Every 8 weeks, round about this time, I start to get very nervous. I start to think, “Is today the day?” Dread. My gut feeling (hah) is dread.
We’re going to talk about bums for a bit. Sorry, if that offends you, please stop reading now. I decided to write this up because I am feeling anxious about my health at the moment, but also because maybe someone who is also anxious about their health and the natural history of ulcerative colitis/inflammatory bowel disease will read this and it will help them. I don’t know, I just wanted to get the whole story down.
Here we go.
At the time I worked for a doctor, and although I had confided in my colleague I couldn’t bring myself to ask my boss for a referral. Finally, when I had been bleeding for weeks and still hadn’t done anything about it, my colleague told me that she would take matters into her own hands if I didn’t act. I got the referral. Just to be clear, it was quite a lot of blood…
That was 2010. There’s nothing quite like having a colonoscopy and the nurse patting your hand whilst repeating, “So young, so young.” To be fair, it was the same day as a cardiac list, so the average age of patients in the pre-op area was skewed fairly high.
The specialist I saw was a colorectal surgeon. He was used to treating patients with aggressive and often terminal cancer, but as a favour to my boss he saw me. He told me that I had proctitis, nothing too bad, nothing to worry about, not going to get worse, use these steroid suppositories three times a day and it will clear up. We didn’t really talk about the prognosis, and we never talked about it as though this was a chronic condition that I was going to be stuck with forever.
We’re going to talk about bums for a bit. Sorry, if that offends you, please stop reading now. I decided to write this up because I am feeling anxious about my health at the moment, but also because maybe someone who is also anxious about their health and the natural history of ulcerative colitis/inflammatory bowel disease will read this and it will help them. I don’t know, I just wanted to get the whole story down.
Here we go.
 |
| The way to Inverness: see those clouds building?... this will become important later in the story. |
The beginning
When I was 25 I started noticing blood in the toilet bowl. I ignored it at first. In fact, I ignored it for quite a while. Not because I was scared that it was something sinister (although I was a little bit scared that it was sinister), but because I was too scared to go to the doctor. As a lifelong sufferer of white coat syndrome, and someone who avoids invasive medical procedures for as long as humanly possible, the thought of going to a doctor who would have to investigate the issue by looking and feeling… nope. I’m squeamish about all that prodding and poking, and talk of bodily fluids and functions.At the time I worked for a doctor, and although I had confided in my colleague I couldn’t bring myself to ask my boss for a referral. Finally, when I had been bleeding for weeks and still hadn’t done anything about it, my colleague told me that she would take matters into her own hands if I didn’t act. I got the referral. Just to be clear, it was quite a lot of blood…
That was 2010. There’s nothing quite like having a colonoscopy and the nurse patting your hand whilst repeating, “So young, so young.” To be fair, it was the same day as a cardiac list, so the average age of patients in the pre-op area was skewed fairly high.
The specialist I saw was a colorectal surgeon. He was used to treating patients with aggressive and often terminal cancer, but as a favour to my boss he saw me. He told me that I had proctitis, nothing too bad, nothing to worry about, not going to get worse, use these steroid suppositories three times a day and it will clear up. We didn’t really talk about the prognosis, and we never talked about it as though this was a chronic condition that I was going to be stuck with forever.
He was a lovely man, but I always walked away from my appointments feeling vaguely patronised, like I was a little kid or an airheaded young woman who just needed to calm down. It rankled too that in his correspondence he consistently referred to me being Prof X’s secretary, which I was not. And he had a statue of Mary in his office, which looked down on the desk, and that weirded me out.
Anyway, that first bout cleared up pretty quickly, although I struggled a lot with medication compliance. I am non-compliant at the best of times, but when the medication has to be stuck up the bum three times daily, well… I struggled to keep with the program.
The second bout, 6 months later, also cleared up pretty quickly. The third and fourth not so fast. I always thought that it was likely my fault that I kept flaring up because I wasn’t using the steroids for long enough each time, and so there was a sense of inevitability each time and also this feeling that actually, I just needed to be better with the medication and I would kick it once and for all.
