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Diagnosed with Crohn's but having weird symptoms

Digestive Health | Last Active: Jul 31, 2023 | Replies (21)

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Hello @jkellyjones and @lisa1965, welcome to Mayo Connect. It sounds like you both have a lot going on and have similar health concerns. Autoimmune diseases can sometimes be hard to diagnose and everyone is a little different. Mayo Clinic has some good information on Crohn's disease, treatments and symptoms if you haven't already found it - https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304

I’d like to start by connecting you with other members who have experience with Crohn’s — either themselves or a family member. Please meet @bonitav @mswanda @kaycigirl @judylindholm @gillyk14 @thankful @spiderwebb @jay_baruch @guener @bonitav @joannem @chicoco @gillyk14 @kaycigirl, @tracyann @1228angela @oldkarl @amyk811; I am confident that they will join in with their insights and suggestions for you.

You may also wish to post your message in this discussion on Connect:
Crohn’s disease http://mayocl.in/2ummHmB

And, I would sincerely encourage you to view Mayo Clinic’s IBD blog, http://ibdblog.mayoclinic.org, where Mayo Clinic experts talk about Crohn’s disease & ulcerative colitis, and various treatments, ongoing research, current events.


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Replies to "Hello @jkellyjones and @lisa1965, welcome to Mayo Connect. It sounds like you both have a lot..."

Thank you John! I'm just confused and worried at this point since my most recent GI doc said he didn't see any evidence of Crohn's but I still have all these symptoms. I would love to hear from any of these crohnie's and see if they've ever had any experiences like that!

@jkellyjones One of most serious consequences of Crohn's and nearly all the other variations and mutations of Amyloidosis.
..Alzheimers, Gelsolin, Cystatin-C, Parkinsons, .... and the others (there are over 1,000), actually seems rather silly to me. It isn't, really, but it can give a person a good laugh at times, mostly at the expense of self-satisfied GPs. That is, it is easy to get all blubbered-up about having the symptoms of, say, Cerebral Cortex Amyloid fibril deposits with dementia, and then find out a week or two later, or a couple years later that you have Alzheimer's, which is rather different. Or you think you have Gelsolin, then a happenstance MRI comes along and you learn you have A-Cystatin-C. In my family we have A-Cys, A-Gel, Crohns, AL, Lupus, hATTRwt, Lysozome, and several more that we know of. Anyway, the diagnosis of any form of amyloidosis is a journey, and only a small portion of the actually eventually diagnosed before death, I believe. The percentage of accurate diagnosis is rising with the development of the Atom-Force Microscope and several other great tools. So I say, just keep pushing, and eventually you will know the truth. Demand the doctors work until they have pinned down the objective truth about your system. oldkarl

@jkellyjones . I've written some about my wife's Crohn's condition that started for her at about 45, nearly 20 years ago. For her it started with soars in her mouth & swelling of her lips and feet. Predisone was she was 1st put on which worked, but the side effects for her were not good. She was diagnosed having a fistula and had surgery for it soon after which really helped her out. She was on several of the earlier drugs that brought some help, but not until she was approved for Remicade did she get the results she hoped for. Although very expensive, our insurance covered most of her infusions since we met the deductible nearly after the 1st of the new year. Her Gastrologist was so pleased with the results that he became sure that she may not even have Crohn's anymore or perhaps never did? He recommended she have a special blood test that he told us was the "gold standard" for determining if she did. We agreed to go ahead with it and it came back negative and our initial reaction was of pure joy. He began weaning her off Remicade and within 6 months signs of Crohn's returned. She had a Colonoscopy and she was a mess! He was so sorrowful that he had put us through all of this and she was put back on larger doses of Remicade. The Remicade had worked so well that it had fully masked even the "gold standard" blood test.
She continue's her Remicade infusions every 8 weeks and for the most part are doing very well. She has been experiencing low energy mostly in the early evenings and some degree of what she refers to as brain fog. All in all things seem under control, but I do have concerns about the long time use of Remicade, but the results have given her the quality of life that anyone would hope for. All our best to you this Christmas season.