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09-06-2011, 09:38 AM   #1
Daunting
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HI everyone.

Thought i'd give you all a little update. Over these past summer months have been going through so many tests. I have finally completed my last one on August 19 and got my test results, and it still appears they don't know.

WBC scan - mild mild inflammation on the right lower bowel area, the radiologist wrote could be normal or mild mild crohns.
CT Scan - within all normal boundaries
Endocrine Nuclear test - normal, small shadow above right kidney but normal with that test- ct scan was one afterwards to clarifiy Normal as well.
Numerous Blood tests - normal.
Endoscopic ultrasound to test my pancreas and gallbladder - normal
Colonosocpy in February - small ulcers found in the ileum, colon normal
Pill cam April - normal
Endoscopy in February - normal
More blood tests normal
Celiac panel testing - normal
Ct Scan November 2010 normal.
Barium swallow through - normal.

I go see my family doctor tomorrow after work, on my last visit he said once all my tests results were back he was going to personally contact my Gi to see what will be our next steps. My family doctor on my last visit said he isn't even sure anymore if it is crohns or not, all of my tests are either coming back normal or inconclusive. He is leaning towards IBS, that famous don't know disease. When doctors are sure what it is its given the name IBS.

And I'm sure there are a few other tests I've had but don't remember.

I guess I'm still playing this waiting game. Don't get me wrong I"m happy the test come back negative but some kind of direction would be really nice.

Thanks for listening.
09-06-2011, 01:32 PM   #2
Mayflower537
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Have you been treated with any of the typical IBS drugs? Have you gotten any relief from them? Did they do biopsies of the ulcers in your ileum? What did that show?

LOL a lotta questions there.
09-06-2011, 02:47 PM   #3
Daunting
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Hi Mayflower,

I Don't mind the questions at all.

I have tried alot of typical IBS drugs, I was on Modulen for about 5 years it was the best thing, but that was when I ha constipation issues, now it is diarrhea. I have tried dicetel, and a few others I don't remember their names. I had some relief with pain issues but not with the diarrhea. Yes they did do biopsies of the ulcers found in my TI and they came back unspecific both times. My first colonoscopy was done in my home town and the tests results came back unspecific acute ilietis, the second colonsocopy was done in a different city about a year later and the tests came back acute ilietis unspecific infectious vs early ibd and both said further clinical correlation is required.

I have been on lomotil for the past 3 months with some help but not enough.
09-07-2011, 05:51 PM   #4
Daunting
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HI...... Just came back from my family doctor.

Indeed the secretary was right the Ct Scan came back normal. I was disappointed and my doctor said I shouldnt be its a good thing for tests to come back normal. Sometimes I wish they could see it my way, that at this phase of my life I'd like to see some type of results come back negative so I could start to feel better.

My family doctor is planning on getting in touch with my Gastro in the next couple of days, I have another appt with my family doctor on September 21. He said he plans on asking the Gastro what are his plans for me including possible medications. My family doctor is speculating that I do have a crohn's but a very very mild case which isn't showing up on my tests but is enough that it aggravates my already existed IBS and diverticulosis.

So either I get news from my family doctor or the gastro will want to see me after the talk he has with my family doctor.

I'm so hoping for something in the next few weeks.
09-08-2011, 05:55 PM   #5
Volcom
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HI...... Just came back from my family doctor.

Indeed the secretary was right the Ct Scan came back normal. I was disappointed and my doctor said I shouldnt be its a good thing for tests to come back normal. Sometimes I wish they could see it my way, that at this phase of my life I'd like to see some type of results come back negative so I could start to feel better.
Wow you have had your fair of tests haven't you. How long have you been having the Crohns sypmtoms?

That one paragraph you said! I can totally relate to that!
I hate hearing that, it kills me to hear that.
Yes I am happy I don't have cancer.... BUT I WANT ANSWERS!!!!
09-11-2011, 10:18 AM   #6
Daunting
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Hi

Its been over a year now started in June of 2010. And still doing the waiting game just like you all. I find this the hardest thing ever in my life. I just want to know.

Thanks
09-11-2011, 10:21 AM   #7
StarGirrrrl
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Have you thought about seeing a Rheumatologist for auto-immune disease testing? It seems like there is not much GI testing left and I would hate you to be saddled with the IBS rubbish and not feeling any better.

I am finding my Rheumy a million times more helpful than the GI department ever were. He understands I am genuinely ill and sick even though tests cannot pinpoint anything.
__________________
2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
09-11-2011, 11:52 AM   #8
Daunting
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Hi StarGirrrl.

Thank you.
I will mention that to my family doctor on my next appt, but I do not for see how they could help out with the diarrhea. If I remember correctly I think I was already tested for Lupus but I am not sure anymore after all my tests. What else can a rheumatologist do to help.
My phycologist was telling me last week about a client she had that to tets ok her 3 years to get diagnosed for crohn's, finally after many tests something finally showed. So unfortunately we are not the only ones, and never will be.
To be honest I don't mind being told I have IBS if some of the medications would actually work, but they have not so I do not think I have IBS.

thank you again;
09-11-2011, 12:47 PM   #9
StarGirrrrl
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There are lots of auto immune diseased that cause bowel issues for sure. A Rheumy has alot more tests at his disposal than a GI. I am learning after the standard wall of tests there is a whole lot more! Also a Rheumy has a wider focus on the various conditions and more that they take into consideration. He has also gathered opinion from different places on my case, Radiology, Endocrinology, Heamtology etc.

At my last appointment, I was given a condition to look up. He told me it was rare and it sure is, no wiki page and most of the google hits are research papers!

My GI basically wasn't getting anywhere, he got to the point where he was not willing to consider anything other than IBS. So no more tests, no treatment and no help as a consequence. Now instead of wasting both our time I am now focusing on Rheumy and seeing a new GI occasionaly.

I have even been offered an immuno-suppressant trial from Rheumy; GI tried numerous IBS drugs and gave up.

But you're quite right about CD often taken a long time to be diagnosed It really is dreadful for sure.
09-11-2011, 04:43 PM   #10
Daunting
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Good to know your Rheumy is considering all aspects out of the box.
My Gi did send me for an endocrin test to see if I had a gastrinoma or a Vpoma ofcourse both came back negative. I did ask my family doctor about addison's disease and he told me none of my levels in my blood would suggest that because he had alread considered that and did a routine test of those values.

What was the condition you had to look up?? Are any of the meds he put you on helping.

Hope your feeling better.
09-12-2011, 05:41 AM   #11
StarGirrrrl
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I had to look up Mesenteric panniculitis. The other two I can't remember and didn't seem to fit. It's super rare. Rheumy has requested a PET scan to look for that, but been waiting 10 weeks for a funding decision and pretty sure I will be told today it's a no Other than that you can see in my signature what he's looking at, laparoscopy and/or bone marrow biopsy. Will be updated today.

Not on any drugs right now except immodium and co-codamol as needed. GI tried Fluxotine, Domperidone, Omeprazole and Spasmonal but none of them helped. Am considering the immuno-suppressant trial at the moment, more cons than pros personally for me but I am needing to make a decision early next year I am thinking.

Am feeling a bit better in terms of sinus infection thanks, anti-biotics are working Still a little pain in various parts of my face but it's certainly improving.
09-13-2011, 06:07 AM   #12
Daunting
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Join Date: May 2011
Glad to hear some of the antibiotics are helping with some of the problems.

Relief has to be on its way somehow.
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