Thursday, May 12, 2016

Update: May 12, 2016

I've been wanting to post an update for a few days now, but I wanted to wait until I was having a good day. I know, that's totally cheating but I feel like all of my posts have been negative and I was ready for a positive one!

The past week has been such a roller coaster. At the beginning of the week I was feeling well, but then I got really stressed and had a few really bad days. Apparently it was not a good idea to throw a move into the mix of everything else we have going on. Our ward has been amazing though and they helped (more like did it for me) pack the entire apartment and get it ready to move on Saturday. We are just moving around the corner into a different apartment complex,so its not a huge deal, but we still have to pack everything, and just the idea of doing it makes me exhausted. I still spend a great deal of my day in my bed or sitting in the glider rocking Charlotte- and even those activities wear me out! 

As for updates, on Tuesday we went to the Colo-Rectal surgeons to see about the fistula issue. The whole time we were sitting there all I could think about was why people choose that as a job. I am so glad they do, and someone has to do it, but really- that sounds like the most awkward job ever. Anyway, they confirmed the fistula but feel like we need to wait before we do anything about it. Fistulas can either be repaired by taking a graft from another part of the colon and essentially "patch the hole," or on some occassions they can heal on their own through treatments with Remicade. Because I am already on the Remicade and my colon tissue is too sick to use as a graft, we will be going with the "hope it heals on its own" method. We made an appointment to follow up with them in two months and see if there have been any changes.

Today we met with the GI specialists and they feel that there may be a chance that I have Crohn's Disease and not Ulcerative Colitis. This was not good news. Remember at the beginning of this when  I said we were lucky it wasn't Crohn's disease? There's a reason for that. If I do have Crohn's Disease then I will get the same surgery I would get with the Ulcerative Colitis, the only difference is that with Crohn's disease the surgery is not a cure and with UC it is. I would still get Crohn's flare ups throughout the rest of my life, and after the way the last seven weeks have gone, that thought terrifies me. People do manage Crohn's Disease though and it is possible to get it in remission, but between the two of them it seems the UC is the better diagnosis.

So, here's our plan for now: 

1. We are going to try and taper off of the steroids faster than we have been because they have been giving me some terrible side effects (swelling in my face, my neck, my knees, my ankles, tremors, anxiety attacks, etc). Also hoping that we don't taper them off too quickly and I get sicker and end up in the hospital again. 

2. Increase the dosage of the Imuran. When they tested my blood they found out that the amount of Imuran I have been taking isn't enough to help me, so once the steroids are tapered we will up the dosage and hope that it will speed the healing process along. (Remember the Imuran is an immunosupressant)

3. Try to wean off of the pain medications. This one is mostly dependant upon the pain. Clearly if I am still in pain then I will keep taking them. But hopefully my colon will heal and I won't need them!

4. Continue with Remicade treatments. I get my next treatment next week, which should put me at the peak amount of medication in my system. This should really help us know whether or not my body is responding to the infusions and whether or not I will need surgery. So keep up those prayers that the infusions will work!

5. The doctors are going to do a blood test on Monday to check for Crohn's The blood test is only 75% accurate, but it may help us to diagnose the Crohn's  vs the UC. 

So its pretty much business as usual around here. A lot of the waiting and hoping game. We have been so blessed by all of the people who have been helping us out. We have had dinners, help with James and Charlotte, groceries, people helping us to pack and move, and sweet get well cards and messages I have received. There have been a lot of people who have told me they have similar struggles and it is so comforting to know that I am not alone. Sometimes this sickness makes me feel alienated and embarassed, and hearing from other people is just so comforting. 

I think we should end with good news! Even though this week definetely had its rough patches, I also had some really good moments. I walked around not one, but two grocery stores! (One was even Costco so I feel like that should count double!) I also had a moment today where I felt normal for like an hour. It was amazing! I've realized its important for me to just focus on these moments no matter how few and far between they may seem.

Thank you all again for your love and support! Unfortunately this road appears to be a long one, but I feel so blessed to be surrounded by so many wonderful people who are helping me walk down it. We love you all! Ill update again after my next Remicade treatment, please pray that it is successful! 

Love you! Chelsea

"If the bitter cup does not pass, drink it and be strong, trusting in happier days ahead." -Elder Jeffrey R. Holland

1 comment:

  1. Hello Darling Startlings! Good for you for focusing on the little successes. I was clinically depressed many years ago, and had to celebrate things like going to the bathroom, taking a shower, eating anything at all, or even sitting on the couch all day. This was at the same time that I was anorexic so it was all difficult. Please know that even though our trials are different, that there is hope ahead and that sometimes the Atonement heals our hearts before our bodies. Love,you and pray for you!