This is long but I really need advice about everything.

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.

Multivitamin-1x daily

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-

Dicyclomine 10mg

Ondansetron 4mg

Oxycodone 7.5/325mg

Hydromorphone HCL 2mg

Lorazepam 1mg

Tylenol w/Codeine #3

OTC sleep gels (i was prescribed ambien, it didn't work, these don't really work either)

Tum-Ultra 1000

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..

 

Oh, I forgot to mention that we're switching GI's too because of some rude comments he's made during our last few visits. I'm also getting a new physician too.

suebear-What is Humira exactly? A few people have suggested it to me but I have no clue about it and haven't talked to anyone else that's had it to see how it worked?

     You sound so full of anxiety I can feel the vibes myself.  How long were you on Remicade?  Remicade failed me after the 3rd infusion.  Humira failed too and I am now facing surgery.  My ulcerations are only in the rectum (4 inches altogether) and has never traveled further into my colon, probably thanks to the Colazal.

     The only advice I can offer you at the moment is to just take one day at a time.  See what they offer you at the U of M.  Make a list of questions to ask the doctors.

     I didn't think UC affected the small intestines either.  When was your last colonoscopy?  Are they sure it isn't Crohn's Disease?  Are you on a low residue diet?  This would be beneficial if you are experiencing symptoms of UC returning.

     I hope you get relief soon.  You are going through way too much for such a young person.  Keep us updated.

My friend, you appear to be in world of crap. I would suggest you start to see a psychiatrist. You are really dealing with some heavy medical problems. I saw one for many tears until he died. It doesn't solve your medical issues but it might help deal with them. He can also give meds for your anxiety...

MeowMix2, I agree that you should look into counseling. All that you are dealing with is a lot for anyone, even more so for someone your age. My daughter was very ill when she was 17, in and out of the hospital, multiple brain surgeries, etc, etc. She dealt with severe anxiety and panic attacks for over a year afterwards and also went to counseling. She was on Lexapro for about a year and it seemed to help. The counseling with a therapist enabled her to get off the Lexapro. She still has some anxiety and avoids pain meds. and on the good side any kind of illicit drugs that affect her ability to feel in control. I think one of the most difficult things is feeling like you are not in control of your own body. Do you do anything creative, writing poems or art? It might be good to find an outlet. It would also be good to find someone who is objective and not directly involved like a therapist so you can unload some of your burden and find some ways to cope with a situation no one should have to cope with, especially someone your age. I am thinking about you and hoping for so positive changes in your future. You have been missed on the forum. I remember your posts in January/February and how rough of a time you were having then. Again I am so sorry for all you are dealing with.

Man they have got you on a lot of drugs. Sounds like you have a lot of inflammation in all of your body and having a major auto-immune response for some reason. I would look for any foods and any supplements that are anti-inflammatory to help. Only problem with supplements is they take a longer time to work if they do, maybe up to a month in some cases. Tumeric and Boswellia are a few. I eat canned spinach and it almost always seem to help inflammation in my gut when I do, like a half a cup, taste gross but it helps me. The canned spinach is soft and easy to digest.

I wonder if they let you try sulfasalazine, it is a cheap drug, it helps both arthritis and colitis, and has been used for many years before Asacol. I take it where other drugs actually made me worse off. A person has to be careful though if they are allergic to sulfa based drugs, it can cause a bad reaction.
I think a good probiotic can help to an extent.

Stress will only make things worse, I hope you can find something to relieve your anxiety.

I just wonder by chance did you have a vaccine shot within the last year or so?

I forgot to mention, I take 4000 to 6000u of vitamin D daily, and extra vitamin A, E, C as well. Vitamin D is key in immune system control. Just tossing out some ideas. I really feel bad for you.

Post Edited (Zippy123) : 5/30/2010 9:23:48 PM (GMT-6)

Dear beeswax- I'm suprised someone rememebered me! lol I know I haven't gotten on here in way too long but I've been so busy trying to catch up in school and sick and still trying to have a life at the same time... But you are exactly right about the whole small intestines/Crohns thing. Another thing I didn't like about my GI was that he has a bad habit of leaving important info out. I didn't find out that I actually have Crohn's until the U of M called to confirm my appointment. Apparently the doctor had written in my chart that I have a new diagnosis of Crohns but didn't tell me because he didn't think it would make a difference seeing as how they're treated the same. Now why he didnt' figure that out sooner when I got an upper endoscopy because I had trouble swallowing and he found inflammation in my stomach, I don't know. But I do know I need a new GI. And yes, I am looking into counseling. I have my first appointment soon but I don't know how much it'll help. I really hate the way psychologists look at me for some reason so I don't say much. And as far as a creative outlet I do enjoy quilting and gardening. I've started an herb garden and I'm picking out quilt patterns to work on this summer.

