I don’t know what caused my latest flare up, but once it starts it’s a spiralling cycle of feeling dreadful, then feeling better, then a sudden urge to stay close to the bathroom, and then the inevitable hopelessness in knowing that you have little control over what happens when you’re away from your home unless you starve yourself.
This is what living with an IBD (Inflammatory Bowel Disease) can be like during a flare up and it’s a depressing time. At the moment the only positives I can draw from my current flare up is that it’s the middle of winter anyway, so at least I’m not missing beautiful summer cycling days, and also that since 2020 I am now working from home. Not feeling compelled to leave the house is helpful at times like these.
My version of IBD is Ulcerative Colitis, which I’ve had on and off since my early twenties. This latest flare up started to become symptomatic a couple of months back. Possibly it was because I was becoming stressed about my pre-diabetic diagnosis, as well as a few things in life that weren’t going the way I would have hoped, and also I went and caught the mega cold that was going around which had wiped me out for about a month, adding to feeling quite down.
A routine hospital appointment in early October had picked up that my Colitis had returned but at the time I wasn’t experiencing any symptoms. So I took this as an early warning and I tried, through diet to try to stop things going in the wrong direction, but by early December it was clear I had failed.
What is Ulcerative Colitis?
Inflammatory Bowel Diseases a term that is used to describe 2 chronic conditions: Ulcerative Colitis and Crohn’s Disease. They are both life long conditions that involve inflammation of the gut. Ulcerative Colitis, which is what I suffer from, affects the colon (large intestine) only, whilst Crohn’s can affect any part of the digestive system, from the mouth to the anus.
Symptoms include pain, stomach cramps or severe bloating. In addition there is recurring and bloody diarrhoea, with an extreme urgency, potential weight loss and extreme tiredness. Sufferer’s sometimes miss out on absorbing some of the nutrients of the food they eat due to the ulceration on their guts.
Symptoms can come and go, but during a flare-up symptoms can be severe. During periods of remission sufferers experience no symptoms at all. Each person suffers in different ways.
With regards to treating the disease, there are a number of different things that can be done, but sometimes very little helps. The basic treatment is a specific anti-inflammatory drug which you take forever, but when things get bad the next stage is steroid treatment. The dose is usually high, to kick start the body into taking attention, but the side affects can be pretty uncomfortable. Weight gain is all but guaranteed
Where symptoms can’t be controlled, or make the sufferers life unbearable, then surgery to remove the worst affected parts of the bowel may be the solution.
IBD sufferers are also at increased risk of developing bowel cancel.
IBD and mental health
Stress is a major trigger for my Colitis. And when you understand the symptoms and potential longer term issues, having a flare up causes plenty of stress on it’s own.
In normal times I can handle stress pretty well, but there comes a point that one additional stress factor becomes the tipping point between good health and Colitis flare ups. Often in our lives we constantly live with low levels of stress and it becomes such a normal part of our routine that we barely notice it. We adjust and carry on. Since 2020 many of us will have put our low mood levels down to the impact of living in these Covid times and the adjustments we have had to make. But in doing so, we are failing to see the impact this is having on our health.
I say this because I didn’t believe I was particularly stressed, but looking back over the last year, it’s fair to say that whilst my mental health is actually in a better place than this time last year, it never got back to a great place. Better does not mean good, it just means better!
Knowing that I generally look fit and healthy, but have an invisible illness can be difficult. During a previous flare up, I have desperately run into a shop in the past after such terrible cramps, knowing that an accident was about to happen and asked to use their facilities. Even after explaining the issue, they still refused. On that occasion all I could do was to curl up in a ball outside the shop, and ask my husband to come and collect me in the car. I couldn’t walk any further. Knowing that can happen keeps me indoors on my bad days.
As someone who uses the outside world as my meditation zone, the place where breathing in fresh air, calms my mind and keeps me sane, I find that Colitis flare ups make me feel like I am trapped in a prison. When my mental health takes a battering, there are two ways that I normally deal with it. My first is to spend a lot of time outdoors, ideally on long rides, maybe well into the night, with no real plan other than to go wherever the mood takes. My second is to hibernate. To just shut myself away, binge watch box sets on tv, or read endlessly. If I take this route, I tend to avoid social engagements, and I’m very happy with my own company. I can keep this up for months though. But it’s like a reset for me, and eventually I emerge refreshed, calm and ready to take on big challenges.
