Crohn's Disease Forum » Your Story » Newbie on the road to diagnosis

12-21-2017, 08:39 AM   #1
Join Date: Dec 2017
Location: Newcastle upon Tyne, United Kingdom
Newbie on the road to diagnosis

Hi everyone - Emma here.

I've just found this forum after searching Google looking for some kind of answers.

I'm still on the road to finding out what the heck is going on with me. I'm in my 30s and was diagnosed with IBS when I was 16. Never been too much of a bother. More like nervous tummy when I was stressed or had eaten too much ice cream. I used to take Mebeverine or Buscopan and within 3 doses I was back to normal again.

However, it was almost 2 years ago I got the most awful stomach cramping out of no where, includingdiarrhea, bloating, fatigue etc. It went on for two weeks and I was back and forth to my GP who said it was probably a bug. Getting no better and the cramping being so painful, she sent me to acute care at the hospital to rule out appendicitis. The doctors there didn't really say what it could be, just that it wasn't my appendix. After about three weeks it cleared up and I was back to normal.

A few months later I started getting minor stomach discomfort and sharp pains. Because I'd had a cyst removed from my ovary a couple of years previously I was told it was wise to have another laproscopy to see what was going on.
Whilst waiting for surgery, I had two more bouts of these painful attacks, each lasting weeks. My GP put me on a max dose of Buscopan but it didn't even touch the cramping.

I had my surgery in May of this year where I was found to have endometriosis and some adhesions (piece of bowel had attached to my abdominal lining amongst a few other things). The surgeon removed the adhesions and I thought that was that.

Two weeks later I get another of these attacks, followed by another a few weeks later. This one was worse... could barely eat, felt sickly, broke out in mouth ulcers and cold sores. Just generally felt yuck. I went back to my GP again and she said 'this sounds more like your bowel than gyne'. She sent me to see a gastroenterologist in August. He requested a colonoscopy which I had three weeks ago. This was quite frankly the most painful experience of my entire life. Even the tiniest of movements caused massive amounts of pain. The nurse performing said my entire colon was rigid and she was having massive amounts of trouble manouvering the camera around. She told me that in future a traditional colonoscopy might not be the best procedure for me.

I got a letter from my doctor yesterday who had written to my GP. He said the colonoscopy had been very difficult and they had been unable to go into the small bowel due to a prolapsed ileocacal valve. Some random biopsies from my colon had come back normal and showed no sign of colitis. Because of the severe symptoms and the fact they couldn't intubate the valve, he is sending me to have an MRI of my small bowel.

So that's where I'm at... which is probably more confusing. I'm not sure what would cause my colon to become so rigid and if that's any way linked to what's going on with me. I've tried googling 'rigid colon' but it doesn't seem to be a thing.

In the meantime I'm having pain and discomfort every day now. Some days I look pregnant from the bloating. The worst part is not knowing when the worst symptoms will hit. For weeks we'd been planning as a family to do a Christmas event at the beach and get some fish and chips afterwards. The day finally came yesterday and as I was travelling in the car I had to get them to head back as I was in desperate need of a bathroom! Just feel like its taking over the best parts of my life now and really just want some answers.
12-21-2017, 08:59 AM   #2
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Hi. I am sorry for all you are going through. I hope they can find out what is going on after the MRI. Please let us know how you are.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
12-21-2017, 11:04 AM   #3
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Scipio's Avatar
Join Date: Oct 2015
Location: San Diego

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Given the difficulties in doing the colonoscopy, an MRI is probably the next logical step to try to figure out what is going on. So it sounds like you have good doctors. Fingers crossed for the MRI and the prospect of a diagnosis.
12-22-2017, 03:17 AM   #4
Join Date: Dec 2017
Location: New York, New York
Hello, Emma! Thanks you shared your story. Hope, you will find here the support.

Crohn's Disease Forum » Your Story » Newbie on the road to diagnosis
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