Tell me it will be okay, please...

I'm home after three days in the hospital and am feeling so much better, but yet I sitting here and can't stop crying. Reality has finally set in as I'm faced with starting my fourth (fifth?) round of prednisone in the last 18 months and soon to start 6-MP in two weeks.

My GI had come to the conclusion last time that if the Colazal couldn't keep me in remission than it's time to move onto 6-MP, because I was becoming (I am) steroid dependent. So when I was sitting in my doctors office three days ago at my weakest about to be admitted to the hospital and heard all the reasons why I should/need to try something else (6-MP), and how even all the latest research shows it's okay to get pregnant and stay on 6-MP throughout pregnancy I sat there nodding my head and gave in. And I've done my research on here, other sites, talked to other GI doctors (multiple), talked to OB's (multiple), and a perinatologist, so I'm well aware of all the information out there, but yet it doesn't make me feel any better. The reality of having to take a drug where you get your blood tested every few months for as long as you are on it (indefinitely at this point) really hits home the fact that I have CHRONIC DISEASE. You would think I would have understood that by now after 15 years, but I feel like I'm too young and have too much at stake for me messing with my health.

Please, I don't mean this to be a pity post, because I know there so many others in this world who have far worse situations than I do. But that doesn't change the fact that I still want to make my life the best one for me and my family, and right now I don't feel like I'm being the best me.

I just don't know what to do any more....Sorry for the typos, my eyes are blurry.

Hi...

I started Azathioprine/Imuran 2 months ago and it was a tough decision for me too.  I've always been healthy and never had to take any medication before being diagnosed with UC, so starting long-term medication sounded extremely drastic.  But, after seriously considering all the pros and cons I felt that getting on Azathioprine was the right step for me.  It's true that getting regular blood tests done can be a bit of a hassle, but I'd rather deal with that and just get healthy and stay healthy. 

Don't get disheartened; azathioprine and 6MP have worked well for many people.  Stay strong and I hope this works well for you.

I know just how you feel. It will get better and you will be okay. Lots of us have been through this and come out just fine on the other end. You're just as smart, just as tough and just as resilient as any of us, and so you will also. Give yourself permission to grieve. Every new treatment we have to move to slaps us in the face with reality again, and we have to grieve and accept all over. Never apologize for venting here, that's what we're here for.

It will be okay.  I am steroid-dependent too.  Perhaps you will do well on 6-mp.  If you are looking for an alternative read my signature.

 

 

Edited for excessive signature length. I'm sorry, Blue Class Ring, but only you can shorten your signature. The moderators can only delete it when it is more than ten lines.

Post Edited By Moderator (Judilyn) : 2/28/2008 7:57:09 PM (GMT-7)

My heart goes out to you. I sobbed when I had to put my son on one of these drugs, then by the time I had to put my daughter on, I was a tiny bit more okay with it. With my son, we really needed to do something as he had been sick for over a year and was fading away. With my daughter, I just knew I didn't want her on steriods very much. They are both doing very well and I hope you will, too.

It is okay to throw a pity party from time to time - don't feel bad about it if you need to. {{{{{Hugs to you}}}}}

Keylime and Ithurtsmom - I can't imagine what it must feel like having to see you children be in pain and to put them on so much medication. I'm happy to hear that they all doing well. I pray that there continues to be research and development for this disease so that their adult lives can be more enjoyable than when they were first diagnosed.

I have been feeling a bit better the past few days (both physically and emotionally). I've still broken down a couple of times at the thought of what lies ahead for me, but then I stop and remember that 6mp is just another option for me and I should give it a try to see if it makes my life better. I will talk to my GI next week and I go in to see him again on the 11th. I imagine that's when I will start taking the 6mp.

Thanks again to everyone for the support.

Well i started Lialda 1 week ago and it seems that is not going to do the trick. I am still on 30mgs of pred. I think i am allergic to mesamaline, everytime i try these drugs my symptoms get worse. I am going to talk to my GI about the Remicade tomorrow. I know he will give me a song and dance about it, and if he does i will just try someone else..I don't get these drs. they want to guniea pig you until you have lost your mind. Why not try something that works very well with others. I know they try to exhaust every means with the most potent drug last, but come on, i have to work, they never seem to understand that. I know there is no miracle drug but it's as close to it as you can get..wish me luck...Oh and by the way my kids were sick 3 weeks ago with a stomach virus, which i got, now yesterday my oldest who is 4 got mild pnuemonia, which i picked up some sort of bronchitis from it, which i get everybodies sickness due to the prednisone.......just venting....that's pretty much it...and how is everybody else out there doing?

Thanks Mitz - I appreciate hearing your perspective. You are right that this is a process and how I am today is not necessarily how I'm going to be in a year, five years, or ten years from now. It's good to hear that Imuran and 6-MP do help give people that "normal" life again. Hopefully, I'll fall into that camp too.

SIR.P - I too have had bad reactions with the 5-ASA drugs (Colazal excluded so far). The more Asacol I took, the runnier, the more liquid, and the more urgent I had to go to the bathroom. Lialda did the same thing. I haven't had the problem with Colazal though. I hope you don't catch your kids colds. Stay well.

