I think I have mentioned before that Dr. Jay has a chronic condition known as Crohn’s disease. Basically, his colon has open wounds that don’t heal and he is often in terrible pain. This is a strange disease in that it is misunderstood ("just relax" is told to him alot) and there are not always a set course of action to take when one gets ill.
He was in remission for about 7 years. He’s been in the recent flareup since Soleil was born. We track it to lack of sleep. His doctor wants him to start a new medicine, a class called immunosuppressant agents. These drugs basically block the immune system. Lovely. They take time to build up, so he would need to be on it for 3 months before stopping his current drugs. Lovely, 10% of people can not tolerate these drugs. Lovely.
Last night, I found this little gem on immunosuppressant agents:
effects can include allergic-type reactions, bone marrow toxicity, infections,
inflammation of the pancreas, inflammation of the liver (rare), and lymphoma
(very rare). Suppression of the bone marrow can lead to abnormally low levels of
the various types of blood cells that the marrow produces. Therefore, regular
monitoring of blood counts is recommended during treatment.
Now isn’t that a lovely thought. Here, take a medicine that will help your constant pain, but could prevent your white blood cell from being formed so you need a blood test every 2-4 weeks! I think he would also need scans to check his pancreas and liver on a regular basis. I am not thrilled about this drug. His doctor offered him the suggestion of a second opinion on treatment. He isn’t sure what to do. He is waiting at least a month to decide.
Meanwhile, he is getting more and more depressed over how this is affecting his life. I wish I could help more.
I hid the screen from him last night when researching this drug for him. The screen that said "75% of people with Crohn’s undergo surgery at some point". He doesn’t need to think about that. He really doesn’t…
Sorry if this post is a downer. I just need to get some of this out of my system and onto paper (?). I can’t really talk to him about it.