A Very Long Introduction...

Warning: LONG. So. Very. Long.

I was first diagnosed with ulcerative colitis in grade 12 – it was a pretty minor thing at the time and all I had to do was take some medication for a few months and I was fine. In fact, I was so fine that many years passed – maybe about 8 – before I had another attack. It seemed to start up again after I finished law school and started articling about 4 years ago – clearly, an extremely stressful time in my life. Even though I started having attacks here and there, it was always more of an inconvenience that could be treated with some pills, no problem. I had no idea that it could get as serious as it eventually did.

In November 2004, I had a major flare-up – again, triggered by stress with work (we were coming up to year end and I was trying to meet my targets for the year), stress with family, and stress with wedding planning (my now-husband and I got engaged in July 2004) – I was already worried about getting things together Christmas and coordinating the holidays with my family and my future in-laws, and it just got to be too much. So that was the first time I went on prednisone (for those of you who don't know, prednisone is a corticosteriod used to treat moderate to severe colitis attacks, however prolonged use can lead to serious side effects). It worked really well, though.

I always found it funny that doctors always said that what you eat isn’t a problem in colitis – it didn’t seem to make much sense to me that what you put into your body wouldn’t affect your colon. I had started to see a homeopath, who made some diet recommendations for me that at the time I thought were rather drastic and strict. But between the steroids and the diet changes, I seemed to get a lot better. So much better, in fact, that I stopped taking the drugs altogether a few months before my wedding.

We got married in September last year. The wedding was fantastic – the food was unreal and I ate everything on my plate, even though it was against the diet. In fact, I was feeling so good that I scrapped the diet a few weeks earlier. We went to Portugal on our honeymoon and the food was awesome. It felt so good to eat so well after I had been restricting myself for months.

So we returned from the honeymoon and headed back to the office. My job can often be a bit hectic, but it got crazy busy after we came back. And I don’t know exactly when it started, but I got sick again, probably sometime in December 2005. Same yearly stresses as before, but amplified. The family demands were also unprecedented – we were completely booked with family functions and events from 10:00 am on Dec 24 to 10:00 pm on Dec 26 – and then I had to go right back to work. So I got sicker and sicker, without really realizing it.

In January, I started the medication again and went back on the homeopathic diet. My attacks were rapidly becoming worse and worse. I was exhausted because I couldn’t sleep through the night – I would get up so many times with sudden painful cramps forcing me to go to the bathroom. At work, I would have to leave my office almost every hour to go to the washroom – and I was working on a major file at the time, which made matters worse. I couldn’t really eat anything – every time I tried to eat something, I would immediately get sharp pains in my abdomen trigerring yet another attack and I would have to immediately excuse myself from meetings in order to reach the washrooms in time.

I got really depressed. My husband would come home and I would cry in his arms almost every night. I didn’t want to leave the house unless I absolutely had to – so only for work. I remember one time Paul and I were going grocery shopping – I had gone to the bathroom at the house before we left, and the store was only 5 minutes away – by the time we got there, I had to run to find another bathroom. I couldn’t sit through a movie. I didn’t feel comfortable seeing friends or going to anyone’s house. I was sitting on pins and needles, waiting for the next sudden attack.

I felt like I was losing it. I had never had an attack this bad ever before. I went to see my doctor the first Monday in February. He was really concerned – he said that I needed to take a week off from work and if I didn’t show any marked improvement by the following Monday, I would need to go into the hospital for treatment. I was terrified – I had never been in the hospital for anything before. I thought to myself, there is no way I am going in – I was going to take that week off and I was going to get better.

Well, instead of getting better that week, it seemed to get even worse. I was going to the bathroom about 15-20 times a day. I could only drink Ensures for nourishment. Friday morning rolled around and I was in such tremendous pain – and I hadn’t slept the entire night. I asked Paul if he could take the day off of work so that he could take me to the hospital. Terrified or not, I didn’t feel that there was any other choice.

So we called up the doctor on Friday morning to let him make the arrangements with the hospital, and off we went. I am admitted, my doctor comes to see me, and I am put on the standard treatment of intra-venous high-dose steroids. Plus, I was highly dehydrated so I was going to get pumped full of saline solution. Don’t worry, said the doctor, most people respond to this treatment and you should be out of the hospital in 7 to 10 days.

So, 7 to 10 days ended up dragging to 6 ½ weeks in the hospital. Apparently, the standard treatment of the IV steroids didn’t work for me. So they tried to give me another round. For a few days it looked promising, and then I crashed again. I got really weak. I lost over 30 pounds of my body weight – I think the lowest I got down to was about 102 lbs. I kept passing out, which I had never ever done before. I needed 3 blood transfusions. I was forcing food down my throat and drinking 4-5 ensures a day, but I kept getting worse. And yet, I didn’t think I was that bad. I thought that if I was just patient, I could ride it out and I would be out of here in no time.

The doctors started talking to me about surgery about week 4. I refused to believe that I needed it. Give it time, I thought, it will get better. And around that time, it still seemed possible. But at the disease rapidly increased its assault on my colon, my treatment options were quickly becoming fewer and fewer. As one of my doctors told me, if I did nothing, I would die. Or I could have my colon removed and live. Come on, I thought, it can’t really be that serious. This is just colitis, right?

I remember the moment I truly realized that the surgery was the only realistic option left. It was a Wednesday, about 5 weeks in, my doctor came to see me and told me that I would need another – that would have been my third – blood transfusion. I was crushed, because I had been trying so hard to get better and I realized that all my efforts were in vain. I was so upset and so terrified – I was completely gripped with fear. I wasn’t scared that I would die during the operation or anything – I was afraid of more pain, I was afraid of the unknown, and I afraid of having to deal with the changes in my body.

My surgeon came in on his day off to do my procedure on Sunday, March 12. It took about 5 or 6 hours (so I'm told) and I spent a few more hours in the recovery room afterwards, before being wheeled back to my own room in the surgical unit. I don't remember much those first few hours after surgery - I do recall being a bit delirious and clicking like crazy on my self-administered morphine drip. Come to think of it, the morphine was the best part of the whole experience.

Apparently, it was a good thing that I didn’t wait any longer to get the surgery done – the surgeon told my husband that my colon was so weak, so eaten away, that he could have poked his finger right through it. And still, I didn’t think that I was that sick.

After the surgery, everything seemed to happen so fast. I had so many tubes sticking out of every part of me, which were removed day by day. By this time, I had grown completely dependent on the hospital. I was terrified when they took away my morphine. I was scared when they wanted me to get up and walk around. I was afraid of eating solid food again. I was really afraid of going home – it felt like I had been in the hospital so long that I couldn’t even remember what home was like. And what if something went wrong when I was at home? Who would help me? Would I get to the doctor in time? What would happen to me?

But eight days after surgery, I was ready to go home. Really, really ready. It must be sign that things are improving when you no longer want needles stuck into you twice a day. When the hospital "food" just doesn't cut it anymore and you're dreaming of garlic toast. When you want your own home and your own bed and your pyjamas. Yes.

Alas, I'm due to go back in on Wednesday, Nov 29 for more surgery. It is expected that I will stay in the hospital this time for 10 days to two weeks post-op. I am not looking forward to going, but it is a necessary evil. So, I thought I would start this blog to relate some of my experiences during the last few months and, let's face it, to kill sometime between morphine shots and hospital dinners.