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08-06-2011, 09:24 AM   #1
Daunting
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Join Date: May 2011
Ulcers

Hi.

Quick question

I had a colonoscopy and they found small ulcers of the TI and was told it wasn't crohn's because of the type they were.

Anyone else had ulcers and were told it wasnt crohns'??

thanks
08-06-2011, 10:32 AM   #2
archie
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Join Date: Oct 2010
Hi I had a scope last week that found ulcers at TI resection site but just waiting for results of biopsies so will know more on the 17th and I'll keep u posted. Im hoping they're not active crohns as I really really don't want to take any maintenance meds since I've had surgery but I do get occ pain there and a few other crohnsy symptoms. Do u have any symptoms at the mo?
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Archie

Diagnosed Crohn's 2010
ileocecal resection 2010
Meds: Nil and in remission

08-06-2011, 11:14 AM   #3
Daunting
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Join Date: May 2011
Thank you for replying.

I have had diarrhea and abdominal pain for over a year now.
They took bopsies of my TI and they came back inconclusive for crohns, Acute ilietis, the doctor wrote possible infection vs early ibd further clinical correlation is recommended. All other biopsies came back okay. That was my second colonoscopy findings my first was Acute ilietis unspecific changes.
Both done in diffrent hospitals and in different cities.

I wish you the best and please keep me updated,
Do you have any symptoms???
08-06-2011, 11:51 AM   #4
archie
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Join Date: Oct 2010
Hi Daunting I get occasional symptoms of diarrhea, sore stomach, cramps, mild fatigue and rosy right cheek!!! but in general I feel great nothing compared to last year. Before the resection I was ill pale nauseous moderate pain etc but then I had an abscess which turned into a perforated bowel I also had a raised CRP for months so all of those symptoms have gone. My initial CT showed bowel wall thickening of the TI (1 foot) and duodenum. I had a series of investigations which all came back conclusive of crohns, and then the pathology report from the surgery confirmed it for definate!!

I hope you feel better soon and get some answers. Before last year I had NO symptoms of IBD so it all came on very suddenly.
08-07-2011, 07:46 AM   #5
Daunting
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Join Date: May 2011
Thank you for your reply.

So you were diagnosed with crohns prior??

As for my self no diagnosis yet, I am hoping on my next visit he will say something, he will have all of his tests completed by then and the only thing left for him to say is to do some repeat tests or to try some different meds out. I will for the latter I am tired of taking tests, I have done way too many so far. I think I have been exposed to way too much radiation so far to last me my life time, but I know there will be more coming.

Sorry for being so negatrive, but I had a rotten weekend so far.
08-07-2011, 12:19 PM   #6
archie
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Join Date: Oct 2010
Hi Daunting thats rotten for you I felt like that last year after I was diagnosed and before they put me on prednisolone. Are you taking any medication yet?

I was pretty much diagnosed after my 1st CT scan but my GI was a little bit cautious at that stage as he wanted more tests etc to confirm it esp a colonoscopy. After the pred kicked in I started to feel better but the surgeon always wanted me to have a resection done so eventually I agreed and I really did feel so much better after and still do although as the months go on I'm starting to get a few niggles again and thats when they did another scope which showed the ulcers at the TI so i'm just waiting now for the results. It's only mild so i'm not too worried but I don't want to go back to square 1 like last year.

Hopefully you'll get some answers soon it seems to be pretty standard that getting a diagnosis of IBD takes a while and then getting the right meds is trial and error. You will feel better at some stage I just hope it's not too long.
08-07-2011, 07:35 PM   #7
Daunting
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Join Date: May 2011
Hi Archie.

Thank you for your words of hope. I do hope things improve soon. I'm just finding it so hard to believe that he won't believe its crohn's even though there was ulcers no inflammation. He seems to think there is something else, he even sent me an endocrine tumor test, he was looking for a gastrinoma. I'll get the results next week but I doubt there is anything to be found.
Only thing i'm on so far is Salofalk and that isnt helping.

thank you again.
Its nice to talk to someone
08-08-2011, 01:56 PM   #8
archie
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Join Date: Oct 2010
oh I do hope they don't find anything like that, they found a carcinoid tumour on my appendix when I had the resection, it hadn't shown up on any of the scans etc so it was a bit of a shock but they have assured me that it was tiny therefore benign and totally incidential and nothing to worry about. Of course I do worry and any tests I have done now it is always in the back of my mind. I asked them if this caused the crohns but they said no and vice versa I just think its a bit more than a coincidence!!! good luck with the test results and that they give you meds soon. What tests have they done so far?
08-08-2011, 03:08 PM   #9
Cat-a-Tonic
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Hi Daunting, did the doctor say what type of ulcers they were? If it's not Crohn's ulcers, did the doc say what could be causing them? You might want to call your doctor and get some clarification. Did they do biopsies of the ulcers?
08-09-2011, 09:34 AM   #10
Daunting
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Join Date: May 2011
Hi. Archie.

