Running out of options

[eddieswood]

hi my name is Eddie, I'm 18 and was diagnosed with ulcerative colitis in November of 2012. I have been on prednisone since November, and when they started to taper me in February I ended up in the hospital for two weeks. now I am on 50 mg of prednisone daily, 50 mg mercaptapurine, asacol, canasa, a pro biotic supplement, and I am going for my second Remicadee infusion next week. I'm tired of all the drugs, especially since none of them are working. they make me tired all the time, on top of feeling sick and being in so much pain that I have been on percocet for a few months. I'm missing my senior year. the drugs just make things worse. I'm constantly hungry but naseuos at the same time, tired and twitchy, and when I do get to sleep I get drenched in sweat. also my muscles are so sore that I can't play any sports. I don't want to complain, I know people have it a lot worse than I do, but I'm just tired and I feel like I'm out of options and I just want to get better before college. IG anyone can think of something that would help in any way please let me know.
thank you
PS. I don't want surgery..... at all.

 

[Jim (POPS)]

Soory to hear you are going through this, I hope you find health soon.

Jim (Pops)

 

[2thFairy]

Wow, Eddie.. You are certainly having a tough time! I would recommend that you try and stick with the Remicade for at least 6 months before giving up. When you say it will be your 2nd infusion, are you talking about your loading doses? Once you are done with the first 3 loading doses, then you will put on an every 6- or 8-week schedule and it's not such a pain in the butt to keep up with.

I wish you the best. I hope you will find an answer without surgery.

 

[eddieswood]

thanks, and yeah I just started the loading doses so I know I'm being impatient with the Remicadee, but the way the doctor presented it I thought I would be better right away, but that's the way he makes it seem every time I start another new medicine

 

[HisQueen99]

Oh Hun I'm sorry your having such a hard time. I truly am. It's ok to complain. We all do now and again. Suffering from these awful diseases is torture sometimes and it's easy to start feeling hopeless BUT you will have good days or better days. Keep working with your GI and maybe tweak your diet a little. Try to stay positive and know you always have someone here to talk to. It's very frustrating, I know. I would also talk to your doctor about how your feeling emotionally, as well as physically. Tell them that your weak or very tired allot. Maybe they can give you something to help with that. Don't beat yourself up if your body needs to rest. Taking a power nap every day is a must for me. Keep your head up.

 

[2thFairy]

Your frustration is understandable! I would probably punch a doctor who told me everything was going to be great and a quick fix!!! I ran through all of the medications available for UC (that I wasn't allergic too) and things would work for awhile and then just stop working. Humira just recently became approved for UC, so if Remicade doesn't do it for you, you could try Humira next.

 

[Ya noy]

You should probably give the Remicade more of a chance, but if the meds don't seem to be working and you want to avoid surgery, have you considered trying any alternatives, such as the SCD, Paleo or GAPs diets, juicing, and/or the various supplements? They don't work for everyone, but quite a few have reported that they've experience great success with these alternatives.

My husband was never formally diagnosed, but had chronic colitis, to the point where he suffered in agony and was hospitalized several times. Crohns and other digestive disorders also run in his family. But ever since he started drinking my probiotic laden kefir, he hasn't had a single reoccurrence, or any digestive problems at all, but we had also already cut out all preprepared food products, to cook everything from scratch, as Paleo and organically as possible.

Some do well on the SCD diet, while others swear by juicing an/or supplements. If interested in trying any alternatives, you should visit the subforum. Just realize that everyone's body chemistry is different and what works for one doesn't necessarily work for another.

I wish you all the best