Going back to my old GI

I've been home from the hospital for 2 weeks and not throwing up, but I still have a lot of diarrhea and pain. My surgeon called my old GI and am to begin seeing him again. This is out of my surgeon's area of expertise.
My GI suggested to my surgeon that he doesn't have many ideas but is thinking of Remicade. My pouchitis was very bad, I guess, and I still feel inflamed. I don't have any bleeding at least. My surgeon said that my GI remembered me very well and could even quote lab results about me without looking me up. Nice to be memorable because I was such a problem. Ha. My surgeon was again telling me how he has never seen a situation like mine and said "I was thinking of you today when I closed someone up and hoping they wouldn't end up like your case." This isn't meant to be offensive. He is really sorry for everything I am going through, even though it's not his fault.

Anyway, I thought you couldn't go back on Remicade at a later time once you were already on it? I also asked my surgeon if I made the wrong decision in having surgery and if we should have doubled the Remicade or done infusions closer together first and he said "in your situation, it would have been nothing but a temporary fix. your colon had to come out"

pam, it's nice to hear that both your surgeon and GI care about you so much. I think about you often, and really hope you find relief soon.

No, they don't think I have Crohn's. I just had another biopsy and blood test done that showed no indication of that. No one has ever mentioned c. diff, but can you even have it without a colon? What I read said it affects the colon. I've been on Flagyl to treat the pouchitis so I would think it would fix that, too, wouldn't it?
I honestly don't know if they have tested my stool. Last time I was in the ER, I think they did, but I never heard anything about the results, so that makes me think there wasn't anything to discuss.

Thanks. interesting that none of the doctors i've seen have ever considered that, as it seems pretty common...and i've seen all of the GIs in the hospital. grrr
But, again, isn't the treatment for that Flagyl?

They do use Flagyl to treat c. diff but I think some forms are resistant to Flagyl and can be treated with other drugs like Vancomyacin. I think biopsies are the best way to check for c. diff. Have you had biopsies recently? If so, you may have already been checked. You should ask your GI when you see him. It really stinks that you might have to be on Remicade even without your colon but I suppose it's not the worst thing if it helps you.

notsosicklygirl said...
They do use Flagyl to treat c. diff but I think some forms are resistant to Flagyl and can be treated with other drugs like Vancomyacin. I think biopsies are the best way to check for c. diff. Have you had biopsies recently? If so, you may have already been checked. You should ask your GI when you see him. It really stinks that you might have to be on Remicade even without your colon but I suppose it's not the worst thing if it helps you.

Ah, I see. Yes, I had biopsies done again last time I was in the hospital 2 weeks ago

Pam - I wish someone could figure out what is going on with you. It's truly terrible. I know it will get worked out but it's been going on for quite a while now and you haven't had a break. I am really sorry. If you ever need someone to talk to, I am here.

Pam,

If you had the c-diff test and it's negtive, I would really try the tincture of opium. Sometimes it just takes a while for an hyper-output to calm down post surgery. Others before you have had to go that route and it won't be addictive for what you're using it for.

Sue

Okay, then ask for codeine. Not codeine with tylenol (because you don't need the acetaminophen) but straight codeine. If you GI has never worked with jpouch patients all of this might be a stretch for him but you need to push for better control.

Sue

eh, just ask, I don't think you will come off as silly, you want to feel better and you need something to help slow the output. I ask my doctor about everything. I am so thankful I see a woman that I am comfortable with. She never shoots anything down, she will discuss less conventional treatments and explain why she thinks they will help me or why not. I asked her about helminths, I thought she was really going to think I was nuts but she was actually quite interested in the topic and while she can't help me treat myself with them, she didn't make me feel stupid for asking. I think Sue is right, you have to ask for something. You can't continue without sleep forever. Have you tried sleeping pills? Maybe that could slow things for a while?

he's not baffled and not at all inexperienced. i just said i don't think he's heard of tincture of opium (because he hasn't offered it to me), but from what I've read, it's not all that common. he's tried me on many things (questran, imodium, lomotil, sandostatin injections and infusions, gluten free diet). i'm not sure why you got the impression he is baffled. he has worked very hard for me and consulted many other doctors. if i have an issue with my small intestine, that is outside of his expertise, as he is a colorectal surgeon and not a GI. that is why I am being referred back to my GI

Pam - I hope they find something soon that will help you. I can't imagine going back on Remi (I had bad reactions). Can I recommend that you take some probiotics or are you eating yogurt daily to get some active cultures in you? I noticed that when I missed my daily probiotic for a few days I noticed a difference. My surgeon said I didn't have to but if it helps go ahead and take them. The doc that was with him (who has a jpouch) said that it's probably not worth spending the $$ for VSL3 but that it could be good to get some additional good cultures w/ a probiotic or Activia/YoPlus wouldn't hurt. I still have diarrhea off and on but it's usually related to what I ate.

Pam,

The only reason to try Remicade again is if they suspect you have Crohn's disease. I have never heard of a jpouch patient going back on Remicade for treatment of the jpouch? I thought you posted that the doctors didn't believe you had Crohn's, so why would they consider Remicade as a post surgery treatment?

Sue