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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Any thoughts please?


06-14-2013, 07:18 AM   #1
snowiezip
 
Join Date: Jun 2013
Any thoughts please?

Hi,

I am new to this forum, hello everybody

I have no idea what's going on right now and hoping someone could help out. So far I had a colonoscopy which showed inflammation and ulceration, also had an endoscope test which has shown up a hiatus hernia, more inflammation and gastritis was mentioned aswell. Previously my calprotectin was in the region of 500+, I am not on any meds and waiting on diagnosis. Just feeling so tired all the time and desperately want to get well.
06-14-2013, 08:11 AM   #2
Johnnysmom
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Sounds like IBD if they found inflammation and your fecal cal was high. They should have done biopsies which will tell you a lot more. For us it took about a week to get that information back. Until then, unless the scope has made symptoms worse, or if things were really inflamed they will wait till biopsies are back to prescribe meds.

If there is patchy inflammation anywhere other than just the colon it would most likely be crohn's disease. They will look for granulomas to confirm this. If just your large colon is inflamed pretty completely this would lean towards an ulcerative colitis diagnosis. There are other things that can cause inflammation so biopsies are important. We were told my son had crohn's right after the colonoscopy and scope and before biopsies were back. Did your GI give you any information after your scope?

Good news is that once you start medication you should feel a lot better quickly. It takes a long time (for us a year) to feel normal again and sometimes to find the right med for you but you should get to feeling better than you are right now soon.

Being tired can often be from not absorbing vitamins correctly. We started my son on a gel multi-vitamin and vitamin D3. The gel vitamins are more easily digested. Have you had any blood tests for vitamin or Iron deficiency? The Iron can take a few months to correct, but you don't just want to start taking it, talk to your Dr. first.

Good luck and I hope you get some answers soon!!
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06-14-2013, 09:24 AM   #3
snowiezip
 
Join Date: Jun 2013
Hi, Thanks for your reply.

I shoulda said the Dr took biopsies, just waiting on results coming back (anywhere up to 6 weeks). Straight after the procedures were done the Doc explained what she had found and asked if there is a history of IBD in my family which there isn't, can't remember much of what else was said with sedation etc. At the moment I don't have a GI DR, currently waiting on a referral to see 1. I just feel I want some answers and to move on with life, I'm sure everyone has felt like that at one point its just so frustrating. The part I'm confused with is the inflammation in my stomach unrelated or could it be crohns or UC?
06-14-2013, 09:38 AM   #4
Clash
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Sometimes CD is present in the stomach, causing gastritis, or it could be due to H. Pylori or other things.
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C age 19
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PAST MEDS: remicade, oral mtx, humira
06-14-2013, 09:41 AM   #5
snowiezip
 
Join Date: Jun 2013
Hi Thanks for that, the Coi test came back neg. So confused right now.
06-14-2013, 09:43 AM   #6
Susan1978
 
Join Date: Jun 2013
Location: Ohio
Hi there,

Am so sorry you are so ill. It can be so frustrating and scary to wait for answers, especially when you aren't feeling well and want nothing more than to get better. I was always told that Crohn's can affect you anywhere in the digestive system, from the mouth to the anus, whereas UC just effects your large intestine. So it is possible that the inflammation in your stomach could be Crohn's. Figuring out the ins and outs of these diseases can be so overwhelming. But keep your head up, you will find a load of support and information here and a large group of very friendly people as well! Once you get a diagnosis, it really does get a little easier. Hang in there
06-14-2013, 04:30 PM   #7
Johnnysmom
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My son had inflammation in his stomach too. The biopsy came up at "indeterminate" but the GI felt strongly it was crohn's since he had inflammation everywhere else too. He was taking a lot of Advil (NSAID's) at the time for his pain. And I mean ALOT, around the clock. So that very well may have put the ulcers in his stomach. I don't think we will know for sure until next time they scope him because I no longer give him advil.

My son took a PPI (Proton pump inhibitor) for the ulcers in his stomach. Also helped once the GI put him on Prednisone because that can be hard on the stomach too. This will make digesting vitamins a little more difficult so if you ask your DR. and he puts you on one try to take vitamins with orange juice at a different time than taking your PPI.

And I forgot to say,"welcome to the forum" There are so many great people and I have learned more from them than anywhere else.

Hope you are feeling better soon!!
06-14-2013, 04:41 PM   #8
zelsabbagh
 
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Join Date: Jun 2013
Location: winona, Minnesota
Hi all
My son 12 years old just got diagnosed with CD he had inflammation all over his GI system , the DR decide to use Remicade as a treatment , what should we expect with this medication , he has been tired , lost allot of wight and have severe pain in the joints

Thanks
Zaid Dad
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