Uncontrolled ulcerative colitis

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Maria Houston

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Dec 1, 2021, 12:15:24 PM12/1/21
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Anything I eat goes thru. Protein bars and almond milk is my diet along with peanut butter. My Dr. won't change my infusions until I have a total workup in March. I think insurance regulates my health. Any else have this problem? Maria.

Luke Luke

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Dec 1, 2021, 9:32:28 PM12/1/21
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Hello Maria Poll,

I'm male with Crohn's Disease. Uncontrolled, tried maybe 1.5 dozen different rxes for it too. Prednisone works but isn't a long term rx. Stella helped with the markers for inflammation but not the day to day symptoms and I stopped it after the bad effects got too much. Most of the rest didn't work AND made me sicker. Not all, some just didn't work.

On Wednesday, December 1, 2021 at 12:15:24 PM UTC-5, mariapoll...@gmail.com wrote:
> Anything I eat goes thru. Protein bars and almond milk is my diet along with peanut butter. My Dr. won't change my infusions until I have a total workup in March. I think insurance regulates my health. Any else have this problem? Maria.

Unfortunately, this newsgroup is almost dead.

You could use something like Google Groups to search the archives for things that might help.

You can find active IBD groups in many places. Reddit.com has a few that I know of.

Could you add some more information to your request?
You have UC, you think it is uncontrolled and your diet seems to be mostly protein bars, peanut butter and almond milk. You are being treated with one or more medications delivered by infusion. And you doctor won't change anything until you get some dx tests done in March.

Why is your UC uncontrolled? Has it been under control at some point?

What happens is you eat anything other than the three items you listed? Can you tolerate fiber?

Have you tried using an elimination diet to figure out what the problem foods are?

Where do you live? I'm in the USA so know more about how healthcare works here.

What medications are you on now and which ones have you tried in the past?

Is your doctor a GI? How long have you been seeing him/her?

What is the work up? Why is s/he waiting till March?

Take care,
--
Luke



Mel

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Dec 2, 2021, 9:11:14 AM12/2/21
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My son has Crohns and is now being helped with Humira. Unfortunately, many of the other drugs he has tried have seemingly had permanent side effects. Also, being uncomfortable all the time has psychological effects. I have no advice for you, Maria, other than go to more than one doctor before trying a new medication--not so much for their book knowledge but for the experiences of their patients. Best wishes.

Mel
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