Recurrent hemorrhage due to pouch ulcers.

I have chronic pouchitis w ulcers on scope but at this time no active bleeding.
I am on antibiotics continually and at this time the only symptoms I have are some nighttime leakage at time, lower tsilbone pain that is pretty constant and done lower left pelvic discomfort. I think if you are showing chronic pouchitis on scopes and are having bleeding issues your GI should put you on some long term maintenance antibiotics. Have you been offered this option? My surgeon says some people claim they feel good and when he scopes them he finds ulcers in their pouch, so you can be somewhat asymptomatic w pouchitis, but bleeding ulcers are something I would want to treat, especially if you have no other symptoms until you have a situation like you just described.

The ulcers themselves are the sign of chronic pouchitis. Biopsies do not show infection unless they find evidence for a specific pathogen. You do not need infection or widespread inflammation for a pouchitis diagnosis. With the diagnosis of chronic, the treatment focus changes to maintenance preventative treatment that is ongoing. This is especially important if you do not experience symptoms until you hemorrhage.

Basically, this means long term antibiotics. You can rotate them or do pulse treatments to avoid resistance.

Jan

For some reason my GI feels like long term antibiotics are not a good idea. Rifaxamine (sp?) is the only one I tolerated well. Cipro made my arthritis worse and Flagyl made me feel like I had motion sickness constantly. Is there anything else? Is it common for the ulcers to hemorrhage like mine do?

Kereen, if your GI has diagnosed chronic pouchitis, but isn't willing or able to treat it (for whatever reason), you may need a different doctor. What on earth is his treatment plan?

You may be able to help a bit with reducing carbohydrates, and aggressive use of probiotics (e.g. VSL #3 DS), but these usually supplement (but don't replace) antibiotics. There are other antibiotics you might tolerate better (e.g. Augmentin, doxycycline, Tindamax), and second line approaches if none of these do the trick. Lower doses in combination might reduce or eliminate side effects. Good luck!

Scott, I really don't know what his treatment plan is. I was discharged from hospital yesterday and told to make an office appt in two weeks. I was reading about the low carb diet on this site and I will definitely give it a try. He ordered a promethius test but I've had one in the past (10 years) and it was negative. I spoke to my GI's PA and she said he felt long term antibiotics were not resonable and he did not prescribe them to me when I was discharged. I can live with the frequent trips to the bathroom, bloating, diarrhea. Having trouble living with the hemorrhages, transfusions and ICU visits.

jan what is pulse treatment

There are only a few ways to alter the flora of the gut. One is antibiotics. Certainly, if you have intolerable side effects, you can't take antibiotics. Rifaximin is safe for long term use, but is expensive. Still, you could pulse, with a week on and a week off (or two weeks on, two weeks off, etc.) to keep things on track. This helps avoid constant exposure to the antibiotic. Probiotics are another option, but effectiveness is hit and miss. But, they are safe and worth experimenting with. Reducing food for the bacteria is another good option that is perfectly safe. This is the carb restrictive diet.

If you get those constant symptoms under control, you may be able to sense when things are flaring, by an uptick in diarrhea/frequency, and get on antibiotics before a hemorrhage occurs.

Another option you may want to consider is a second opinion. Obviously, the past treatment plan has not been very proactive. My concern is that this will become quite life threatening. I would not settle for the "wait for the next hemorrhage" approach. There is no requirement to stay with one doctor or clinic. You may have to travel, but...

Jan

Many of us are on long-term antibiotics for quality of life reasons. Life-threatening hemorrhages are in another class altogether. I don't know what the doctor's exact objection is to long-term antibiotics (unless you really have unacceptable side-effects to every single one), but he doesn't seem to be current with the published information about pouchitis, imperfect as it is.

Does chronic pouchitis cause arthritis symptoms to worsen? I generally have more complaints about my joints than I do my gut. I'm on a maintenance dose of pred, plaquenil and just started humira 5 weeks ago. If I could take NSAIDS I think I wouldn't need all of these other meds. I'm starting the low FODMAP diet today and I will start on probiotics again. I've tried them in the past and haven't noticed huge improvements but I'll give it a try again. When I see my GI in two weeks I think I'll ask for a consult to see an IBD specialist in Seattle.

It can, depending on what type of arthritis you have. The ordinary IBD related arthritis worsens with bowel flares. The axial type (enteropathic arthritis as a form of spondylitis) follows its own course independent of the bowel disease. I did well with NSAIDs until I could not take them due to liver inflammation and pouchitis (but I still take short two week courses during arthritis flare). I am much more stable since starting biologics nearly a decade ago. It can take up to 3 months for them to be fully effective. On a side note, my GI says my pouch never looked better since starting Simponi a few years ago.

