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Does anyone suffer from Crohn's or colitis?

Autoimmune Diseases | Last Active: Nov 17 8:48am | Replies (111)

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@lss111

Thank you again pb50 and all that have shared in this discussion.
I have read so much on biologics (poor efficacy in LC , potentially severe adverse effects) and discussed them with several Gastro MD's. Varied opinions 1. Start biologics immediately 2. Don't start biologics.
Although cautioned on Budesonide by Gastro, I have read Budesonide is safe, (thank you astaingegerdm) used for flairs unresponsive, and can be prescribed at a low dose 3 MG/daily for some patients.
In my situation (after 20 weeks total- Budesonide , the last GE I saw and at my suggestion as I was becoming symptomatic prescribed for 1 month Budesonide 3MG/daily. She was reluctant. It worked very well. I do message with updates however she never responded. I am a WHNP-c with my DNP (which matters little). I believe patient care, knowledge, empowerment always listen to the patient, determine what is acceptable and do able. Modify your plan to meet their needs. After all, health care does belong to the people, not providers, insurance, government.
May be radical to some and I'll get off the soap box.
I know diet does matter, although advised it doesn't. I added foods to the flair BRAT diet- some tolerated, others not and of course what is tolerated for days suddenly does not. Factor in stress (family) doing everything I have practiced for 40 years which never seemed to help in past or currently. Your input is appreciated:
1. I don't eat processed food. Has this helped others.
2. Has anyone taken Cholestramine (Questran Light, Prevalite- binds bile acid. May help MC (although no studies, just anecdotal). Diffecult to take 4 x day, avoiding other medications especially Synthroid (6-8 hours before. It hasn't helped. Interested in your experience with this drug.
3. I was diagnosed with immuno suppression some time ago and a genetic disorder MTHFR and elevated homocysteine. Implicated in multiple heath disorders and diseases, food recomended for management of colitis may increase the adverse effects of MTHFR mutation and elevated homocysteine. This has resulted in medications being ineffective. Has anyone been diagnosed with any genetic issue.
Sorry this is long- again your help greatly appreciated.

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Replies to "Thank you again pb50 and all that have shared in this discussion. I have read so..."

Hang in there. Its a daily and long journey.

Disregard the following. Reading your most recent post i now understand you are immunosuppressed without meds to create that state. So nothing below applies to you 🙄

One point that may be useful insight… on point 3 above you say …”. I was diagnosed with immuno suppression some time ago”…

Actually you were likely diagnosed with an autoimmune disorder where the body’s immune system attacks itself. When you take a biologic drug or some steroids, you are suppressing the immune system so it won’t attack normal tissue with inflammation. So the drugs are like a thermostat that lets you dial down your immune aystem 🙂

Have a good evening!