Just depressed

I'm just upset lately because I don't know what to do next. I'm on remicade and this isn't working. I have horrible side effects from it (extreme fatigue, joint pain, a rash, and chest pain) they give me stuff to mask the side effects(prilosec, zyrtex) but I just feel like crap. I don't have lupus from the remicade so now i have to decide if I want to take humira, the trial drug, or surgery.

I'm just so upset because I feel like every decision I have is a bad one. I know I could have something worse but I wonder why me. I look at me kids all the time and wonder if I will get to watch them grow or if my life will de shortened because of medication or surgery. I know this isn't in my control but it just sucks.

The medications have horrible thinks that could happen to you while taking them but surgery is scary and has alot of risks too. I just wish I could go back and be healthy again. I know i can't but I'm sick of this and I've only been diagnosed a year and a half ago. I feel even if I have surgery that this will never end. I could have problems with the pouch etc. I just can't see living my life like this for another 50 years.

Sorry I'm just down. I don't know what to do. I'm thinking of trying the humira but I'm so scared being on that and the remicade now. I worry about it all the time. The surgery is a whole different thing with risk with surgery, the bag, the pouch.

I just started school. I have young kids at home. I can't be in the hospital for a week or worse if need be.

Sorry I know you guys all understand. I've just been having a bad week.

     Oh momofthree....I feel sooo bad for you but there is light at the end of the tunnel.  I know exactly what you are going through because I have walked in your shoes as most of us in here has.  However, your situation is a lot tougher because you have young children to raise.

     The only advise I can give you is....try the Humira.  It does work for some people.  Give it a few months.  I gave it three.  If it fails...then seriously, consider surgery BUT make sure you find a GOOD colorectal surgeon.

     You probably have read my posts so I won't be redundant.  I have no problem wearing a bag for the rest of my life.  You may feel otherwise because you are so young.  I couldn't see myself facing more surgery, so I am glad my surgeon flatly refused to do a j-pouch on me.  I still don't feel 100%,  but then I attribute the fact of my age (64) and I believe my body is going through some kind of withdrawal because I was on meds for my ulcerative proctitis for twelve years!  Now I only take one pill a day which is for blood pressure.

     Whatever your choice, I wish you the best of luck and will keep you in my prayers.

I asked the nurse for a surgery consult when she called with my test results and she said I had to see rhumitology first to find out why i have joint pain, a rash and extreme fatigue, I can tell you it is the remicade because I had none of these problems before, except the fatigue and it wasn't this bad. I see the doc at the end of oct. and she said I will have to talk to her because she also wants to scope me before that. I will tell her I want to at least talk to a surgeon before I decide. I guess I will have to wait another month.

I am feeling the exact same way. I don't have children so that is not a concern for me but I see the whole world as negative. I wouldn't even bring a child into this world, god forbid they ended up with this awful UC. Is this a life worth living? Mine probably is not. Anyway, all that aside, I always ask myself, "Why me?" and it doesn't really help the situation. All we can do is look forward and hope for a better tomorrow. I do believe that if we have to have surgery, we will end up in a better place. You have to keep thinking that way or you will drive yourself into a terrible depression. Everything will work out. I would give Humira a try but of course it is up to you. Have you tried 6mp/Imuran? I am on that now and I still seem to be unstable. Have you exhausted all of the natural options, dietary solutions? Would you try worms before surgery? I would. What about Fecal transplantation? I'd give it a shot before getting my colon yanked. It's funny because I am usually gung-ho about solving the problem at hand and in this case, surgery seems to be the solution but I don't want to go that route yet. I would jump under the knife to lipo the fat around my belly but I can't come to grips with losing a major organ. Also, the risks, what if I end up in the bathroom 10x a day after surgery? It's a very difficult decision and it's very unfortnate that we are stuck in the position where we might have to make it. I hope you get into remission soon and can put off the decision for a very long time or forever. Are you on prednisone? at least the news about Lupus is positive.

not so sickly-I'm allergic to imuran and 5 asa's go figure lol I was first put on asacol, than lialda, than imuran all from march 09 to june 09 was put on pred for a month and was fine within a day. I thought why can't I stay on this forever. As soon as I was off the pred. I was in a flare again. Started remicade the end of July 09 and was on 20mg of pred. until Nov. (june to nov. on pred). Then went off it. I gained 50 pounds(i've only lost 20) and was so crabby. I asked to be taken off of it. Remicade has helped my symptoms I went from 10 times a day with almost daily accidents to now about 5 to 6 times it just isn't healing my colon my colonoscopy in march 10 said I still had severe uc through out my whole colon. She said she would give me another 6 months on it and than scope me. I can't stay on it if it isn't healing me. They upped my dose my last infusion to 7.5kg every 8 weeks. I've had a reaction from remi since my first infusion. Thanks everyone

Yeah my husband always says. Just go off the drugs and deal with the pooping. lol I could hurt him when he says this. Most people don't get it. My mom is awesome but no one understands until they live with it. I will look into a therapist. I'm doing alot better on the remicade that is why I don't want to really stop it. The side effects seem to be getting worse and my doc says I can't stay on it if it doesn't heal my colon. She said colon caner is a risk if it doesn't heal my colon.

I feel for you so much it's a horrible situation to be in and very difficult not to get depressed and lose heart and hope when all the meds just seem to be making things worse,I would not worry to much about the joint pain,I also had periods of severe joint pain when the UC was at its worse and never found out the source I did think it was the cyclosporin for a while.
If I were you I would go ahead and have a consult with the surgeon asap,I can't tell you how much better I felt after I had a consult I came away feeling really positive about everything again I felt confident that if the meds did'nt work I could have my life back,and fast forward a year the whole UC nightmare would be in the past.If you have the consult with the surgeon wether you decide to try Humira or not. keep posting and let us know how things are going.
Best wishes Anna