Julee -My flares have been pretty bad. Well they started getting bad after I had my DD at 6 weeks postpartum. At the time my DD was having some health issues and the stress of that coupled with the drop in pregnancy hormones likely caused me to flare. Ever since then, my UC has never been the same. Partly because, my UC used to be just on my left side of the colon and then it affected my entire colon because my previous GI waited too long before really doing anything (she just kept increasing my Asacol even though I kept telling her I felt worse the more I took). This was the first time I experienced the horrible cramping, liquid D, sweats, up all night, racing to the bathroom for three months. Up until that point I had NO idea that UC could be that bad, because I had always managed mine with minimal medication, diet, and exercise. I was LUCKY up until then. I finally got a new GI and ever since then, he and I have been battling to get it under control. I've tried all the enemas, suppositories, Asacol (see above, bad reaction when taken in high doses for me), but mostly have been getting by on Prednisone. I had a few months of GREAT remission post prednisone and just on 9 Colazal a day, but then I was experiencing joint pain and my GI wanted to make sure it wasn't the Colazal. He switched me to Lialda and all my symptoms came back and I had to start the prednisone cycle all over again, but this last time the Colazal wasn't/isn't able to hold me in remission, which is why my GI thinks I need to step it up to 6-MP. I'm all for quality of life and wouldn't be so scared if I didn't want to get pregnant again. I just don't know how I will be able to live with myself if something happened to a baby of mine because of a drug I took throughout pregnancy. Oh, I used to have acupuncture and had food sensitivity testing done. Both were great and I felt made a difference, but again this was before my UC was really bad. I'm actually looking into acupuncture and massage therapy again at my hospital. I haven't fully tried the SCD, but always thought if I just ate healthy (avoid refined sugar and red meat mostly) and in moderation that I would be okay, but now I'm wondering if I should give the SCD a try?

I literally could have almost written your exact post a few years back..except that I knew I didnt want more kids again.  I've been facing this disease head on since the age of 1.

My first life threatening flare came at the age of 10.  I was told I would die before I was 21 if I didnt get my colon removed. My mother fought to keep my colon where it was..and I got a GREAT pediatric gastro who gave me pred for a few years, and a a few other drugs that were considered to be experimental from Cananda (I dont know what???).  Well..Im still here. 

I have had flares my entire life pretty much...making me bone thin and moon faced at the same time. I sacrificed much of my college life to Colitis.  Hospital stays were routine for me, and eventually all drugs that usually worked, werent working anymore.  I was given Imuran, and told this was my last chance likely.  Now there are a few other options..but I remember sitting in my kitchen and crying like a baby for a few hours with my husband about how I was never going to be a normal mother, wife, and enjoy my life.  My little boys were 3 and 4 at that time.    Imuran settled in for me in a few months, and without visiting this board, its very easy to forget that I actually have a disease.  The blood tests are a small blip in a wonderful life at this point.  I had NO side effects and enjoy a life pretty much as normal as anyone without a chronic disease.

My scopes went from awful to the best my gastro of almost20 years has ever seen.  Loads of scar tissue, but a very pretty color (not red!!)    I wish I had started on this drug years ago...  I dont ever wanna see prednisone in my house again!!! 

Anyway....I have high hopes for you.  I am 36 now, and will take Imuran as long as my blood tests are good.  3 1/2 years so far with no flares or drug side effects. 

Good luck!!!

Michele

I've been on 6mp now for 1 1/2 years. As for the SCD, yes I tried it but I didn't last because I've NO willpower! lol So when I flare now, I avoid things that I know are triggers for my symptoms.

I thought I would follow up and let you all know I saw my GI again today, exactly two weeks after being admitted to the hospital. I'm feeling MUCH better than when I first saw him (new GI and on the first time meeting him two weeks ago, I break down in tears and sent off to the hospital - great first impression). I was pretty down the week getting out of the hospital, but because I'm feeling better I can think more clearly and not be so emotional about every decision in my life. As I suspected, we decided that 6mp was the next course of action for me and I just got back from the pharmacy and will take my first dose tomorrow. I'm trying to stay optimistic and think about the better quality of life I might have. I would still like to get pregnant in the near future and we talked about possibly trying in the fall depending on how I respond to the 6mp. Until then, I am thankful that I'm in a better place than I was two weeks ago.

Thank you all for your support and kind words.

Blueclass - Okay, thanks. I think I'll check out the website tonight. It can't hurt to try. If nothing else, I will be eating healthy right.

LWW, I am also facing the choice of stepping up the ladder from Azulfidine pills to Humira shots. I am waiting for the shots to arrive from mail order rx and I feel the familiar questions popping up in my head, 'do I really want to go on the stronger med'. I can remember breaking down in tears 4 yrs ago when I was told I had to take 6 Asacol 2 xs day. Each step to a different med is scary, but going to using self injectibles makes it scarier. I am hoping the Humira will help me. Hang in there!