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07-17-2016, 02:08 PM   #1
nel123
 
Join Date: May 2016
Is it ibd or not?

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.
07-17-2016, 02:56 PM   #2
ronroush7
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I would visit the doctor who is farther away when you aren't feeling well. Let us know how you are doing
07-17-2016, 09:30 PM   #3
Trysha
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I agree with Ron
It would be better to return to the original doctors who diagnosed and treated you.
Although the evidence is there from the scar tissue and the healed area you still have evidence of inflammation with the raised CRP..".although this test is not specific for IBD.Also
It appears that your liver enzymes are raised and this needs investigating.
A pill cam is a very good test and it is likely the GI is on the right diagnostic track
It could be as you say the distance to him at an appropriate time of active symptoms.does not fit for you.
Feel better soon
Trysha
08-01-2016, 06:33 AM   #4
nel123
 
Join Date: May 2016
I agree with Ron
It would be better to return to the original doctors who diagnosed and treated you.
Although the evidence is there from the scar tissue and the healed area you still have evidence of inflammation with the raised CRP..".although this test is not specific for IBD.Also
It appears that your liver enzymes are raised and this needs investigating.
A pill cam is a very good test and it is likely the GI is on the right diagnostic track
It could be as you say the distance to him at an appropriate time of active symptoms.does not fit for you.
Feel better soon
Trysha
Thank you, Trysha. the pill cam test is very expensive, but i guess its my last option.
08-01-2016, 06:34 AM   #5
nel123
 
Join Date: May 2016
I would visit the doctor who is farther away when you aren't feeling well. Let us know how you are doing
Thank you, Ron. My dr is literally in another country :-/ But i will do that if need be. he is a great doc!
08-01-2016, 06:37 AM   #6
ronroush7
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Thank you, Ron. My dr is literally in another country :-/ But i will do that if need be. he is a great doc!
Ouch. I am sorry he is so far away.

08-01-2016, 09:21 AM   #7
JenS
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Crohn's is tricky...And getting a DX is not easy! I'm sorry you are frustrated. I have had bleeding on and off for 18 years, yet my chart still reads "Questionable Crohn's". (But in my gut, no pun intended, I know it's IBD. I have joint pain, intestinal bleeding, etc.) I have had 8 Colonoscopies during this time. Sometimes they show inflammation and sometimes they are normal. WEIRD, huh!?
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Mild Crohn's 1997-2004
Bloody diarrhea, Pain in lower right stomach

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Felt great for many years...Married and had two kids during remission!!

Symptoms, No Treatment 2013-2015
Occult blood in stool, Joint pain, Anemia, Fatigue, Pain in upper right stomach

Currently Flaring 2016
Bloody diarrhea, Pain, Elevated liver enzymes, Hip/back pain
08-08-2016, 03:33 PM   #8
DougUte
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The inflammation would have been down because of the course of steroids. Attacking inflammation is what they do.

I would go back to the dr that originally diagnosed you. Even if he is that far away. I think they are on the correct path. Good luck to you.
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