Newly diagnosed...looking for answers

I had originally posted under the undiagnosed club forum, but just this week have been diagnosed with Crohn's disease and have a lot running through my mind tonight. My family is asking a lot of questions, and I'm not totally sure about how to answer most of them.

I had 3 colonoscopies, 1 upper endoscopy, 2 MR Enterographies, 1 SIBO/ hydrogen breath test, and 1 pill cam performed in 2015. The only tests that ever found evidence of anything were my colonoscopies. The first found few apthous ulcers and inflammation in my distal-most ileum, the second found multiple ulcers and inflammation in my distal-most ileum, and the third found several ulcers and inflammation in my distal-most ileum. Two of the 3 pathologies came back negative: the last confirmed chronic inflammation consistent with CD.

However, the biopsy that confirmed it was taken from my colon. On only one colonoscopy (the second, I believe) was there found a single apthous ulcer in my colon. Would it be right, then, to come to the conclusion that I have CD of the colon AND terminal ileum?

My G.I. has placed me on a second round of Entocort in the hopes that it will calm down the inflammation. He has also stated that we may have to consider biologics such as Humira if the Entocort does not work as it did not the first time. I am quite nervous about such heavy drugs and am unsure whether or not my disease is severe enough to warrant them. The only people I've known to use them are under a horrific disease course. Why would he want to consider such drugs so early? What are the battles with insurance about these drugs like?

He has also stated that he would like to do another pill cam to solidify the diagnosis. Has anyone else been diagnosed by pill cam, and if so, what did they say specifically was the reason they diagnosed you?

Lastly, they are scheduling me for an anorectal manometry to make sure that my body is evacuating properly. Has anyone had this done?

Thanks so much in advance. My mother and I are getting together tomorrow to talk about all of this news and the future, and I'd like to have some answers for her.

It sounds like you have visually active disease at the the ileum and the active inflammation at the cellular level in at least one area of your colon.

If the CD meds were a pyramid then the lowest level would be 5ASAs like pentasa. These meds are pxed off label for CD. They are approved for UC. They treat the first layer of the bowel (like a topical ointment would treat your top layer of skin) which works well in UC since only the first layer is affected. In CD, the disease is transmural all layers of the bowel can be affected. A Cochrane review (an analysis of the many studies done on 5ASAs and CD) showed that 5ASAs have the same efficacy of a placebo. For some with mild disease it can work but is often more effective maybe as an adjunct therapy.

The second level would be immune modulators like 6mp, imuran and methotrexate.

The top level would be biologics. There would also be combo therapy.

Meds like entocort and pred are used to dampen inflammation while the maintenance med is started and given time to reach therapeutic levels.

For a long time GIs followed the bottom up approach. Moving up the pyramid as a med failed. They then found that the top down approach or starting with biologics coukd lessen the risk of surgery due to progression of chronic inflammation if started early on after dx. The surgery risk is high for those with CD. The goal of treatment should be deep, stable remission which includes clinical (lack of symptoms), endoscopic (visual clean) and histological(clean at the cellular level) with mucosal healing. This gives the patient the best chance of a long remission.

So many GIs opt for the top down approach. But you have a say in your treatment of course so it's best to make a list of your questions and concerns and go over them with the GI.

Thank you so much, Clash. You're a wealth of information. I had wondered whether my G.I. was trying such a hard approach because it seems so early in the disease course. Perhaps trying to achieve remission quickly and nip it in the bud, so to speak.