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Crohn's Disease Forum » Your Story » New member and here's my story


06-29-2017, 08:20 PM   #1
Nettsis
 
Join Date: Jun 2017
Location: Lamar, Colorado
New member and here's my story

Hi all. I'm Lori from Colorado. It's possible I've had Crohn's for the better part of my life, but wasn't officially diagnosed until 3/2016. I had my first flare (or what I call the episodes) in May 2004, 2 months after I lost my daughter. Not a post for sympathy, but for those asking what caused their first flare, mine was most definitely stress combined with severe emotional distress and grief. I was hospitalized in March 2016 with a perforation and after a CT scan it was official.
From the first flare in 2004, I have has so many and am just coming off of one now. I have all the issues daily-multiple trips to the bathroom, sometimes diarrhea and sometimes perfectly normal..just 5-10 times a day. However, I have had periods when I had no bowel movement for 5 days, but no flare. Weird? I have pain when I eat and pain when I don't, but it's not constant. Crohn's is auto-immune-i also have low thyroid and lichen sclerosus, both also auto-immune. I have terrible neck and back pain with no explanation via MRI and I get random stabbing pains in my legs, arms and sides. My flares put me in bed for hours to days. Once or twice a week to one every 3 months. I have a very high tolerance for pain, but these flares feel like 3rd stage back labor. No bowel movement during, but in the past, as soon as I could have any kind of bowel movement, the pain would go away. Not the case currently. Fever, dehydration, such severe chills that my muscles were seizing and violent vomiting. And labor pains. Contractions coming every minute and lasting at least a minute, all above and level with my naval. If it is Crohn's because the inflammation is in the ileum, then why does it hurt so bad in other places?
Treatment has been minimal with GI-very far away. She has me on a steroid and NSAID for the gut and something for the cramping that doesn't really work. Have to follow up with her soon to review MRI of my pancreas because of a spot. Lovely.
Anyway, I think I've covered everything. Sorry for such a long post.
06-29-2017, 08:36 PM   #2
Maya142
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Have you considered a second opinion? NSAIDs should not be used for people with Crohn's in most cases - they can actually cause flares and make inflammation in the bowel worse.

For the back and neck pain - have you seen a rheumatologist? There is a specific kind of arthritis that is associated with IBD called Spondyloarthritis. It often affects that lower back (lumbar spine or SI joints), hips, knees and neck, though really any joint can be involved. Symptoms include morning stiffness, pain that gets worse with rest and better with movement, red, warm or swollen joints.

The stabbing pains in your arms and legs could be from a deficiency - have you had your B12 level checked recently?

It sounds like you are a pretty complicated case, so I would recommend a second opinion at a university hospital that has a good IBD program. I would also see a rheumatologist if you continue to have back and neck.

No bowel movement during, but in the past, as soon as I could have any kind of bowel movement, the pain would go away. Not the case currently. Fever, dehydration, such severe chills that my muscles were seizing and violent vomiting. And labor pains. Contractions coming every minute and lasting at least a minute, all above and level with my naval. If it is Crohn's because the inflammation is in the ileum, then why does it hurt so bad in other places?
The pain you describe could be a partial obstruction. I hope others will chime in soon with more info about that.

Good luck!!
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
06-29-2017, 09:11 PM   #3
ronroush7
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Welcome. I agree with Maya 142.
06-29-2017, 10:43 PM   #4
cmack
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I agree too.
07-03-2017, 05:02 PM   #5
CReome
 
Join Date: Jul 2017
I have had Crohn's for about 10 years. I don't really have a lot of flares where I'm on the toilet. I have it in my joints. Well 14 days ago my doctors prescribed prednisone and Apriso. My feet are so swollen and I can't really walk cause the bones hurt so bad. I have been on prednisone a lot of times and it has been a miracle drug for me. Can Apriso be the one that is causing all of my joint pain. It now is in my feet, knees, wrist, elbow and back. My bones hurt so bad it's hard to move. Has anyone had these problems.
07-03-2017, 08:41 PM   #6
cmack
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Hi CReome,

Welcome, you have found a great place for support and friendship. I would tell your doctor about these problems. You might be having a bad reaction to the Apriso. I'm not sure, but I think you better check and see if that is the cause. I'm always very wary of new meds as I have had some wild side effects as well.(some were very scary)

Best wishes,

Chris
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