The type of tests I have had so far are:
2 colonosopies (april 2010, february 2011)
2 Endocscopies (February 2011, and and ultrosonic endoscopy in July 2011)
Ct scan in November 2010, another scheduled for Aug 19
Several blood tests
Small bowel follow through in August 2010, he is thinking of doing another YUCK!!
WBC Scan, (awaiting results)
Endocrinic nuclear tests (results just back showing small shadow above right kidney, usually a normal variant but being sent for a ct scan to be sure)
Pill Cam April 2011
Lower and upper abdomen ultrasounds.

I think that is all, I know there has been so much, the phycologist actually wants me to take a break from the tests for a bit. All are coming back inconclusive or negative. And the radiation is hard on the body and the stress as well.

Hi Cat-a-tonic.

The doctor never did tell me what kind of ulcers they were, he just said small patchy ulcerations. The biopsies that were taken said acute ileitis non specific, all it said basically was infectious vs early inflammatory bowel disease clinical correlation is recommended. The doctor said that many things can cause ulcers and more than one specialist has told me that, but it still doesnt explain my pains and diarrhea.

Thank you all

Last edited by Daunting; 08-09-2011 at 07:39 PM.
08-10-2011, 09:53 AM   #11
Cat-a-Tonic
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Daunting, you mentioned a shadow above your kidney - is the shadow near where the adrenal gland is located? If so, you may want to look into being tested for Addison's disease, which is an insufficiency of the adrenal glands. I was tested for Addison's last year because my GI said that it can cause IBD-like symptoms (nausea, abdominal pain, diarrhea, etc) and it also responds to prednisone the way that IBD does. My Addison's test was negative, but I'm glad I had it done so that I could rule it out at the very least. You might want to ask your doc about it, the test I had was called the ACTH test. Many doctors don't know much about Addison's as it's fairly rare, so your doctor may not have even considered it as a possibility.
08-10-2011, 11:18 AM   #12
Daunting
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Join Date: May 2011
Hi

I've never heard of it. What does it do and what kind of test was that you went for what was involved.??

Thanks
08-10-2011, 11:50 AM   #13
Cat-a-Tonic
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Here's a link regarding the ACTH test:
http://en.wikipedia.org/wiki/ACTH_stimulation_test
Basically it's a long blood test. They take your blood to get a baseline reading of your cortisol level, then they inject you with this stuff that makes cortisol rise in normal people but not in people with Addison's. Then they check your blood every half hour or hour for a few hours to see what your cortisol is doing. I think it took 2 or 3 hours for me to have this test. It's an easy test, just basically a series of blood tests, no prep involved.

Here's a link to more info on Addison's disease:
http://en.wikipedia.org/wiki/Addison's_disease
I have low sodium which is another reason they tested me for this illness, but apparently I don't have it.
08-11-2011, 12:35 PM   #14
Daunting
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Join Date: May 2011
Hi.

Thank you for the advise, I will ask my family doctor next week on what he thinks. I was doing some reading about it and apparently it is rather rare. I do have some of the symptoms and some I do not. If the test isn't hard to have done, maybe my family docotr will agree to send me for it.

Thank you again. Wish me luck.
08-17-2011, 10:25 PM   #15
archie
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Join Date: Oct 2010
Hi daunting quick up-date my biopsies from the ulcers were all normal no re-occurring crohns which I'm just elated about as that means no meds, he said it was just very mild inflammation. I hope your feeling a bit better.
08-18-2011, 07:14 AM   #16
Daunting
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Join Date: May 2011
Hi Archie.

At least you received an explaination, all I was told was that it could be crohn's or the start or not at all.
I just got my results from my WCB nuclear scan and it showed very very small amounts of inflammation in my ileum. The doctor who figured out the tests wrote that the amount of inflammation detected is so minimum that if it is crohns it is extremely mild or it could be the start of the disease or not at all.
Still no answers for me.

Thanks for your post I am really happy that things are going better for you.

Take care.
08-18-2011, 08:13 AM   #17
archie
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Join Date: Oct 2010
Hi Daunting it's so frustrating for you and regardless of your diagnosis your still suffering so I hope you get some sort of treatment soon that works. After reading all the stories here of undiagnosed people in a lot of pain I really do count myself lucky that I had a perforation so was diagnosed very quickly and given treatment and surgery which seems to have rectified the situation. I'm not under any illusions that it won't return some day but for now I'm relatively good, although i was at the loo all last night with bad runs and tummy pain!!! I think it's more a side affect of the surgery now. Hope you get some concrete answers soon ..(hugs)..
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