Dear Christine1946,
I have only had 4 Remicades now. Not due for another for about 6 weeks. They really don't seem to be helping at all. I actually had my first infusion about a week before I went in the hospital the first time. I'm guessing thought that when I go to the U of M, Humira is going to be suggested. And as far as my diet, I'm still eating everything like a normal person even though my stomach kills me after I eat. But I figure soon a day will come when I'll have to run to the bathroom after eating anything and be put on a special diet of chicken and spinach so I'm trying to eat everything while I can. I know thats probably causing me to flare up faster but I'm a teenager, food is very important to me and sometimes I just can't accept that I'm not like everyone else and I have to set limitations on what I eat.

Dear Subdued,
I think they taste gross so no I'm not on probiotics. =\ Might be a good idea to suck it up and try them though.

Dear RJD,
My physician just refered me about a week ago to a psychologist to figure out what meds are best for my anxiety, depression and insomnia. I know I'm on a lot and a big part of the problem is that I'm been on Percocet and Dilaudid for so long that any other kind of medicine has barely any affect on me so I have to take more for it to work. That's why my dosage of Xanax is so large.

Dear Ugh Just Ugh,
I don't think the antibiotics have much to do with my UC still feeling crappy. I just started taking them about 3 days ago and I was feeling like crap months before that. I hope I don't get a urinary tract infection or something from these stupid antibiotics. That happened to me last time. Also I have tried meselamine enemas. I was on them until my flare up was basically gone then my doctor told me I could quit because he knew I hated them. I was thinking too that it would be beneficial for me to start them again. And I took Asacol for a long time too but they went right through me. I could see them in the toilet and they didn't look much different from when I swallowed them so he took me off of them. I have heard of Lialda and Apriso but I've never tried them. I'll write them down and ask about them at the U of M.

Dear Zippy123,
I did have a flu shot and an H1N1 vaccination and tb tests all done within the last year. And with the combination of my multivitamin and iron/calcium supplements I get about 3 times the reccomended daily amount of everything lol. I think I'm good there. Thanks for the suggestions though. And I have been looking into herbal things and vitamins, more natural things to help my symptoms. I haven't been on the fish oil for too long so I don't know how that's working yet but I'm also going to this place called the Borne Clinic. They believe in like all natural stuff and they do a lot of tests to tell you what you're allergic to and what kinds of food you should be eating and try to treat you naturally. Maybe they'll have some good suggestions about those kinds of things.

Dear Elephant Pipe,
Thanks for the suggestions as to which doctors I should see. Great to get some ideas since we're looking for new ones. And I think it's crazy that I'm on so many painkillers too. You should see the way they look at me when I show up to the ER or the doctors office complaining of pain. But honestly, I've been on Percocet and Dilaudid for almost 6 months now. I have built up a tolerance and unless I take more that I'm supposed to they don't even phase me anymore. I've been trying to ween myself off of them but the doctors won't give me anything but OTC stuff which probably won't work until I'm completely off the prescriptions. I don't know. I just know I'm always in a lot of pain and almost nothing helps to make it go away. I've tried heating bads, hot baths, topical treatments, meditiation. Nothing is helping and I honestly think the doctors just think I'm addicted to the crap. Which my body is probably dependent on them but one time I just got tired of taking pills and stopped taking everything for about 3 or 4 days and I was fine. I can stop anytime I want, I'd just like to not be in pain first.

Well, thanks soooo much everyone for your suggestions. You all are always so kind and helpful. It's nice to know there are always some people out there that support me. =)

I hope you can get into U of M to see someone!
Even if you can stop the painkillers abruptly maybe you should taper anyways to avoid any adverse affects? Ugh, good luck! Be careful with all that stuff.

I'm sorry you are suffering,
I think maybe you need to see a therapist to help you get through this tough time, and not just to prescribe a medicine but someone to talk through things and figure out ways you can help yourself. It seems you might be making this harder than it needs to be. The mind/body connection is real and needs tending!

Feel better, I wish you peace.

Do a search on the Specific Carbohydrate diet. I'm a pharmacist and I refuse to take the medications that I dispense. Too many side effects, and no real treatment of the disease itself.