Does anyone suffer from Crohn's or colitis?

To be fair I haven't been diagnosed with Crohns. I have confirmed collagenous colitis so apparently that isn’t helped with Remicade. Neither is osteoarthritis. But joint disease caused by inflammatory auto immune actions is helped immensely most of the time.

It bares repeating, I think, since stuff gets buried, please look into Low Dose Naltrexone. Over %80 of the Crohn's patients benefit from it. Take it from someone who has had Crohn's for 40 yrs and is now symptom free and medication free. (Except for the LDN.) Also, colonscopies have been normal. I still have to watch what I eat but it is more relaxed than before.

Ive heard imuran means it when it describes the variety of side effects. I think I will pass on that one if offered.

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.

I was offered Imuran, declined. I have documented immune insuffiency, Genetic disorders, had 3 squamous cell carcinomas all within 3 months. My sweet father diagnosed in 2018 and passed from malignant melanoma 2019, brain, lung, liver mets. He was never offered immunotherapy after surgery per my brother OR he declined it OR my brother I suspect discouraged it. Long sad story that continues today. Sorry-

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!

@suetex who prescribed the LDN? I’ve had Ulcerative Colitis for 30 years. It’s somewhat managed by Entyvio but I would love to try something else that can help

I got my current rhuematologist to prescribe it. If you don't have one of those, you might try your primary. Otherwise you can go on line and see if any dr. in the area is specilizing in it. It can be a challenge. My current rheummy just gave it to me to make me happy. (Her words.) But didn't believe in it. I have a neurologist who swears by it. Most GI docs want to follow "protocal" and won't take the time to look at it. So it is very individual.

BTW: Be sure to read up on it yourself so you can answer questions etc before you try to talk a doc into it. Some are more approachable than others.

It’s a synthetic drug , similar to morphine it says when you Google that medicine.