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Crohn's Disease Forum » Your Story » Not quite diagnosed


11-19-2015, 06:38 PM   #1
Cat35
 
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Not quite diagnosed

Hi everyone...

So here goes my story....

I have always thought that I suffer from IBS, so I have had symptoms of stomach ache and irritable bowels since I can remember, however, none of it compares to the last few months.

In September, I started to suffer with terrible diahrrea, it was beyond what I would class as 'normal' diahrrea. Within a month I lost over 1 stone (don't get me wrong, I could do with losing some weight but never expected I could so quickly). I was also suffering from chronic fatigue, so much so that I had to get family to help me care for my 2 little ones when my husband was at work.

I went to the doctor as i was feeling so bad. They tested me for the following:
Diabetes: clear
Thyroid: clear
Iron deficiency: clear
Because my symptoms persisted they tested me for:
Coeliac disease: clear
IBD: raised inflammation levels

They then sent me for a colonoscopy: clear

My consultant was still talking about IBD but I kind of thought that with my results that was ruled out but I then I was sent for an MRI: narrowing of my small intestine detected and patches of inflammation.

I have since been sent for a procedure where they push a garden hose pipe down your throat (sorry but I was totally unprepared for the size of it). My consultant wanted to get biopsies to provide what he expects is a diagnosis of Crohns. I am currently awaiting my results although I already know the inflamed area appears to be in 'no mans land' too high for colonoscopy, too low for garden hosepipe' (excuse me for not knowing the correct terminology hit thinkable a bit of a shock and I am not yet educated).

I receive my results soon but am expecting that my consultant will needs to repeat the procedure with a longer tool ( he has already mentioned this may be the car as he couldn't reach the inflamed area ).

I have had further issues of pain when I sit for long periods of time, especially on hard surfaces. I really don't know what is going on.

I guess my reason for posting is to ask if this sounds similar to anyone else?

I am a 35 year old female so thought I was a bit late to be diagnosed with this but it is all my consultant talks about?

Please can someone giver their experiences? I am at a point where I just want to know what is wrong so I can start dealing with it.

Thanks to anyone that has read this far. Xx
11-19-2015, 06:43 PM   #2
Cat35
 
Join Date: Nov 2015
Location: United Kingdom
Please also excuse the typos, it's late, I'm tired and have fat finger
11-19-2015, 06:49 PM   #3
Clash
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It's very possiblly IBD with narrowing and patches of inflammation. There is a large area of the small bowel that can't be seen by colonoscopy or endoscopy and is generally dxed with MRI, MRE or some other type of imaging or even a pill cam. In some areas a biopsy is just not feasible.

Did he mention the location of the narrowing? Duodenum, ileum, terminal ileum?

The endoscopy can reach through stomach to first part of small bowel and colonoscopy can reach through colon to last part of small bowel or terminal ileum.

Hopefully, you will get a firm dx soon and be able to start treatment for relief of your issues.
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C age 19
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Dx May 2014: JSpA
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PAST MEDS: remicade, oral mtx, humira
11-19-2015, 07:03 PM   #4
my little penguin
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The longer hose would be a double ballon endoscopy
Also known as a push endoscopy
The blow up a balloon to expand the intestine then push the endoscope through more of the small bowel

Lots of risk with that procedure
Could you get a pill cam so they could see the inflammation without as much risk ?
Make sure to ask for the patent capsule first since it dissolves if the area is too narrow
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11-19-2015, 08:02 PM   #5
Cat35
 
Join Date: Nov 2015
Location: United Kingdom
Thank you both for your responses. The doctor didn't mention the area but I will ask. I can also ask about the pill cam you mention, I'm guessing that is less intrusive.

It's so hard not knowing what is going on.
11-20-2015, 02:50 PM   #6
fuzzy butterfly
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Hi mine was in the terminal ileum and dx by scan. Other test did not show anything. So ye pill cam or scan looks like the way to go next. Best wishes n hugs💖
11-20-2015, 03:01 PM   #7
Christi
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Yes i had endoscopy, colonoscopy , barium enema with xray its also baloon, normal xray, cat scan , fecal test, blood test, blood gas , urine almost every test possible . It all showed something. hope you feel better soon
11-24-2015, 06:56 PM   #8
Cat35
 
Join Date: Nov 2015
Location: United Kingdom
Thank you for replying. I saw my consultant Friday and he confirmed they still cannot confirm the diagnosis as he couldn't get to the inflamed area. Just waiting now for an apt for a different hospital using the extended tube so they can get a biopsy and rule out anything worse. Hopefully it will come through soon so I can start treatment. X
11-25-2015, 01:16 AM   #9
fuzzy butterfly
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Best of luck Cat35. Hope things are sorted out for you soon. Hugs 💞
11-25-2015, 03:13 AM   #10
Cat35
 
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Location: United Kingdom
Best of luck Cat35. Hope things are sorted out for you soon. Hugs 💞
Thanks 😊
11-25-2015, 07:21 AM   #11
DEmberton
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I spent 18 years thinking I just had IBS, and it was only because of losing weight that I went back and was finally diagnosed with Crohns. That was after a CT Scan showing a stricture. By then it was bad enough to require surgery so I guess they didn't worry too much about getting a biopsy.

The tube down your throat is a gastroscopy, at least that's what they say in the UK. Technically an endoscopy is anything where they look inside your body. If they're persisting with that end then obviously your inflammation is in the Duodenum which is the first part of the small bowel.

Hope you get some answers soon and can start getting better. I remember well how frustrating it was waiting for a diagnosis.
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11-25-2015, 09:27 AM   #12
ronroush7
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The best to you. You mentioned your age. I was not diagnosed until I was 34.
11-25-2015, 01:01 PM   #13
fuzzy butterfly
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Hi i was nearly 50 when dx 😨
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