New here and saying hi!

Hi! I have had major GI trouble my entire life, and after getting incredibly sick I was diagnosed with celiac disease and multiple food allergies in my mid-teens. I improved on the gluten free diet but continued to have major GI issues.

I had scopes done and had inflammation and contact bleeding on my endoscopy. I had esophogitis, gastritis, and ileitis. That GI told me I had inflammatory bowel disease and put me on Pentasa and a couple other meds. At the time I don't think she differentiated between crohn's or colitis, but she definitely said IBD rather than IBS. I was under the impression I had crohn's rather than colitis.

The Pentasa helped, and I managed to go into remission. I started having breakthrough symptoms, and a different GI took me off all my meds. I was in college and moving back and forth a lot, so the continuity of my care kind of fell apart.

A couple years later, I saw a third GI who questioned if I had crohn's or not. The scopes the did at the time were okay, but my barium study showed abnormally fast motility. That GI was also kind of jerk and told me I couldn't be allergic to beef because we are made out of cows. :thumbdown: My primary care later said that GI was not the best and that I should drive a few hours away to see better GIs, which I haven't had time to do yet.

Now I have no GI and no meds, but I've been doing okay if I stick with the SCD. I also get monthly B12 injections, because I am chronically b12 (and vit d) deficient.

It would be nice to connect to other people dealing with IBD, which is why I'm here!

Hello and welcome to the forum

It sure does sound like you have had some bad luck in the GI doc department, if you can though I would advise that you do try and get under the care of a good one so they can monitor disease activity and give you the required treatment as and when necessary.Just to confirm would you say you are symptom free on the SCD? How often are you on the B12 injections and are you also taking anything for the vit D deficiency?

There is a lot of helpful info and support here so do have a good look around.

AB
xx

I had been symptom free on the SCD, and I managed to reintroduce some foods without any trouble. More recently I seem to be flaring again, so I'm going to go back to the stricter version of the SCD and see if that helps again. I do need to find a competent GI...

I get the B12 injections monthly. The oral b12's never worked even at prescription doses, so my primary care switched me to injections which have worked much better. I also take a high dose prescription d vit, which sometimes helps.

Thanks for the welcome!

That's alright hun, I am glad you are getting the right vitamin supplementation. Please keep us updated on how you get on. We do have a doctor review forum that is worth looking at to see if there is a good doc in your area: http://www.crohnsforum.com/forumdisplay.php?f=79.