In 2013 when I flared up again, I asked my specialist, the colorectal surgeon, for a referral to a GI specialist who I had read had an interest in treatment of inflammatory bowel disease and irritable bowel syndrome. When I saw her, I felt a bit better because she had an entire plan of attack: use this medication, and if it doesn’t work, we switch to this. If you get another flare up, this is how we proceed. For the first time I started to get the inkling that it wasn’t really as simple as being compliant with medication. But in 2013 at least, it all worked out – I switched to a combination of steroid suppositories and pentasa (mesalamine) suppositories, on the understanding that if I had another flare up within 3 months of stopping the steroid/mesalamine combination, I would start taking oral medication, potentially long term. ie. forever. I didn’t flare up again.
Around Christmas in 2014 I wasn’t feeling great in the gut, but I had been flying a bit, and eating a lot of roasted meat and mince pies, both of which tend to make me very uncomfortable. But then on New Years Day 2015 I noticed some blood. Just a tiny amount, but I noticed it. And then over the next few days and weeks, it got a lot worse and it wasn’t responding at all to the steroids that I still had in my stockpile.
In those intervening years I had also developed a backbone and lost a significant amount of the squeamishness that had previously characterised my interactions, not only health wise, but in life in general. People tell me now that I have ‘a strong personality’ and ‘opinions’ as though that is a bad thing, something that I should secretly be ashamed of and consciously attempt to tone down, but the difference now is that previously I got walked all over and let assholes treat me like dirt, and I don’t stand for that anymore. I still agonise over whether or not I’m coming across the wrong way, and if the people I work with/socialise with actually like me, but I invest less energy in that worry these days and just try to get on with it.
Anyway, as a result of the above personality revision, I had fewer problems asking my new boss to recommend a new specialist (since geographically my new job was far from my old specialist), and less discomfort when saying why I needed to see said specialist – although at least in doctor speak, ‘PR bleeding’ doesn’t sound as confronting.
Fast forward a few weeks, mid Feb 2015, to the new specialist appointment, and what a revelation: she actually listened to my detailed history, said she didn’t need to look at anything right now, booked me in for a colonoscopy and gastroscopy, and prescribed a short tapering dose of oral steroids to try and control the inflammation in the short term in conjunction with some more topical mesalazine.
Anyway, the thing about topical therapy is that while it is first line for proctitis/colitis, suppositories don't work as well as enemas, because their distribution is very limited. Ugh. I had previously found the mesalazine suppositories kind of uncomfortable, in addition to the usual indignity of a suppository, but this time the mesalazine was in the form of a 'foam enema' which was as disturbing as it sounds. It looked like a shaving can cream, but smaller, and with long disposable nozzles! I used it three times and had a bad reaction to it (burning and immediate cramping...not nice).
Anyway, that first bout cleared up pretty quickly, although I struggled a lot with medication compliance. I am non-compliant at the best of times, but when the medication has to be stuck up the bum three times daily, well… I struggled to keep with the program.
The second bout, 6 months later, also cleared up pretty quickly. The third and fourth not so fast. I always thought that it was likely my fault that I kept flaring up because I wasn’t using the steroids for long enough each time, and so there was a sense of inevitability each time and also this feeling that actually, I just needed to be better with the medication and I would kick it once and for all.
In 2013 when I flared up again, I asked my specialist, the colorectal surgeon, for a referral to a GI specialist who I had read had an interest in treatment of inflammatory bowel disease and irritable bowel syndrome. When I saw her, I felt a bit better because she had an entire plan of attack: use this medication, and if it doesn’t work, we switch to this. If you get another flare up, this is how we proceed. For the first time I started to get the inkling that it wasn’t really as simple as being compliant with medication. But in 2013 at least, it all worked out – I switched to a combination of steroid suppositories and pentasa (mesalamine) suppositories, on the understanding that if I had another flare up within 3 months of stopping the steroid/mesalamine combination, I would start taking oral medication, potentially long term. ie. forever. I didn’t flare up again.
