Okay, I’m finally going to write the story of my ulcerative colitis. It’s not something I’ve wanted to talk about, but I’m ready to start coming to terms with the fact that I have a chronic disease, and I think that a part of that is letting people know. A lot of my friends live interstate and I don’t see them often, and others that I see mostly at karate just know I disappeared for weeks at a time, had been in hospital and lost a lot of weight. So I’ll start from the very beginning.(Mum, please don't read this - you know the whole story and I don't think you need to go through it all again).
[The symptoms of inflammatory bowel diseases (IBD) are all a bit gross, and not really things people want to hear or talk about. If you’ve never heard of UC, here’s a rough explanation of the symptoms. I’ll use the common online UC abbreviations, explained here for those of you who don’t spend a lot of time reading about IBD: D = Diarrhea, B = Blood, BM = bowel motion.]
The colitis began pretty slowly. I started having symptoms in June 2009, but didn’t think much of it to start with. It was just a stomach ache every week or so and the occasional odd BM. But the frequency and intensity started to increase, and soon I was in the bathroom 5 or 6 times a day.
I saw my GP who sent me for blood tests (which were inconclusive), an ultrasound (which showed nothing) and a course of antibiotics (which I took, but didn’t want to because there was no reason to think it was an infection). I finally got referred to a gastroenterologist and a month or so later (Nov 2009) had a colonoscopy and a diagnosis of mild left sided ulcerative colitis.
At this stage, I was really optimistic: I knew what it was; there were drugs to treat it; sure it was chronic, but I was going to get into remission and everything was going to be fine. How wrong could I possibly be?
The first meds (salofalk enemas) caused me more pain than I was already in, and after 2 weeks I stopped taking them. My gastro was overseas and I stupidly didn’t go to see my GP. I just stopped the meds.
I went untreated for about 3 weeks, by which time I was in almost constant pain. I could hardly eat because of the nausea, and when I did, nothing stayed down. And I couldn’t sleep because of the pain. One evening in tears, Ben decided that I had to go to the doctor. I went to an after hours clinic and was put on prednisone. Man was that great – almost instant relief – I thought I was cured!
I saw my mum for the first time in 6 weeks a couple of days later, and her mouth dropped open when she picked me up at the airport. I looked so sick! She bullied me onto the scales and I discovered I’d gone from weighing 63kg to 50kg in about 6 weeks. But the prednisone was great – I could eat again and I wasn’t in pain. I was really weak and tired all the time though. I just thought I needed to recover from the weight loss and everything would be okay.
The lack of sleep and constant pain really messed with my mind. I hadn’t seen that I had lost weight. I wasn’t weighing myself because I wasn’t well enough to go to the gym. I didn’t realise that I wasn’t eating enough, even though I was only eating a couple of scrambled eggs a day and maybe some potato chips. When mum finally made me look at myself in the mirror, I looked like the walking dead. Somehow it crept up on me and I didn’t see it happening.
About a week before Christmas 2009, I fainted on the escalator at work. I cracked the side of my head and scraped all up my back. Fortunately, someone stopped the escalator before my hair got caught in the moving parts… Someone called an ambulance and I was carted off to hospital.
I spent 5 days and 4 nights in hospital, and started on salofalk granules as well as methylprednisolone. It was good for the first few days, and made me acknowledge that I was really sick and had to start taking it all a bit more seriously. By day 3, I was feeling better and was so ready to go home. Hospitals are places to be when you are so sick you can’t move – home is the place to go to get well.
I missed Ben’s birthday, but at least I was out in time to fly home to Hobart to spend Christmas with family.
But I still wasn’t well, and whenever I started reducing the prednisone, things got worse. Also, the meds were making me sleep badly, and I was so hungry all the time (probably not a bad thing) and I started growing facial hair and felt dizzy and tired all the time. Fortunately the hair went away when I stopped the meds.
I started on the maximum dose of an immunosuppressant (Imuran/azathioprine) in mid January, which takes about 3 months to start being effective. In the first of many fortnightly blood tests, it was discovered that I was anaemic and started on iron supplements, which at least helped with the tiredness and dizziness.
I asked my doctor repeatedly whether there were foods I should or shouldn’t be eating, but he has persistently said that food has nothing to do with it. I found this a bit unconvincing – how can food have nothing to do with the inflammation of a good portion of my digestive system – but he’s the doctor, right?
