I've been meaning to do this for a long long time - I kept telling myself I have to write it all down somewhere before I forget it. So why not to do it in a nice way with pictures and all, right?
So I'd like to introduce you to my colon. Here it is >
My happy large bowel. And sometimes not.
It all started right on my 6th b-day. I was in the hospital for the first time and everyone thought it was appendicitis, but they finally agreed not to do a surgery, cause the pain kind of resolved spontaneously.
Then I was 15, weighing something crazy like 85 pounds and my doctor was freaking out about me being anorectic, apparently. I was sick every now and then, mostly at least once a month, taking a day off school and then going on with my normal life. Sometimes the pain was so bad that I ended up at my doctor's and she gave me a shot of metamizole and sent me home. When I came there for the third time or something, she recommended a gastroscopy, where I almost threw up and the GI doctor didn't find anything. Surprisingly. She also advised to try a diet, thought it was my gallbladder or just an acid reflux. Now it seems either funny or really really sad :-P
So this went on until I moved to Prague, then all problems suddenly stopped for a year. And then started again. But it was different, when I ended up in hospital, cause for them, giving a metamizole shot wasn't enough. I spent useless three days of my spring break there, trying to explain I'm not having an intestinal obstruction and I usually go to school next day when this happens, which scared them a little bit
Anyway, they recommended a coloscopy, which I had in our hospital back home. Now, after having experienced three already, I can surely say the first one was the worst and I'm never having a coloscopy without drinking picosulphate before it and total total total anesthesia during it.
And then, I sat in a hall in front of the exam room and a GI doctor came out and did the worst thing doctors supposedly do: told me about my life-long untreatable diagnosis in front of all other people. I knew what it was, my mom who was sitting next to me luckily did not. And I came home with a few boxes of meds and spent quite a long time reasurring myself, that it's nothing, it's a mistake, mine is a mild case etc. I remember reading that up to half Crohn's patients have a bowel surgery during their life and I thought it cannot be me, I'm not that sick, I'm fine. Call me optimistic! :-)
My mom made me to find a GI doctor in Prague and it was a specialized center for inflammatory bowel diseases. When the new doctor saw the biopsy and coloscopy results and listened to me talking about having no symptoms, she doubted I'm really ill. But then she got the results of antibody levels in my blood and she decided to put me on steroids.
And it was summer 2011 and we spent travelling around the U.S. west coast. I was sick there once and at one point during the endless night, I was really afraid I was going to need a doctor and never being able to afford to pay for it. And I also met Michael. He, having Crohn's himself, told me about specific carbohydrate diet and showed me how he ate and cooked with it. I tried it myself for a week and decided not to go through with it cause I really didn't have any symptoms besides throwing up and being in pain for that one night.
When my doctor in Prague heard I was sick in spite of taking the steroids, she wanted me to get another coloscopy, which I did and when I talked to the doctor afterwards (this time properly in her office), she told me I need to have a surgery as soon as possible, cause I have a stricture between my small and large intestine and that's what causes me all the problems since the time I was 15. And she put me on Adalimumab, biological treatment, for the time until I have the surgery. I had to give the shots to myself at home, which was pretty challenging, cause every med student knows that stabbing yourself with a needle is something completely else than stabbing strangers :-P. But it really helped even with the almost subconscious chronic pain I've had for 7 years.
I didn't want to miss school, so I had the surgery scheduled for spring break. I went there in the morning of the day before the surgery itself, they put a nasogastric tube through my nose right away, I talked to anesthesiologist who thought I was either on drugs or just really stupid cause I was politely smiling all the time during the talk with the tube in my nose and throat. Just brilliant. But I persuaded him to give me spinal anesthesia for the time during and after the surgery, cause I was really afraid of the pain.
Next day, I said goodbye to a few inches of the end of my small intestine and a few others of my large bowel. Nice to meet you, not-so-happy colon.
Then I spent 3 days in ICU - with enteral nutrition coming down through the NG tube and fentanyl through the epidural cath, feeling high on the opiates and watching crappy tv shows all night. I actually had to learn how to get up and walk, cause it hurt so bad. And the day they moved me from ICU to normal ward and removed my epidural cath with pain killers, my parents came to visit and I was in so much pain I had to ask for opiate shots. And I kept asking for 2 more days, every 8 or 12 hours. Falling asleep high on piritramide was the worst thing - I kept dreaming horror dreams about my family having actual small pox and me dying with open stomach full of pustules. Everything in bright colors.
I spent another two weeks at home. Then I went to see my GI and she put me on azathioprine immunosuppressive drug, which like 15 percent of people are allergic to and cannot take it. Lucky for me, I am one of them, which I realized after a week of feeling nauseous, extremely tired and in pain. Luckily for me more, it's the only drug known to maintain remission in Crohn's patients after surgery.
And then the third coloscopy, 6 months after the surgery, showed the inflammation back in my intestines. Funny thing. So now back on the first meds I started with, which haven't been proved to help with this kind of inflammation at all, I can just believe once again that it's done and I'm not the half from the initial half, which has another surgery and another and another.
I'll just remember forever the moment, when I retured to the same hospital for my clinical rotations in surgery this summer, I saw an 18-year old Crohn's patient being prepared for the removal of his entire colon, lying there on the table with the blood from his now clean colon on the floor, and I told to myself I'll never let this happen to me. Then I took a long long breath and joined other surgeons, complimenting me for all the right answers I was able to give about his condition and I kept all the thoughts about my own Crohn's to myself.
