Waiting..tests..more waiting

[KyleeB]

Hi, like everyone else wondering if anyone has any thoughts about whether or not this could be crohns. Here's my story so far:

It started with me losing my appetite, then had a couple different nights of a stomachache that woke me up but wasn't excruciating. I thought it was gas. Then I noticed when I pressed on my right side near my belly button and over that it was very painful to press. I waited a week and then went to see my a doctor. She seemed concerned and set up an ultrasound for the next day. Had the ultrasound and that was normal. She then wanted me to wait for a cat scan. Had a cat scan, along with a barium enema. The said it showed an abnormality and wanted me to wait an hour to get a better picture once the barium went farther. They told me after that it was either an infection or possibly the start of Crohn's. Met with my GP and he wanted to schedule a colonoscopy. Had that done on Monday and the Gastro dr said that they couldn't get the scope past the IC valve because it was so inflamed. It also indicated an ulcer near there as well. Now I am scheduled to have a small bowel follow through on Monday. Will that test confirm if I have it or not? I am on a soft food diet with no fiber because I am worried about a blockage.

I do feel okay though, I have an appetite and am hungry but am not eating much because I am worried about a blockage. When I press on my stomach the pain is not like it was before. Do they tell you right after your small bowel follow through if you have it?

If I do have it, what do they typically start you on for medication?

Thanks for any input.

Kylee

 

[Cat-a-Tonic]

Hi Kylee, welcome to the forum and the club! Do you know if they took biopsies during your colonoscopy? Being that inflamed during the scope certainly isn't IBS, that's for sure. The biopsies (assuming they took some) will hopefully be enlightening. The SBFT will show if there's anything like thickening or narrowing of the bowel wall - those could also indicate Crohn's. I haven't had an SBFT myself (I'm undiagnosed too and have had most tests but not that one) but for other things involving x-ray, they would have to have the doctor review it before they could tell me anything, so I would imagine you probably won't get immediate results right after the SBFT.

Hang in there. How long have you been ill? It sounds to me like just a short time? I'm guessing you'll get diagnosed pretty quickly, and if that is the case then you are very lucky. A lot of us wait years for a diagnosis. Personally I've been ill for over 3 years now and they still haven't figured me out. Not trying to scare you - they saw visible inflammation so I am guessing a diagnosis is in your near future. But don't get discouraged if you don't get immediate results either. Hang in there and keep us posted!

 

[Lustforlife]

Hi Kylee - you've come to the right place and asked some pretty good questions. Welcome!

I think the colonoscopy only goes about as far as the ileocaecal valve anyway, not too much farther. You might get a look at the terminal ileum. But that there was significant inflammation suggests Crohn's. Ulcer strengthens that suggestion. If its not Crohns - your GI needs to explain both of those. An infection is possible as well...

I have not had a small bowel follow through but if that's where the disease is (maybe/maybe not), it'll be pretty likely to catch anything there. Good luck!

 

[KyleeB]

Thanks for responding. I called today because my GP told me to call 3 days after my colonoscopy. He wasn't in unfortunately but I talked to a nurse and all the biopsies that they took with the exception of one were normal. I can't remember the name she said for the one that was abnormal. But that is all she said. I do have some papers from my colonoscopy and it said "There was evidence of stenosis and an aphthae at the ileocecal valve. It was not possible to pass the scope beyond the IC valve. Biopsies taken from the IC valve." It also said this "Attempts to pass cold biopsy forceps through the IC valve into the TI were unsuccessful."

It has been a short time, about a month at least with pain. I feel for so many of you with out answers. It has been frustrating so far, and I know that some of you are on years without any answers. I have gotten a lot of useful information from these boards.

I am assuming they are trying to figure if I have crohns before doing anything? I mean he scared me into thinking that I could have a blockage unless I eat soft/pureed foods. If my small bowel follow through is normal (which I doubt since they know there is inflammation) would they not give me anything? I just wonder when I can try eating more. I guess I'll have to ask on Monday.

Anyways, thank you for answering. I hope you too can get answers. How are you doing now?

 

[dannysmom]

Hi KyleeB and welcome (although not sure how long you will be in this Undisgnosed Club). Ask for copies of the pathology report. IT is good to save copeis of all of your tests. My son's SBFT was not able to visualize everything because of loops. Other good tests are MREs and pillcam. Good luck. I am sure you will get some treatment soon.