How Serious is the inflammation. Do you also have ulcers? I always have inflammation in my pouch despite antibiotics. I guess the question would be just how serious is the inflammation before deciding on stronger medications. Almost everybody has some level of inflammation in Their pouch and if you're asymptomatic I'm not sure why the doctor is suggesting stronger medications

A section of the pouch is pretty bad with ulcers and appears to look more like Crohn's. In the past I had a fistula and stricture problems, I think my Dr. is thinking that I am destined for more trouble along those lines and that I will eventually run into steroid side effects from the entocort. To me it is a risk/reward play, I am not too familiar with the immunosuppressants, they were not offered to me 20 years back when I was fighting UC.

Did they diagnose you with Crohn's when you had the fistula and stricture? Maybe you can try 6mp first as this is the lower level immunosuppressant.
What about other antibiotics like cipro or augmentin with ibd drugs like pentasa as an alternative. I guess if your diagnosis is leaning towards Crohn's the other med you mentioned may make more sense than these options. Many people have been on immune system modulators on this board so hopefully they can add their experience.

I have never tried Imuran, 6-MP or methotrexate, but I can speak about the biologics. I have been taking those since early 2006 and have not had any side effects. Some people have issues with liver inflammation, lupus syndrome, bone marrow suppression, etc., but most do not.

I have taken Enbrel, Humira, and Simponi. The only complaint I have had is that Humira would sting during injection (Enbrel and Simponi do not). I did not try Remicade, and that is the one that is most associated with allergic reactions during infusion.

I take them for my enteropathic arthritis, but they do help keep my pouch in good shape. It was not until I started them that my scopes have been consistently very good. I do not have a Crohn's diagnosis, just UC.

Jan

For background I was on Cipro for a couple of years initially it worked great, but I started to have tendon/joint troubles. In the past biopsies have been inconclusive on whether the pouch inflammation was UC or Chrohn's, recent scope leans more towards Chrohn's. Will likely try the low-level immunosuppressant, can always stop taking it if it doesn't work and try something else.
Some of the stories people post on the web about these drugs just scare me a bit. Thanks for the responses. John - Boston, MA

John
You sound like me. I have been on antibiotics chronically for two years since my takedown with cipro for over six months. My muscles and joints ache terribly all the time and I cannot seem to function without an antibiotic. Recent scope came back with chronic enteritis in my pouch but no one is telling me Crohn's. I have had constant problems since takedown with ongoing cuffitis and pouchitis and now the debilitating joint and muscle pain. Exactly what do they have to see to diagnose Crohn's or go most if us with chronic pouchitis eventually end up with that diagnosis? I think if your current treatment is not getting the ulcers in pouch under control it is probably time to try biologics. I agree as I would be frightened and in my case in the 25 years I had UC I never took anything stronger than sulfasalazine or prednisone and most of us agree to this surgery to hopefully get off drugs

I tried Imuran many years ago to treat UC and my liver chemistries went haywire on blood tests and I was pulled off of it within a month. I have heard that 6MP is like the modern, designer version of Imuran with possibly not as harsh side effects.

I discussed the future possibility of going on some biologic drug with my primary care physician when I had my annual physical on Thursday. He mentioned to me that the long term side effect of being on biologics is a risk of hematological cancers (lymphomas and leukemias). However in my case I seem to have had short term side effects from Imuran and more recently from Entocort which is a corticosteroid that has immunosuppressant properties like the biologics. I am frankly scared to be taking some of these drugs. I have been on rotating antibiotics for 18 years and that has mostly gotten the job done, although it has not eliminated the inflammation. We shall see how the low carb/low sugar diet has helped with my next scope already scheduled on June 21.

Ct
Please report back your results. I wish we had more options other than resorting to biologics.

I think it is important to put the actual risks associated with biologics in perspective. Most of he reports that people find scary, lymphoma, are associated with rheumatoid arthritis, which has a higher risk anyway. This long term study, of Humira showed cancer incidence to be essentially the same as the general population.
http://www.ncbi.nlm.nih.gov/m/...m%20risks%20lymphoma

For me, the risk of NOT treating far outweighed any risk of my treatment. Of course, each of us need to weigh our own risk tolerance. You have to be able to sleep at night.

