Over the past couple days I’ve written and rewritten “my Crohn’s story”… I’ve just come to the point where I must just shit or get off the pot in terms of sharing it. There will always be things I forget, or left out and I really just have to start the sharing somewhere right. This journey has been a long 13 year journey, and in some ways even longer since to understand me you really need the before the Crohn’s part – don’t worry I’m not going that in-depth!
To the best of my recollection this is my story. I was for lack of a better term both naïve and nonchalant in my reactions in the early days. I graduated to paranoia, fear, and then grave disappointment and frustration. The story I am going to tell you leaves out a better part of the years in between and the minutia of my days. Basically to say, to me it isn’t as bad as it may sound, it was my life after all. I’ve developed swiss brains as I get older which I believe is a blessing sometimes. A term that was so dubbed by my brain’s inability to say I have swiss cheese for brains without mixing the cheese and brain at every attempt.
The start of my story of Crohn’s is actually not that eventful in terms of the disease itself. I had a normal childhood, known for my extremely picky food habits. I was an energetic and curious child. I struggled to make sense of the world feeling different but I can’t say that was because of anything specific. I suspect we all in some ways as children think we’re different from everyone else, and that is true since we’re all individuals. In my teen years I struggled with social anxiety while I found my way.
In 2000 at the age of 17 I had a memorable trip to the bathroom. I don’t remember any pain; in fact much of the following years, pain wasn’t the theme. I had what I would consider a normal poop but when I looked down at the toilet it was full of blood. I was shocked and scared and immediately called my mother. I can’t remember what exactly happened afterward except the result was I was sent to a man in an Apple tree clinic who asked me to lie on my side so he could put a scope in my ass… WHAT!?!! You want to put what where? Had no one ever told this man it was an exit only hole…. I repeat exit only! I was so embarrassed! My mother in the room, and this strange doctor indeed sticks a scope up – no prep, no drugs no nothing. It wasn’t painful, looking back he couldn’t have gone all that far really not like a colonoscopy at all. The feeling of that scope coming out was the weirdest and wrong feeling I had ever experienced. It was exactly like pooping but you couldn’t stop and had no control – but there was no poop. It felt like forever. He didn’t find anything and suggested that it was hemorrhoids and to follow-up with my GP. Seventeen and hemorrhoids? Seriously dude?
I never did follow-up, there wasn’t any more blood, or other symptoms until a few years later. By the second time that my friend the blood returned, I was away at college. One afternoon off to the toilet I went and again filled that bowl with blood. I wasn’t that freaked out this time. But being the independent adult I was, knew this wasn’t normal, and wasn’t a good sign. Off to the hospital I went. Alone, in a strange city with no one for support. I waited. This time, when the examination came the doctor snapped that glove on told me to roll on my side and hug my knees… then he stuck his finger up my ass. Oh holy hell my dignity left that room fast. I was not going to tell anyone this is what I had done today! After some blood tests I got the proverbial shrug and was sent on my way with a well you aren’t dying, but we don’t know where all this blood is from.
With the only symptom being blood it seemed like they either were too confused, or thought I had made the entire thing up. I was quickly learning that it was a bit pointless telling anyone about the blood in the toilet bowl… maybe this was something that was just going to happen every few years and move on. If there were no answers to be found, then I wasn’t going to subject myself to the humiliation of having someone keep sticking their fingers or scopes up my ass. I am just not into that kind of thing!
I went on with my merry life, finished college, and found a job in what was technically my first career in residential housing for kids with behaviour problems. Sometime in these years my blood work started showing deficiencies in my B12 and Iron levels. The most memorable of this was the incident where my B12 fell so low the doctor said they couldn’t get an actual number on it. The symptoms of this were the most confusing for the doctors and sheer hell for me. I lived in a three level townhouse at the time where I had to bum it up the stairs because standing up straight just wasn’t an option. It felt like I was on a fair ride even though I most certainly wasn’t. That said no one was acting like this was any big deal or caused by something. I was given B12 shots and things improved and off I went again. Other than this the only thing that kept me down was the time I caught a flu, cold, and urinary tract infection all at the same time. I took a week of work and that was it. I barely took a sick day otherwise. I was the picture of Health in my mind at least. I had the feeling of invincibility!
