35/f proud single mom of 2
Diagnosed with GERD/Acid Reflex 2002
Diagnosed with IBS 2007
Diagnosed with UC, then Crohn’s 2008
Welcome Valerie to Healingwell. I sure wish you would have come to us before you had the tests. For one thing I would have told you was to have the colonoscopy NOT the barium enema. At least with the colonoscopy you do the prep just like for the BE, BUT with the colonoscopy you are sedated so you are not aware of the discomfort. I have had 2 BE in my life and I have had this disease for over 30 years and I will tell you they will never do another one on me. The colonoscopy is a much better test and you are probably going to have to have one anyways.
I am not sure if the doc will give you meds or not, I guess it depends on what the test results tell him. Based on everything you are telling us it does sound like Crohns. As far as diet goes that is a pretty individual thing for most of us. I would try keeping a food diary of which foods bother and those that don't. Right now since you are so sick I would probably try to stay on a pretty bland diet until they get you sorted out. Soups, baked potato's (no peels), toast, things light.
I sure hope they get things figured out for you soon and get you on the road to recovery.
I agree with the others who've posted a message, that a colonoscopy is the "gold standard". I know the prep is miserable, but when the procedure is completely done, you'll probably be thankful that you have an accurate diagnosis.
You might want to try the larger volume prep (like GoLytely), as it's definitely much more gentle on the system. The huge volume is awful, however, there is much less nausea and cramping.
Since the radiologist mentioned something about your small intestine, I'd ask lots of questions before considering having a capsule endoscopy. If your small intestine is quite narrowed, I've heard that the capsule can get stuck and cause a blockage.
While you're going through this waiting period, I'd stick to a "low residue" diet---chicken, white rice, noodles etc. In other words, stay away from raw veggies, raw fruits, and don't eat things that have a lot of fiber.
Good luck to you, and I hope your pain subsides soon.
From what I can gather pentasa seems to be the first drug most people are tried on when they're diagnosed before stepping up to anything stronger, I unfortunately was allergic to it (luckily I was in hospital already when they gave it to me!) so didn't have an option but to go straight on to the immuno-suppressants.
I'd say from the description it sounds like the steroid she was on about is entocort, which works brilliantly if your Crohn's is just in the small bowel but unfortunately mine was too widespread to be treated with entocort.