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10 replies

Keep Trying Something Different!

J J.T.Member
My pouch is 20 years old this year.....hard to believe! Like most of you, I have had many issues along the way. And along the way, I almost gave in (more than a few times) to have my pouch removed for a permanent ostomy.

I have a sinus tract, tailbone pain, lower back pain.......as well as chronic pouchitis. I have had way too much gas & pressure for 20 years! I did the antibiotic thing for 15 years, and then moved on to Humira. I have also tried every probiotic on the market (even making enemas with them)! I think Humira worked a little, but not as much as I liked to fool myself into thinking it did. But I had no other choice....the antibiotics were not working anymore. My GI actually wanted me to do 6MP (bfore starting Humira), but a pancreatitis reaction years ago, in my colitis days, prevented me from trying 6MP again.

This past summer, I got a bad case of posion ivy, and took a 6 day (maybe 8) pack of prednisone. My pouch functioned amazing while I was on prednisone! I thought, why can't it always be like this? But as we all know from our colitis days, predisone is a wonder drug that can/will destroy the rest of your body. So I got to thinking about how I had tried cortisone suppositories years ago (with little success), and thought why not give cortisone "enemas" a try. So I asked my GI, and she wrote the script for 1 enema at bedtime.

I was amazed at the instant success! The gas & pressure has subsided, and I am actually sleping through the night. It has been 3 weeks, and I am doing great! I started to feel a little gas creeping up this week. So I am taking 250 mg of cipro in the morning, and 1 cortisone enema at bedtime. Four weeks & looking good! I can't believe that such a low dose of Cipro is working. I normally was taking 500 mg two times a day.

I am writing this to let people know that there is hope......and to keep trying something different....if one thing fails, try something new. I am one of those J-pouchers that has to either be on the toilet ......or......be lying on my stomach in order to pass gas. I have been laying my stomach for 20 years to pass gas! That sucks!!

Are the enemas inconvenient......yes, but a permanent ileostomy is even more inconvenient! Every time I started to thing about going back to a permanent ileostomy, I dreaded the maintenance. I do not think I would have a body image issue with an ileostomy, but the maintenance...........yikes!

Joe
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J jeaneMember
Great news. Your story guves hope to some of us in similar situations and struggling. It's been about two and a half years for me with my pouch and cipro is still helping but i hatw the muscle aches it gives me. I am at 500 mg a day and have found that coupled w Metamucil is helping me with the anal issues I have. I also suffer from the tailbone pain but no one found a sinus and up until recently I never even experienced gas with my pouch.

Is it ok to stay on those enemas long term? Did they diagnose you with crohns?
TE MarieTE MarieMember
And here I was feeling sorry for myself because I had to start taking my antibiotic again today. Thanks for your post.

Do your use probiotics and/or have you used them? I'd like to know what your opinion of them are and what you've tried etc.

Thank you for sharing your 20 years of experience with us. May take down was around 2.75 years ago.
Jan DollarJan DollarModerator, RN, retired
I think Joe said he had tried every probiotic on the market, even using them as enemas. So, I guess you can assume that they weren't real useful.

Personally, I consider them a mixed bag. Work for some, not for others, and a bunch of in-between. For me, I only notice subtle differences when on them, but think they are worth exploring, since there are no serious side effects.

Jan Smiler
J J.T.Member
Jeane,

I get scoped every 2 years, and they take biopsies every time...the lab always says no Crohns. However, I have have consistently had 1 ulceration in the pouch for years. We will see next Spring if that ulcer is still there (my next scheduled scope).

Cortisone enemas are topical, and the systemic side effects of prednisone are not experienced. That is what I understand from my original GI who diagnosed me with ulcerative colitis. But I will ask my GI about taking them for months possibly years. I didn't experience any side effects from Humira, but I was constantly living in fear about the possible side effects.

Maybe your tailbone pain is arthritis?

With regard to the probiotics.....I agree with Jan, they are a mixed bag. My GI wanted me to keep on doing the probiotic enemas as she said it could be changing the pouch on a microscopic level. I did them for at least 3 months.


Joe
J jeaneMember
J.T.
I also have a small chronic ulcer on my anastomosis connection and one very small one where they stapled the jpouch when they created it (at last scope). So far, they have not gotten worse.

Dr. Shen told me you could take anucort suppositories forever with no concern so I would have to agree I would rather be on the cortisone enemas than Humira if I had a choice.
SallyJPouchSallyJPouchMember
Hello friends! I, too, have bad back pain (tail bone area) following a horrible flare-up last week of rectal bleeding. At the ER, it was determined I also had a UTI, was given 2000 mg of Keflex for 7 days and will finally meet with a g.I. today. The lower abdominal pain and lower back have been unbearable this past week, even with Norco. The bleeding stopped, but it was the worst I can remember, and I am so happy to see a doc to find out what the heck is going on. Sally
TE MarieTE MarieMember
Sorry I didn't see the probiotics portion of Joe's post Confused

Thanks for checking with Dr. Shen about using Anucort long term jeane Smiler

I don't have any ulcers at the connection of my j-pouch but have chronic tail bone pain that varies. I was diagnosed with arthritis in my lower back that was "normal" for my age of 56, at the time of diagnosis, by my RA.

Cuffitis, pouchitis, sitting for any time etc. causes the pain to be worse. I also have IPS. For whatever reason, since the surgeries my tailbone area and lower back hurts and more than before my j-pouch surgeries. Sometimes it hurts more than others, depending on what's going on with my j-pouch because that's where it's at. I think there's a bunch of nerves affecting the pain as well. I could be wrong about the nerves. No one talks about nerves but I think of them when I think of the end of our spines and surgery around the same area.

I take Norco daily for pain.
A AtopMember
Joe
Great news about the cortisone! Makes sense. My dr put me on budesonide which is a steroid but unlike prednisone releases in the ileum and does not travel throughout the body like prednisone (so the doc says) have been taking 1 3MG capsules 3x a day for 2 weeks with improvements but still major pain. I like your solution better and will bring this up with my doc. Have had pouch for 25 years , thinking seriously about getting it my pouch removed

Anthony
C clouseauMember
JT, That is such great news!!! I love those stories.
My pouch is about 21 years old and did extremely well until I was diagnosed with follicular lymphoma 1.5 yrs ago, then got pouchitis.
Dr Shen put me on proctofoam, an enema, is that the same thing as cortisone enema?
I did it for several months and really didn't see a difference. I'm trying to reduce my intake of antibiotics, normally cipro and tintazole(like flagel) which Dr Shen put me on and for the last couple days just did tintazole not the cipro and all day long I have been in the bathroom again. I'll start with peptobismol and immodium tonight to see if that helps.

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