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Does anyone suffer from Crohn's or colitis?
Autoimmune Diseases | Last Active: 2 hours ago | Replies (109)Comment receiving replies
Thank you for that information and I agree 100 percent with everything you said .
I’m still searching after 10 years and 6 Gastro Dr’s , so many tests done ☑️ even over and over .
So many diagnoses , tried everything RX , holistic, supplements . My symptoms are getting worse every year . Esp the last year and esp last 6 months .
I’m at a loss .
Now just suffer through my days , can barely eat , throw up a lot . Had that doubled over diverticulitis pain yest that put me to my knees crying for hours .
Been to Mayo Clinic in Jacksonville in 2021 . Live 3 hrs away .
My most recent Gastro is 1 hr 15 min away but she’s all book smart only .
I’m not able to enjoy anything in this life anymore ( have such chronic fatigue now too ).
62 years old … lost a decade .
Looks like no one out there can actually help me .
Glad you are doing a bit better.
I’d take 1 day a week relief but it never happens.
Replies to "Thank you for that information and I agree 100 percent with everything you said . I’m..."
@rozy288 @downhillhtr49 Welcome to Mayo Clinic Connect! You’ve come with a real problem, haven’t you? I can’t believe the doctors aren’t helping you deal with your pain!! Is it just a deaf ear when you complain? Have you tried going to a comprehensive medical center/university teaching hospital? the doctors there are more knowledgeable than local doctors. That doesn’t mean that local doctors aren’t good, they just want to have time off! I addded the link to Mayo Clinic care network. These hospitals work closely with the Mayo Clinic.
https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
I don’t know if any of these hospitals are near, or, at least, no worse than what you’ve been doing. they all have working relationships with Mayo Clinic and share in their research, etc.
Rozy, if you are still looking for a good gastroenterologist, call GARD. https://rarediseases.info.nih.gov/. They keep a list of good autoimmune doctors
Will you let me know when/if you have luck and start feeling better!?
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I have started infusion with inflexemab or remicade.
The oldest biologic - so I’m told. They know more about it than other biologics.
Some not so good things in the possible side effects, but, I was told by people who I trust, not to spend much time/energy worrying about them.
Besides, my life was so deep in pain, I didn’t feel I had much to lose.
I’ve only had two ‘start up’ infusions my 3rd full dose infusion is on August 8th.
I am much better, except for the pain. No better but maybe even a little worse.
I’ve read that improvements only Come after the second or third infusion. So fingers crossed!
You might inquire about that.