My own endo, crohns, AAAAK! experience
In fall of '09 I started experiencing severe abdominal pain (thought it was the appendix...not so much). Turns out I had a bad case of "pancreatitis". I spent 3 days in the hospital, then the Dr. referred me to an OB/GYN spec because he thought there had to be something more there causing this pain. I was referred to an awesome Dr who did an ultrasound and decided that I was "highly suspicious" for endometriocis. He said that a Exploratory lap could tell a lot more. He asked permission to "Fix" whatever he found - the worst case scenario being a total hysterectomy (at age 31). However, at the time I was engaged to a man who already had children and I have a child, so I wasn't planning on having any more of my own. A painstaking decision...
So they did the exploratory lap and found out that the endometriocis had spread significantly, especially to the bowls. They made the decision to take EVERYTHING.
I definitely wasn't emotionally prepared as I thought I was. I woke up from surgery feeling about 1/2 a woman. To make matters worse, I had lost a ton of blood during surgery and had to have a blood transfusion.
After that, I went home for two days but ended up in the hospital again with a pulmonary embolism, followed by sepsis (I was SOOOO sick - kidneys and bowel issues galore and couldn't eat). It was all very frustrating. After the sepsis started getting better, I noticed I was bleeding profusely, which scared me. They did a cat scan and noticed a "pool" of something in my abdomen. They kept an eye on it and went back into surgery two days later. After 16 total days in the hospital I was able to go home, however the problems were just really starting.
I have always had digestive issues (at least since the gall bladder was removed in 2003)....they described it as "dumping syndrome", however, prior to the Crohns diagnosis I was never able to eat after 9 a.m. or my whole day would consist of running to the bathroom. For years this bewildered us.
After all of this in the past year, the Crohn's thing make sense. Since March of this year my symptoms have gotten worse...more bathroom trips, naseau, prednisone (yuck!), weird weakness in my right side and a mega B12 deficiency.
The worst part of all of this was when I was sitting in a Dr. appt last week and the guy happened to mention how many misdiagnosis there are for endo/crohns issues. Which made me think....OM - does this mean that I didn't have to go through the hysterectomy because my Crohns was simply flaring????? Scary, sad, heart breaking thoughts....but who's to know.
Anyway, this was me venting and sharing. I have no idea if it will be useful to someone else, but know you are not alone in the confusion....
Diagnosed: June, 2010: Crohns
Current Meds: 50 mg Prednisone, Pentasa, warfarin regimine for blood clots, levothyroxine for thyroid, ambien for sleepless nights,