Then it stopped getting better
2013-2015 was kind of stressful. There was a lot going on workwise (I changed jobs twice), and at home (we bought an apartment, but then we didn’t buy an apartment). At one point I stopped taking my crazy meds without any pre-planning because I felt pretty good, but then a few weeks later I stopped feeling pretty good. Things were a bit up and down, is what I’m saying.Around Christmas in 2014 I wasn’t feeling great in the gut, but I had been flying a bit, and eating a lot of roasted meat and mince pies, both of which tend to make me very uncomfortable. But then on New Years Day 2015 I noticed some blood. Just a tiny amount, but I noticed it. And then over the next few days and weeks, it got a lot worse and it wasn’t responding at all to the steroids that I still had in my stockpile.
In those intervening years I had also developed a backbone and lost a significant amount of the squeamishness that had previously characterised my interactions, not only health wise, but in life in general. People tell me now that I have ‘a strong personality’ and ‘opinions’ as though that is a bad thing, something that I should secretly be ashamed of and consciously attempt to tone down, but the difference now is that previously I got walked all over and let assholes treat me like dirt, and I don’t stand for that anymore. I still agonise over whether or not I’m coming across the wrong way, and if the people I work with/socialise with actually like me, but I invest less energy in that worry these days and just try to get on with it.
Anyway, as a result of the above personality revision, I had fewer problems asking my new boss to recommend a new specialist (since geographically my new job was far from my old specialist), and less discomfort when saying why I needed to see said specialist – although at least in doctor speak, ‘PR bleeding’ doesn’t sound as confronting.
Fast forward a few weeks, mid Feb 2015, to the new specialist appointment, and what a revelation: she actually listened to my detailed history, said she didn’t need to look at anything right now, booked me in for a colonoscopy and gastroscopy, and prescribed a short tapering dose of oral steroids to try and control the inflammation in the short term in conjunction with some more topical mesalazine.
Anyway, the thing about topical therapy is that while it is first line for proctitis/colitis, suppositories don't work as well as enemas, because their distribution is very limited. Ugh. I had previously found the mesalazine suppositories kind of uncomfortable, in addition to the usual indignity of a suppository, but this time the mesalazine was in the form of a 'foam enema' which was as disturbing as it sounds. It looked like a shaving can cream, but smaller, and with long disposable nozzles! I used it three times and had a bad reaction to it (burning and immediate cramping...not nice).
A revision in my thought process
Here’s an interesting thing: this whole time I’d been thinking that I was a whingy little bitch who needed to stop complaining about this thing that wasn’t really so bad. It could, after all, be Crohn’s disease, which affects the entire GI tract (as my friend puts it, “from arsehole to breakfast time”), or it could be pancolitis, which means that the inflammation extends throughout the entire colon. After my colonoscopy, which showed that I now had a 25cm stretch of inflammation (in 2010 it had been 15cm), I made a comment to the specialist about it not really being that severe (because I didn't want to seem like an over-reactor, and my first specialist had always stressed that it wasn’t that severe), her reply: “Well, I consider 15cm to be bad enough”.
She also noted that for some reason, even though the extent of the inflammation in proctitis is limited (to the rectum – there, I said it), it can cause worse symptoms than someone who has Crohn’s or pancolitis. Tenesmus in particular is just really not fun. She also started calling it inflammatory bowel disease. That is to say, this was a recognition, maybe a validation, that I felt pretty awful, this feeling was normal, and this is a chronic inflammatory disease that can sometimes be stubborn and difficult to treat. And she said that compliance with thrice daily suppositories would be an issue for most people.
In April, with no real improvements even with a change in botty foam, my dose of oral mesalazine was increased to 4.8gm/day and in May I had an iron infusion because I had been bleeding without any improvement since January first, and was starting to get anaemic.
