Any Bees with UC?

posted 3 years ago in Wellness
Post # 3
Member
2076 posts
Buzzing bee
  • Wedding: July 2012

I have Crohn’s, UC’s nastier cousin.  My mom has UC.  Do you have a good GI doctor you trust?  How long have you had your diagnosis? Any colonoscopies or other procedures!  

As far as managing flares, nothing works better for me than prednisone, as much as I hate all of its unpleasant side effects. My mom used to take Asocol (a 5ASA drug) but she’s been in a remission for over 15 years and doesn’t take anything right now. I’m super jealous since I take one daily medication and do injections every 4 weeks too keep me in a remission.

When I was first diagnosed, based on my symptoms, but before my colonoscopy, I was told to do an elimination diet for both gluten and dairy, one at a time. I wasn’t sensitive to either, but it can happen and eliminating those can help you feel better.

the Crohn’s and Colitis Foundation has a fantastic website (ccfa.org) chock full of information and resources. They also do presentations around the country from time to time that often focus on the latest research and treatments. I donate a small amount of money each year to keep on their mailing list so I’m informed of these events. 

Feel free to PM if you want more details. I understand it’s embarrassing because it’s TMI but I don’t mind sharing (in a slightly more private manner, like a PM) if it helps someone else.  

Post # 5
Member
3756 posts
Honey bee
  • Wedding: April 2014

I also have Crohn’s disease, and the only thing that helps is diet for me. I tried all of the drugs. I do not eat any gluten or dairy, and keep added sugars to a minimum. I’m not saying this works for everyone, but I’ve had success. Although it takes a while, and 100% compliance for it to really work. Yes the various diets are most definitely restrictive, but for many people it makes a huge difference (see FODMAP, GAPS, Paleo, Paleo w/ Autoimmune Protocol, Specific Carb Diet, etc).

I started with steroids (I forget the name, but alternate to Prednisone) and anti-inflammatories (Pentasa), then I was put on Azathioprine (Immunesuppressant) for a while which was supposed to be my “maintenance” drug. It helped, but it lowers your white blood cell count and mine bottomed out to a dangerous level, leaving me vulnerable to getting very sick from other disease/infections. I already have the one, thanks. My doc took me off of it immediately at that time and since then (2010) I’ve managed with diet alone.

 

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