My Crohn's is back after (mostly) nine-year remission, but...

I was diagnosed with Crohn's nine years ago after a colonscopy and then was put on Asacol. I was very lucky that my symptoms (diarrhea with blood) went away for the most part, reappearing only for a week or two here or there then disappearing. So i was the queen of denial and stopped seeing the gastroenterologist or taking the medicine.

Now about 6 weeks ago (not sure of the date because of that denial thing) it started again with belly cramps, lots of diarrhea, weakness, fatigue (from loss of blood?), even some knee and back pain and skin welts that may or may not be related. I finally got myself to my regular doctor (actually his PA) who told me to drink Gator-Ade and go back to the gastro guy, who has an unpleasant personality but is the only one in the area who takes my insurance. Dr. Gastro scheduled me for a colonoscopy in a month from now, ordered stool tests and put me on Flagyl--that's it. Does that seem like normal treatment for this?

I work freelance and have two kids who are as of September both in school full time, and am too tired to cook or clean or do anything. My husband feels stressed out and helpless (but refuses to help with the house stuff). Even my great passions of reading, eating and cooking have no interest for me. I am having to cancel things I said I'd do and back out of obligations because I'm just to weak to do anything. All this blood is terrifying. I've been taking Immodium when I have to go out and work away from toilets for a few hours, Pepto-Bismol the rest of the time.

Should I just wait it out until the colonoscopy? Should I find a new doc far away? I just wonder if these are the usual diagonostic steps, with no blood work, no other meds or tests, no advice on how to cope.

Thanks so much for any advice from experienced folk.

Hi You could ask your GP to do some bloodwork on you.Also go to emerg. if you are looseing alot of blood or it continues.Sorry your Hubby isn't helping much. Hopefully the Flagyl will help some. Let us know how you are doing .lol gail

Hi Bianca Rose,

I doesn't sound like Dr. Gastro is much interested in you as a patient. A whole month wait for a colonoscopy, while you're slowly bleeding away all your energy - not good!

Where are you geographically located? There might be some others on this forum who can suggest a doc.

Some diet changes might help. Have you quit caffeine (coffee, tea cola)? If not, you should. Ditto for hot peppers. A useful (but by no means comprehensive) fix for diarrhea is a low-fiber diet. People who are bleeding sometimes have to go on a liquid diet like Ensure. More long term, some people do well with the specific carbohydrate diet, but that's also not guaranteed.

Some of us are experimenting with low-dose naltrexone and getting good results. That's my current strategy, along with some supplements which can be bought over-the-counter: probiotics, MSM, vitamin A (from fish oil, not beta-carotene). Don't exceed recommended dosage of vitamin A (just one capsule a day).

You'll probably need that colonoscopy to get a clearer picture of what's going on. If things are really bad, surgery could be called for, but that's a professional judgment and none of us can diagnose you by Internet. If you need surgery and have trouble with your insurance company, I know of cheap alternatives if you're willing to travel overseas: Thailand - where I had my last surgery (see http://www.bumrungrad.com/).

regards,
Robert

Thanks for the advice. It's just so great to know I'm not alone in this. I've known only two people with Crohn's in my life, one I've long been out of touch with and the other I only know vaguely through my old job. So there's no one to ask this stuff.

The gastro guy called last night and said I was positive for C. diff and so planned to put me on a new med, he said. Turns out it's the exact same prescripiton he gave me when i saw him Monday! That doesn't inspire confidence. I think i will find another doctor, a Crohn's specialist, like some of you advised, even if its a 40-minute drive away.

I had to cancel a class I was supposed to teach today and HATE disappointing little kids. I am so ready for this to end--I know I know, there's no cure, but to at least get it under control so i can take care of my responsibilities. I never realized how much i normally accomplish in a day until it started being left undone. Enough to make me think i'm sick subconsciously on purpose or something to get my husband to do more around the house to keep it going....

Now I have a constant headache, very unusual for me, in fact being any kind of sick is very unusual for me and I hate to hear myself whine and complain about it.

Well, I'll look at the bright side, I'm getting some needed rest and losing some unneeded pounds (6 so far)...

Thanks again so much for the advice and support.

sorry that you are feelling so crummy. On one hand it's good to know what is ailing you, on the other hand aieee. anyway, make sure that you wash your hands frequently and when you start feeling a bit better wipe down the house high contact areas with a little bleach because it's contagious and you might reinfect yourself. We quarantine people at my hospital with that stuff.

take care