At the end of my freshman year of college, just hours after having moved out of my dorm, I began feeling sick.
And I was sick for two whole weeks. Very sick. Given that I have no spleen, I have to be extra cautious, so whenever my fever hits 101, I have to go into the hospital for monitoring. During this particular sickness, I was in and out of the ER on several occasions.
Alas, the fever finally broke, and all was returning to normal. Well, not completely. I was still having diarrhea. I figured it'd pass soon, so I thought nothing of it.
One month later: Still having diarrhea on occasion. Now with more urgency. And a little constipation thrown in just for fun.
Three months after sickness: All of the above, plus severe abdominal pain. More irregularities in bowel movement and habit, I was going more frequently and texture was different. I also experienced irregularities that I've yet been able to efficiently explain.
At five months, it became obvious to me something was really wrong. But given the content (is that the word?) of the situation, I told no one.
My sophomore year of college, I was in a school apartment and had no relationship with my roommate, so keeping this problem a secret was no problem since I had my own bathroom. My parents were also able to remain oblivious, but I had to let my boyfriend in on what was going on. I told him I was having bowel problems and we left it at that. It's the only time I ever spoke of it.
I knew I needed to get checked out, but I knew that meant I'd have to have a colonoscopy.
Being a psychology major (and someone who studies psychology more on her own than at school), I am well aware of the process of desensitization. But I swear it only makes it worse for me. When I lived in the "city" I was never around bugs, but when I saw them, I loved them. All of them. I picked them up and played with them without hesitation.
Then I moved to the country. Bugs. Everywhere. All of the time. The same bugs I'd always been fond of. Suddenly, instant phobia. Even of, and especially of, bugs with wings - not excluding butterflies or lady bugs here, either.
As I began to study psychology and become familiar with desensitization, I worked with my roommate to overcome this phobia. Efforts were futile.
With some things, however, I'm unable to even truly try to desensitize. An example of this would be surgery.
In the hospital, I underwent nearly 20 surgeries. I am no stranger to this. But with each surgery came more fear. Anything resembling surgery and I lose my shit (no pun intended).
Well, a colonoscopy is certainly no exception. Not that anyone really fancies colonoscopies.
Regardless, I dealt with my pain alone for a year and a half after first experiencing the symptoms, which were relentless and progressively growing worse.
Then, one day, I arrived home from work. It was around 9 a.m. I had worked the night shift and spent the entire night up on the roof with one of my employees/friends.
I was ready to crash when I got home, but I wanted to keep my best friend, Kayla, updated on the night while my memories were still fresh. The "employee/friend" was also a target for me in more personal matters.
I wrote out the message and sent it to Kayla over facebook. I then closed my laptop.
"Boop" - someone IMed me on Facebook chat. Usually, I'd ignore this and keep the laptop closed. But this time, for some reason, despite being exhausted and after some hesitation, I opened my laptop back up.
It was my other best friend, Sarah: "Do you know what's happening with Kay?"
I won't go into detail now because I know I'll make a few posts about this at some point, but basically, Sarah had just found out that our dear friend Kayla had been in an accident.
We spent the next few days in hospital waiting rooms and at the Kayla's bed side until she passed.
I was devastated.
Almost immediately, I experienced a new change in my bowel habit - blood.
I ignored this at first, until there was finally enough blood to alarm even my aloof self. I googled it, and Sir Google seemed to think this a fairly urgent problem. So, I begrudgingly let my mom in on what was happening and what had been happening for the last year and a half.
Appointments were made with several Gastroenterologists. I quickly decided I did not want a male, meaning my mom's gastro, who is also attractive, was out. Thus, we turned to a doctor we had no experience with, but who was highly recommended.
We were paying the rates of appointments with the actual doctor, yet every time we were sent to her P.A. (I think that's what they're called?). The colonoscopy was scheduled for two months from then.
I never even met the doctor performing the colonoscopy until the day of. She was an older, tiny, silly lady. She was straight and to the point, but also very silly, which is a good thing because I do nothing but joke when I'm nervous or in any sort of distress.
Turns out, the procedure was a breeze - the prep, well, that's another post for another day.
The doctor told us a bit about what she'd found, and explained she took a biopsy of the lesions. At this point, we didn't know much.
