I am sorry about you recent situation. Having a good functioning pouch for all those years only to deal with this issue, I know must be hard, especially when it is not a pouch related problem.

Your doctor was able to go all the way up your intestine through your pouch? I did not realize this was feasible. I have had many scopes and they have gone above the pouch but not enough to view the entire small intestine.

I have just started the same medicine for what is referred to as eosinophils in my jpouch (inflammation that produces tissue damage). I too was very concerned about a crohn's diagnosis, but at this time my GI has said not the case. I am frightened of starting the steroids also, but after over two years on antibiotics and still having some pouch inflammation, I feel I have nothing to lose by trying this new medicine.

I have read it helps with symptoms almost immediately, so maybe you will get relief from the stomach pain you have. I think they need to do biopsies in order to give you a definite diagnosis if they have not already done so.

Best of luck. Hope you get some relief with the new medicine (no side effects like prednisone they say).

I wish I did have a good functioning pouch for all those years, but that was not the case. I have butt burn still after all of these years, a pouch that doesn't empty properly, night time incontinence, cuffitis, etc., etc., etc.

I did not know that they could get all the way up the small intestine either and question it as well - one of the reasons why I'm unsure of the doctor but I don't think he would have just told me that if he didn't do it.

As far as the meds are concerned, I started my first pill on Friday night and couldn't believe how great I felt on Saturday, Sunday, and yesterday as well. However, this morning I woke up with a burning sensation and knew that I had had some leakage again while I was sleeping. Today I have gone a number of times, so I think that the honeymoon is over. No pains yet, but then again, I never had them every day. I guess it's going to be a wait and see kind of thing.

I'm wondering if I have eosinophils as well, but he didn't give it a name - never heard of it. What are some of your symptoms?

If I ever had the side effects that I had with Prednisone, it would be a see you later and find another doc immediately. Don't think I could go through that again.

Wishing you luck as well, have you felt better since you have been on the meds? Are they supposed to stop the tissue damage? How many did your doctor put you on per day and for how long?

Thanks for your reply - now you've got me wondering!

Oh, just reread you post and the problem is in your pouch not your intestine. Still would like to know your symptoms though.

Mema 1 I have gone to Beth Israel a couple of times. Recently in February for a second opinion as I was wondering if I had crohns disease after my j pouch being done in 2012. The GI doctor I saw was Dr. Cheifetz at Beth Israel.
I had all my surgeries and my GI doctor and surgeon are in Providence, RI. My surgeon was going to send me to the Cleveland Clinic but I did not want anymore surgeries so, my GI doctor sent me for a second opinion back to Beth Israel. After that appt. was doing well but then just had a setback. Was back in hospital for a 12 day stay for an obstruction. Something very new for me. From what I have read on this post and others I guess we will never get rid of butt burn (it comes and goes).
Can we ever catch a break?! Wishing you all well!

Roberta

Thanks, for your response. I've heard of Dr. Cheifetz and heard that he was good. Someone that I know uses him because she has Crohn's, but does he know about jpouches, that's really the question?

A 12 day stay....so sorry. That must have been a real doozy.

As far as the butt burn goes, very few people have it after they've had their pouches for awhile. Mine usually is bad after eating sweets, which I've been really trying very hard to not eat lately. From all of the posts here, it's like poison for us, and I have enough problems without adding to them. I love sweets, so will eat them, but try to pick my "poison" when I'm really desperate.

No, it never seems as though we'll ever catch a break, however, there are some that are a lot worse than we are, so I try to remember that. Unfortunately, it doesn't always work!

Stay well!!!!

Mema,
My symptoms are usually difficulty feeling like pouch has not fully emptied, sometimes lower abdominal cramping, muscle fatigue, more trips to the bathroom (usually in succession) and often butt burn, anal pain and tailbone discomfort.

Thanks,Jeanne, sounds similar to mine, but a bit different. No really sharp gas pains or leakage?

This just seems so endless to me and so stressful. Had some leakage again last night due to the fact that I can't empty fully. So what's the sense to all of these meds? What are they doing to me and for me? Getting a bit discouraged.

Mema,

I am confused here. I am not sure how your jpouch could look fine and you are having leakage? I really only have leakage when I have inflammation, but I am not a surgeon or GI doctor and it is possible to have inflammation that may only appear in biopsies I believe and not be clearly visible to the naked eye. I would trust your surgeon and GI though. I am interested in whether the GI took biospies or not as I always have them to determine inflammation in the pouch.

Are your ulcers way above the pouch? Did they tell you exactly where in the small intestine they located them (directly above the jpouch connect, further up etc)?

