Posted 12/7/2012 2:26 AM (GMT 0)
Hello, I have been reading this forum for the past few days trying to make sense of my new situation. First, thank you all for taking the time to chase down odd leads, post honestly about your experiences, and to candidly discuss the emotional aspects of your situations.
I am not sure what my future will look like since I am only less than two weeks diagnosed (severe UC diagnosed by a full colonoscopy/biopsy) but it seems that whatever I had that put me in the hospital for a spell isn't all that similar to what I see described here. Maybe because so many of you are concerned with management of the condition and I am only just learning the difference between a colon and an intestine, I am just not yet aware of the similarities. Anyway, I figured if I just try to tell the story of my past three weeks, someone might be able to find some value in it and perhaps others could help me make sense of it.
I am 42 years old, have always had fairly soft BM's but also have always quite regular (with the aid of coffee maybe). Basically, I always read on the toilet but never had any sort of problem with it- I just took my time doing my business. November 14th, the Wednesday before thanksgiving week, I stayed up all night helping my daughter study for exams. She went to bed around 4am but I stayed up, planning to wait til the rest of the family got out the door and then just go to bed (I can work at home when I want to and I occasionally work at night and sleep during the next day so that isn't all that unusual). I was exhausted when everyone left and ready for bed when I noticed flu type symptoms coming on fast. The whole family had a nasty bug the week before so I figured I had it too.
I found myself with sweats and chills which prevented me from sleeping all day. By the time the kids started coming home, (I have 3) I had added diarrhea to the symptoms and was heading to the bathroom every 20 minutes or so. I felt awful but, figuring I was sick, just tried to wait it out. On Saturday my wife took me to the emergency room. Hadn't gone 20 minutes without a trip to the bathroom yet. So, no good sleep, dehydration, delerium, weak, etc. ER took a stool culture, loaded me up on antibiotics and anti spasming drugs, and sent me home to wait for the culture results. Diarrhea did not stop. No food but my wife was force-feeding me electrolyte water and probiotics. Still at least diarrhea 2x per hour. Monday, still no food, no more than 40 min consecutive sleep, I am whisked back to the emergency room. I have no memory of this. I had gotten very sick.
They gave me a CT scan, loaded me with fluids and morphine, and sent me home. The culture had not come back yet so I guess they still assumed it was bacterial or viral. I don't know when the blood first started to appear in my stool, I think around sunday night, but by tuesday, I was pooping only blood. Still no food. Managed to get a piece of toast down which I apparently identified in a poop not too much later. Otherwise, blood. Slightly more than twice an hour. They prescribed some sort of valium thing to calm my spasms and help me sleep. It worked for a day or two. I apparently slept around 4 hours at a time at least 3 times between tuesday and thursday morning. On wednesday my culture came back negative but, when my wife called my PCP, they didn't give me any direction and when she called the ER, they said they wouldn't admit me for some reason. That Thursday was t-giving so I stayed home, assuming I was on the mend. Still no memory of the week though. All this is from second hand information.
A friend who is an ER Phys. Assist. came by after t-giving dinner to check on me and was very concerned. She told my wife to take me to a different er in the morning and that they would admit me. They did. I woke up on Saturday in the hospital, in the ward already admitted and a day into my stay. I knew I had been sick but didn't realize I couldn't remember the prior week because I figured what else was there to know but that I had been sick. And anyway, I was still sick. But I felt waaaaaayy better. IV fluids and morphine had helped me sleep a bit better during the breaks and the assorted things they added which I don't remember had restored a bit of vitality. I was still pooping straight blood at around 300cc more than once an hour but the morphine and fluids made that more tolerable.
GI doc at the hospital was convinced to do a colonoscopy on sunday. Came back with likely diagnosis of severe UC (the entire colon was ulcerated, hamburger I guess) waiting for the biopsy results to come back from the pathologist to make the diagnosis confirmed. But he started me on 60mg IV steroids 2x a day anyway. Next day, biopsy confirmed the diagnosis and I stayed on the IV steroids. Monday I was done bleeding and had eaten a fair amount of straight turkey broth and some jello. Poops were still diarrhea and frequent but getting easier.
Tuesday, I felt a lot better and they switched me to oral prednisone, 40mg a day. Wednesday I felt way better and they were going to let me go home. They gave me 4 pills of mesalmine with my prednisone like they had the night before but I hadn't eaten so I got violently ill, vomiting and water diarrhea, delerium, the works. I knew it was the mesalamine, not sure how I knew other than that it was different from the colitis and, after sleeping for several hours and having a whitebread turkey sandwich, I felt better and they let me leave without the mesalamine. Instead he prescribed sulfa-whatever it is. I started taking it yesterday.
Anyway, I stayed mellow once I got home, mostly bed, but managed to get my BM's back to once a day within 24 hrs of being home, no blood, a little hot or acidy feeling but not much softer than normal. I am basically not sick from the colitis any more and haven't been since the day after I got home. I am eating strictly on 2 hr increments, no fiber, and being cautious about my digestion, also exercising lightly for about 1/2+ hr daily.
I am not better though. The prednisone is like being taken over by a crazy disease. I have sudden fatigue, moments where I totally blank out and have to reconstruct where I am one solid thing at a time. Things like, there is a light, a wall, a window, a street outside, maybe my town, maybe this part of my town, maybe a doctor's office, all the way untill I can put together how I got here, where here is and what I might be here for and what I might be supposed to do next.
I have become an emotional wreck- crying at a song on the radio, yelling at my cat, laughing at my misfortune, crying at my misfortune, lying wide awake at night and wishing I could help my family take care of me even though I shouldn't be sick because I am not sick, hanging up on people I called because I don't know who they are. It's bad.
My GI cut me down to 30 mg a day of prednisone but is adamant that the sulfalazine be at 6 gm per day by the time I am down to 20 mg of prednisone a day. I will taper from the prednisone by staying on 30 for ten days, then decreasing by 5 every 10 days till I stop. The sulfalazine is supposed to help the transition.
I feel like the colitis is cured though. The prednisone is the problem. The drugs are what is making me sick. My GI is worried about relapse and I can't really imagine that being as bad the drugs. No where near as bad.
I just can't make any sense of any of it and I am crazy from the prednisone.
Melatonin has helped me sleep for two nights now BTW.
Well, there are probably timing errors there and other omissions but it's close.