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Tried nearly everything but still having diarrhea anti-MAP? ostomy?

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Crohn's Disease
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Posted 7/26/2015 9:53 PM (GMT 0)
I have been flaring for three years now. I have already had all but ten inches of my colon removed, so I know I am going to go to the bathroom more often than most, but after having a sigmoidoscopy my GI and I realized that the disease is still very active. My small intestine is fine, but my rectum is covered with polyps and ulcers.
I am currently taking 100 MG imuran, 7 MG prednisone (trying to taper), 40 MG humira 1x weekly, and 1000 MG Flagyl per day. Flagyl really seems to help me, but once I stop taking it I start having more diarrhea and accidents so I get back on it
My GI is running out of ideas. He was going to put me on entyvio, but is now saying results are unremarkable in patients with severe crohns.
Can anyone offer any insight? I'm thinking about asking for anti-map therapy or an ostomy the next time I see my doctor.
Posted 7/27/2015 4:35 AM (GMT 0)
I'm sorry you're having such a hard time. How long have you been on Humira? Have you been on any other biologics? Sometimes one stops working and we need to go on another. If you see a great improvement on Flagyl, ant-map therapy may be a real option for you. Also, have you tried various suppositories that can treat your rectum area directly? Sorry I can't offer more help, this disease can be so unpredictable at times. Good luck to you!
Posted 7/27/2015 9:17 AM (GMT 0)
Given you have rectal disease, you could consider trying rectal meds. The drawback is that rectal meds only treat the inner lining, and Crohn's often goes through all layers of the bowel. Still, I reckon it's worth asking about.

As for your other choices, anti-MAP therapy may be worth a go, given that you respond to Flagyl. All Flagyl did for me was give me more even evil-smelling BMs. Bear in mind it's not a quick fix and it may make your symptoms worse for a few weeks. And even if it does work, you can be re-infected with MAP and relapse: it's not a cure.

An ostomy doesn't have to be permanent. You can have a temporary ostomy to rest your bowel. Sometimes diverting the faeces away from the diseased part of the bowel enables it to heal itself.

Anyway, I'd ask your doctor and get his opinion. He's right about Entyvio, imo. And I'm sorry that you're going through all this. Like you, I lost about 90% of my colon but at least this horrible disease left my rectum alone.
Posted 7/30/2015 1:26 PM (GMT 0)
What does your diet look like? My diarrhea was never controlled by meds, I needed to eliminate / extremely limit sugars and carbs in my diet.
Posted 7/30/2015 4:13 PM (GMT 0)
Instantcoffee...What do you get to eat? So far, Flagyl and cipro are the only two medications that really help control the diarrhea.
Posted 7/30/2015 4:53 PM (GMT 0)
I avoid high fructose corn syrup and limit intake of cane sugar and other sugars like maple syrup because they cause an increase in bile production from the liver / pancreas that can cause diarrhea on top of other bad effects for Crohn's.

All fake sugars like sucralose I strictly avoid. Sucralose has been linked to killing of healthy gut bacteria that deactive protease in the colon.

Sugar alcohols like xylitol, sorbitol etc. are all laxatives.

I have a lot of grain intolerance issues but for those who don't I would suggest getting whole-wheat or whole grain breads as white breads are much closer to sugar.

Is your diarrhea greenish and cloudy? Does it leave an oily / cloudy film on the top of the water?
Posted 7/31/2015 6:26 AM (GMT 0)
I usually have more yellowish stool. Yellow to green and greasy b.m. most days. I know I'm probably not absorbing food properly. I've wondered if I'm gluten intolerant, but If I were to get tested for sensitivity I would have to pay out of pocket. I've exceeded my lab work coverage.
Posted 8/2/2015 8:06 PM (GMT 0)
Willetta, you can try a two week trial of eliminating all gluten from your diet and see if it makes any difference. Then you wouldn't have to pay for testing, and you'd have your answer. I actually think that's a better method than lab testing because you might not have Celiac disease but there seems to be all different levels of gluten intolerance, which may or may not show up on lab tests. If you google gluten free diets you will get tons of info.
Posted 8/2/2015 8:43 PM (GMT 0)
Have you been on Remicade? I think it really is one of the better biologics we have. The others really never did enough for me.
Posted 8/2/2015 10:07 PM (GMT 0)
My Dr doesn't think remicade will do any better than the humira. I keep wondering if I should get a second opinion, but he has been my Dr for so long and is supposed to be the best one in my city.

How long have you been on remi?
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