Ok so my situation is kinda sucky right now. I had my first flare up starting in September of last year. Wasn't diagnosed until January. At that time it was only proctitis. I was put on 30mg of Prednisone and Asacol 3x a day. about
mid February it was so bad all I could do was lay in bed. It hurt to move at all. I couldn't eat a crumb without it going straight through me. I would use the bathroom between about
30 times a day and it was excruciatingly painful to get there. Eventually my parents took me to the ER. I was prescribed vicodin. It worked for about
12 hours and then it starting wearing off really fast so they took me back to the ER. I was admitted and stayed into the hospital for 11 days. Before I left they determined that in the three weeks after I was first diagnosed with proctitis, the colitis had spread through my entire colon and even into my small intestine. The next morning at home I woke up and all of a sudden I got excruciating pain in my knees and started screaming. I couldn't move at all. My parents carried me to the car and I was re-admitted into the hospital for another 6 days. Turns out I have arthritis too and was experiencing a bad flare-up. I was put on a lot of medication and really strong painkillers. Over the last few months my ulcerative colitis has really improved but I feel my symptoms coming back. I told my doctor and he just wants to keep tapering me off the prednisone. My arthritis has also improved but it's still bad enough that I miss a lot of school and still use the painkillers I was prescribed about
once or twice a day. I was put on two different medications for my arthritis but neither helped so they took me off of them. Because of all the bleeding that I'd had from my UC I'd become very anemic. My doctor scheduled for me to have two iron infusions, 500mg at a time. The first time it went pretty well until it was over. The nurse unhooked me, I sat up and I could barely breathe. My ribs and back hurt so bad I couldn't move them enough to get air. I took a percocet and they watched me for an hour until the pain pretty much went away. After leaving the hospital I noticed that my joints had swelled up, and were very red and painful. We told my GI what happened and he said to go ahead and get the other one because I was still very anemic. For the next two weeks my arthritis was horrible. I couldn't go to school, could barely get out of bed, and when it rained I could barely stand it. Not even two minutes into the second infusion I had a severe allergic reaction that caused an asthma attack. My head felt like I was gonna explode and I just kept getting hotter and hotter. The nurse called the rapid response team. Thankfully they arrived quickly and got everything under control. For about
the next week my arthritis went out of control again. After nearly losing their child, my parents refused to let me get any more iron infusions. We made the decision to double up on the iron supplements I was taking and within a few weeks my blood count was back up to normal. Now, my UC symptoms are still getting worse. I'm noticing the same pattern I had with my first flare up. My mom tryed to get my GI to schedule an appointment for me at U of M as soon as possible. He wanted to do a sigmoidoscopy first. He said he only found a little inflammation and didn't think it was neccessary for me to go to U of M urgently. Now, three weeks later my symptoms are getting worse and worse. I'm on way more medication that any 16 year old should have to be on and after all I've been through it's starting to wear on my mental health. I've been put on medication for anxiety, depression, and insomnia(all of which I had before any of this started)and they've all been getting worse the past few weeks. It takes me about
5 or 6 hours to fall asleep and I've had some pretty severe anxiety attacks in the past few weeks. Pretty much all of the doctors I'm seeing now, my regular physician, my GI, and my rheumatologist have told me there's nothing more they can do unless for bleeding comes back. What makes me mad is that I KNOW it's coming back. I know my body and I don't understand why I'm being tapered off the prednisone when my symptoms are coming back. The remicade hasn't seemed to help at all either. I know I need to get off of some of these medications but shouldn't the doctors do something? Isn't there anything else they can do? I have an appointment this tuesday at U of M which we had to wait 3 months to get and I'm sure they'll have some other suggestions but what do you guys think I should be on or doing differently? I'm scared my liver is going to fail or that my stomach is going to get all eaten up from the Percocet and other various drugs I've been taking for about
6 months now..
Here's my medicine list.
Please keep in mind that along with UC, I also have asthma, A.D.D., anxiety, depression, arthritis and chronic headaches.
Vyvanse 30mg- 1x daily
OTC Iron/Calcium supplent- 2 tablets 1x daily
Alprazolam 2mg-3x daily
Setraline 100mg-1x daily
Prednisone-right now I'm at 10mg 1x daily for another week and then down to 5 for two weeks.
OTC Dulcolax- 1 softgel every 3 days. I get kind of constipated from all the meds.
Cephalexin 250mg -1 capsule, 3x daily for the next week and a half. I have strept throat right now probably because of my suppressed immune system.
Nexium 40mg- 1x daily
OTC Fish oil supplement- 2 softgels 1x daily
Remicade every 8 weeks
The following medicines are all taken as needed-
Hydromorphone HCL 2mg
Tylenol w/Codeine #3
OTC sleep gels (i was prescribed ambien, it didn't work, these don't really work either)
Pro-Air Abuterol Inhaler
Does anyone have any advice about anything? I know this was long but I don't know what else to do and if the doctors at U of M don't know what to do either then I'm screwed... I want my normal life back. I went from being a star member or my schools track team/team captain, class president, A student at a school that works with students interested in health care and and A and B student at my regular high school, volunteer piano player at a nursing home, all around happy person to be around good kid to basically nothing. I can't do track anymore, I had to give up my position as class president, I'm not doing great in my classes because I missed about 2 and a half months of school and continue to miss about 2-3 days a week. I don't play the piano at all anymore and I don't hang out with friends very often because either I'm too sick or they have found more interesting things to do and people to see when I was not at school...
I need advice..