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Crohn's Disease Forum » Support Forum » Undiagnosed Club » All symptoms but still undiagnosed 😢😢


09-14-2017, 05:58 AM   #1
Mulv2222
 
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All symptoms but still undiagnosed 😢😢

Just back from another GI appt and still no diagnosis. Apparently ulcers in my terminal ileum, chronic inflammation, diarrhea, blood, fatigue, severe pain etc isn't enough for a diagnosis.

Doc has prescribed amitriptyline which may help with the pain but doesn't actually treat the condition as he 'can't' say for sure what the condition is. Feel so fed up 😢
09-14-2017, 06:18 AM   #2
ronroush7
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Hi. I am sorry you dont have a diagnosis yet. Keep after the doctor to get a diagnosis. I wish you the best. You know your body better than anyone else. Let us know what you find out.
09-14-2017, 07:37 AM   #3
Jabee
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Gosh! What on earth does your GI say is causing the inflammation and ulcers? It sounds like fairly classic crohn's. I just don't understand doctors sometimes. What tests have you had? Sounds like you've been scoped; what is he basing his non-diagnosis on?
09-14-2017, 07:58 AM   #4
Mulv2222
 
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Gosh! What on earth does your GI say is causing the inflammation and ulcers? It sounds like fairly classic crohn's. I just don't understand doctors sometimes. What tests have you had? Sounds like you've been scoped; what is he basing his non-diagnosis on?
I know 🙁 that my inflammation could have been caused by the bowel prep and lots of people have ulcers in their small intestine...even though the inflammation they found was chronic in nature being that is been there a long time. I questioned if 'lots of people' also have all the other symptoms too? He said maybe it was IBS. I said that I thought IBS didn't cause bleeding, inflammation or ulcers, he said yes that's true usually...

Not sure where to go from here 🙁🙁😢
09-14-2017, 09:04 AM   #5
Jabee
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Wow! Can you find a new GI? To the best of my knowledge ulcers are not normally present in the small intestine. And in any event the ulcers should be treated. The small intestine is where nutrients are absorbed! If it's ulcerated then it can't do its job. Please find a new GI (I know that can be hard in the UK). I'm so sorry.
09-15-2017, 03:01 AM   #6
Mulv2222
 
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Thanks. It's such an uphill battle. At least they have referred me for an X-ray on my sacrailloc joints/pelvis. I'm in so much pain with that. I'm a bit concerned that an X-ray won't show inflammation if it's arthritic pain which i believe it is...
09-15-2017, 07:21 AM   #7
Jabee
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The CT scans I've had while in the hospital for crohn's have revealed mild sacroiliitis, but I think you need an MRI to determine if there is inflammation. X-rays only show damage that has been done, not ongoing inflammation. Maya142 has two daughters with ankylosing spondylitis and knows much more than I do. But I know MRIs can be hard to get in the UK. Here in the US it all depends on how good your insurance is, which is tied to your job (and I could go on for hours about what that means for many people: inadequate care and high medical debt for those who can least afford it).

Have you been referred to a rheumatologist at all? That might help get you the proper treatment for your back/pelvis.
09-15-2017, 04:20 PM   #8
Maya142
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You do need an MRI to determine if there is inflammation in your SI joints. If there is, you may have a type of inflammatory arthritis associated with Crohn's, called Spondyloarthritis. Ankylosing Spondylitis is a type of Spondyloarthritis and that does show up on x-ray. But for the earlier stages of the disease (called non-radiographic axial spondyloarthritis), there isn't enough damage to show up on x-ray, but inflammation does show up on MRIs.

Only damage shows up on x-rays and it can take 8-10 years of inflammation for damage to occur, so that's why x-rays aren't the best tests. Generally they will do an x-ray first, and if that's clear, an MRI is ordered.

Other symptoms would be joint pain, swelling and morning stiffness. Pain that gets worse with rest (sitting, sleeping) and better with movement is characteristic of inflammatory arthritis. In Spondyloarthritis, any joint can really be involved, but the sacroiliac joints are very commonly involved. Hips, knees, ankles are also often involved. Enthesitis - inflammation where tendons/ligaments insert into the bone - is also common.

SpA is associated with Crohn's and can actually cause "subclinical" gut inflammation. This is sort of like a very mild version of Crohn's - doesn't usually cause symptoms. They found that if they scoped people with SpA or AS, something like 60-70% had gut inflammation and even small ulcers, many without symptoms. Some had what they call "overt" IBD - bad enough to be classified "real" IBD.

It is very hard to distinguish between subclinical gut inflammation caused by AS and by gut inflammation caused by Crohn's, so I think generally if they found ulcers and inflammation, they would (and should) just treat it as Crohn's.

There are some treatments that are common to both diseases, like anti-TNFs.

I would also get a second opinion because I think if you have all those symptoms and visible ulcers and inflammation, it seems VERY unlikely that it's just IBS. I don't know the UK system well, but hopefully someone who is from the UK and can advise you will chime in soon.
__________________
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
09-30-2017, 06:49 PM   #9
oakley
 
Join Date: Sep 2017
Location: Lincoln, Nebraska
WOW you have just described about everything I have gone through of the past year
Maya142 I have had two CT's w/contrast that have shown inflammation in the small intestines and one endoscopy / colonoscopy which was clear. I injured my back 8 months ago and have severe right SI joint pain had an MRI at the time didnt show much then have had PT doesnt really help at all and still have bad pain... other joints hurt as well ANA of 72 and anca Iga of 52 arthis Dr said I'm fine lol taking budesonide but still undiagnosed very frustrating
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