to using this site and eventually contributing.

Fever is not common in either pouchitis or cuffitis, but can occur. Increased output/frequency is typical for both and bleeding for cuffitis.

So don't think you can't have pouchitis without fever and bleeding. You are still early in takedown too, so this just may be normal adaptation that can take 6-12 months.

Jan

I had great success with tincture of opium to slow down transit anad reduce my highboutput ileostomy. My local cvs generally doesnt have it in stock but they order it and i usually have it within a few days. Some good foods to reduce output are peanut buttr, oatmeal, white rice, potatoes, applesauce. Also benefiber, different type of fiber than the more popular metamucil, but worked tons better for me. And make sure you take immodium at least half hour before each meal.lomotil did nothing for me, but if i took eight immodium a day at proper timing it helped. Also look up an "anti-dumping" diet. Its generally a diet,eating methodology for gastric bypass patients. But one of my docs put me on it to reduce my high output ileo and it works like a champ.

Formulation pharmacies - I think that's what they are called and there are not to many of them. They are not in the big chains at all. Maybe you can call your usual pharmacy to see which pharmacy in your area mixes the formulated medications. This is the kind of medication, I think, that they make according to a formula in small quantities. I had to get medication for my son from one of those when he was little.

My surgeon wrote out a schedule for how much Imodium and fiber to take in the beginning and said to adjust it as needed. As you get better you won't need as much. My Internist suggested fiber was better than imodium in the long run. I can't stand mixing stuff up to drink so I get the generic metamucil caplets and take them, just like swallowing a pill. 5 pills generally equal one serving. Plus we aren't to drink as much water with the fiber as it is to bulk up your stool.

All I basically do is dust and laundry too. I'm sorry but got a little chuckle about that. I only manage to cook dinner 1-2 times a week. My retired husband does all the grocery shopping and everything else around the house. Talk about feeling guilty!

Pasta is the best bulk up food for me. I lost 75 pounds from the beginning of my flare until about a year after take down. I had it to loose because it was prednisone weight.

I can not believe no one told you about foods or anything. I'm glad you found this site.

It's only been a month since your take down and I was still miserable. I think the doctors would tell you it's "normal" at this stage of the game. I got so I hated that word "normal".

For passing gas you can also get on your hands and knees and then lower your head - thus sticking your fanny up in the air. Gas rises - I know it sounds weird but it helps me.

quote:

Formulation pharmacies - I think that's what they are called

Are they also called compounding pharmacies?

kathy

I had made this thread a while ago. My frequency and consistency had gotten better then took a turn a month or so ago.

I had an MRI done and an infection was found due to fistula in my J Pouch. They are going to set up a PICC line & antibiotics but he said the fistulas likely won't heal and it will be an recurring thing.

I'd imagine someone here has experienced something similar and I'm curious to know what was done and how you've been since.

Thanks.

Ooh, a fistula is bad news indeed. If you do a search, you'll find lots of threads about it. I am afraid this is going to be a rather long, drawn out affair. Sorry about that. I hope the IV antibiotics help shrink it. Does it connect to another organ, or is it more of a blind end thing? If so, that is usually called a sinus tract.

Jan