Meds - j-pouch related

Hi all,

I'm a newbie here at the recommendation of a friend...
I have a j-pouch and have had blockage four times in the
past 4 months, took four times before my GI took me seriously.

So I had an MRE (which showed inflammation) and after that a
pouchoscopy (which showed ulcerations.) I've been on Pentasa
for a few years (which didn't help) so my GI finally said I had to
start something asap. She had prescribed Budesonide a couple
of years ago, but I never actually took it. She then said to start
it, which I have, and I see her tomorrow when we will discuss
other meds she had recommended initially (before frantically
telling me to start Budesonide NOW!) Those meds are 6MP
and Entyvio... Just wondered how folks felt about these?
Negatives vs. Positives... I wanted to ask ks1905, who
seems very knowledgable and sees a doctor I've seen,
but wasn't sure how to go about it. Any suggestions
would be appreciated!

Many thanks.

Post Edited By Moderator (notsosicklygirl) : 12/17/2015 5:20:07 PM (GMT-7)

Thank you so much! I'm sorry to say that I had my j-pouch surgery Dec. of 2007. I was diagnosed with IBD in Jan. and by Dec. the inflammation had spread to such an extent they had to remove my colon... What they didn't tell me (or I didn't realize) is the pouch is just as susceptible to inflammation...

Yes, I'm wondering if my GI is thinking I have Crohn's now? Dunno. Will see her tomorrow and find out...

I've been reading about 6MP on the site, sounds like it has a lot of side effects (like hair loss and loss of appetite?) which doesn't thrill me! And I see from other posts that Entyvio doesn't seem to do much? Budesonide sounds interesting, but seems to only be good for short(ish) term, and only for specific areas? I haven't tried any biologics (that's what Remicade, Simponi or Humira are right?) Pentasa was sort of working for a while, lately I tried Enteragam which didn't seem to do anything, and probably caused my blockages! As far as I know, the inflammation is in the pouch, I'm not sure if it's in the small intestine as well? (Another question to ask!)

And again, many thanks, for your help and for changing my topic! (Like I wrote I'm new here so not sure what to do?)

Did you have an upper before you had surgery to confirm that the inflammation was limited to the colon? Luckily, it sounds like you have a lot of medical options left. So far as 6mp, I took it for a couple years and I didn't really notice any side effects. Entyvio seems to work well for some but the success rate isn't the best (from what i've seen) compared to other biologics, like remicade. I feel like 6mp/imuran, are great options if they work for you. Budesonide is a sort of steroid, so no, it's not a long term solution but it can help you to go in the right direction. If the inflammation is limited to the pouch, perhaps probiotics might help? ks showed me a study where people on VSL#3DS had great luck staying in remission. I am really interested to hear what your doctor has to say. I am surprised that you had your colon removed before trying remicade. we have members who have successfully treated severe inflammation with remicade for well over 10 years.

Sorry for the late reply, suffering from a hangover this morning.

I agree with your GI that you need to start taking Entocort/Budesonide as soon as possible; I normally start at 2 pills in the morning but the max dose is 3 pills and I haven't had a blockage issue like you are having. Entocort works really well for me if I'm having a problem emptying my pouch.

Single antibiotics have never worked for me, I've always had to use 2 types of antibiotics at a time (combo) and rotate them every couple of weeks so they don't lose their effectiveness. Right now I am on Cipro and Augmentin, which is the best combo for me.

Yes antibiotics made me tired too but only when I first started them, now since I've been on them for over a year they don't make me tired any longer. I think it only took a few weeks for that effect to go away. I think you should take antibiotics and if they are not working then you should try combining them.

I took Remicade when I had my colon and have built up antibodies so I can no longer take it; if I could take it then I would be on it right now, it was the best biological for me when I had my colon. Cimzia helps me but I don't think it is as good as Remicade was for me.

Which doctor are you referring to? My GI or my surgeon? I really like the NYP Cornell, I use to go to Mount Sinai but never really felt comfortable there.

If you are tired all the time then get your B-12 levels checked, J-pouchers can have issues with storing b-12.

My levels have always been normal but I've gotten my GI to give me some b-12 shots when I visit; it really gives me a bunch of energy for the next week or two. If I was ever going to abuse a drug/medication it would be b-12 shots, I feel so good after them.

Hi Bubs150,
If you're having iron troubles, iron infusions help me tremendously. I've had my j pouch for five years now. I cannot seem to absorb and hang onto iron. Seems it's pretty common among j pouchers. Why I'm not sure since iron is absorbed in the upper portion of the small intestine but it is what it is. I have to go every 4 or 5 months for an infusion.

Sorry you're having inflammation issues. Hope you get it resolved soon.

Thanks all, yes Marianne, I've had iron infusions when the levels are low, and they've helped sometimes (not always.) Yeah, it is a common problem with us I'm afraid. Whenever I'm super tired I ask to get the iron checked but lately my iron's been fine, so it's probably (?) the inflammation...

And thank you notsosickgirl and Keith, here's a rundown... As I wrote Keith I'm in NYC and saw his Dr. a couple of times, Dr. Steinlauf. I initially saw him as a PCP, my GI recommended him, but then he stopped doing that and I saw him once when my GI was away. I haven't been happy with my GI, but she no longer takes my ins. so had a pouchoscoopy with a newer guy at the practice, and he's the one I saw yesterday, I quite liked him. The problem seems to be confined to the pouch; which is rife with ulcers, has inflammation and stenosis. Since the other GI started me with Budesonide he wants me to continue on that (3 pills in the a.m.) as well as the rectal foam 2X a day. He'll see me in two weeks and then when I'm done with the course in about 6 weeks he'll look inside to see if the inflammation is better.

He said the main issue is to separate the inflammation from the scar tissue. Then he suggested either what you did Keith, antibiotics, or one of the immunosuppressants. But I had a friend with me who suggested balloon dilation which the GI said was also a possibility. The good news is he doesn't think it's Crohn's which had been suspected... So till our next visit I just have to watch for the usual suspects. Unfortunately I had a big dinner last night which I don't feel I fully evacuated which tends to precede the blockage. : ( But the GI did a lovely little sketch for me which shows a large ulcer in the pouch followed by inflammation on top of which is the stenosis. So at least now I know why I keep having these blockage issues... Fingers crossed...

Thanks again, for all your support!

B

I don't know if this is true universally, but my mother has a J-pouch, and she had her surgery at Mayo
Clinic in Rochester, MN, probably around 32 years (or more) ago. It was a brand new procedure then. Anyway, she routinely has trouble with pouchitis, and I was really surprised when our GI told her at one of the appointments I accompanied her on that there is a cuff of colon tissue that was left and attached to the pouch, and that, of course, was subject to the UC her entire colon was subject to before her surgery.

Like I said, I hope they learned to excise all colon tissue since that time, but just thought I'd mention that.