Finally, we received the call confirming the results about a week later. I forget exactly what they said to my mom, but my mom did specifically ask, "Okay, so she doesn't have Ulcerative Colitis or Crohn's or anything?" The caller then confirmed that I tested negative for any diseases. Cool.
We still had a follow up appointment the following week after the call. We go in, and of course, no doctor. Again. Despite the payment to see the actual doctor.
The nurse begins going through what was found in the colonoscopy and after a few minutes she nonchalantly says, "So you have Ulcerative Colitis and this is what we're going to do."
Say what? Run through that one more time for me.
I had little knowledge about UC, so my mom took over the conversation with a stern "We were told she tested negative for any diseases." Again, nonchalantly the nurse says, "No, she tested positive."
"But when your office called with the results, they said negative. I double checked on that fact and even specifically mentioned Ulcerative Colitis."
"Well I don't know anything about that."
"So my daughter has a disease, and because of your office, we thought she was in the clear for the past two weeks. And if we chose not to come back because someone at your office said she was fine? What then?"
You see, my mom made sure to ask this because two of my aunt's have UC, one has Crohn's, and another has Colon Cancer. One of them even has a j-pouch. So, my bloodline is not exactly equipped with healthy colons.
Despite the doctor being so nice and friendly, none of her P.A.'s were pleasant at any of our appointments. This particular nurse was not bothered at all by the fact that false information was given to us. I know the mistake was probably not hers and that she was likely not the woman who called with the results - but still, show some remorse, or some worry that we were given false information about something as important as an autoimmune disease. That is a PROBLEM. At least act like you want to fix it.
Anyway, so there it was. Disease number two. I was 19 at the time of the official diagnoses, 18 when the symptoms started.
A bit on a rant about this doctor - At this same appointment, I was given a lot of instructions as to what to do. I was prescribed suppositories and some other huge pills, which I was to take three times a day. Then, I was told to change my diet. I was not allowed to eat fruits or vegetables or anything wheat or with grains. The nurse told me I was to be on this unhealthy (her words) diet for 6 months, at which point I would come in for another colonoscopy.
Two huge problems with this diet.
First, I am a vegetarian. You take away fruits and vegetables, and you're basically leaving me with mac 'n cheese and mashed potatoes here. A subproblem here is that I also have food neophobia, meaning I don't eat much variety to begin with.
Secondly, I was raised on wheat bread and brown rice, and anything of the like. My parents raised me on the healthier alternatives of things, and I cannot even stomach white bread or white rice.
This diet was ridiculously unhealthy.
After a few weeks on it, I was actually losing weight because I simply did not eat. There was nothing for me to eat! I was absolutely miserable and felt awful, so I finally conceded to give my mom's male gastro another try.
My mom's gastro is... about 6'6", blonde hair, blue eyes, athletic build, pretty face, fairly young, and armed with intelligence, wit, gentle hands, and genuine kindness. Every time I see him, I have to do everything I can to refrain from gazing into his dreamy eyes over a foot above me and saying "You're pretty" to him.
This is not the sort of man I want searching up my butt and talking to me about my poop. No sir. Add all of this on top of the fact that I already have an issue with male doctors (which will probably be explained later), I did not want to go.
But I didn't know what else to do. So I dragged my feet to his office. He looked over the results of my colonoscopy and we told him everything that happened with the other doctor. He immediately took me off the lousy diet, and told me to simply listen to my body and what makes it react unfavorably (he suggested a food journal). Then he took me off of the million times a day horse pills.
He told me to stick to the suppositories and one other, once a day pill, and basically said I don't need to have another colonoscopy unless my condition worsens or something new occurs. Other than that, I may have one as a check-up sort of thing, but not for at least two years.
I told him that I had nothing against him, but that I would feel uncomfortable with him doing a colonoscopy, at which point he said I could have my appointments with him, but at the time of a colonoscopy he could have his female partner in his practice do it.
So, there you have it. The frustrating story of my diagnoses of Ulcerative Colitis.
I like to think that, in a way, Kayla was pushing me to finally seek help. If not for the blood, I would have ignored this problem for who knows how long. I know it was simply the stress of losing her that aggravated my ulcers enough to produce blood in my stool, but Kayla was going to nursing school, so I just like to believe this was her way of knocking some sense into me. :)