Entocort

You can also try cipro, augmentin or xifaxin antibiotics. To be honest, cipro works the best for me. I also struggled prior to my connection with diversionary pouchitis.

I think that's a good question for Dr. Shen. (I'm kind of jaded but would want it cleared up before take down.)

I am allergic to Cipro and break out in hives so that's out of the question. I was thinking maybe I might have to resort to Humira or Remicade. I am just so miserable and to make it worse I go to night school that the classes are 3 hours long. It's awful because I have to excuse myself every half hour.

Try augmentin ad it us stronger and a different class of antibiotics than cipro. Also get a prescription for vsl3ds probiotic. It helps some people with pouchitis. I am sorry for your pain. I know pouchitis is so uncomfortable and trying for some of us.

sorry things are so bad for you. I suspect that maybe Dr. Shen might find some mechanical problems with your pouch. He will probably run a lot of tests on you.

I don't understand why they tried entocort if prednisone didn't work. Entorcort is sort of like a more localized form of prednisone. If prednisone didn't work I surely don't think enttocort would.

But in the interim, how about rifaxamin or tindamax?
best of thoughts for you in getting through the next three weeks.

I have been on augmentin twice and i felt great while i was on it but as soon as it was finished i relapsed with pouchitis again. My GI mentioned vsl#3 but he is waiting until I go see Dr. Shen. Apparently he is the pouch guru. Its just awful because I started classes for my bachelors and now I feel like I am going to be missing a lot. Oh well, fingers crossed for a fix.

Right now I'm on both the prednisone and the Entocort which combined has been helping.

I do not understand why your doctor is substituting antibiotics with prednisone if they were working. There are many of us unfortunately on long term antibiotics for chronic pouchitis but it works and I would take those meds over prednisone.

I think it's because my doctors where I live aren't familiar with the J pouch. I am the only patient they have that actually has the J pouch. But yes prednisone is a miracle drug but it also has many downfalls. I'm sure Dr. Shen will take me off of it and give me something a lot better. Only a couple of weeks left!

Dr. Shen will prescribe antibiotics and most likely rectal meds like canasa or anucort. The may want to scope you also. Good luck. I really think it is in your best interest to get off the prednisone.

akk.. why don't you get back on the augmentin so you can carry on with your schooling until you see Dr. Shen?

Nobody will prescribe the augmentin to me. I asked my surgeon, my primary, and my GI. My surgeon won't because he said his job is done, my primary won't because he has to have permission from my surgeon, and my GI doesn't think that augmentin is strong enough so he prescribes flagyl. However for some reason flagyl makes the inflammation worse. I'm kind of stuck in the middle of everything until I see Dr. Shen.

quote:

My surgeon won't because he said his job is done, my primary won't because he has to have permission from my surgeon, and my GI doesn't think that augmentin is strong enough so he prescribes flagyl.

These are unbelievable copouts. It should probably be the GI's call, and I really don't know what he means when he says augmentin is not strong enough because the dosage of any antibiotic can be adjusted. It's true that cipro and flagyl are generally found to be very effective but augmentin gets the job done and many people have reported good success. Bottom line is if you are going to be on antibiotics for more than 1 or 2 courses you will need to rotate them and augmentin has been in my rotation for a long time. Your GI's reasoning is weak, unless he/she thinks the pouchitis is capable of being stamped out in one course of flagyl, but there is a fair chance that this may not be the case.

Augmentin is the mother of antibiotics (very strong). I agree that there is passing of the buck here as it seems no one wants to put their neck out to prescribe medications they may not be familiar with prescribing for our situation. Both my surgeon and GI readily prescribe antibiotics for my chronic pouchitis.

Dr. Shen will help you with this, but it is to bad you have to suffer until then.

I took augmentin when i had pouchitis and the inflammation was gone but it gave me diarrhea real bad. I have been good for 2them months and today I got pouchitis again. Im so sore down there that I can't even sit down. I can't believe it happened so fast. I started cipro about 3u hours ago but no results yet. Cipro usually helps the best for me. It usually kicks in in about 55 hours. I hope you feel better soon. I don't think anyone who hasn't experienced pouchitis would ever understand how much pain and suffering we go through. Stay strong it will go away soon just try the cipro. I take it before I eat so it goes down to my pouch before my food and heals me faster.

Can you printout this thread and take it to your GI? Plus if he doesn't know if he can prescribe it he should be able to find out by calling someone like Dr. Shen. You shouldn't have to suffer like this.

My GI had a conversation with my surgeon, regarding cuffitis. When they both ran out of ideas he sent me to an IBD GI specialist at Mayo.

I went to see Dr. Shen for pouchitis, cuffitis, and possible Crohn's. When I left there all I had a script for was Endocort, and Pentasa. I take 3 Endocorts per day, and supposed to take 8 Pentasa's per day. Dr. Shen has told me to break open the capsules and only take the actual medication so that it is in my system longer, and I don't have to wait until the capsule breaks down before the meds actually start to be absorbed. While I am not back to being like I was post surgery, I am doing 100% better than what I was, an am continuing to get better daily. I did start taking 1 Flagyl per day though as I started feeling my pouchitis flaring up. After being on it for 24 hours all was better.....
Chris

Thanks Chris. Do you break the pentasa and put it in liquid or food ? I was told it would not help the cuffitis as it would never reach that far.

