So as some of you know I have been having problems since Xmas when I had a flare. Many phone calls to my hospital later, I had a CT scan which showed 3 strictures in my terminal ileum (titchy strictures). A sigmoidoscopy for dilation followed and my GI couldn't seem to find the strictures. Next GI visit I was told that nothing was found and it was probably IBS. I saw the dietician and tried a high fibre, low gluten and low lactose diet. I was great for a week before the pain returned with a vengeance. I am on tramadol and oramorph for the pain. Fast forward a month and I start bloating again and all bowels sounds stop. This shifts with a couple of days of just fluids. End up ringing my IBD nurse as was desperate for something I could take when I was blocked/bloated. I was told not to take senna or anything like it as it would irritate the bowel (told I could take laxido or movicol at a push) because of multiple strictures in my terminal ileum and distal ileum. No more surgery as they worry I could be worse off, so just management of symptoms. Yet, I had been told by the GI that I had no strictures. So back on low fibre. The bloating really doesn't go down although I am having bowel sounds. I am feeling terrible, bad fatigue and sore joints. So I am wondering if this is a flare although everything was fine with bloods and scopes? The pain is constant in my back, lower right hand side and sometimes in my left. No cramps. I am so confused with the conflicting information I have been having and frightened that I am feeling progressively worse. Anyone had similar experiences.
Constant pain and bloating
- Thread starter Daisy123
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DJW
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Oh Daisy, that is awful.
Were any of these tests done while you were having pain and bloating? My guess (for what is worth) is its inflammation because it wasn't seen with the scope. You said a sigmoidoscopy, but that only looks at the sigmoid colon and misses everything else...including the terminal ileum.
In the winter of 2013 I was getting weekly blockages. They didn't want to operate but I couldn't live like that so they operated a year ago last may. I've been doing much better.
Sending you my support. Its an awful way to live.
Were any of these tests done while you were having pain and bloating? My guess (for what is worth) is its inflammation because it wasn't seen with the scope. You said a sigmoidoscopy, but that only looks at the sigmoid colon and misses everything else...including the terminal ileum.
In the winter of 2013 I was getting weekly blockages. They didn't want to operate but I couldn't live like that so they operated a year ago last may. I've been doing much better.
Sending you my support. Its an awful way to live.
DJW, thanks.
I was told that the sigmoidoscopy was almost a colonoscopy when I suggested that perhaps it hadn't gone far enough. But then the IBD nurse said to me that the scope probably hadn't gone far enough and she was reading from the CT report. The fleet enema didn't work for the sigmoidoscopy and it was difficult to see although there were some small ulcers around the join. The scope was done before the bloating and distension started. I am exhausted, I am back to,work soon and was hoping to have this sorted by then. My GI appointment is end of next month when I hope they will schedule either an MRE or colonoscopy. But that will take three months so this is going to be ongoing. I HATE taking morphine regularly, I find it difficult to think and write.
I was told that the sigmoidoscopy was almost a colonoscopy when I suggested that perhaps it hadn't gone far enough. But then the IBD nurse said to me that the scope probably hadn't gone far enough and she was reading from the CT report. The fleet enema didn't work for the sigmoidoscopy and it was difficult to see although there were some small ulcers around the join. The scope was done before the bloating and distension started. I am exhausted, I am back to,work soon and was hoping to have this sorted by then. My GI appointment is end of next month when I hope they will schedule either an MRE or colonoscopy. But that will take three months so this is going to be ongoing. I HATE taking morphine regularly, I find it difficult to think and write.
Your post sounds almost exactly like what I've been going through for the last two years now, but being undiagnosed myself, I have no other words of advice aside from what you told me in my thread - get the full scopes just to make sure.
That 'blocked' and 'nothing is moving at all' feeling is just absolutely horrible and I empathize with you.
I went on an IBS-friendly diet with extra fiber... and it was horrible. Talk about D AND V and horrible episodes. Low-gluten was okay, and so was a more paleo diet but cutting back carbs too much means eating either too many veggies (fiber problem) or too much meat (for me, it's a strain on my body) in order to get all the nutrition. Right now, I'm doing a mix of lower carb + a mostly FODMAP-free diet and it's... okay, I guess.
Please take care and thank you for your earlier post in my thread sharing your experience.
That 'blocked' and 'nothing is moving at all' feeling is just absolutely horrible and I empathize with you.
I went on an IBS-friendly diet with extra fiber... and it was horrible. Talk about D AND V and horrible episodes. Low-gluten was okay, and so was a more paleo diet but cutting back carbs too much means eating either too many veggies (fiber problem) or too much meat (for me, it's a strain on my body) in order to get all the nutrition. Right now, I'm doing a mix of lower carb + a mostly FODMAP-free diet and it's... okay, I guess.
Please take care and thank you for your earlier post in my thread sharing your experience.
David
Co-Founder
I agree with DJW. Considering many colonoscopies aren't able to get far enough to see ileal strictures, there's no way that a sigmoidoscopy would. If that's what your GI used in an attempt to see ileal strictures, I'm not sure how comfortable I'd be with that GI managing my Crohn's. Maybe something got lost in translation though. I'd certainly be armed with lots of questions for my next GI visit.
If I am honest, it has all been a mess. I have been ill for eight months now. I honestly think he misread the CT scan. Then with the IBS, it provided the explanation for the pain. But now I am worse than I was at Xmas. I was made to feel that I was exaggerating. Now by the time more investigations are done, it will be this Xmas. I have been with my hospital a long time, and really don't want to change hospitals. This is my second hospital as it is. Just fed up
David
Co-Founder
I'm so sorry 
*hugs*
*hugs*
