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Crohn's Disease
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Posted 8/8/2018 6:41 PM (GMT -5)
Been here since Monday. All blood work was good. C-diff cleared up, alll inflammation markers low or in good range. Today had colonoscopy but of course had active ulcerations and inflammation at resection site. It actually worse than last fall. I have a few hea tests next, but then meet back with the GI. Need to find out why i have just diarrhea 5-8 times a day. Also, while i am on stelara they have mentioned adding something to it. This is the normal course of my crohn’s so really har to know if stelara is working or not

More to come
Posted 8/8/2018 7:29 PM (GMT -5)
At least you have some good news. Hopefully, with some added maintenance meds, you can get the inflammation under control. How long have you been on Stelara? Hope you're feeling better soon.
Posted 8/9/2018 8:36 AM (GMT -5)
Hey 74monte. I started in Nov 2017 with the infusion now injections every 8 weeks. From what i have been told there is no data on increasing the frequency or adding something else, but we Shaw see what the reccomend
Posted 8/9/2018 11:14 AM (GMT -5)
My doc added Azathioprine (worked up to 150mg/day) to my Stelara. I'm currently on every 8 weeks for Stelara but that may get bumped up to every 4 weeks. Hard to judge effectiveness with my case (aside from not developing new fistulas).

I will say that with the Azathioprine added I have had more general fatigue. Nothing that keeps me in bed but it sometimes takes more to get going and I find myself getting tired earlier in the day.
Posted 8/12/2018 8:32 AM (GMT -5)
here is the final pathology report... " Terminal Ileum, endoscopic biopsy: Moderately active ileitis with erosion. No granulomas. There is no dysplasia. CMV immunostain is pending and results will be reported in an addendum.

I believe is the CMV is another way to look at other infections. but i could be wrong.

So no granulomas means no inflammation, right? but the ulcerations are there and show active.

The question then becomes is how is the Stelara working. It is obviously not stopping the crohns, but could it be slowing down the inflammation?


I have so many questions now. meanwhile, although the c-diff has cleared and i m having fewer BM/s each day, 75% of them are still diarrhea.

thoughts?
Posted 8/12/2018 10:13 AM (GMT -5)
M, active ileitis is inflammation so you are not out of the woods by any means. Good news on no granulomas, those can lead to fistulas. As for the diarrhea, the active disease is your culprit. Once you get the CMV results, you may want to ask your dr about some Lomotil for the diarrhea or Immodium, but thats only when the dr is positive for infection is lingering.

I looked up the CMV stain test, yes it is used to check for infections & reactivated infections. I read several studies that brought up both bacterial & viral infections. I hope the tissue that was sampled comes back normal. There is good info at the Mayo's website on the testing.

Just my thoughts, if this were me, I would consider asking the dr to try me on 4 weeks intervals instead of 8 weeks. We had someone else recently get moved to 4 week injections. But, since the change is relatively new, it's too early to tell if there is improvement yet. Given your history, I would think you would have a good shot of getting insurance to approve it.

Keep us posted.
Posted 8/13/2018 6:30 AM (GMT -5)
Susie, thanks for the clarifications. I didn’t have an exit review when i left mayo as i had testing alll the way to the end. I have a phone interview with them late this week and plan to bring all of this up.I see my local GI on Thursday. He will want to compare his scope from Nov with the one mayo did to see if there is more ulcerations.

Also, i have been approved through the end of my max short term disability, which is 6 months and ends Sept 30. I have asked the insurance co to move me to long term. I have given up the fight to try to get back to work for now. All 4 of my local Drs have all said they support my decision and will write up what is needed to support the long term. I started seeing a therapist who has worked with my local PCP on my anxiety. I told him about my stress around dealing with al of this. His comment was in all of his 42 yrs of practice he has only seen 2 or 3 patients form whom disability was so obviously necessary. He said he added me to his list now. I asked about paperwork, and he said this isn’t his first disability rodeo and he can be very persuasive in his notes, and forms. He made me feel so much better about this as I was feeling guilty about taking long term, So, with their support and encouragement I am going that’s route.

Thanks
Posted 8/13/2018 9:47 AM (GMT -5)
M, please let us know what happens with your local gi & the Mayo drs. In the meantime, try not to stress too much over all of this, I know easier said than done. Boy, been there & done that too many times.

It sounds like you have a good therapist to work with. One thing to make sure of about the long term disability is that there is no gap between transitioning from short to long. Do you know if you are going ti be required to fill out an application for the long term? I know some companies do require this. If so, be sure they send you the paperwork well in advance to avoid a gap.

Getting your health stabilized is more important than any job. It took me years to figure that one out. I just kept thinking oh this will pass & I can get past it. The only person I was kidding was myself. It's an adjustment, but it does get better in time.

Keep us posted.
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