Motivational Issues

Lately I've been having an awful time keeping myself motivated.

I missed all of my first term exams, and had them deferred to reading week and the week and the weeks after . . . aka now. So what I should be doing is reading textbooks, making study notes and quizzing myself, but I would much rather be on facebook, reading other chronic illness blogs or online newspapers.

I even cleaned my room and the kitchen this morning as a form of productive procrastination.

I find that I'm so much less focused on school right now. I know it's important, and that I need to do well, but I can't seem to find the motivation to buckle down and get the work done.

I am generally a good student, and I don't want to see my marks slip on account of all this Crohn's business. But with exam after exam after exam plus this term's course work I feel like I never get a break.

Lately the pattern of my days has been go to school, stay until about 5:30 and then come home, eat dinner and study. Boring. And not much of a social life besides a couple of lunch dates.

I know this exam business will be over soon, and I can't wait!! I just wish I didn't have to spend all my time studying until then.

Depression

At first, I thought if I just ate right, excercised and took my meds I would be okay. But then it got so bad that I had to have surgery. And I developed a post-surgical leak.

It just seems to be one thing after another. I go back and try to continue living my life, but inevitably I end up back in the hospital.

It's depressing.

Also, I haven't told the majority of my friends that I have a disease. My second two hospitalizations were conveniently over Christmas and just before reading week. It's a bit lonely. I fell out of contact with a few people when I was in the hospital, and I'm now trying to reconnect, giving vague excuses for where I've been.

But some days it just gets to me. This isn't going to go away, and it sucks. And so I sit around and throw myself a pity party. Cry a little bit and listen to appropriate music. Binge a little bit on junk food.

But lately these bad days have been starting to pile up, and I don't want to live like this. I want to have fun, and be fun. I could use a bit more energy. I wish I could go back to before, when life was so much less complicated.

Here's a quick update. At my follow-up with the Surgeon, I was poked and prodded at. Since my pain was pretty much gone, we were given the option of re-imaging or letting it be. We opted to wait and see, if the abscess was still there, I'd feel it.

However, going back to the hospital was hard. I can't help but feel like everytime I walk through those doors, there's a chance I might not get out for another week or two. We could discover something else horrible that my body is doing to itself. I just don't know how to shake off this negative attitude.

I got Crohn's and lost a boyfriend

It wasn't exactly a cause-and-effect type thing. We had been having problems for a little while, and this just seemed to exacerbate them.

When your girlfriend is in the hospital, a couple of text messages doesn't exactly cut it. And a one hour visit where you can't wait to get out of there doesn't help either. I felt like we didn't really talk anymore.

And I was scared. A chronic disease, which I'm going to have for the rest of my life. And one with symptoms that aren't exactly polite dinnertime conversation.

I didn't want to tell him. And I kind of needed some time to deal with everything myself.

So we went on break. He didn't exactly protest, telling me that "he'd respect any decision that I made" and later in the conversation asking if "I even still loved him".

Feelings aren't a light switch that you can turn on and off, but sometimes they aren't enough.

We met one week later for coffee, and ended up having more fun with breaking up with each other than we'd had dating in a long time.

We'd gotten boring. School, work, plus an undiagnosed chronic disease left me exhausted all the time. I didn't want to go out, and hanging out in my room wasn't all that much fun.

It's been a couple of months now, and I know that it was the best decision for me, at the time. Our relationship barely made it through one hospitalization, I'm glad it didn't have to try and survive the next two. As well, when you miss weeks of class and all of your exams it helps to have a lot of free time for studying.

I am not a complainer

My GI doctor's favourite word to describe me is stoic. It's not the most attractive word in the world. Kind of makes me think of rocks. Boring grey rocks. I prefer determined.

I'm determined to do what needs to get done, no matter how much pain I'm in. How else could I get by with four years of chronic pain? If I took a break every time I hurt I wouldn't be able to get anything done. I would have to admit to myself that there was actually an issue. Other people might notice that I had an issue.

If I'm in pain, I'm not going to cry about it. I probably won't take a pill for it. I might not even mention it at all, and if you ask about it my automatic response is "I'm fine".

This sometimes makes things a bit difficult. For example, if it does get bad enough that I do need pain meds (at this point I'm usually in the hospital) I will calmly ask the nurse for pain meds. The only thing that might betray me is a hand gripping the side of the bed for dear life. No crying, screaming or whining for me.

