The beginning of it all
I’ve been reading the various posted here for a while now and have felt that I should share my story. I hope you have a snack as this may get a bit “long winded.” (If that happens, I apologize ahead of time. I’ve been wanting to share this for a while but didn’t have the courage.)
My name is Mike, I am 37 years old and was diagnosed with Crohn’s Disease on December 5th of 2017. Until this I had never even heard of ulcerative colitis, Crohn’s disease or even IBS. This last year and a half I have learned many things about myself and unfortunately how others treat those with a hidden illness.
Computers have been a passion of mine for years, like since I was a kid. A few years ago, I was offered a service desk position as a contractor at the main R&D facility for a large automotive manufacturer. To me, this was a dream job, contractor or not. Even though this is an hour away from my home, I jumped at the opportunity to work at one of the top automotive manufacturers. For a time, everything was great and work was enjoyable. Then after a little over a year, the symptoms hit much harder than before.
I had always had some minor issues with gaining weight, frequent abdominal pain and semi-frequent diarrhea but this was so much worse. Everything felt a hundred times worse and it became incapacitating. There were days that all I could do was curl up in a fetal position in bed while my wife called my boss to let him know I couldn’t make it in that day, or the next.
On the third day my wife called a close friend of ours to take me to the urgent care. The staff there did their normal checks, determined it was a mild infection and sent me home with a prescription for an antibiotic. I took the antibiotic as directed and things seemed to improve for a bit though after less than two weeks I was back, only worse. This time I was sent home on a steroid, budesonide, and advised to visit the ER if my symptoms didn’t improve within a week.
If you guessed that I was in the hospital the next week, you would be correct. It was less than a week in fact. About 4 days after the visit to the urgent care. This is when I had reached the point of where I felt like I was dying. The pain was so bad I could barely get out of bed, couldn’t walk to the bathroom without assistance and was barely able to eat. This is when my wife forced me to go to the hospital, which was tricky as she didn’t have a driver’s license. Friends and family to the rescue!
I arrived at the ER and they start the triage process. During this process they asked me how much I weighed, I answered and as they had doubts they weighed me anyways. I was admitted shortly after. It turned out that I had lost over 30lbs in just over a week. I don’t really remember much from this hospital stay other than it felt like weeks before I was able to return home, even though it was only about 8 days. When they sent me home they told me that they believed it was just a minor infection and I should take it easy a few more days. I followed the instructions given to me by the doctors and felt fine within a few days. I returned to work.
The Hospital…My Second Home…
My direct supervisor was very understanding through all of this. I later found out that he has IBS and kind of understood what I was going through at the time. For a couple months everything seemed to be ok. Other than arriving late a couple days due to brief diarrhea, I didn’t miss any more work. Though this was not destined to last. Shortly after celebrating my wife’s birthday, I am right back in the ER, in worse pain than before. I don’t remember who drove me to the hospital or how I made it from the vehicle and into the building. In fact, most of this “visit” went by in a blur. What I do remember is that there were a lot of tests, I was put on antibiotics as well as steroids and told I should see a gastroenterologist. They were even kind enough to go ahead and submit all of the necessary paperwork for the referral. Great, right? Sort of. The appointment with the gastroenterologist wasn’t for another 6 months.
Again, my supervisor has been flexible and supportive through all of this. His superiors, the project and account managers, on the other hand are not. While they aren’t saying anything to me directly, I overheard some conversations and my supervisor is dropping hints. I do my best to show up to work every day, but the travel is difficult. This seems to quell the whispers from both the account and project managers. Then I end up in the hospital for a third time, though this time I decided to go to a different one.
I am so glad that I did!
This third hospital stay was vastly different than the previous ones. I was asked about the stays at the other hospital, what tests were run, etc. They ran a lot of the same tests, drew blood, took some x-rays even a CT scan. After they got all of the results back the doctor advised that it would be a good idea to do a colonoscopy. We discussed what the procedure would entail as well as what our next steps would be based on the results. I was nervous. I had only been put under anesthetic one other time, and that was for my wisdom teeth. As you may be thinking, my worry was unnecessary. After I woke up from the procedure the primary doctor and the gastroenterologist on call both visited me. While they were waiting on the biopsy results, they felt that all signs pointed to either UC or Crohn’s disease. The x-rays and CT scan showed severe inflammation around the area where the small and large intestines meet. There were some other abnormalities as well. This resulted in my appointment with the gastroenterologist office being moved up. It was now only a week away.
I returned to work after being discharged from the hospital yet again, but at least now we have an idea of what is going on. Oh, and they swapped out the steroids for prednisone. I later found out that it was a fairly high dosage that would take a long time to taper off from.
Finally, a diagnosis.
We finally get to the day of my appointment with the GI doctor. Little did I know at the time that my life was about to go through a huge change. I arrived at the doctor’s office about 45 minutes early to fill out paperwork. Get through all that and was taken back to see the doctor. She comes into the exam room, introduced herself and then says “I hear you have been through a lot lately and would like some answers.” She then continued with “I’ll get straight to the point, you appear to have what is known as Crohn’s disease. We will need to run a few more tests that the hospitals didn’t, but I’m almost certain this is what is causing your symptoms.” She gave me a quick rundown of what both Crohn’s disease and UC were. How they differ, how they were similar and why she believed I had Crohn’s and not UC. I get a follow-up appointment for a couple months later and go through all the tests she ordered. It hasn’t been 3 days since the tests and I’m already receiving a follow-up call. She wanted to see me sooner and I was squeezed into her busy schedule the next day.
It will be a while before I forget this day, December 5th 2017, since it was the day everything became clear. This was the day I was officially diagnosed with “Crohn’s Disease of both small and large intestine.” It was also the beginning of the end of my dream job.
Since this has already become a long post I will end it here and follow up soon. Thank you for reading.
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