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What could be causing my symptoms?

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Crohn's Disease
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Posted 5/2/2017 3:06 PM (GMT -5)
Hello,

I had a bowel resection in 2011 for a perforation at the ileum (diagnosed then with Crohn's, which was later retracted and then rediagnosed). Prior to that I experienced years of stomach cramps and general abdominal discomfort. After the surgery that all completely went away and I felt better than ever. Was able to work for 7 days a week sometimes within the NHS I just had so much energy and felt so great. I flared again in 2015 - return of the cramps. Colonoscopy showed ulcers at the anastomosis and my small bowel looked withered.

I have been on azathioprine since April 2016 but I am constantly experiencing symptoms. My colonoscopy about 3 weeks ago showed a big improvement to last year. There were 3 ulcers smaller than 3mm. Therefore I don't get why I feel rubbish pretty much everyday and have done for about 18 months. My symptoms are:
- Gas that varies in intensity. Sometimes it is really smelly and during those times I experience pain on the right hand side and horrible abdominal discomfort
- gurgling at my ileum
- fatigue. When I walk too far/exercise the fatigue worsens and causes pain at my ileum

My MRE with contrast was completely normal. My last fecal calproctectin was normal and my colonoscopy in April results I state above. I am at a loss at what could be wrong and I am worried I am stuck like this indefinitely it is really affecting my quality of life.

Post Edited (eleanor_rigby) : 5/2/2017 2:10:52 PM (GMT-6)

Posted 5/2/2017 6:00 PM (GMT -5)
I would get a stool sample to check for c. diff. and other similar infections. Really smelly gas is usually associated with an imbalance of bacteria. Also, get blood work to check your iron levels, also vitamin D, vitamin B, and other levels. If any are low, it can cause fatigue. I would at a multivitamin into your diet, as well as maybe a probiotic.
Posted 5/2/2017 6:10 PM (GMT -5)
If c. diff is negative, I would try to get tested for small bowel intestinal overgrowth. It's more common in people who have had bowel surgery.
Posted 5/2/2017 8:21 PM (GMT -5)
I agree with sci and NCOT, both have given you sound advice. I would also be looking at food allergies. You might want to be tested for that. Lactose, gluten, wheat would be first on the list.
Posted 5/3/2017 3:21 AM (GMT -5)
Hey just to add some more information - I never have diahorrea so was thinking c-diff is unlikely or am I wrong? I've had my blood tested regularly for folate, fbc, b12 not sure what else but I asked for a vitamin check due to my fatigue and whatever they checked was normal :'( I had a mildly positive result for coeliac disease in 2015 and have been gluten free over a year due to this and my blood results have since returned to normal. Was tested for lactose a couple of months before these symptoms started and that was negative.

I have also wondered about SIBO - could that last a year and come on out of nowhere? I had an upper endoscopy and colonoscopy 12th April and they took some biopsies. The indication my GI put for the endoscopy was possible malabsorption so will they check my biopsies for SIBO? I did ask my GI about SIBO during the scopes but she said thought it was very unlikely.
Posted 5/3/2017 6:56 AM (GMT -5)

eleanor_rigby said...
I never have diahorrea so was thinking c-diff is unlikely or am I wrong?

No, you're not wrong. In fact they usually require a liquid stool sample in order to test for c. diff (not sure why).

Why did your GI think SIBO was very unlikely? You can have SIBO without diarrhoea.

In addition to the absolute number of organisms, the type of microbial flora present plays an important role in the manifestation of signs and symptoms of overgrowth. For example, a predominance of bacteria that metabolize bile salts to unconjugated or insoluble compounds may lead to fat malabsorption or bile acid diarrhea. In contrast, microorganisms that preferentially metabolize carbohydrates to short-chain fatty acids and gas may produce bloating without diarrhea because the metabolic products can be absorbed.

