Need advise!

This is gonna be a long one I'm afraid. I feel very frustrated right now. I need advice on my condition and if I need a new doc.

I live in a small southern town and have already been "blown off' by 2 GI docs who told me I had IBS. Finally, I went to a larger town to a major medical center and got diagnosed with colitis they think is associated with diverticular disease. They put me on colazal and honestly, I have never felt like I am in remission from this. They added rectal meds and those work pretty good when I use them. I am so tired at night that I often fall asleep before I put them in or I wake up with them still in my hand. Fatigue has been awful. Also this summer, I had these splits in my rectal area that went away when I started using cortifoam again. At this time, I had fever and sores in my mouth. My PCP did a blood test from prometheus and it was positive for crohn's. Will they change my treatment plan if the docs agree that I have crohn's? What other testing would they need to do? I just want to feel better and find a doctor who will not just blow me off. Oh, the doc at the major medical center, told me to find a local GI. He is better guarded than the pope and only sees people who are dying I guess. I never thought it would be this hard to find a good GI doc.  I think I have crohn's but I guess what I think doesn't matter. BTW, I am also work in healthcare and have a lot of schooling on pathology. I don't think doctors like it when their patients are well read on these diseases. Thanks for listening! Any advice is greatly appreciated.

That's rough. Definitely look around for a decent GI doc in your area. Maybe ask the doc at the medical center if he knows anyone who's good (my original GI doc moved and he gave me the name of another GI who he liked), a lot of docs in the same line know who their good peers are.

about the fatigue, has any of your bloodwork come up with low iron/hemoglobin/B12/etc?

The fatigue can easily be due to gut inflammation by itself, however, vitamin D deficiency or B12 deficiency, B6 deficiency can cause fatigue as well. I don't know where your scleroderma is localized, but you should be aware that scleroderma can cause very slow peristalsis and that causes SIBO (Small Intestinal Bacterial Overgrowth) and that causes many symptoms similar to CD. Have any of your GI's done any checks on motility or asked about scleroderma?

The vitamin situation depends on how active your inflammation is and where it is. If it is in the small intestine, several vitamins and minerals which are absorbed there can be deficient despite supplements. Vitaballs is new to me... If it is absorbed in the mouth, it should avoid some of the problems of poor absorption, but I don't see it working for the non-water soluble vitamins like A, D, E and K - all of which are normally absorbed in the SI. I have heard of so-called "nanotech" vitamins which are supposed to be absorbed through the mucosa, but I am not sure that they are not just ordinary emulsions which are only absorbed along with whatever they are emulsified in. For more about scleroderma and SIBO, see: http://www.medicinenet.com/small_intestinal_bacterial_overgrowth/article.htm

No scleroderma here, just occasional SIBO. What you say about not eating and feeling better matches the SIBO idea. I found that fasting for a day made me feel much better. My thought about it is that it lets the SI clear out the bacterial overgrowth by passing only fluids through. That and probiotics seems to help me when I am feeling brain fogged and gassy and tired. I am on the SCD plan and I have little to complain about mostly, it is only rarely that I get problems. I had the idea when I noticed that I started feeling better when I was doing a colonoscopy prep once a while back.

It's good to hear that you don't have scleroderma systemically. You may be able to manage it with a bit of luck and good judgment.

They might change your meds, if you do indeed have Crohn's. Colazal tends to be targeted at ulcerative colitis, not Crohn's.