Posted 6/12/2015 9:26 AM (GMT -7)
My flare originally started in mid-April. Really, it was my first flare after finding a medication (Lialda) that worked. BMs increased to three or four times a day, small amount of mucus and blood, etc. By the end of the month, my Lialda was no longer covered and I was switched to a low-dose of Apriso.
By mid-May my flare had gotten significantly worse. 4 apriso a day plus a canasa at night was doing very little for me it seemed. It was around this time that I actually began to experience a continuous pain throughout my lower back and abdomen. My energy levels dropped significantly and the number of BMs reached 15 times a day or so. Life became quite difficult to manage at this point, but my GI kept saying to give the medication a bit longer to work.
By May 28th, I was in constant severe pain and nausea. I could no longer stomach simple broth or rice. More than a few sips of water at a time caused nausea severe enough to vomit. My doctor prescribed 40 mg of prednisone.
On June 3rd, I checked into the hospital. It had been four days since I had been able to keep any nutrition down and an entire day since I had been able to keep down any water. BMs had increased to 20+ a day, all predominately blood. I hadn't seen a semi-formed stool in weeks. I'm 6' tall and weighed 175 in March, the day I came to the hospital, I weighed 139 pounds.
That day, I was given a new GI (Yay!), started on 20 mg IV prednisone 3x a day, .5 mg IV dilaudid every 2 hours, and 4 mg IV Zofran every 4 hours. Also, like so many IV fluids that it was absurd. They performed a CT scan and confirmed that the inflammation had spread throughout my colon. Better is a relative term, but I was nearly completely pain and nausea free by the end of day 1. They placed me on a clear liquid diet, which I seemed to tolerate quite well.
Around day 3, the amount of blood in my stool had decreased significantly. They promoted my diet to full liquid to see how things would go. The number of BMs by this point had decreased to 15 or so a day. It was also on this day that they started my first Remicade infusion.
Day 5, they allowed me a full diet, letting me eat whatever I felt comfortable with and things have continued to be basically the same.
It's now Day 9 and I've convinced them to switch me to full oral medications. I'm down to under 10 BMs a day, though they generally come in packs, where I'll have 3 within an hour of waking up, 3 within an hour of each other in the afternoon, and 3 in the late evening. There's still no blood in any of the stools, but I'm still experiencing a great deal of pain and discomfort before, during, and for around 30 minutes after the series of BMs. The BMs are, at best, semi-formed and simply contain a lot of gas and a lot of liquid.
Looking to get out of here by tomorrow, does anyone have any advice regarding decreasing the number of BMs, decreasing the liquid content, and finally kicking out the pain that surrounds them? It's not a constant all-consuming thing, but is a stark reminder that I'm not exactly at the peak of health.
My diet currently consists of so much god-darn salmon and soft cooked veggies and eggs and rice, that it's starting to drive me a bit bonkers. I'm thinking about starting on some kind of probiotic once I get out of here as well, so any advice on that would be most welcome.
Also, I'm lactose intolerant. Has anyone here with lactose intolerance tried Lactase pills with any success?