In July I had my scope and biopsy on my small intestine to see if there was anything there causing me to go into anaphylaxis. I think this irritated my sphincter of Oddi so for about 2-3 months I dealt with that excruciating pain. The Dr in Indiana wouldn't touch me because of my breathing issues. They got the same Dr who did my scope to agree to do it. Everyone took it very seriously and made sure they did it in the safest way possible for my breathing. Everything came out fine except the Dr was not very kind when it was over- I hope I never have to see that Dr again.
My gut is feeling mostly better. The stomach issue I feel is related the the Mast Cell Activation Syndrome (MCAS) or Idiopathic Anaphylaxis. These are what I have officially been diagnosed with after dozens and dozens of blood and urine tests and two bone marrow biopsies.
I'm not sure I can remember the chronological order that things went but I will try to bring us up to date.
I have continued to go into anaphylaxis mostly caused by smells and stress and fatigue. I took off the months of October and November because my gut was so bad. I had the procedure the second week of November and thought for sure I would be ready to go back to work. I started back to my payroll job Dec 1 and did pretty well, with more limited hours. Until Dec 27 when I ended up in the hospital. I was able to spend my 41st birthday there. Holly walked into the room singing "crappy birthday to you". Boy, was that the truth!
I then returned to the icu the first week of January and spent 6 days in the icu and 6 days in the hospital. During this time they started me on a new medicine and it would make my symptoms worse for the first 3-12 days. So I spent about 8 days dealing with that and I couldn't go home until I'd had 24 hours without anaphylaxis.
During this time there were very few bright spots but here is a picture of a few of them- they'll get their own entry.
These cute little puppies were smuggled into me- with my Dr's permission. I have to admit they brought a lot of happiness with them.
The most recent "episode" was I had a Xolair shot and while waiting in the ER I passed out. They called a Code Blue and I got all of the medical floor nurses, Er dr and nurses. They even went as far as to put pads on me for shocking. I was taken straight to the er and after what seemed like only a very little time I was told I was being admitted to the icu. I was so surprised! But this was another three days in the icu being monitored. This is all very frustrating to me but I know that my Dr's are just fighting hard to keep me alive.
