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Crohn's Disease
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Posted 11/22/2013 2:37 AM (GMT 0)
I have Crohns disease and an Ileostomy.
For the past year I have had a bad intestinal infection. The reason I think it is an infection is because my output smells bad.. Really bad. Like I empty my bag and it smells the whole bathroom and it hangs around for like an hour. I am to the point where I do not use friends bathrooms and I end up just leaving wherever I am just because my bag is filling up. I talked to my doctor about this and he said that because I have active crohns disease a few inches behind my stoma, bacteria gathers there. My doctor has put me on cipro, cefdinir and flagyl. None of them have worked. They don't really know what to do next. I can't keep living my life with this.
I am currently on Imuran, Remicade and probiotics.
Please help!
Posted 11/22/2013 4:40 AM (GMT 0)
Can the doc switch you to another biologic to treat the crohn's? I always feel paranoid that I smell even though everyone tells me I don't. Can the doc test your stool to see if any bacteria grows so they will know what antibiotic to prescribe?
Posted 11/22/2013 4:52 AM (GMT 0)
Smd- I did mention testing to find out what specific type of bacteria and he said there are just way too many. They did do a stool sample for c-diff and it came back negative. As far as switching medicines, my doctor is a big believer in remicade so I dont think that will happen. I went from getting it every 6 weeks to every 4 weeks.
Posted 11/22/2013 1:47 PM (GMT 0)
Did he check your antibodies to it?I was on remicaide for four miserable months before they checked my antibodies which were present. I felt like that whole time was wasted. Do you think your gi is good. If not, maybe you could consider switching. It just seems if remicaide and imuran are not doing the trick, you need something else. I know how frustrating this disease is. Hope you get some answers!
Posted 11/22/2013 2:38 PM (GMT 0)
Your post strikes fear into my heart.

Have you tried any deodorisers for the bag? I use a Dansac one and use far more than the recommended 3 drops, or whatever. It does work, although I only use it when I'm going out (or remember to). There are old threads about this on the Ostomy board, if you do a search there - or just make a new thread and ask.

How long have you been on Remicade for? I'm a bit suspicious of your doctor being a "big believer" in it. If it doesn't work, believing in it isn't going to make it work; your doctor needs to know this. Remicade normally starts working between the 2nd and 3rd infusion (some people feel a difference after the first one). If it hasn't done anything after 3 infusions, it's never going to.

For obvious reasons, you don't want to be cutting out vast tracts of your small bowel, but if your active disease is confined to a small area, what about removing it surgically?
Posted 11/22/2013 3:08 PM (GMT 0)
Smd- They usually check my antibodies right before I get my infusion. My levels are always good and I still have some in my system. My GI is good, in fact he is one of the top in the country. I know a lot of his patients are on remicade so thats why I think he strongly believes in it.

NCOT- I have tried all sorts of deodorizers. They just add to the smell. I have a few friends with ostomies and I have gone to the bathroom right after them and I dont smell anything. I will go and walk by the bathroom an hour after I go and I can still smell it. I also did make a post on the ostomy board about this.

Ive been on remicade for almost 2 years now. about removing part of my small intestine I would be afraid. When I had my surgery to remove my large intestine I had no active disease in my small intestine. Less than a year later it showed up in my small intestine. I am afraid if we remove the disease it will just show up again and I will be back to square one.
Posted 11/22/2013 3:21 PM (GMT 0)
Sorry for basically giving useless advice about deodorisers then :-/

I couldn't care less if your GI is one of the top in the country. I was originally at a hospital which supposedly has the best gatrointestinal department in the UK (I honestly did not know this at the time; it was simply my local hospital), and it was the worst, most impersonal and indifferent, service I have ever received. I have no patience for "top" doctors. It's all about doctors' egos, not their patients.

So if you want to stick with an inflexible doctor just because he has a good reputation, that's up to you. Me, if Remicade wasn't working and a doctor wouldn't acknowledge and discuss other treatments, I'd be out of there tout suit.

I did say it was not a good to remove a large portion of your small intestine, but if the disease only affects a few centimetres/inches, I'd at least have a consultation with a colorectal surgeon and think about it.
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