Jan

I have been lucky that the entocort has not compromised my immune system. I do seem to need some type of drug to keep things quiet in the pouch. I am fairly young and active it might be a good time to give another drug type a shot. I will be glad to share results.

I was really scared to start the 6mp at first and have now been on it for a few years and no sides effects. Just make sure to get your blood checked regularly. Good luck with whatever you choose to do.

After 2 years with chronic pouchitis, the last 18 months with rotating antibiotics and Entocort, and even at max doses, symptoms becoming very unmanageable, we decided it was time to try something else. Doc recommended Immuran AND a Biologic like Remicade/Humira, but said if I WANTED to just try the Immuran as an intermediate step, I could. I have been on it for 3 months (and also at max doses of antibiotics and Entocort). I will be starting to taper the Entocort off to see how the Immuran does alone now.

The risks of the Immuran are worrisome, although increased skin cancer risks are for benign cancers, and the increased lymphoma risk is still very minimal-something like a 1 in 10,000 chance vs a 1 in 2,500 chance? WAY less than the risk of dying in a car accident, and I drive every day. I took birth control pills for almost 20 years, never paying much attention to the increased risk of stoke I had being on those...Ultimately, I felt that if I had my colon, I would have "tried everything" before undergoing surgery, and now that the only alternative is going to an ostomy, I am willing/wanting to "try everything" before I will feel good about making that decision.

So far, I feel better than I have in 2 years. In fact now that I am sleeping through the night again, and my # of accidents has gone way down, I am only now starting to realize how sick and misserable I actually was. SOmetimes you have to feel godd again to realize how bad off you truely were.

My scopes and diagnositcs don't show anything that would suggest I actually have "Crohn's" but my doc explained there seem to be several "types" of pouchitis, and since antibiotics didn't work, the next step is to treat it as if it were like "Crohn's of the pouch". I have to try hard not to worry that means I could someday experience crohn's throughout my digestive system, but either way, I am happy that at least for now, something seems to be working to give me relief.

Here is my update on my Imuran experience if anyone is interested. Been taking it since last July. Started slowly with two 50mg pills a day, felt pretty queasy for the first few months, now I tend to take it after meals and before bed and it is not longer a problem. So far my bloodwork has been fine, I seem to tolerate it ok in that respect. I am up to 200mg these days - I think dose is based on your size, I am 6ft 200lbs. I have been able to wean off of entocort. My only complaint is fatigue, not sure if it is a side effect of the drug, the long Boston winter, or due to my insides healing up a bit. I have seen a lot improvement of my symptoms, much less leakage and less bathroom trips, etc. Hoping that the fatigue gets better, planning to stick with the drug for a while. Thanks for reading.

Thank you for this update. I am thinking about asking my GI about 6 mp. My pouchitis is not horrible according to my last report and is in the lower distal pouch, but I get miserable symptoms from it when active (which is always is without antibiotics). At the same time, the anastomosis closes up and everything becomes just so painful. It is fairly well controlled by cipro for the most part, but as soon as I stop it, the anal issues become unbearable as the bathroom trips increase and it seems somehow this curbs my ongoing inflammation in the anal canal also (itching, discomfort, feeling like I have to empty the pouch constantly and nothing comes out). The anal issues bring me to tears way more than the pouch discomfort impacts me.
I will never figure it out.

I am concerned about being on long term antibiotics and have read lately that the medication you are taking and 6 mp are good choices for chronic pouchitis. Hope you continue to get good results with it.

CT....... just had my 6 month scope and biopsies (frequent flyer here) and our GI indicated things did not look too bad (could have fooled me with how I was feeling). The pouchitis is in the distal pouch with some mild cuffitis (always there). Let us know how you make out. As for now, I am still taking Cipro at 500 mg. I do still try to get off it for a couple of weeks at a time, but I am pretty much dying by that time.
So far it has not lost its effectiveness after 2 years being on and off (more on than off).

Any concerns about long term nifedipine usage? I am using this also to help with the anal fissures that occur when the pouch is active.