Source: /www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/

The entire article is worth a read. Unfortunately there is no perfect test for diagnosing SIBO. You could ask your GI to try a course of antibiotics: I'm not sure what she would think about that. But I would say it's probably worth a try.
Posted 5/3/2017 7:09 AM (GMT -5)
Thank you so much for your help. I have no idea why my GI does not think it is likely. I think she thinks I am just anxious but I don't think anxiety would cause pain to my anastomosis and foul smelling gas.. I've been anxious plenty of times whilst in surgical remission and never experienced those things.
It's just weird because taking high doses of steroids had no effect on the symptoms whatsoever I thought steroids just didn't work on me and now my Crohn's is much improved.

I had the hydrogen breath test in Nov 15 about 2-3 months before these symptoms started and that was completely negative. I think I may struggle to persuade her to do another test and there will be no way she will prescribe antibiotics based on what she will perceive as entirely my anxieties.

I guess my way forward is to try and persuade her to repeat the breath test, or try and change GIs. If you know how I might do the breath test privately please let me know!
Posted 5/3/2017 7:59 AM (GMT -5)
Ah, the anxiety label. That's usually fatal to being taken seriously. However I wouldn't give up on your GI just yet. If she ran the hydrogen breath test once, that already makes her more open-minded than some doctors. She may agree to do it again, particularly if you can persuade her your current symptoms started after the last test.

I googled private SIBO tests uk. There are several clinics offering the test privately, but I don't know which are the best ones out of them :/ Plus most of them are aimed at people with IBS or functional gut disorders. I think given your history, you would be better off seeing another GI. If money isn't an issue, there is the option of going private of course.
Posted 5/3/2017 8:21 AM (GMT -5)
Thanks so much!

The reason she ran that test the first time round was to test me for lactose intolerance.

I will ask her to do it again. Should hopefully be seeing her maybe next month or so. I agree the anxiety label is fatal. It took me a long time to convince her to do a colonoscopy and in the end she agreed to give me "closure" on my 'inactive Crohn's'. I don't suppose those 3 little ulcers could be causing me all this bother? I agree with the above though it does seem more of a bacterial problem.

I've found somewhere in London so I have contacted them about prices. I can't afford too much really as I am a student, but I keep find myself feeling so hopeless and almost suicidal to be honest to think this is my life now forever, so really I have to do something about it.
Posted 5/3/2017 9:13 AM (GMT -5)
I don't suppose those 3 little ulcers could be causing me all this bother?

Probably not on their own, but if they're symptomatic of not-so-inactive Crohn's, then maybe. Did you get the biopsy results from your recent colonoscopy?

I do understand the feeling of despair at the thought of living with feeling like crap forever :/ All I can say is that nothing stays the same forever, even if it feels as though it's lasting forever. For better or worse, things will change at some point. In the meantime all you can do is try to get whatever enjoyment you can out of life today - it is hard, much harder when you feel like crap. But not impossible.

Good luck with getting tested for SIBO. Let us know what the results are.
Posted 5/3/2017 1:09 PM (GMT -5)
I've not had my biopsy results, not sure I will get to know much of what they say (due to my GI managing my 'anxieties').

Do you think SIBO could cause the terminal ileum/anastomosis to ache, which gets worse with exercise/extensive walking?

I have heard back from that London place - £500 for the breath test LOL so will have to wait and see what GI says as I cannot afford that :-(

Thank you for your reassurance. I certainly hope something changes! I hope entyvio starts to help you.
Posted 5/3/2017 2:04 PM (GMT -5)
Bloody hell, they are trying to rob you. I saw somebody say they got the test for £100, let's see if I can find it again.

Yeah, here it is. And it's in London.

/healthunlocked.com/theibsnetwork/posts/132680739/does-anyone-know-if-they-do-sibo-testing-on-the-nhs

Do you think SIBO could cause the terminal ileum/anastomosis to ache, which gets worse with exercise/extensive walking?

I have no idea in all honesty. But maybe the bacterial overload is higher in your terminal ileum than anywhere else in your small bowel - it sounds like most of your GI symptoms are concentrated there.
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