negative Nurse

I called my U of M nurse, she says antibiotics nor diet puts people into remission. Only medications. I see some people that antibiotics have worked for them. They want me in a study, but I can't it's too far away. I have failed every biologic out there!! I have to redo stool test since this one is so old.

Has this help people is UC or Chrons in the past? I never heard of it.
Thanks

Hi Keith, I don’t remember your UC background,So you had surgery to do remove your colon and you’re on stelara? Why? UC in small intestine?

they want me to try Progral....

antibiotics can manipulate gut microbes and gut microbe population mix seems to regulate some people's UC symptoms. In a few cases the right gut microbe manipulation seems to give some people longer remission. Technically FMT is a gut microbe manipulation.

But when triple-antibiotic therapy, or FMT therapy, is put into controlled clinical trials there just isn't clear evidence to support these therapies. There is some evidence that allows conclusions like this seems to help some people under some conditions for some period of time. More study is needed.

The same for diet. This has been hashed out here so extensively that I am not even going to get into symptoms vs IBD, or etiology vs progression, or nutrition/supplement vs food, or other things that need to be talked about instead of the useless word "diet"

So if you have had opportunity for all of this nuanced education about "diet" and you want to go argue with some nurse about that useless term, I question you judgement and suspect you just want to project your pain of IBD onto this nurse. Just stop talking about "diet" it is too course, too poorly defined, and just plain useless.

Seems like the drug they recommend is a target immune suppressant. Looks to me like a more refined version of 6mp. Definitely and anti-rejection drug for organ transplant patients. Worth a try - especially if it does not have the potential liver toxicity of 6mp.

It may be the only thing between you and surgery.

good luck

You are usually admitted to get cyclosporine. it has a lot of potential, the problem is that it's similar to steroids, works while you're on it, and maybe for a short period after, than you're back to square one. You need a maintenance medication.

i don't think the nurse was being negative, probably realistic. Pointless to hope for options that have worked for a handful of people, especially in severe cases. We have to remember that some people have mild UC and don't even require drugs, unfortunately, that was not the case for me. I have had minimal luck with antibiotics, I wouldn't say I had improvement, but things didn't get worse.

You've been on a lot of antibiotics over the years, what do you want to try? How about looking for a trial closer to you? I think I would drive to that trial, even if it's a hike. It's that or open your mind to surgery, and I know you don't want to do that. I also know you are questionable for crohn's, that makes surgery much less appealing of an option.