The last two days have been really hard. I have been physically exhausted, dizzy and tired and feeling very out of it. My stomach hasn’t been very good either. It is tender and sore and not healing as fast or as nicely as I, ever the optimist had expected. I also got the test results back from the horrible coloscopy and it confirmed chronic inflammation of the about the lower half of the intestine. The jury is still out on whether it is UC or Crohn’s, but that doesn’t really matter at this point, since the treatment would be the same and it can take years to separate the two. My doctor wants to phase out the cortisone as fast as possible since I am getting so many side effects and I am all for that. I just worry that the inflammation is not going down fast enough.
Today I think I will cancel the trip to the US. It just doesn’t seem possible, and I can tell that my doctor doesn’t want me to go. And I know that he is right, it would be a stupid thing to do right now.
I have been reading up on UC and Crohn’s and it is kind of depressing. A lot of people seem to have to have multiple surgeries removing large pieces of intestine. Many of them had :whispers: colostomy bags. Although there is medication it doesn’t seem to be as effective as I had hoped. All of that is making me feel pretty low.
I am also starting to let my mind touch on the implications for the future.
Emil and I had just started to try for a baby when this happened. With the high doses of cortisone and the antibiotics, a pregnancy is not a good idea right now. I may have to go on birth control pills to make sure we don’t get pregnant now, and since my episodes seems to have been partly hormonally triggered in the past it might reduce them. I am starting a new medication today, one that I will be on continuously and it is also not safe during a pregnancy. Besides, my body needs some time to heal anyway. But it means we are a little bit sad at saying goodbye to our imaginary Summer Baby. He/she is not going to be made.
I may have to rethink my timeline for the dissertation.
I may have to rethink what kind of job I could have in the future. It might be that I will be sick for periods, and I have to find a job where that would be ok. But I realize that my stock on the job market drops with a diagnosis like this. Is there anyone out there in their right mind who would hire someone with a diagnosis that says “chronic”- something if they had a choice?
The same goes for working in countries with private health insurance. If my husband has diabetes and I have a chronic autoimmune inflammatory disease, who would want to provide insurance for us on a private market?
Dude, I admire anyone who managed to read to the end of this depressing post. I will now go pull myself up by the bootstraps and take a break from all the doom and gloom.
:pulls herself up:
3 comments:
Oh Jenny I am so sorry. I can only imagine how overwhelming this all is for you, for both of you.
I would also look at alternitives to western medicene. Acupuncturist and naturopaths can help, it's worth looking into.
I'm sorry you are feeling down Jenny. And I am sorry that a baby is not going to be right now. I see that vf sent you a PM about a friend of her moms who is a triathlete. That definitely shows what can be done, if not a little later then you had hoped.
:hugs:
**hugs**
you have a right to be sad about what your sad about. in fact, i think it may be healthy to allow yourself to dwell a bit on these things. it's great to have a positive attitude, but i think it's probably also healthy to allow yourself to really wrap your head around some of these things.
i hope that you can find a cocktail of meds and treatments that will be as minimally invasive as possible and short in duration.
Post a Comment