Hi everyone, I'm new 
Diagnosed with mild Crohn's in the small bowel (no colon involvement) over 30 yrs ago. I was prescribed Prednisolone, which I could not tolerate, so it was discontinued after a few weeks, and the GI doctor recommended I learn how to manage the CD through diet alone.
I went through the "Elimination & Challenge" diet, learnt my triggers and for the next 25 yrs on a strict diet managed the disease quite well, though I had acute flares every few months where I would get inflammation, partial obstruction in the small bowel, fever and infection.
Fast forward to 5 yrs ago, after a particularly bad flare following the death of my father, the pattern of the disease changed. I developed postprandial pain no matter what I ate. It caused a very intense feeling of pulling and pressure in the upper jejunem area, as though food was getting stuck. In turn the pressure caused my diaphragm to be rigid, and this adversely affected the use of my
secondary muscles of respiration, so I became breathless on the least exertion, and even breathless after a meal.
I also had an enterocutaneous fistula in the upper left part of the abdomen.
My GI doctor considered it likely I had a stricture in the upper jejunem, but when a CT scan of the small bowel failed to find it, he changed his mind and insisted
it was something new e.g. gallstones. So over the following few yrs I had all kinds of invasive investigations. A few things were found, including mild diverticulosis in the sigmoid colon, but nothing to account for the upper abdominal pain.
I discovered after reading up on Crohn's and strictures that I might be better on a low fibre diet, and so it turned out to be. But even on the low fibre I still find I have to eat small meals, or the painful postprandial pressure is as bad as before.
So I am often hungry!
After several yrs, with my symptoms getting worse the doctor agreed I should have an MRI scan of the small bowel, with contrast. This was done recently
(2010) but failed to find evidence of stricture or bowel wall thickening, and apparently peristalsis was normal. The doctor now says my symptoms are not due to a stricture, nor can he suggest what else they are due to . I find this mystifying, as I cannot think what else other than a stricture could cause such specific symptoms, especially when all other possibilities have been ruled out. I have read that strictures can be very difficult to find with scans and that a better diagnostic tool is the wireless capsule small bowel endoscopy.
I would be very interested to hear from anyone who has CD in the small bowel, especially if they have had a stricture in the upper jejunem area, and it has caused pressure in the diaphragm and interfered with their breathing. Also, has anyone had a wireless capsule endoscopy which diagnosed a bowel condition that had not been visible on a CT or MRI scan ?
Many thanks for reading
Diagnosed with mild Crohn's in the small bowel (no colon involvement) over 30 yrs ago. I was prescribed Prednisolone, which I could not tolerate, so it was discontinued after a few weeks, and the GI doctor recommended I learn how to manage the CD through diet alone. I went through the "Elimination & Challenge" diet, learnt my triggers and for the next 25 yrs on a strict diet managed the disease quite well, though I had acute flares every few months where I would get inflammation, partial obstruction in the small bowel, fever and infection.
Fast forward to 5 yrs ago, after a particularly bad flare following the death of my father, the pattern of the disease changed. I developed postprandial pain no matter what I ate. It caused a very intense feeling of pulling and pressure in the upper jejunem area, as though food was getting stuck. In turn the pressure caused my diaphragm to be rigid, and this adversely affected the use of my
secondary muscles of respiration, so I became breathless on the least exertion, and even breathless after a meal.
I also had an enterocutaneous fistula in the upper left part of the abdomen.
My GI doctor considered it likely I had a stricture in the upper jejunem, but when a CT scan of the small bowel failed to find it, he changed his mind and insisted
it was something new e.g. gallstones. So over the following few yrs I had all kinds of invasive investigations. A few things were found, including mild diverticulosis in the sigmoid colon, but nothing to account for the upper abdominal pain.
I discovered after reading up on Crohn's and strictures that I might be better on a low fibre diet, and so it turned out to be. But even on the low fibre I still find I have to eat small meals, or the painful postprandial pressure is as bad as before.
So I am often hungry!
After several yrs, with my symptoms getting worse the doctor agreed I should have an MRI scan of the small bowel, with contrast. This was done recently
(2010) but failed to find evidence of stricture or bowel wall thickening, and apparently peristalsis was normal. The doctor now says my symptoms are not due to a stricture, nor can he suggest what else they are due to . I find this mystifying, as I cannot think what else other than a stricture could cause such specific symptoms, especially when all other possibilities have been ruled out. I have read that strictures can be very difficult to find with scans and that a better diagnostic tool is the wireless capsule small bowel endoscopy.
I would be very interested to hear from anyone who has CD in the small bowel, especially if they have had a stricture in the upper jejunem area, and it has caused pressure in the diaphragm and interfered with their breathing. Also, has anyone had a wireless capsule endoscopy which diagnosed a bowel condition that had not been visible on a CT or MRI scan ?
Many thanks for reading