Thanks for the update, Jgriff. I thought I'd post mine as well. I have been on Immuran for over a year now. AFter monthly bloodwork, never with any issues, I am only doing labs every 3 months. I started at and still take 3.5 tablets/day, based on some blodd test that measured how quickly I would metabolize it?

Dr wants me to stay on rotating antibiotics with it, and I am still on 2 ENtocort/day as well, although may begin to taper that eventually.

I had some fatigue at first, but overall that has gone away and doesn't seem to effect me much. I do find that I need more sleep overall, like I really need 7-8hrs/nite and can't get by on 6 anymore, but hard to say if that is due to the drug or just getting older. I think it may be the drug, but I am NOT fatigued during daytime hours like I was right at first.

I have no other side effects, and I feel better than I have in years. Have not had a single incidnet of pouchitis symptoms since this drug brought it under control. It took about 2-3 months to start working.


Jeane-can you rotate another antibiotic in for the Cipro rather than go off completely? I wonder how your doc would feel about switching from 6mp to Cipro or if he/she would want you to take both? I was surprised mine wanted me to stay on them as I honestly am not sure how much (if at all) they are helping me, but I trust him, and I am a little afraid to rock the boat when things are going so well...

I have been suffering from pouchitis for over 14 years. I have been on every drug. I am on longer a candidate for biologics and such as I had melanoma in the past and lypomia runs in my family. Recently my factor wanted me on endocort for maintaince. Although I felt great on it long term for me was not an option. I recently went on a grain free, sugar free diet and did a weeks worth of fecal transplant. So far I'm doing great. I don't know how long this will last but for now it's good. Something you might want to
look into. PS My GI told me for years that I had CD but recently changed that to bacteria overgrowth after I had adhesion surgery and the surgeon found no signs of chrons.

Allykat,
Are fecal transplants covered by insurance and how long before you may have to do another series? Where do you go for this type of treatment? I am glad you are getting relief.

jeans just following this thread you talk about your awful joint pains ..i am sure you know that joint pains is a more common side effect of cipro..stupid question but why not another antibiotic..i am guessing some other one will work as well and you might have eliminated your awful joint pains

alleycat have you made a turn for the better as per your april 8th thread?so diet maybe helping i hope..if we have bacteria overgrowth it makes real sense it will help because we are not feeding the bacteria which is one of the issues maybe not all but one of the main issues we have..glad you have realized you have to eliminate totally not low this or that..because we cannot fool our body!!!however,for me its tricky eliminating those few things that slip by that might have some sugar..like food outside home...but i find it easy to eliminate all the grains which is a must for us..been experimenting with some of the goodies i got from digestive wellness site ..they use honey in some products..honey legal on scd but as always whats legal may not always work for us..

new approach when i think somehow i set off the bacteria in bad way with somethings i ate even if legal i have experimented with taking one 500 mg of antibiotic for a few days than i stop to get i hope on track again..actually just tried this 2 times..i could just ride it out and see but this is what i did..seeing it as harmless.. always trying to figure it out!!!!

but i am so happy to hear besides you and i some others are trying the diet approach i see..i think we are on to something here!!!

Seems I have joint pain even off cipro. Doctor's think it is more IBD related arthritis as arthritis runs in our family and my dad, who had a colectomy for UC, has had bothersome arthritis for several years. I just bought some joint vitamins ( forgot name ) to see if helps.

jeane just read this earlier thread of yours..you are in such constant pain and discomfort please try not to add the worry of having to be on antibiotics long term..if it brings you relief you need to use it..i was on the antibiotics 6 years constantly never off..i needed to be able to function and thought less about constant use of antibiotics..ct barrister has been on them for 18 years...my only suggestion is change from cipro to another antibiotic because cipro known to contribute to joint pains which you have indicated you have..

on latest thread you mentioned seeing bright red blood when you go..i think if its bright it probably is some kind of irritation to lining,or fissure tear..i had that not to long ago...i think the serious bleeding is when the blood is not bright red but very dark i remember..sometimes i have a little blood because i have gone too much or strained and so on..hoping that is not going to happen much with my diet and imodium..