By this point it was June and nothing was working, so after much discussion, I decided to start on azathioprine. Azathioprine is an immunosuppressant drug that is used for people who’ve had an organ transplant, and for also some other autoimmune diseases. It had been floated before but because of the side effect profile (life threatening immune suppression, hair loss, skin cancer formation etc) I’d been keen to exhaust other possibilities first. We also talked about some experimental therapies, namely tacrolimus (another immunosuppressant) and arsenic suppositories (!!), but again, I decided to exhaust the conventional options first.
I was very nervous about taking azathioprine whilst we were away because I am a hypochondriac and I thought that I was going to end up with some kind of life threatening side effect. I spoke to the doctor just before leaving and she reassured me that all of my blood tests showed what was expected (some immune suppression, but not too much) but said this: “If something’s doesn’t feel right, you stop taking it.” I love her.
When we had been in Europe for a few days I did decide to stop taking the azathioprine because I just felt very nervous about it. Also, I was waking in the night in a lot of pain with nausea and it did not feel good. Even though I assigned that to the effects of jet lag and particularly bad patch of my ongoing flare up, I was getting very worried and it just wasn't worth the anguish.
So in Inverness about two weeks later, I was feeling pretty good. We’d just walked 100km and I thought that I was just being a stupid about the azathioprine. So that night at about 10pm, I took my full cocktail of drugs (10 tablets, at that point) – mesalazine, crazy med, oral steroids, something to counteract the terrible reflux caused by the steroids, and the azathioprine.
By midnight I was in serious discomfort. My back hurt. A lot. Like a band of pain right around my middle. Like a cramp radiating around my entire midsection that wouldn’t ease up. The bed was lumpy, and so I moved to the other bed in our room hoping that the mattress would be different. It wasn’t. I got on the floor to try and stretch my back out. I tried the foetal position, curled in a ball, I tried the child pose, I tried rocking back and forth like a beetle on its back. Rob asked me, “Are you ok?” and I replied, “I don’t know.” At 3am he asked, “Do we need to go to the hospital?” and I said, “I think so.”
Rob said that when the ED doctor came in to the room and saw me involuntarily clenching and unclenching my fingers, whilst moaning, she seemed pretty convinced that I wasn’t faking. They gave me morphine, and a lot of it. The nurse who gave me the first dose said, “I’m not going to measure it, I’m just going to keep going until you feel faffy.” You know what faffy is when you feel it. And then you’ll vomit.
They took me for a chest and abdominal x-ray and made me sit up. It hurt so much that I vomited (again), and then I fainted. I fainted so badly, and was so high on morphine, that my blood pressure wouldn’t go back up and they did an ECG. On the little colour-coded chart they use in the NHS, my BP was at the bottom of the red zone. Rob said later, “When they did the ECG I knew you really were bad, because your boobs were on show and you didn’t even try to cover them up.”
Pancreatitis. A rare side effect of azathioprine; not even one that had been on my radar. The most excruciating experience of my life to-date. Earlier in the year I had google-diagnosed myself with pancreatitis (probably a gas bubble) and when I had asked the doctor about it she said (to her credit, she only laughed a tiny bit), “If you ever get pancreatitis you’ll know about it”. Oh, I knew.
I’m not allowed to take azathioprine, or anything related to it, ever again.
She also noted that for some reason, even though the extent of the inflammation in proctitis is limited (to the rectum – there, I said it), it can cause worse symptoms than someone who has Crohn’s or pancolitis. Tenesmus in particular is just really not fun. She also started calling it inflammatory bowel disease. That is to say, this was a recognition, maybe a validation, that I felt pretty awful, this feeling was normal, and this is a chronic inflammatory disease that can sometimes be stubborn and difficult to treat. And she said that compliance with thrice daily suppositories would be an issue for most people.
In April, with no real improvements even with a change in botty foam, my dose of oral mesalazine was increased to 4.8gm/day and in May I had an iron infusion because I had been bleeding without any improvement since January first, and was starting to get anaemic.
