Doctor/Diagnosis question

[steve-H]

Hi guys, to cut a long story short....

I have had ulcers show up on a pillcam along with slightly raised inflammation levels taken from the stool(f-calprotectin levels). The doctor has said possible crohns but would not start treatment unless the inflammation from the stool was higher.

Yesterday I got my latest inflammation of the stool and it has come back within range. Now my I don't have my next GI appointment for 3 months and my gut is the worst it has been. I am pretty sure because of the f-calprotectin level being within range on the second stool test I will be offered no treatment and told I have IBS.


I don't know what to do as my symptoms are the worse they have ever been. About 2-3 months ago (I have had gut problems for 7 years) my BM's changed from 3 a day to 8 a day which I thought was related to my crohns, if its not then what's going on

Thanks
Steve

 

[PsychoJane]

Hi Steve,
Did you GI ever considered a colonoscopy with biopsies? I'm assuming he/she should be aware that false negative with the calprotectin is still a possibility even though it's rare. That along with the fact your pillcam actually showed ulcers... I find it weird they don't even consider treating...

 

[Essieluv]

If you are feeling very sick, and had some ulcers show up on your pill cam, I think an endoscopy/colonoscopy would be the next step. You don't have to suffer without answers. If you are unhappy with the answers you've been given then it's your right to ask for more testing. You are the patient, and your doctor works for you.

Have you had any blood tests done? A CBC, CRP, and SED rate might help you find out if there is any inflammation. However, it is possible to have active Crohn's without elevated inflammation levels in your blood tests.

 

[steve-H]

Sorry should of said which tests I have had done.

Endoscopy/Colonsocopy/Pill Cam/Various blood tests/Stool calprotein. Lactose/Glucose Tolerance test.

All come back "normal" apart from Pill cam (ulcers of the small bowel), 1st calprotein(raised levels), follow up calprotein (normal).

I was also diagnosed as Lactose intolerant (the nurses said it was the highest they have EVER seen)
Also my glucose sibo test came back way above the normal.

Is it possible to have ulcers of the small bowel and not have crohns, can they cause crohns like symptoms?

Thanks

 

[PsychoJane]

Unfortunately, there are numerous possibility for small bowel ulcers...

Crohn can often be the culprit and if you had positive results to most of your test, it would have allowed to discriminate between UC and CD.

Have you been tested for celiac disease? If you have not, I would give a try to cutting all gluten from your diet for a while and see if it gets any better. Celiac disease can cause small bowel ulceration and can totally cause you digestive issues if you eat it and should not.

 

[steve-H]

Yeh im already on a gluten free diet as I have candida problems.

Damn my case is always so complicated

 

[yellowamc]

If you are feeling very sick, and had some ulcers show up on your pill cam, I think an endoscopy/colonoscopy would be the next step. You don't have to suffer without answers. If you are unhappy with the answers you've been given then it's your right to ask for more testing. You are the patient, and your doctor works for you.

Have you had any blood tests done? A CBC, CRP, and SED rate might help you find out if there is any inflammation. However, it is possible to have active Crohn's without elevated inflammation levels in your blood tests.

I agree totally with the crp test, that's a big one.