Here I Go Again

By rayr

1 min read

When dealing with Crohn's Disease, a title like "Here I go Again" can have more than one meaning. In this case, it means that (1) I know another flare is right around the corner; indeed, I may already be in the early stages of one, (2) I know this because, well, everyone around me is hearing me say, "Gotta run" as I do the bathroom dash time and again, and (3) my current treatment regimen is faltering again.

I've had Crohn's since 1992. In that time, my doctors and I have tried everything from early immunosuppressants (hello, sulfasalazine!) through every TNF blocker on the market. Yes, I've subjected my body to Remicade (can you say "anaphylactic shock"?), Cimzia, Humira and currently, Stelara. The Stelara was a hail mary play back in February. But as with everything else I've tried, it's no longer being very effective and my body is letting me know in uncertain terms.

The only drug that's proven effective of at least making me relatively symptom free is Prednisone. A few years ago, because it seemed like the only thing that could let me do anything other than lie in bed (except for the bathroom dash, always the bathroom dash), I tried a 20mg maintenance dose of Prednisone for about a year. But you know how you hear there are long term side effects to prolonged use of Prednisone? I'm the living proof of it. I'm half-blind, my lungs, arteries and heart are damaged and I have a horrible case of arthritis.

So what's next? I haven't the foggiest. I have had two very bad episodes: in 1996, I spent 4 months hospitalized after my colon ruptured. 5 years ago I spent 2 months in the hospital as my body pretty much shut down. I passed out in Penn Station's restroom; I didn't know it then, but it was the last day I would ever be gainfully employed. I can only hope this isn't the start of something similar.

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sickforever Member
RayR, your story sounds all to familiar to me. I have had Crohns since I was a teenager but not diagnosed until I was 21, I am now 51 and it's the same old thing with prednisone being my go to med when I absolutely can't handle the pain . you thankfully answered my question I have been trying to get answered, my eyesight is nearly gone and it scares the heck out of me! I can't keep up with my prescriptions for my eye glasses. Now I am finding prednisone isn't working all that well either or any other of the steroids. I was on 80 mg of prednisone for over a year and it ravished my body, from loss of eyesight, horrible joint pain, and loss of muscle control. I am terrified of the biologics because like you I was employed in the medical field and was exposed to TB. The CDC recommended that I was treated with both the TB medications because of my Crohns because of my immune system being non existent, Those 9 month's of the medication nearly killed me.Each and every biologic out there says that it can make it become active. I really don't think I could deal with that and my crohns. I feel I am at a dead end. I no longer can work, the daily fatigue is ridiculous, the joint pain is horrific, I am nearly blind and the nausea keeps me home in bed most of the time. I really believe that the steroids I have taken all these year's worked short term but surly ruined my body. I feel like I am at a DEAD END in my life and I just need to except that !
sickforever Member
RayR, I forgot to mention the toll this has taken on my mental state ! I truly believe if it wasn't for my anxiety and depression medications I wouldn't be here to write this post. They have been a lifesaver for me but yet many GI doctor's don't believe that they go hand in hand with a diease like crohns, well in my opinion they are wrong !!!!
1. thedancingcrohnie Moderator & Contributor
 <inline-mention user-id="2248736" username="sickforever"/> , Your story is heartbreaking. I'm so sorry you feel like you are at a dead end. Goodness, I would feel that way too. And all that the Prednisone did long term is so sad. I wanted to check in a see how you have been feeling these days. Any improvements? I hope you are doing better and finding relief. With warmth, Elizabeth (team member)
tanyag Member
Ray r and sick forever sorry to hear you guys have seen no success or options with the current medication on the market. I hope with the new drug coming in the pipeline you will find remission. One drug that you may be interested in looking into quebeco by qu biologics it works differently. I believe they will be doing the last clinical trial in 2018. Best wishes
thedancingcrohnie Moderator & Contributor
@rayrR. I'm so sorry you have gone through all that you have gone through. But you are one strong warrior for pushing through. It's heartbreaking to hear you received such horrible side effects from the long term Prednisone. Ugh, must be so frustrating that the one thing that brings you relief you cannot use long term. Scary that you passed out in Penn Station. I nearly passed out years ago while exiting the subway, right there on the platform. I didn't actually lose consciousness but I got very faint and everything went black for a second causing me to fall down. Luckily a physical therapist saw it all happen and she came to my rescue immediately. It's been a while since you made this post. Wanted to see how you have been feeling these days. I hope you are doing better and perhaps even have discovered a treatment that gives you relief. Sending warm hugs your way, Elizabeth (team member)