By this point it was June and nothing was working, so after much discussion, I decided to start on azathioprine. Azathioprine is an immunosuppressant drug that is used for people who’ve had an organ transplant, and for also some other autoimmune diseases. It had been floated before but because of the side effect profile (life threatening immune suppression, hair loss, skin cancer formation etc) I’d been keen to exhaust other possibilities first. We also talked about some experimental therapies, namely tacrolimus (another immunosuppressant) and arsenic suppositories (!!), but again, I decided to exhaust the conventional options first.
 |
| And the best medicine of the bunch is..... |
That little incident in Scotland...
I had been on azathioprine for two weeks when we went to Europe in July 2015 and had been feeling pretty ordinary. But I was also flaring quite badly, so I just put it down to that. In retrospect, I would say that even in those first couple of weeks something was definitely up, but it wasn’t super bad and there was a lot of other stuff going on.I was very nervous about taking azathioprine whilst we were away because I am a hypochondriac and I thought that I was going to end up with some kind of life threatening side effect. I spoke to the doctor just before leaving and she reassured me that all of my blood tests showed what was expected (some immune suppression, but not too much) but said this: “If something’s doesn’t feel right, you stop taking it.” I love her.
When we had been in Europe for a few days I did decide to stop taking the azathioprine because I just felt very nervous about it. Also, I was waking in the night in a lot of pain with nausea and it did not feel good. Even though I assigned that to the effects of jet lag and particularly bad patch of my ongoing flare up, I was getting very worried and it just wasn't worth the anguish.
So in Inverness about two weeks later, I was feeling pretty good. We’d just walked 100km and I thought that I was just being a stupid about the azathioprine. So that night at about 10pm, I took my full cocktail of drugs (10 tablets, at that point) – mesalazine, crazy med, oral steroids, something to counteract the terrible reflux caused by the steroids, and the azathioprine.
 |
| I took this photo before I took all my tablets...and it's pretty much all I got to see of Inverness. |
By midnight I was in serious discomfort. My back hurt. A lot. Like a band of pain right around my middle. Like a cramp radiating around my entire midsection that wouldn’t ease up. The bed was lumpy, and so I moved to the other bed in our room hoping that the mattress would be different. It wasn’t. I got on the floor to try and stretch my back out. I tried the foetal position, curled in a ball, I tried the child pose, I tried rocking back and forth like a beetle on its back. Rob asked me, “Are you ok?” and I replied, “I don’t know.” At 3am he asked, “Do we need to go to the hospital?” and I said, “I think so.”
Rob said that when the ED doctor came in to the room and saw me involuntarily clenching and unclenching my fingers, whilst moaning, she seemed pretty convinced that I wasn’t faking. They gave me morphine, and a lot of it. The nurse who gave me the first dose said, “I’m not going to measure it, I’m just going to keep going until you feel faffy.” You know what faffy is when you feel it. And then you’ll vomit.
They took me for a chest and abdominal x-ray and made me sit up. It hurt so much that I vomited (again), and then I fainted. I fainted so badly, and was so high on morphine, that my blood pressure wouldn’t go back up and they did an ECG. On the little colour-coded chart they use in the NHS, my BP was at the bottom of the red zone. Rob said later, “When they did the ECG I knew you really were bad, because your boobs were on show and you didn’t even try to cover them up.”
Pancreatitis. A rare side effect of azathioprine; not even one that had been on my radar. The most excruciating experience of my life to-date. Earlier in the year I had google-diagnosed myself with pancreatitis (probably a gas bubble) and when I had asked the doctor about it she said (to her credit, she only laughed a tiny bit), “If you ever get pancreatitis you’ll know about it”. Oh, I knew.
I’m not allowed to take azathioprine, or anything related to it, ever again.
The big gun
When we got back to Australia in August, I saw the specialist that week, and she put me back on prednisone, this time tapering from 40mg, and we did the paperwork for Remicade (infliximab), which is a different class of drug entirely called a 'biologic'. It works by switching off part of your immune system (or more accurately, from binding to, and thereby inhibiting, the cytokine TNF-a). She also gave me a pathology request for hepatitis and tuberculosis because the biologics can cause reactivation of both if you have a latent infection.
