Thursday, May 23, 2013

Well-Placed Hope: An Ulcerative Colitis Update

I have had a few people ask me how my ulcerative colitis is doing, so I thought I would post an update. I started a new medication called Uceris back in April after coming home in the middle of a work day because I felt so bad. I actually missed 4 days of work in April, the most I have missed in any one month this year. That first day I went home sick, I called my GI doctor and told him that I still was not doing much better even after increasing my Humira injections to once a week instead of once every other week, so he prescribed the Uceris. Uceris is a steroid that is released directly into the colon and therefore has fewer side effects than prednisone, which I hated taking. I have been very pleased with the lack of side effects while I've been on Uceris, but I am also not sure it's helping me too much either. I have had a few better days this month, but I've also still had some really difficult days. Along with prescribing the Uceris, my doctor also referred me to the IBD Clinic at Vanderbilt, and the only downside to this is the fact that my appointment is not until June 26!

What I am struggling with right now is not knowing exactly what is normal and not normal with this disease. Maybe how I am now is as good as it gets. The thing is, while my disease is definitely more tolerable than it was when I was first diagnosed, it's still no fun whatsoever. I still have diarrhea on a daily basis (I know, ew, but it is what it is), and sometimes I still can't even sleep through the night because I have to get up and go to the bathroom. I get uncomfortable stomach cramps, and sometimes I have terrible abdominal pain off and on all day. I am tired all the time, and I can't run like I used to. Even just a 2 mile run I did recently had me heading to the bathroom not long afterwards, and that is depressing to me. Running is one of the ways that I relieve stress, but now I am anxious about how my body will respond if I go running, so I haven't run very much.

I have thought in the past, based on what I've read and heard, that if I found the right medication, I would go into remission and not have any symptoms of my UC.  Obviously I'm not there yet. And after having lived with a diagnosis for 6 months while still not being in remission, I am definitely ready to get there. But what if remission in fact isn't a complete removal of symptoms, only a lessening of them?

As I shared with a friend recently, I am weary. Weary of waiting on medicines to work, weary of not feeling like myself, weary of having to always be conscious of where a bathroom is. What I dream of is a week, or even a day, when I can forget that I even have ulcerative colitis. Is that possible? I really, really hope so.

And that's the thing: because of the Lord, I still have hope. I have hope that even though I may never see complete relief in this life, one day I will be with Jesus, and there will be no more disease, no more tears, no more pain. I will bow before my Savior and be with Him forever. Nothing gives me hope like knowing that I will get to leave all of this behind and just soak in His presence.  I am grateful to God for my ulcerative colitis if for no other reason than I long for heaven like I never did before. I also have a deeper appreciation for the empathy that Christ feels for us, and I have seen the body of Christ minister to me in profound ways.

My prayer is that no matter what comes, I would endure it well. Ultimately my hope is in Christ, not in medications or in doctors, and because of the Lord's great love, I am not consumed. For that, I will always be grateful.

2 comments:

  1. praying for you erin--i hope that they have good news for you at your appointment and that they find a medication taht can make you feel like yourself again!

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  2. Erin, you are truly an amazing woman. I am so sorry you have been going through all of this. It sounds like it's been a very tough road. You are handling it so well, though. I am praying that you will experience a miracle in all of this - and possibly that God will bring someone into your life with this disease who can offer you wisdom in this area. I hope you have a relaxing (hopefully three-day) weekend and can rejuvenate.

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