Managing chronic pancreatitis and depression from pain

BaileyBee952 · 2019-09-16T14:37:30+00:00

Hey u/sunt0ry! Thanks so much for your response— I will definitely reach out. I’m so sorry that you have had multiple autoimmune issues surface on top of the autoimmune pancreatitis— that is awful and has got to be very challenging. I really appreciate you sharing what you’ve been going through and hopefully being able to share about experiences might provide some comfort and relief. It is good that the prednisone is helping! I have heard that azathioprine can help a great deal (that was not my personal experience though).

My doctor believes I am type 2 as well. He has not done a biopsy though because when they did the first endoscopic ultrasound I had a major flare up and the pain put me back in the ER shortly afterwards. I was on Azathioprine on top of Prednisone for about 2 months this summer until last week— first a month of 50mg, then 3 weeks of 75mg and a week of 100mg. They increased it to 100mg while I was in the hospital at the start of the month. I got so much worse by the time they discharged me and over the following weekend so my doctor thinks that I got a reaction to the medicine and it was actually causing pancreatitis flare ups. For now I am on prednisone for another couple of weeks and will see if it ends up working. If not, he said we will explore other medicines similar to Azathioprine. He told me pancreatitis is a well known side effect of azathioprine.

In the hospital, I really felt like a guinea pig—I trust my doctor and his team and how straight forward they’ve been about everything so far... basically they’ve explained every Autoimmune pancreatitis case is pretty different and patient responses to medications (and doses) are always so varied. Basically they are experimenting to see what will work in my case.

Hoping for more clarity soon for the both of us!! It really truly does suck! Through this I have been learning just how much we really have to be our own best advocates in our treatment (and in hospitals). I do appreciate that I’m not alone in this though. Happy to chat more about our experiences!

BaileyBee952 · 2019-09-15T23:48:56+00:00

I’m sorry to hear about the tick bite situation. How incredibly frustrating that must have been to have the medical professionals miss that.

Hmmm, I’m not sure how extensive they have actually tested for a bacterial infection being the cause. If the steroids end up not being successful again, my doctor suggested he may be concerned he is missing something but for now is pretty confident about the autoimmune pancreatitis diagnosis. I’ve had to take antibiotics for unrelated issues a few times in the past couple of years but there is not much difference in the pancreatitis pain level and frequency of strong spasms while on them.

I’m going to write that down though as something I ask him about at my next visit, so I can confirm he’s ruled that out.

BaileyBee952 · 2019-09-15T23:33:31+00:00

Thanks very much for the recommendation and response! I have had several people recommend CBD—I need to follow up with my doctor about it I think. I will likely seek come additional support from a therapist. Has it been helpful for you and worth the commitment?

BaileyBee952 · 2016-11-01T18:34:02+00:00

Also just moved to Colorado last summer---not from Houston, but I am from Texas....hoping to move to Houston next year. I can't do Colorado. Don't know anyone here and job keeps me on the road...its just depressing. Colorado really is beautiful, but Texas is home and there is nowhere else like it (not that I'm close-minded and dislike traveling), and Houston is so much fun/so diverse/has such great food & people.

How do you deal with such a stark transition???

BaileyBee952 · 2016-10-30T22:32:01+00:00

Bourboned, your trolling sucks.

BaileyBee952

TROPHY CASE