This means that it's sometimes hard to make doctors or nurses take me seriously. If I mention that I'm having a symptom, it means it's happening, and probably fairly severe. And I'll probably only bring it up once. But you'd have to know me to know that, and that's where it gets tricky. If I have a new nurse every two days, and different doctors pop by every day sometimes things get lost because I'm not complaining.

My mom jokes sometimes that I need to practise my pain face. I think I need to practise being more assertive. I guess this blog is a place where I can let all those complaints out.

Where we are now

Eight weeks out of surgery and a new abscess.

I went to the hospital at the end of January for pain. In the same spot as the first abscess. It had been going on for about a week and I couldn't ignore it anymore.

The ultrasound showed inflammation and a possible inflammatory process. The CT showed inflammation. IV antibiotics for a week, 2 iron infusions. All set to send me home halfway through but my pain isn't gone so I push to stay.

It's too early for a Crohn's flare-up, but too late for post-surgical complications. GI and Surgery keep trying to pass me off to eachother.

Reimaging MRI once the antibiotics have been done for a couple of days. An abscess developed. 1.7 x 1.3 cm this time.

Sent home with oral antibiotics and a follow up appt with surgery in a week.

The saga continues

I went home from the hospital, recovered for a week and went back to school. I thought everything could be the same. If I just took my meds, tried to get in 5 servings of fruits and vegetables on a low residue diet and got enough sleep I could keep this disease under control.

Two weeks later I was back in the hospital with a low grade fever, pain when I ate and no bowel movements for 12 hours. Possibly a blockage.

I was admitted right away, and the blockage cleared itself up a couple hours later. The doctors wanted to discharge me, but there was still that pesky issue of pain, and inflammation. When it hurts to eat something, or take a sip of water something is definitely not right.

IV steroids and clear liquids. Two weeks later still no improvement. A section of my small intestine was so scarred that it was sending blockage messages to my stomach, and causing pain whenever something came in.

The solution: surgery.

The plan: remove six inches of small bowel.

The reality: twelve inches of small bowel, my iliocecal valve, some colon, my appendix and the abscess came out. As well, my small intestine had been detached from my stomach and fallopian tube. Luckily they were able to do it laparascopically.

However, the first night after surgery my blood pressure was low and the nurse turned off my epidural. I always have low blood pressure, but we didn't know to argue this until we spoke with the pain management nurse the next day. That night was the worst night of my life. On the pain scale of 1-10, it was a 100. It also set my recovery back a couple of days, because once your pain gets out of control, it can only be brought down in increments - nothing can make it completely go away.

A week of recovery in the hospital, and then I was out. Tapering the steroids and ready to get back to normal again (hopefully!)

Thank goodness this happened over exam period and Christmas, so I could keep it on the down low.

In the beginning . . .

There was pain. For four years, I had stomach pain. It started randomly, could be several times a day, wasn't related to what I ate and it was invisible. Also diarrhoea and a bit of blood, but I didn't tell anyone because it was too embarrassing.

Four years ago, I had it tested. Ultrasound, upper GI (barium), blood tests showed nothing. Except that I was anemic. So I just dealt with it. Ignored it and kept going.

It didn't go away though. Last year I decided to do something about it. Again, went through all the tests. Upper GI, lower GI, ultrasound, more blood tests and nothing. I was given "Irritable Bowel Syndrome" which means they have no idea WTF is wrong with you.

So again, I dealt with it. I never took any painkillers because the pain came and went quicker than they could kick in. I curled up in a ball in my bed when it hurt too much to study, and I moved my boyfriend's hand off my stomach when we cuddled.

Then, one day after swimming I had pain. Near my hip, on the inside and at the front. Sharp, brutally painful and hurt to move. It went away after a couple of days, but then it came back. I saw a Dr. They told me I had iliopsoas tendonitis, and should take advil around the clock.

I took advil, and suffered for a week or two. It got so bad that I couldn't go to school, so I saw another Dr. We went to the sketchy walk-in clinic at the strip mall across the street. They prescribed a stronger painkiller. I took it and it did nothing, except make me throw up. I tried to study for a test that weekend, but I was in constant pain. On the Monday, I saw my family Dr, and ovarian cysts were thrown around.

I was freaked out, so we went straight to the ER for an ultrasound. Possible appendicitis or an abscess. Then a CT scan.

It was an abscess. And inflammation of the small intestine (iliocecal). One colonoscopy later, I had Crohn's Disease.