On Friday July 13 2007 my career in that field ended. Out of all the instances I had experienced, the one that ended that job was not the one I would have ever thought would. I have had a knife pulled on me, punched, kicked, hair pulled, my car smashed in, bitten, a suicide attempt and an incident involving gasoline. This one was nothing. One of my kids was upset for sure, but it was a pretty typical thing, one that I had been through before. I don’t know if it was her dropping her weight while in a non-violent holding technique or if when she kicked at my back. Either way I left my shift and promptly two hours later I couldn’t walk.
I had MRI’s, CT scans, etc. I had sustained a compression fracture in my lower spine. I was off work for 6 months. Three of which I couldn’t walk very well, and I had to move back in with my parents. This decision was the worst decision I had to make. I cried that I was being forced to move back in, convinced this time my mother and I would damage our relationship beyond the point of repair. I won’t get into the complexities of my relationship with my mother. Frankly you’d have to have lived my life to understand that fear, and still accept the fact I loved her with all my heart and she the same. The fact is we don’t live well together in the least.
Up until that point this was the most major health concern of my life. I was stuck on the heaviest NSAID drugs known to man. Nothing helped the pain. I tried chiropractor, acupuncture, and all sorts of things. This is the measure I now use when assigning a number to my pain. If the scale ended at 10 before, this was 50.
This was the starting point for my Crohn’s journey. Up until then the mysterious blood in the toilet had largely been ignored; but in November of 2007 my once every few years blood turned into every bathroom visit occurrence. I filled that bowl full every bowel movement for the entire month. Since I was already seeing doctors regularly for my back it most certainly got mentioned. I finally was referred to a Gastroenterologist. We’ll call him Dr. K!
I don’t remember much from my first visit with Dr. K. Just that he talked a lot about Celiac, and that’s what I guess they all thought I had. He scheduled me for an endoscopy, and colonoscopy the following January. The first prep was actually the easiest, it was disgusting don’t get me wrong but I managed to get through it without any damage to my psyche. For those who haven’t had these tests, or about to have these test, the drugs are fantastic. I even like watching the camera while doing the colonoscopy! The endoscopy isn’t that bad if you can remember this… breath through your nose. Seems simple but no one had told me that.
As the endoscopy scope was inserted I quickly learned I have the worst gag reflex. Even frozen I still gagged so much that I broke every blood vessel in my face and eyes. Hmm… clearly no deep throating was in my future. Dr. K was losing his patience quickly. Suffice to say after this I wasn’t a huge fan of my GI. It took me another couple of years before I actually found myself liking the man. Truly appreciating that he really is a good doc. The thing that saved me, and let him continue with the scope was the kind nurse who simply leaned over and said “honey just breath through your nose”. Oh my god what a difference that made! He finished the endoscopy and then I rolled over and… yup you guessed it, I had yet another man sticking things up my ass. I largely view this as the reason I will never become a fan of anal. Each and every time my dignity leaves the room and goes for coffee so that the doctors can do this necessary task. I’ve come to accept this but again… outside of medical necessity it will always stay an exit only hole.
After that laying in the gurney while the drugs wore off Dr. K came back and proudly announced I had Crohn’s disease, and a hiatal hernia. My only reference was an imagery I developed after hearing that my cousin in law went to the ER with a bowel obstruction due to her “Crohn’s Disease” which was puking up Poop. That didn’t sound appealing in the least.
It was January 2008 and I was 25 years old.
Up Next: Which is worse Crohn’s or the Medication?
Lessons learned: Breath through your nose during an endoscopy. My career path is never going to be in the sex trade – Mom you can rest assured the stripping phase at age 3 won’t follow me into adulthood promise!
Fearless in Sickness 