I gradually came off the prednisone over January and February 2010, but was back on it by the start of March. When it became obvious I was going to have to be on cortisone for a while, I moved from taking prednisone to entocort (budesonide). At $200 for one month supply, it was pretty hefty, but was meant to be as good as prednisone but with less nasty side effects (like bone density loss and affecting thyroid function).
It did nothing for me. And I mean nothing at all.
On 1 April, I went to emergency at the hospital and was admitted for another 5 day stay, and then again on 14 April. (The second time, I discovered that the way to get a bed in emergency immediately is to say that your pain on a scale of 1 – 10 is 8). I did get to spend my birthday in between my two hospital visits with my family in Tasmania.
Over April and May I took most of my remaining 5 weeks of sick leave. One of the things the public service has going for it is generous and accruing sick leave entitlements. When I first started working almost 6 years ago, I remember wondering how you could possibly use 17 days of sick leave in a year…
At the same time, my gastro suggested that I start on infliximab, an IV immunosuppressant. It was the last thing he had to suggest that I hadn’t tried already. It also isn’t covered by the PBS for treating UC, so approx $7,000 for 3 doses. Fortunately, the Calvary Hospital was willing to cover the cost for me.
By this time, I was really over it. I’d always thought that I’d get sick, then get better. It is what had always happened before. That there was a pill to fix everything. But the doctors seemed to have no idea what to do for me. I’d been reading everything I could find on the internet about UC and I’d come across a lot of references to the specific carbohydrate diet – I’d even bought the book ‘Breaking the Vicious Cycle’ earlier in the year, but things were going so well on the prednisone that I hadn’t really looked at it. So I finally decided it was worth a try.
It’s a pretty big change, eliminating grains and sugar and milk were the really big things for me. But I figured I was willing to try anything that had a semblance of a grain of truth to it.
I decided I’d go ahead with the infliximab as well, a dose at the start of May, another 2 weeks later and another 4 weeks after that.
It was a pretty bizarre experience the first time. I turned up to the cancer clinic at Calvary Hospital in Canberra, where it is administered. The nurses were great: getting the cannular in first try (I was so over being stabbed with needles); keeping up the cheerful banter. I was amazed how happy a cancer clinic could be.
By the end of the 3 doses, I had also weened off the prednisone altogether and was feeling great. No more B or D or pain.
I was sticking to the SCD as well, but rushed into eating advanced foods like nuts and dried fruit and tasty baked things because they are convenient to take to work, and yummy, and filled the gap left by losing home made biscuits and breakfast cereal and bread.
It seemed like everything was fantastic and I was cured. When am I going to stop thinking that?!?
About 6 weeks ago, everything started falling apart again. It started around the time of a lunch out with work colleagues. Mediterranean looked pretty promising as a cuisine choice for a restaurant – just pick a dish with meat and vegies. Well, every grain free dish had their homemade tomato sauce, which contained ‘just a tiny bit of sugar’. So I bit the bullet and had the roasted eggplant, capsicum and red onions in tomato sauce, which was really, really good.
I don’t know if it was related – it was also about 12 weeks since my last dose of infliximab – but I started having stomach pain again, and then D and occasional B.
I waited a week and it just got worse.
In the meantime, I was reading more about SCD. It sounds like it is pretty common to have flares around the 6-month mark, and this was almost 6 months to the day since I started the diet. But I also came across a lot more information on starting the diet, and how to introduce foods gradually to give the lining of the intestine time to heal and to work out what your trigger foods are. Just because they are legal on the diet, does not mean everyone can tolerate them.
So I restarted the diet, and decided I’d wait a week, and if there was no improvement, I’d make an appointment with my gastro.
But here I am, 37 days later: no visit to the doctor, no new drugs. The symptoms mostly cleared up in a couple of days, and after a solid week of a massive headache, I’ve been feeling pretty good. I found some great new resources like scdlifestylebook.com (their free chapter and podcasts are fantastic) and wrote a post on ihaveuc.com, and realised that I am finally ready to talk about what I’ve been through.
That said, I started writing this post well over a week ago. I’ve played around with it a lot: it’s difficult to work out what to put in and what to leave out, and even once I was pretty happy with the content, I had a hard time hitting the post button. I’ve told bits and pieces of this story to different people, but haven’t put it all together in one go before.
It sounds really depressing, and I guess it has been. I wouldn’t wish this on anyone and I understand why UC used to be thought to be a psychological condition – I have thought I was going mad at times. But I’m getting used to the idea that this is something I am going to have to live with. I’m not going to let it be depressing. Most days, I feel pretty good.
37 days and counting…