The problem in 2021 though, and in particular whilst suffering with a Colitis flare up, is that I have already spent 19 months effectively hibernating at home thanks to Covid, so outdoors is where I really want to be.
It is very true that when you feel ill, it’s pretty difficult to keep your mental health in check. Telling yourself to “pull yourself together”, is only a temporary sticking plaster, and it doesn’t last long. You can make future plans, but when you don’t know for how long you’ll be suffering for, a hopelessness sets in. If your sleep is affected, then it just compounds those feelings. Sometimes it’s just easier to cry.
IBD and Cycling
My last significant flare up was in 2017, and it was the worst I have ever had it. There was a huge amount of stress in my life, and the Colitis came on fast and full on. I had decided that I wanted to take part in the next Paris-Brest-Paris (2019), and so wanted to get started in adding in longer rider for pre-qualification. The lovely, but challenging Oasts and Coasts 300km ride in Kent was my first goal. I started ok, but it was clear about half way around that things weren’t all that well with me. At the first control I spent way too long in the bathroom, and after that struggled to eat anything. Determined to plod on, and just limp myself round, I continued, making sure that I stopped at all conveniences along the way. This was fine during the day, but as I rode into the evening, they were getting locked up. The remainder of the ride was grim and much time was spent in bushes, even though there were many (now locked up) toilet blocks along the route. This was a lesson to me that a Radar Key would be a good purchase. I had a medical need for one, and to this day I never ride my bike without mine, just in case.
After that, for a while, I only went on rides on my own, and to places where I knew I would be able to find regular places to stop. It was just easier to manage that way, although there were some tricky occurrences still. Despite managing to get in some very long distances, I was very slow, barely making Audax cut off times, if at all. Of course I kept the reasons to myself….it’s one of those embarrassing illnesses that people don’t want to talk about. I could either admit I had this illness, or just let people think I was super slow – so super slow it was.
This time around though my flare up is in winter, and I have a turbo trainer, so I can still keep my legs turning. I know that I would be best advised to keep stress on my body light, so that there’s a chance for the inflammation to calm down. I also know that I need to pay attention to what I put in my body for the same reason. That’s actually pretty difficult, especially at this time of year. After the last couple of years we have had, I really don’t want to deprive myself at Christmas of everything that provides some joy. But I will take it easy. When I eat junk, my symptoms are always 10 times worse for the next week, so I shall eat lots of the healthier things I enjoy, but limit the rest.
The condition is always worst for me first thing in the morning, and then again through the night – which then disturbs my sleep. But this also means that any cycling that involves an early meet up, is off the cards right now. So once again, my cycling is mostly solitary and local, if at all.
I have some big cycling ambitions for 2022, but if I’m to take them on, then right now health has to be my priority.
And so, I’ll be out on my bike less for a while, but at least that will give me some time to catch up on a few other outstanding things, which in turn may lessen my stress levels. Reduced stress should help my flare up go into remission a little quicker, and ultimately help to get me back to fitness quicker. I have a home gym set up at home – one of the lockdown changes we made was to dismantle our spare room, and kit it out for home exercise use. It does also mean that I have a dedicated space for my turbo bike too, surrounded with reminders that I got myself fit before, so I can do it again. I can spend some time improving my flexibility and strength, which with certainty will improve my cycling later on when this flare up nears its end.
But for now, I’ll have a little cry every now and then, hibernate a little, and then pick myself up, brush myself off and get on with life again.
Professional athletic sufferers
Sir Steve Redgrave – 5 times Olympic Gold Medal winning rower
Cory Greenberg – Professional cyclist riding for Team Veloclub Ratisbonia
Alberto Bettiol – EF Education-Nippo Pro rider & 2019 Tour of Flanders winner
Darren Fletcher – Ex Manchester Utd football player
Lewis Moody – Former England rugby captain
Where to get IBD information
There are lots of resources available if you do, or suspect you might be suffering from an IBD such as Ulcerative Colitis or Crohn’s. In the UK the charity Crohn’s and Colitis UK has one of the most informative websites out there. They provide information about the conditions, but also where to get support, and details for the latest research. As a charity they are always looking for additional funding, so consider also donating to them.