I agree with you the frustration level is VERY high. I did not like being on chronic cipro for my pouchitis and just started the entocort very unwillingly today as now I am taking both medications. My pouch seems to be better with just the cipro, but I have nagging tailbone pain and my cuff is uncomfortable. I am hoping the entocort helps this as well. My hope is that wit a short duration of this new med, maybe we will get a longer period of remission from issues after starting it.

What is your stomach pain like? I rarely ever get gas pains with my jpouch. What I get is gut wrenching waves of intense cramping when the pouch is acting up (lots of noise and gurgling also) and some minor nighttime leakage on occasion.

Keep me posted as to how you are making out and I will do the same. Try not to stress too much over this. With all the issues I have had since day one I am now looking at this as one more hurdle, but I honestly do not hold out much hope for the longevity of my pouch.If this med fails, it is possible biologics and then perm ostomy if those fail and I am not sure sure I want to continue on with constant pain, doctors and the drug train too much longer.

Jeanne,
Good questions on everything that you asked.
Biopsies were taken and I have not heard that they found anything. When I spoke to the doctor last Friday he did say the pouch looked fine. The only problem were the ulcers that he said "went all the way up the intestine" and how far he went, I have no idea. He was not sure what the ulcers were caused by and asked if I took Advil or any other meds like that, which I don't. His answer at that point was if I didn't that was the reason that he suspected Crohn's.

I believe that the leakage is because of the fact that I cannot empty properly and if that's a sign of pouchitis, then I guess he doesn't know what he's talking about. I've been on cipro a number of times for suspected pouchitis, and still had leakage so quite frankly I don't know what is wrong with me.

My blood work came out fine except for an elevation in one of my inflammatory markers called ESR, whatever that is. I have had bronchiectasis (sp)? for about 5 weeks now, so possibly that's what they were seeing, have no idea. In the meantime, the entocort has been working wonders clearing that up.

My stomach pain feels a bit like a slight blockage (not nearly as painful but very uncomfortable). With a blockage, the pain is quite severe with these pains they're bearable but uncomfortable. Then the gas starts, and they are shooting pains that start in my stomach and end up in my rectum. If I'm able to release the gas by trying to go the the bathroom it goes away for a bit and then returns. My surgeon was treating this (before the stomach pains) as IPS and I've been on Librax for years.

When you talk about gut wrenching waves of intense cramping, and lots of gurgling and noise,I get that too.

I'm not great at expressing how I'm feeling and that's also part of the problem, I just know that I don't feel good.

Hopefully the entocort will work well for you and I agree, please stay in touch so that we can compare. I've been drinking TONS of water since between the librax and the entocort you have to drink at least 8 ounces of water, so now, besides running to the bathroom to poop, I'm running to pee as well.

I'm considering making the bathtub my bed. At least I won't have to go far.

Haha. Thanks for that last laugh. Always need to find some humor with this insidious disease. Thanks for the water tip. Hope the entecort does not bloat like evil prednisone did!!!!

If there's no humor we'd be crying all the time. Would much prefer laughing when it's at all possible.

I haven't gained an ounce - actually have been losing weight (a sign of crohn's too, I think) although my appetite has been minimal. I'm now down to 99 lbs.

Didn't the instructions for taking entocort say to drink at least a minimal of 8 or 9 ounces with each pill? Expect your mouth to taste like you know what as well, but with the librax it tastes like that anyway, so I'm kind of used to it. Always wonder if my breath smells as bad as it tastes, and I'm sure it does.

Oh, BTW, I guess I'm on the generic since it's not called entocort but bud something. One more thing, my surgeon, before all of these procedures were done, told me to stay on a low residue diet. Are you on one? Love veggies and find it very difficult not eating them. Actually, I'm afraid to eat much of anything although I should try to see if some of my symptoms return while I'm on the steroid.

All I am eating is fruit yogurt, veggies and fish meats mostly, no carbs or sugar. I'm taking the generic medicine too... Some generic... Was 300 out of pocket for one month supply. You are probably on low residue due to narrowing in intestine and active ulceration.

I see nothing about water with meds but it is best to drink more anyway
as I feel like the toxins from all these meds are not good for kidneys, liver etc
My GI mailed me today and is going to call later to answer some of my questions I have. I will report back with more info letter.

Hope you do not lose more weight. Try toast and eggs etc and things easy on the gut. Baked chicken, carrots and potatoes were my go to all the time with UC. Homemade chicken soup helps too.

I can't believe that it was that much money. I'm still working, so have a pretty good policy - I don't want to tell you how much my meds were, don't want to aggravate you.

