Wednesday, January 16, 2008

My Personal Experience

I was diagnosed with Ulcerative Colitis in February of 2007. I had been having symptoms since September of 2006 but was extremely embarrassed to tell anyone so just lived with it hoping it would go away. After my diagnosis I was put on prednisone and Asacol, the prednisone made me VERY moody. I felt like every time my husband and I went to see my doctor we were going to marriage counseling, they were so good about reminding us that my bad mood was due to the medicine and life would get better. Finally I got off the prednisone and was given the great opportunity to start methsalamine enemas, which really weren't as bad as what I expected them to be. The enemas worked great at first, and then they slowly started losing effect. That is basically the story of my disease, all the medications worked great in the beginning but then lost effect. So I went on to steroid enemas, Azathioprene (it gave me extreme stomach pain so I had to quit), back on prednisone and then had a nice 5 day hospital visit. After I got out of the hospital I decided to start Remicade. Like everything else it worked great in the beginning, but by the 3rd infusion it was no longer having an effect on my body. By this point I was very frustrated and tired of being sick and tired. My husband and I had been waiting this whole time to expand our family, it had now been almost a year and I wasn't one step closer to being in remission than I had been in February. So I decided to try some different herbal supplements and diets, although some of the herbal supplements worked a little bit, none of them made that big of a difference, no matter how many testimonials I read. As far as diet goes, I couldn't seem to find anything that helped or hurt my UC. The week before Christmas I found myself meeting with a doctor at the Mayo Clinic and being told that if I wanted to ever hope for more kids, the colon needed to come out. That brings me to January of 2008 and facing surgery next week. I felt good about the decision when we made it, but afterwords I fell into depression and worry, I just wanted to be healthy! I have finally worked through those feelings and am now ready to get on with it. I guess that would be my advise for those of you who are thinking about having an ileostomy, schedule the surgery a couple of weeks out so that you have plenty of time to be emotionally prepared for it. I was frustrated when I couldn't get into the surgeon before the middle of January, but I now realize that it was a blessing to have so much time to think and know that this is what I want to do no matter what. I will be having a total colectomy with ileostomy, and although I don't think anyone is totally ready to live with the challenges that an ileostomy (or any health concern for that matter) brings, I feel ready, and that's good enough for me.

4 comments:

Brooke said...

Wow, Sarah. This is intense! I can't believe I didn't know about any of this! When is your surgery? What is it going to mean to have your colon removed? What happens without one? I'll definitely be praying for you. Keep me posted! I love you!

Peless Family said...

Sarah,

That sounds, well, horrific, but we are glad to hear that you are in good spirits and not in "marriage counseling" anymore. Let us know the date of the surgery so we can keep you specifically in our prayers. Is there anything that we can do albeit we are several thousand miles away?
P.S. We are looking at coming down to Chicago this summer to tour some doctorate programs in Wisconsin, Illinois, and Michigan. How far are you from Chicago?
Luke

Andrea Morris said...

Wow Sarah...I just have to say how much I admire you and your positive attitude! I know it must have taken a lot of thought and prayer in coming to this decision for you and your family. (Back in my previous life in Utah) as a nurse, I worked with countless people who had undergone this very surgery. I have no doubt that everything with go well with your surgery, and you will have a great outcome. Hang in there, and know that you will have many prayers on your behalf! If you ever want someone to talk to who at least understands the 'mechanics' behind it all, I would be happy to.

Jennifer said...

Hey Sarah~~ First off I just want to tell you how amazing you are for staying so positive. It is crazy that you are always so happy and I have never heard you complain about these trials in your life. You are truly an inspiration to me to quit complaining and focus on more positive things in my life. Secondly... this is not a request... I expect to watch Anna at least a few times while you are in the hospital or in recovery. Honestly, I would LOVE to have her come play and she needs to teach Kash to talk anyway. Please let me know what I can do to help. I will definitely be bugging you to watch her. You are a strong woman and I really look up to you for being so amazing through this process. Our family will keep you and yours in our prayers. Jennifer Janke