Crohns ??

[palmy5]

Hi im new...i have had bowel probs for 2years and have a distended bowel..colonoscopy was fine but showed a thickend terminal ileum...pain always there right iliac fossa...am awaiting mri scan to show theres enough room so the camera capsule can go through,my faecal sample was high and consultant said i show all the signs of crohns...this has been going on since november when i was admitted for 6 days..1 consultant says he is not convinced its crohns...will camera capsule show ive got crohns if it doesnt get stuck ??

[Patricia2015]

So sorry for your pain and bowel problems!

How high was your calprotectine (and what range)?

A capsule can show inflammation (it doesn't notice light inflammation) but only a biopsy can show if it is Crohn's. Did they take biopts at the colonoscopy?

[palmy5 in reply to Patricia2015]

Hiya,i dont know what level it was recently but when i was in hospital for 6days they said my level was through the roof and at that point i was told i had crohns but my new consultant is not convinced thats why i have to have the capsule x

[Peedy1968]

Palmy5, Sorry to hear of your problems, I have had Crohn's my whole life but was officially diagnosed 17 years ago. I am not in any way wanting to criticize your docs, but when they did the colonoscopy the doc should have been able to tell if you have Crohn's and they should have done a biopsy.

My docs would never do the camera with me, becuse of the risk of it getting stuck do to any narrow spots or scar tissue. However, I have had 5 abdominal surgeries... lucky me. 1st one due to my Crohn's, had to have my terminal ileum removed, 13". Luckily my colon has been fine all these years. Since the 1st surgery, I keep getting adhesions, scar tissue that has caused small bowel blockages. So for me, the camera is a no.

So they have done some really intense CT scans, the last one I had to fast, clean my system out, and drink stuff for a few hours and then the scan. It can show narrowing, but no scan can determine if its Crohn's, they can guess but I am quite sure only a biopsy can be definitive.

I think if they want to do the camera with you, they are looking for any other areas that may look thick or damaged, any fistulas, any ulcers... all that fun stuff. If it gets stuck, they would have to wait to see if it comes lose by itself, or the last resort if they have to go in and remove it. No one with Crohn's or IBS issues wants surgery, it flares things up.

My experience, mine started just like yours, lower right aching, bouts of constipation and then diarrhea, anemia, and when flairs would hit, lots of anxiety. I am not trying to promote anyone, but one book I read... Restoring your Digestive Health, was very helpful to me. It explained what should happen in the gut, and what happens and the symptoms when things go bad. It made things so much more clear to me, especially the anxiety and why.

Along with Crohn's, we tend to be low in B vitamins, expecially B12, Iron, D and others. I get full labs every so many months, and I do B12 shots and IV Iron, because my terminal ilium was removed, I do not absorb these things! Yours is damaged, so you have to work with your docs and have your levels of stuff checked. I also had food allergy testing done to see what might be causing issues too. Found out I cant tolerate eggs, I cant break down the protein. Red meat is also a big trigger.

After trying all the natural stuff, it was working, including exercise, but I ended up on Remicade. I resisted, but after going to Mayo Clinic in MN, they convinced me to try it. It has put my Crohn's in basically remission for 7+ years now. But, I still have all the other issues with my vitamins and such and I still have to watch my diet. Remicade does not fix everything. Your at the early stages, you have to get a grip on it quick. Probiotics are a must - a good brand, I also drink 1/4 cup distilled aloe juice 2x a day, I have had to stop taking Advil due to possible intestinal bleeding. Keep researching!