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Crohn's Disease Forum » Support Forum » Undiagnosed Club » 2 drs say its crohns, 1 isnt sure. What should i do??


07-16-2016, 06:31 AM   #1
nel123
 
Join Date: May 2016
2 drs say its crohns, 1 isnt sure. What should i do??

Hi guys,

I hope you can give me a bit of insight. I had two colonoscopies/endoscopies last year around September/October after i suddenly fell sick and ended up in hospital due to excruciating abdominal pains and pain in the middle of my chest.

The scopes showed quite a lot of inflammation throughout the majority of my GI tract (rectum,colon,stomach). The drs treated me for IBD and i got better.

Then in December, I started getting more symptoms; canker sores, nausea and vomiting, abdominal pains and frequent bowel movements. I spent about 4 days vomiting every thing i tried eating or drinking, even water. I started seeing another doctor who referred me to a specialist for further treatment as i stopped responding to the Asacol they had given me. I started getting mucus when i poop (which conveniently didn't show when I had my stool tested)

Now, with this new dr i am seeing, he is not completely convinced of the diagnosis. He scoped me and there was no inflammation (btw, this was after a short course of steroids after i was hospitalised for 3 days after a flare up) but there was scar tissue and ulcerations. I must add that the specialist dr is like 6 hours away from me so i only see him when i am better, which makes it difficult for him to 'see' me when the disease is active/when i am really feeling unwell.

My blood results show high GGT and ALT and CRP was also a bit high.

I am just so frustrated at the confusion surrounding this and dont know what to do.should i just stick with the previous drs who diagnosed me or should i keep searching for answers at this far away doctor?? i am gonna move to be closer to him in case the illness 'flares up' so he can see me when im bad. but what if i dont flare up???? i dont wanna spend more money on tests. he's recommending a pill cam but i am just so tired of everything. I really just wanna give up.
07-16-2016, 08:19 AM   #2
my little penguin
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Asacol is a 5 Asa and only treats the surface layer of the intestine but crohns affects all layers of the intestine so it is not recommended as a monotherapy treatment for crohns .
Typically most docs recommend waiting 6-8 weeks after steriods to see where the intestine is at for scopes since steriods will heal the damage only to show up later if not treated with maintanence meds
Were the original docs who dx Ibd Gi specialists ???

Or even gi doctors ?

I assume the new specialist is a Gi doctor ....

Can you get a second opinion ?
The problem with looking at the Gi tract after your on meds is the meds essentially fix the issue so that makes dx extremely tricky .

A colonscopy can show acute ( as in your currently flaring ) changes
And chronic ( inflammation) has been going on for a while
So you don't have to be flaring
Steriods will wipe out any acute changes and depending on how long may wipe out chronic changes seen on biopsies
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07-16-2016, 12:40 PM   #3
nel123
 
Join Date: May 2016
yes one of them was a GI specialist. My current doctor is a GI specialist too.

I wish I had the energy to seek a second opinion, I just wonder how many times I am going to have to see a different doctor for a second opinion.

Doesnt the scar tissue they found mean anything though?
07-17-2016, 11:54 AM   #4
ronroush7
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Is there a GI who is close that you could go to for a second opinion?
07-17-2016, 02:05 PM   #5
nel123
 
Join Date: May 2016
Is there a GI who is close that you could go to for a second opinion?

Unfortunately not :-(
07-17-2016, 02:07 PM   #6
ronroush7
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I am sorry.

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Crohn's Disease Forum » Support Forum » Undiagnosed Club » 2 drs say its crohns, 1 isnt sure. What should i do??
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