Diagnosed with Crohn's but having weird symptoms

You are so young for all of this to be happening to you, I am so sorry to hear that. I am 52 and Irish/English and French Canadian.

When i get really sick i might lose a few pounds but i haven't had anything drastic at all.

Hello @jkellyjones and @lisa1965,

I'd like to add my welcome to @johnbishop's. John has provided some great information, (thank you), and I'd really encourage you to view the recent Gastroenterology & GI Surgery Page on Connect: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ where you will find videos and blog posts about Crohn's, ulcerative colitis and celiac disease, by Mayo clinic experts.

Here's another incredibly informative discussion on Connect, "Just diagnose me already gees...."https://connect.mayoclinic.org/discussion/just-diagnose-me-already-gees/ where @lillone43 and @heidisue write about similar symptoms, and the frustrations of no clear diagnosis.

@kaycigirl, we are THRILLED to see you return! How is your son coping with the Crohn's? Were you able to find a suitable gastroenterologist for him?

My son is doing well but we did have to put him on Remicade do to fistualuas. 🙁

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@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.

@jkellyjones Just read your not again about not having any skin ulcerations, etc. All of these disorders have a common characteristic. Whenever a symptom pops up, the doctor needs to be able to look up what percentage of proven patients present this particular symptom, AND what percentage of these presentations are actually traceable to this particular disorder. If you look at my story https://bit.Ly/1w7j4j8 "Amyloidosis Version 12" you will see that nearly all of my symptoms are presented by less than 100 of patients. Only a handful of these symptoms are presented by 100%. For instance, my sFLC( sFreeLiteChain) number of >1.8 is considered obligatory. If your Serum protein is not at 1.8mg/deciliter of serum, you may be ill, but you are not classed as diagnosed. But if you do not have purpura on your toes, or macular rash, it only means you do not have the purpura or the rash. It does not mean that you do not have that you do not have any form of FreeLiteChain Amyloidosis. Perhaps 60% have neuropathy, but the lack of neuropathy only means you might be part of the 40%cadre of FLC Amy patients without neuropathy. To make a long story short, that is why docs look for multiple symptoms and signs, and do so many tests. Diagnosis is tough work in the Amy community.

Hi @kaycigirl,

Glad to know that your son is doing well. We have some great videos by Mayo Clinic gastroenterologists, about Remicade. The videos are on the gastroenterology Page, on Connect; here's a link to a recent talk:
https://connect.mayoclinic.org/newsfeed-post/anti-tnf-agents-for-crohns-disease-1/

Please keep us updated about his progress, and do let us know if you have any questions.

Kelly: Can you please tell me what Medigap Insurance you have that covers infusions? Do they charge you for the medication which if so expensive? My Husband has been diagnosed with Crohn's and they want to do entivyo infusions, but our Part D Insurance (Prescription) Insurance costs $3500 for first treatment and $2,000 for the Second and Third Treatment. we applied for help through Taekada but were turned down. We have AARP, United Healthcare as Medigap.

I have not been diagnosed but I also had joint and all over pain, painful bloating, lower right quadrant pain, severe fatigue, hair and nail breakage, but no constantly fever. My right hip, leg, hand from the fingers to the shoulder aches with swelling, joint pain and I have three large lumps that moved from my wrist area to my elbow. My hand hurts constantly all day every day especially at night. These symptoms were related to the fact that I have Breast Cancer, but I am not for sure. I am in stage 1 of Lymphedema but being diagnosed with Chron or Lump Diseases. Frustrated because the doctors don't know what wrong with my arm and I have suffered with this for almost three months now. Very frustrated and tired of the whole thing.