Discharged from the hospital, having a really hard time...

I started flaring a few weeks ago and made a post about it after being hospitalized. I had been going to the toilet 35-30 times a day, usually to have small, unformed, bloody craps with the occasional diarrhea and so forth. The worst part was/is the cramping that comes along with it.

I was admitted to the hospital the previous Friday and discharged on Saturday. During the hospitalization I was given IV steroids, enemas, antidiarrhea medicine and so forth. After a week there the blood had mostly disappeared and I started to feel better in the daytime however I was always totally lacking in energy and spent most of the night waking up/going to the toilet on a permanent cycle just to have small, brown-coloured stools.

When I was discharged on Saturday, they gave me a lot of medicine to use at home and my doctor wants me to go on humira in a few weeks. Right now I'm taking Prednisone (30mg though it was higher when I was on the IV), tylenol (I get fevers in the morning), a medicine called Polybutine (maybe called "Trimebutine" in the US), a medcine called Lacidofil, and a medicine called Mucosta.

Since I came home, it's been really up and down. Sometimes I'm alright and I am able to sleep in the day time, but usually at night I'm up all night with indigestion and it gets so bad that sometimes I vomit. I think it's a side effect of the meds. I still go to the bathroom quite a bit at night but the meds do help a bit... I actually just gave up on trying to sleep at night because the symptoms were too much. I just lay in bed and toss and turn due to indigestion, I can't stop thinking (probably prednisone), and I keep running to the bathroom every 20-30 minutes. So I mostly just sleep in the afternoon now.

I'm also unable to really go anywhere or do much. I'm supposed to go to class today but there's no way. Yesterday I was dehydrated so I felt lightheaded, today it's not so much lightheadedness but I managed to get to the first floor in my building, feel a tremendous urge to use the toilet, go back up to my apartment and then soil myself right in the entrance. I'm just glad it happened there and not out on the street.

My doctors knew about most of this when they discharged me but they still said I was fine to go home, I just have to stay on top of it. The hospital was hell because I was sharing a room with five people, some of whom were very noisy and some of whom were occupying the bathroom almost as much as I was making for some scary situations.

Any advice to deal with this? What should I do? I've already failed the course I'm taking due to absenteeism so part of me just thinks that instead of forcing myself to go to school... I should just stay at home and rest. Unfortunately my wife went overseas for several weeks just as the flare started so I'm not able to ask for help or anything.

Suggestions?

Sorry to hear how you are doing. I was sent home from the hospital last year and it took me 3 months to be able to get back to work. It will take time.

1. The prednisone will keep you up at night.
2. The prednisone will also give you weird thoughts, so be aware.

Even without bloody stool it took me months to be able have a normal stool and eat well. Give it time.
You should be getting better every week. If you do not see improvement, call your doc.

i used to just take prednisone with coconut/almond milk. it seemed to be enough to settle things down.

i'm also a proponent of remicade as for me it kicked in immediately when i first started it. although lately i hit a point where the latest infusion didn't seem to help, i'm going for another one next week with hopes that it helps