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The following blog posts are based solely on my personal experiences. I am not a Doctor, Nutrition specialist, Comedian, or Professional Baseball Player. If you have a health, nutrition, humor, or baseball issue please seek a PROFESSIONAL.

Favorite Bathrooms

  • Home Sweet Home
  • When I'm @ someones house: the one farthest away from the crowd
  • @ the Mall: Macy's (as public bathrooms go this one is very nice)
  • If I can't make it to Macy's...JC Penney's will have to do (they recently remodeled so it is better than it was. I don't know why they didn't ask for my input???)
  • Monterey Bay Fish Grotto in Monroeville has a great bathroom
  • Ponte Vedra Inn and Club, My fav place to vacation, their rooms have the most wonderful bathrooms

Helpful links

  • FREE Crohns Disease Support Network
  • Find a Toilet
  • Medical Alert Restroom Access Pass

Monday, January 18, 2010

Which Brings Me to Now....

I lost a lot of blood during that c-section and I had a much harder time recovering. I began having flare symptoms and by the time I went to my 2 week check up I had lost all the weight I had gained during my pregnancy. Within a few months things settled down and I did very well just dealing with the fistula and the many trips to the bathroom. I continued to see my GI doctor regularly and he continued to tell me the diarrhea was due to the short gut. I continued to take antibiotics for the fistula and he was sure there was nothing more he could do for it. (At about this time that little voice in my head was saying “you need a new GI doctor”, but that other little voice was saying “you know a new doctor is going to want to put you through all those awful pre prep, contrast gulping, scope torturing tests”.) Then somewhere around 2000 the antibiotics stopped working and the fistula got worse. Another opening formed and it was very painful all the time. Still he said there was nothing he could do??? When it started to look like a third opening was starting to form he said I should just go see a surgeon. I went to the Dr. who did my resection and he recommended a specialist. I went to the specialist and he was wonderful. Not only did he feel he could help me he also felt that my current GI doctor wasn’t being helpful enough. He was sure that my crohns was still active (not short gut) and he recommend a new GI doctor. Oh he also scheduled surgery for me. He wasn’t able to completely get rid of the fistula because he could not find where in the intestine it was originating from so he placed C-tons in the fistula to keep it open and draining. This made life much more comfortable. I went to see the new GI doctor and he was wonderful also and yes he put me through all the horrible tests. He put me on Pentassa for a couple years and that worked well but he still wanted to try to get me into complete remission. So he put me on Remicade too for a year and it was working very well for me. Even the fistula was healing. Of course he also did lots of blood work and noticed that my liver levels were just slightly elevated. I told him they have always been slightly elevated. My former doctor said it was probably due to the crohns disease. My new doc said that was possible but we should find out for sure. I had already told him about the liver infection and blood transfusions years ago. More blood work confirmed his suspicions. I had Hep C from the blood transfusions…..for a long time. More blood work and a liver biopsy showed I had stage 3 inflammation and scaring (there are 4 stages, 4 being the worst). The length of treatment for Hep C is determined by another blood test, you may need to be treated for 6 months or a year. Of course I had to be treated for a year. Unfortunately I could not be on the Remicade at the same time so I had to go off of it. Pills every day and an injection once a week (more needles….I hate needles). It is a difficult treatment. My doctor told me that I would have a “poor quality of life” for a year but if it was successful the Hep C would be gone and the liver would regenerate itself. I went for it and he wasn’t kidding when he said a poor quality of life. It made me feel like I had the flu for a year. Very weak, your body aches all over (especially the joints) hair falling out, insomnia, and depression among other things but I made it through the year and the Hep C is gone. My liver enzymes are fine and according to the hepatologist my liver is healthy again. So now back to treating the crohns. Now the big question is….try to go back on the remicade or try something else??? Apparently once you go off of remicade your body can produce antibodies to it which 1. it will no longer help you and 2. puts you at a higher risk for a bad reaction to it. We decided to try. As a precaution I was pre-medicated with prednisone and had to take Benadryl an hour before the infusion. We tried about 4 infusions but it just wasn’t helping enough and it was giving me severe joint pain (very unusual because remicade usually helps the joints) so he didn’t want to risk increasing the dosage. No more remicade for me. Next up Cimzia which I started about 6 months ago. Did I mention that I hate needles??? Two horrible burning stinging injections every four weeks. I hate them. It is like injecting thick syrup. At first I tried them in the abdomen but I had terrible bruising so now I inject into the thigh. (Well actually my wonderful sister in law does it for me.) No bruising but still horrible burning stinging freaking syrup and I am not sure if it’s even working. I do seem to have less pain but I still spend most of my time in the bathroom. I see my GI doctor tomorrow so I will see what he thinks.

Btw….believe it or not that was the long story short version hahaha

Love, laugh, and always know where the nearest bathroom is…..

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