You did not mention these other meds you are on before. Perhaps that is the reason no antibiotics for now?

I did not have chronic ulcers but did have chronic cuffitis and recurring pouchitis. I seldom take antibiotics now. I hope the Humira takes care of your issues on all fronts.

Jan /

quote:

Jan /

Thanks Jan,

I understand you're saying that Humira is a treatment for pouchitis? Is pouchitis another form of IBD or is it a bacterial flora problem? I'm trying to wrap my head around what's going on with my pouch and my joints. I don't know what kind of arthritis I have. For years my rheumy said it was lupus but now he's leaning toward IBD arthritis. I do think he said enteropathic arthritis but I'm not sure. Thank you for you help, I'm starting to understand his thinking a little bit now.

The current thinking about pouchitis is that it's a bacterial flora problem (or at least closely tied to one). If UC continues after pouch construction it's called cuffitis, and is limited to the little bit of rectum that's left behind (the rectal "cuff") - you *don't* seem to have that. If it's Crohn's, though, the IBD can develop in the pouch itself. That's why he ordered the Prometheus test - it's an unreliable test, but it could help puzzle out whether these ulcers are from Crohn's, even though they didn't look like it to him.

You've got a complex set of problems, unfortunately, and it seems like the diagnosis is tricky. Perhaps in two weeks he'll have consulted with colleagues, read some papers, or at least given this more thought. Maybe he's expecting pathology results from biopsies he took. One way to approach this when the diagnosis is uncertain is to choose one of the possibilities and try treating it, to see if it works. The first choice can be made based on likelihood, or even based on the better tolerated treatment.

Good luck!

My understanding is that pouchitis is complex, but the basic problem is bacteria related; either overgrowth, imbalance, or an inflammatory response to the bacteria. It usually is not an infection.

Unless it is associated with structural defects that prevent adequate emptying or ischemia (reduced blood flow), it is somehow related to IBD. This is evidenced by the fact that those with a j-pouch for reasons unrelated to IBD seldom get pouchitis. But, this is distinct from UC or Crohn's and may be a new type of IBD. Crohn's of the ileal pouch does occur though.

Humira is not approved for pouchitis treatment, but it is for Crohn's and UC, RA, and spondylitis. I was on it for some years for my enteropathic arthritis. It worked well, but I hated the way it stings, so switched to Simponi once it was approved. No stinging and only once a month injections. I had to take Humira weekly (those with IBD may need heavier dosing).

I thought you might have had a lupus diagnosis, since I have not seen Plaquenil used otherwise. Here is a link for more information about enteropathic arthritis (which is my diagnosis): http://www.spondylitis.org/about/ibd.aspx

Jan

jan can you explain what is biologics?

Biologics are a class of drugs known as anti-TNF drugs. They include Remicade, Humira, Simponi, Cimzia, and some new ones in the pipeline.

Jan

 . . .so here once again I thought I was a ok and this year on my surveillance scope they fine my Jpouch has an ulcer.  No symptoms.  So they took me off of celebrex. I have been on it for at least 15 years.  I guess when biopsies come back they know whether it is bacterial? and I would need antibiotics or it is imflamatory and they do something else?   I have done low carb diet in past, lost 30 pounds, felt great but ended up with a small bowel obstruction. That kinda of derailed me and I put the weight back on.  So back to low carb again I guess.  I love my Jpouch and I want it to be in top shape form again!!!  Do you think dental health could play a role? I have an absolute fear of dentists after a very bad experience.  I just don't trust and I need to come to terms with this. I confess,  I brush but don't floss like I should. I will reform  LOL  Bless U all.

 

No to dental health. I'm at the dentist every three months for cleanings and then whatever dental maintance I need, ie, cavities, crowns, etc etc I floss throughout the day as well as brush. Don't even ask what my bills r and I have no insurance. Bad teeth, another lovely thing passed down to me. I also have had very bad experiences with dentist. Keep looking. I had a great one for over 20 years till he retired. The person whom took over was a disaster, but now I've found a dentist whom is the best! I travel a half hour to see him.

I have chronic pouchitis since day one 15 years ago. 

If you've been on Celebrex for years I'd guess it's the most likely cause of your ulcer.

Kereen, my daughter is in the hospital for the same condition. Ulcer hemorrhage, transfusions, clipped, cauterized, clamped K-pouch ulcer. Doctor will not prescribe antibiotics, says ulcer is not due to bacteria. Panicked about what plan will be to stay alive and out of hospital. What has been your final course?