You break open the capsules of Entocort? Right now I am willing to try anything. I have never taken Pentasa though.

I take both Entocort (small pink capsules) and Pentasa (large blue capsules) and I have never broken them open nor have I ever seen one in my excrement. Not that I would question anything Dr. Shen says, but what is the point in taking medication in capsule form if you have to break them open? I don't believe either of these meds is timed or extended release.

AKK,
If your surgeon or GI will prescribe flagyl, then they should prescribe cipro for you. Often these two drugs are used in combination for pouchitis.

You need to contact your GI/surgeon and tell him this and that you have spoken to many others on this medication for pouchitis and that you are concerned the longer you have to wait for medication that works, the more your condition may deteriorate. This is just not acceptable.

Chris,

Which medication is for your cuffitis? I may be having a brain fog, but have never heard of an oral medication for cuffitis, other than what Jan Dollar takes daily for maintenance. She takes something else, of course I can't remember what it is. The same ingredient in asacol and canesa.

I take Azulfidine. Same active ingredient as Pentasa and Asacol. It just contains a sulfa component, so any people cannot tolerate it. Azulfidin is also prescribed for my inflammatory arthritis.

You actually don't want these meds to be absorbed because they are thought to work topically. That is the reason for the various methods for delayed release, so that the drug is released in the terminal ileum and colon. Azulfidine uses a chemical bond that is broken by the action of bacteria in the colon or pouch. But, if you are taking Pentasa and the capsule is not breaking down in the terminal ileum, it makes sense to open the capsule.

Jan

Yes I am breaking open the capsules and taking them per Dr. Shen. The Pentesa is for my suspected Crohns, and the Endocort is for cuffitis. I am having to break them down so that my body will absorb the medication faster. Everything goes through me so fast that if I don't I might as well not take them. Even with breaking them open I can still see traces of the medication (tiny balls) in my stool. When I first started taking them I mixed them in applesauce, now I just open the capsule pour them in my mouth and take a few sips of water to swallow them. Took a week or so to get used to doing it that way, but now it's never a problem.

Chris,
My GI prescribed pentasa for my cuffitis (and possibly to help with my pouchitis) and I stopped it, although I do not have suspected crohns. The pentasa and canasa combo gave me severe upper abdominal pain. I am finally having luck after SEVERAL months with Canasa. Are you still using this for the cuffitis? I also realized with ulcers in the anal transitional zone it was hard to get the rectal medication in the small area and it would often go up into the anastomosis and into the pouch after inserting. I'm not sure if this is your situation or not but I now am very careful about over inserting the Canasa and stay put for awhile even if still in the bathroom so the meds stay in contact with my inflamed area.

Hmm.. Maybe the pentasa is for the cuffitis, and the Endocort is for the Crohns. I think I am right though that the Pentasa is for the suspected Crohns though. I tried Canasa, Hyrdrocortizone suppositories, and Protofoam with no relief what-so-ever. From there I went on Cimzia, and didn't see any results in the 90 days that I was on it. So far the combination that I am currently on seems to be working for the most part. I am still not back to where I was for the first year and a half after my surgery, but I am closer each week.

I believe the Entocort and Pentasa are both for the cuffitis AND the Crohn's, since they both treat throughout the intestines. Sort of a double barrel shotgun approach with "both barrels blazing"! The idea is to get everything in their path. Frequently with Crohn's more than one drug is required for induction of remission and maintenance. And remember, Crohn's can affect the rectal cuff too...

Jan

"both barrels blazing" That is a good one Jan! Both my GI at Vanderbilt and Dr. Shen said that they wanted to aggressively attack the possible Crohn's because they didn't want to risk losing the pouch. Needless to say I am happy that they feel that way because I really don't want to lose it either even though it has been such a pain in the butt (no pun intended)..LOL

This post is directed to Chris or anyone on this thread who may have any advice. I have been on the anal meds Chris is taking for his pouch issues and have been for over a year with very little success. I am wondering how they diagnosed crohn's disease? I am having so many similar issues and for such a long period of time and no one has diagnosed me with crohns. As a matter of fact my GI tells me not to worry about crohns.

I have tried all the anal meds with almost zero luck for complete remission. I tried to go two days without them as I have not had really bad anal pain recently and bang.......full toilet full of blood tonight and I know some is coming from the pouch. If I miss one dose of cipro, my stomach rumbling begins and the frequency is increased and the left sided stomach pain (similar to UC days) reappears. It also looks like I am passing bits of red tissue when I empty the pouch and I am wondering if that is coming from the pouch if there are ulcers in there?

I am getting scoped next month and have once again been on cipro for going on two weeks again and I won't even bother to try and eliminate it before the scope.