I had my first Remicade infusion on 10 September. At that point I had been bleeding continuously since January first. I stopped bleeding on September 11. I'm sure that it doesn't actually kick in that quickly, so what I was probably seeing was the prednisone finally taking effect after a month at high dose, but it was like a magic bullet. From then on, after the initial 3 induction doses, I had an infusion every 8 weeks. At one point in January 2016 I thought that it wasn’t working anymore, and had another scope, but it was working. There was no sign at all of inflammation and the biopsies showed healed chronic inflammation. Remicade put the flare, that terrible flare that lasted for almost 300 days, into remission.
So now because I am in Dubai, and after much consultation with my doctor, I decided to stop the Remicade. The pathology looks good, I feel good, and it’s only because I am Australian and have access to the PBS that I have the luxury of ongoing supply. In the UK, you can only continue to receive Remicade if you are actively unwell – it’s too expensive to use it to maintain remission. I had an infusion on July 27, and would have been due for another one on August 22, and then October, and then December, and then February…. And now it’s 7 months out and things are ok. But I am nervous.
I’m still taking mesalazine, lots of tablets everyday. The nature of inflammatory bowel disease is that it comes and it goes.
No one ever told me, as a 25 year old, that I was going to spend the rest of my life waiting to get sick again.
Does that sound fatalistic? I don’t know… A number of people told me, when I felt really sick in 2015, that they were surprised that I didn’t take time off work or seem more like…a sick person (in fact, a lot of people expressed amazement at how good I looked, because I lost 13kg.... and you know, you look better if you're thin, amirite??). But I guess, what else can you do? If I had taken time off, then I would have just been sitting at home feeling less-than-perfect, when at least at work I was so busy that I just kept my head down and got stuff done.
I had my first Remicade infusion on 10 September. At that point I had been bleeding continuously since January first. I stopped bleeding on September 11. I'm sure that it doesn't actually kick in that quickly, so what I was probably seeing was the prednisone finally taking effect after a month at high dose, but it was like a magic bullet. From then on, after the initial 3 induction doses, I had an infusion every 8 weeks. At one point in January 2016 I thought that it wasn’t working anymore, and had another scope, but it was working. There was no sign at all of inflammation and the biopsies showed healed chronic inflammation. Remicade put the flare, that terrible flare that lasted for almost 300 days, into remission.
So now because I am in Dubai, and after much consultation with my doctor, I decided to stop the Remicade. The pathology looks good, I feel good, and it’s only because I am Australian and have access to the PBS that I have the luxury of ongoing supply. In the UK, you can only continue to receive Remicade if you are actively unwell – it’s too expensive to use it to maintain remission. I had an infusion on July 27, and would have been due for another one on August 22, and then October, and then December, and then February…. And now it’s 7 months out and things are ok. But I am nervous.
I’m still taking mesalazine, lots of tablets everyday. The nature of inflammatory bowel disease is that it comes and it goes.
No one ever told me, as a 25 year old, that I was going to spend the rest of my life waiting to get sick again.
Does that sound fatalistic? I don’t know… A number of people told me, when I felt really sick in 2015, that they were surprised that I didn’t take time off work or seem more like…a sick person (in fact, a lot of people expressed amazement at how good I looked, because I lost 13kg.... and you know, you look better if you're thin, amirite??). But I guess, what else can you do? If I had taken time off, then I would have just been sitting at home feeling less-than-perfect, when at least at work I was so busy that I just kept my head down and got stuff done.
As a hypochondriac, chronic illness is kind of a let down.
It’s not dramatic, and nothing particularly urgent happens (except for the experience in Scotland, which was so awful and kind of scary, and really not as much fun as a hypochondriac imagines a hospitalisation will be). Maybe I won’t flare up again. I probably will. My specialist just says we’ll deal with it when it happens.
And so now I wait. Tick tock.
❤
And so now I wait. Tick tock.
❤
