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jkellyjones
@jkellyjones

Posts: 6
Joined: Nov 30, 2017

Diagnosed with Crohn's but having weird symptoms

Posted by @jkellyjones, Nov 30, 2017

7 years ago, I was diagnosed with Crohn’s disease. I was diagnosed based on symptoms, what the doctor saw in my colonoscopy, and inflammation markers on the Prometheus IBD inflammation marker test. My biopsies came back negative and we didn’t do any other tests. We tried a few medications but only prednisone seemed to work. I went into remission when I became pregnant and weaned off prednisone slowly. Pretty much my whole life I have had diarrhea and nausea easily, kidney stones, and recurrent mouth ulcers that are very bad. When I was diagnosed I also had joint and all over pain, painful bloating, lower right quadrant pain, vomiting, rashes, severe fatigue, hair and nail breakage, and ran a fever constantly. I still have all these symptoms intermittently. A couple years ago I became very ill again. The new GI doctor was unsure of my diagnosis because he did not see anything on my current colonoscopy or CT. He decided to try an IBS medication as well as some Crohn’s meds. Again only the prednisone worked. I eventually weaned off all the meds and am trying medical cannabis (cbd) and trying lifestyle changes. However, I really want to figure out what is wrong. When I get run down or stressed and everything gets worse. My skin even hurts some days. I have joint pain in large and small joints. I get swollen lymph nodes (I even have one in my elbow right now) and I get a lot of muscle and joint pain especially on my left side- leg, hip, shoulder, neck, arm, fingers. I get rashes on my face, hands, and body but not a butterfly type rash. I get sores in my mouth and throat so bad it’s hard to talk and eat. I run low grade fevers easily and get diarrhea. The doctor ordered multiple urinalysis tests to see if any of my abdomen pain at the time was from kidney stones, but every time I just had high protein and nothing else. My WBC and CRP are normally high. They did ultrasounds to check my ovaries and uterus too. I feel anxious not knowing what is wrong with me. My question is – Could I have had that inflammation from another autoimmune disease and have been misdiagnosed? I keep finding similarities with my symptoms and lupus. Should I ask my doctor for some kind of testing for lupus or something else? Does anyone else have something that sounds similar?

REPLY

I have just been told that I have vascilitis and so many if your symptoms sound the same as mine. they are checking further for Lupus but the pain I have in my lower legs from ulcerations and rashes is excruciating. I took ten days of prednisone which helped stop additional rashes the the pain in my legs is still so bad. My left side seems to be more effected than thr right. I has a biopsy done on the skin where the ulcerations are and I have been waiting for days for the results. I have been on vacation and am so worried about going back to work with this pain. Not sure how I will make it through the day. I am now on a prescription for gout, I guess that is suppose to help the pain but I am still feeling it.

I don’t know if it’s also useful- I’m 30 now, 5’2, about 140 lbs, and I live in Montana. I’m of German/Welsh/Italian descent mostly. My Grandfather may have had an autoimmune disease and my mother was diagnosed with sero-negative RA. I didn’t start having all these symptoms until I was 22 and since have had eye and mouth dryness also, which I forgot to mention.

@lisa1965

I have just been told that I have vascilitis and so many if your symptoms sound the same as mine. they are checking further for Lupus but the pain I have in my lower legs from ulcerations and rashes is excruciating. I took ten days of prednisone which helped stop additional rashes the the pain in my legs is still so bad. My left side seems to be more effected than thr right. I has a biopsy done on the skin where the ulcerations are and I have been waiting for days for the results. I have been on vacation and am so worried about going back to work with this pain. Not sure how I will make it through the day. I am now on a prescription for gout, I guess that is suppose to help the pain but I am still feeling it.

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I looked that up and it does sound similar – I just don’t have any skin ulcerations and it sounds like my rashes aren’t anywhere near as bad as yours. When it flares up I have a hard time just sitting at a desk for a full day because everything just hurts and I feel almost like I have the flu. What kind of things are they doing to check for Lupus? I’m so sorry you are having to go through this!

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.

John

@johnbishop

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.

John

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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!

Hi Kelly, did you get to visit with others about the question you had?

@kaycigirl

Hi Kelly, did you get to visit with others about the question you had?

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I haven’t yet – have you had any of those symptoms? Or ever had all the symptoms of a flare with no evidence of the disease being active? I hate taking prednisone but it’s the only thing that helps when things get really bad so i was hoping if it’s actually something different we might be able to control or treat it better.

You do have a lot going on and some things do sound like Crohn but some don’t. I’m confused too.

You didn’t say anything about weight loss. That is huge with crohns.

@lisa1965

I have just been told that I have vascilitis and so many if your symptoms sound the same as mine. they are checking further for Lupus but the pain I have in my lower legs from ulcerations and rashes is excruciating. I took ten days of prednisone which helped stop additional rashes the the pain in my legs is still so bad. My left side seems to be more effected than thr right. I has a biopsy done on the skin where the ulcerations are and I have been waiting for days for the results. I have been on vacation and am so worried about going back to work with this pain. Not sure how I will make it through the day. I am now on a prescription for gout, I guess that is suppose to help the pain but I am still feeling it.

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I was told they would be doing additional blood tests for the lupus byt also the skin biopsy is supposed to reveal if there are other issues. I will find out tomorrow.

@jkellyjones

I don’t know if it’s also useful- I’m 30 now, 5’2, about 140 lbs, and I live in Montana. I’m of German/Welsh/Italian descent mostly. My Grandfather may have had an autoimmune disease and my mother was diagnosed with sero-negative RA. I didn’t start having all these symptoms until I was 22 and since have had eye and mouth dryness also, which I forgot to mention.

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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.

@kaycigirl

You didn’t say anything about weight loss. That is huge with crohns.

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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?

@kanaazpereira

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?

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

Sent from Yahoo Mail on Android

@johnbishop

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.

John

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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

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