I can't eat yogurt, goes right through me, and I love it. Am trying to stay away from sugar, and at one point was not eating bread, but I just felt that I was losing too much weight, so started eating it again. I actually like anything that's not really good for me. This week it's Passover, so eating matzah is most likely not what I should be doing, but I'll lose more if I don't eat any starches and since I don't have a large appetite, I don't eat that much. I rarely eat lunch so I'm a two meal gal. Most of the reason for that is because the more I eat the more I have go and I hate to have to take more lomotil than necessary. Vicious circle type of thing.

Wonder why it didn't mention to drink lots of water with this particular med, especially since it leaves you with a very dry mouth.

Just a couple of clarifications:
A flexible sigmoidoscope (the instrument used for pouchoscopy) can get into the small intestine a bit beyond the pouch. It can't go "all the way up," so the doctor must have simply meant that there were ulcers in the small intestine (i.e. "all the way up " beyond the pouch). He'd only have seen a small part of the intestime. That's certainly a reason to think about Crohn's, though. There aren't that many diseases that can ulcerate the small intestine.

Leakage is by far the most common complaint of J-pouchers, and not everyone who leaks has pouchitis. People seem to get some relief with thickeners/Bulkers (e.g. Metamucil, Benefiber, or Citrucel), kegels, and maybe Imodium or Lomotil. If it's pouchitis, the antibiotics seem to work like magic for many folks. Good luck!

Thanks, Scott, for that clarification.

I guess right now I'm in a wait and hold pattern. So far Crohn's is not a definite diagnosis, not as yet anyway. We'll see what this med does for me and I'm sure that I'll speak to the doctor if he discovers anything else.

I would "assume" that if it was pouchitis because of the fact that I do have occasional leakage, the endocort would take care of it. So far it hasn't which leads me to believe that it is not pouchitis. Of course, I don't have my medical degree yet and I have been wrong once before, maybe this is the second time.

Thanks again for your input.

Scott,
I have inflammation in my small intestine and some small ulcers in two spots and have not been diagnosed with crohns and have had numerous scopes and biopsies. Even my last biopsy that came back with inflammation and eosinophils in the lamia propria tissue in my pouch still has not changed me to a crohn's disease (at least not yet). My fear is this new diagnosis may be the start of developing crohns in my small intestine as tissue damage seems to occur with this new diagnosis versus just surface level inflammation. The thing that is saving me is they have not seen any ulceration above my pouch, at least not yet.

Okay, so now I'm wondering.

Was so hungry at lunch time today, and I was home and not working, so I decided to treat myself with potato sticks and some marshmallows. I most likely didn't drink enough water to help it go down and got what I call a bit of a tummy ache. It's a type of blockage, but I'm still able to pass stool. The ache also goes down to my lower back and my sides. Of course, that meant no dinner, because if the feeling doesn't go away and if I eat, then it WILL become a full blown blockage.

My question is does entocort take the narrowing in my small intestine away eventually, and will it always remain narrow. Does anyone know, or is this a doctor question?

Tea and lots of water for dinner tonight. I love my life, although it is my fault! DUMB

A narrowing will cause a part blockage like you r describing. He question is what is causing this narrowing? Is it CD or is it adhesions? Usually when they find ulcers in the small intestine above the pouch they call it CD. The ulcers though could be a by product of the possible adhesion where ur not getting stool completely thru and bacteria is building up? I took endocort for inflammation and did great on it but it's not recommended long term so u need to find out what is the cause of the narrowing? I don't think endocort will address that issues but am not sure. I know biologics and surgery usually for narrowing.

Thanks, AllyKat, I know you have many problems too and do appreciate your response. That's the problem. They don't know what's causing the narrowing and my surgeon really felt that it was Crohn's but as yet, they still don't know what is.
What is CD? Am wondering if the GI doctor knows what it is? He never mentioned adhesions, although I always felt that was my problem especially where I've had partial blockages starting very soon after my surgery in 2001. I think I'm going to address this with my surgeon and the GI doctor very soon. Thanks for your quick response.

DUH, AlleyKat - I guess I didn't realize that CD is Crohn's Disease

Just to be clear, ulcers in the small intestine don't prove Chrohn's, they just make it important to consider. Backwash ileitis could probably cause the same thing.

The reason to label it (as Crohn's or whatever) isn't to worsen or allay your (completely legitimate) concerns. The label (when it's correct) helps suggest treatments most likely to help. If the diagnosis isn't really clear, then you just have to try more things until you (hopefully) find something that works.

Thanks, Scott, I'm in terrible pain tonight, the same pain that I before I was put on entocort. Just don't know what to do anymore and I'm getting very discouraged. I will mention to the doctor, when I call him tomorrow what is happening and also the backwash iletis. Think I'm also going to start a new discussion to see if anyone can offer me suggestions of what to do. I'm at my wits end at this point.