Daytime leakage/Chronic Urinary Tract Infections

Wanted to share an update on this subject. Just got a call from the Gastroenterologist...never a good thing on a Sunday, with bad news in regards to the pouchoscopy. Apparently I have inflammation in the terminal ileum, pouch, and rectal cuff, which is indicative of Crohn's really not what I wanted to hear. This is, in her opinion, the reason for the leakage issue though. She's recommending I start Humira soon.

Sorry to change the post topic, any advice from those with this dx is appreciated.

Pam

If antibiotics control the symptoms, you might try staying on them (with or without rotating them). Many folks have antibiotic-dependent pouchitis. It might be worth a try, in spite of the suggestion that it's Crohns.

I have inflammation in the pouch and the lower terminal ileum above the J Pouch inlet, but I do not hold a Crohn's diagnosis. The reason for this is that CT and MRI Enterographies confirmed my bowel above the J Pouch inlet is narrowed. The narrowing causes fecal stasis, and the fecal stasis has caused the inflammation in the ileum.

My symptoms seem to be controlled with rotating antibiotics. I went on Entocort in an effort to reduce the inflammation that is causing the bowel to be narrowed above the pouch inlet. This seems to have helped.

Regarding the UTIs, drink cranberry juice. Cranberry juice flushes bacteria from the urinary tract.

I am scheduled for an MRE/MRI this Thursday to look for any further inflammation in the ileum. I also have an appointment with the GI on Friday, so I will be asking more questions about the Crohn's dx. When I talked to her on the phone she said it definitely looked like Crohn's, and she was very concerned the possibility of cancer developing in the cuff, due to inflammation, and the fact that I had a colectomy due to low-grade dysplasia.

quote:

she was very concerned the possibility of cancer developing in the cuff, due to inflammation, and the fact that I had a colectomy due to low-grade dysplasia.

It's a valid concern, and I also hold a LGD diagnosis pre-colectomy, but strangely, my cuff has never been much of a problem. The inflammation has all been in the pouch and in the neoterminal ileum above the pouch where the bowel is narrowed.

My prayers are with you Pam, you and I have been on this journey from day one, you guided me through my surgeries because you had yours first. You have always been there for me whenever I have had a question or concern and I want to be here for you also anyway I can.

Thanks for the sharing/input, it is a very difficult bit of news to take in. I never thought twice about losing my colon to avoid having cancer, now it seems I'm not a whole lot better off.

Pam

Pam,

Truth be told, all of us have the same concerns. My GI specialist told me even microscopic inflammation in the cuff is a concern and those who had LGD with the colon should get scoped and biopsied annually.

Regarding the MRI Enterography, I posted in detail about my experience with it here:

http://j-pouch.org/eve/forums/...817024226#3817024226

Pam I'm sorry you are having all of these problems. I have chronic cuffitis and it is not a sign of crohns. She's probably referring to the pouchitis. I hope this can all be cleared up with antibiotics for pouchitis and Canasa suppositories for cuffitis.

Your topic title caught my eye as I currently am being treated for a UTI. Since I'm on Norco daily I didn't catch it until it really got bad. I had one shortly after take down and went to the ER in bad pain that turned out to be a UTI. I was embarrased as I'd had them before and never had that pain before. They told me it was a pretty common ER complaint. That was 2 years ago.

I've been on antibiotics a lot for c-diff infections and think I might have had UTI's at the same time as Flagyl can be used to treat them as well.

Please ask them to look for potential R/V fistula's. I know I'm all over the board here but I've also discovered a place in my vajaja that bleeds at times and then scabs up. It backs up to the j-pouch side. I can not tell what is going on further up inside. In other words you could have a tract or whatever they call it from somewhere in your pouch or intestines to your urinary tract or another area.

I had UC in my rectum from the first diagnosis in 1997. It was higher up but it was there. I don't understand why I wasn't consulted about the surgery that left part of my rectum at my cuff before my surgery. I don't think it was considered.

Where was your LGD at? If it wasn't at your rectum I think you can deal with the cuffitis with the Canasa suppositories. You live in Florida so I hope you go to Mayo's or CC.

I hope you find out some good choices Thursday.

I used to get chronic UTIs. I was treated for them for years until finally being diagnosed with Interstitial Cystitis. It is a pretty common bladder condition. Maybe get a bladder cystoscopy to check for inflammation in it.

I hope all went well today and you have a good meeting with your doctor tomorrow.

Thanks Vannessavy. I'm thinking these are more than UTI's. I've taked Flagyl so much for c-diff it's probably been helping the UTIs at the same time and they are all contributing to my pain.


I have not gone this far to give up now.....

Most Uros and doctors don't know about IC. Well now I think it is more common, I mention it at ERs and they always know what I am talking about.

IC is like one big chronic UTI. Everyone has different symptoms. Antibiotics don't do anything for it. It is diet related that gets it under control along with other meds. My IC is more spasmodic than diet related. Cranberry is actually very bad for bladder and UTIs since it turns the urine acidic. Cranberry is mainly only good if it has reached the point your kidneys are damaged. But if you look into IC you might see if you think it is something you might have. A lot of websites are out there, ICN, ICA, etc.

I never had UTIs everyone kept saying I did. On a bad day I think I pissed 200 times. I wold pee clear liqiuid (looked like straight water) If I ate a cranberry in a salad. Horrible flares. I remember one time I had gallons of clear urine come out of me and I drank half a soda and some cranberries.

I stay away from those suckers big time now. :-)

Vanessavy, thanks for all of the information. I have had nothing that resembles all the hell you've been through. You are a survivor girl

Thanks everyone for the great input. Sorry I haven't checked in for a few days...life has been on quite a roller coaster! In addition to being dx with Crohn's this week, my nephrologist is concerned about a possible recurrence of my autoimmune kidney disease (IGA Nephropathy) and lab tests are pending. Also dealing with getting started on Humira (yes, they're quite sure we're dealing with Crohn's).

On another note though, I've been put on a 3 month daily dose of Keflex and will go back to the Uro dr at the end of the 3 months for re-evaluation.

Vanessavy, I have thought of the IC possibility as I have an aunt with that. If the UTIs don't improve, I will ask for a scope to check it out. Only thing is, they always find bacteria. Is that present with IC??

Thanks again everyone, you're the best!

TE Marie, I forgot to mention that I do indeed live in North Florida, but I go to Shands at the University of Florida, Gainesville. The doctors there are awesome and some of the best in the country. I know that CC and Mayo are great as well, Gainesville is just more convenient to where I live, and insurance cooperates nicely with Shands at UF.

I'm sorry about the crohn's diagnosis Pam, but at least they are pealing back the onion layers an discovering what is causing the problems. It sounds like you have the best of care. That's what happens when you live in a state with a large population. My entire state has the population of one county in Florida! It's great that Mayo's in Rochester is less than 4 hours away for me.

I hope all stabalizes with your kidneys. I'm worried about UTI's as well.

Thanks TE Marie, and yes, I'm REALLY thankful to have access to good doctors and insurance to pay for it all. The doctors are on the look out for fistulas, just haven't (luckily) found one yet. The UTI situation is frustrating and uncomfortable, so I hope you get some relief as well.