A moment with Ulcerative Colitis

Warning: contains poo

Someone close to me once said, “first a stammer and now this”. At the time I wasn’t sure how to respond, and to be honest, I still don’t. I’m sure it came from a place of love, of concern, and no harm was meant. When I heard those words for the first time, I remember thinking on one end, “I know”, all the way to “have I really been dealt such a shit hand?”, before moving onto thinking how people deal with much worse. Life has to go on. 

As my colitis has recently decided to rear its ugly head after years of remission, this thought flooded back to me, mainly because I have been feeling sorry for myself whilst searching for answers. After years of blissfully, and naively, believing my amazing body had ridden itself of the autoimmune disease, it has come back with a vengeance. And with the worst possible timing ever. But let’s start where it all began.

Actually, let’s start with what ulcerative colitis actual is for those who don’t know. Taken from www.crohnsandcolitis.org.uk, colitis is a type of inflammatory bowel disease (IBD) where parts of the gut become swollen, inflamed, and ulcerated. This can cause diarrhoea, blood in your poo, weight loss, tiredness, and tummy pain. Colitis is a lifelong condition and it can be unpredictable. You’re likely to have periods of good health, known as remission and times when your condition is active, known as flare ups or relapses. Right now, there is no cure but medicines and sometimes surgery can keep you feeling well for long periods of time. At least 1 in every 227 people in the UK is diagnosed with colitis.

My diagnosis 

I was 24, single and living alone when I started to notice blood in my stool whilst visiting the toilet eight, nine, ten times a day. Some days the blood was joined by a strange looking substance, some days my energy levels were scarily low with my stomach choosing to either bloat to the point of me looking five months pregnant or cramp into excruciating pain. I made an appointment with a GP only to be fobbed off with a diagnosis of piles and a bad case of IBS. “Keep a food diary”, he said.

After a second opinion and an undignified rectal exam, I was referred for a colonoscopy. I was terrified. There was talk about biopsies, about cancer. I was 24. Back then I wasn’t the healthiest - drinking beer, eating fast food, smoking the odd cigarette, possibly burning the candle at both ends - but what twenty-something year old isn’t? 

At my post-colonoscopy consultation, I was horrified by the photos laid bare in front of me. My colon was inflamed, raw and plagued with ulcers. I was diagnosed with ulcerative colitis and prescribed a round of steroids whilst the correct course of treatment was considered. Now if you have ever been on steroids or know someone who has, you will know they are far from ideal. Of course, they brought me some much-needed respite from the ongoing afflictions of my new-found disease, but the side effects were ugly. Between the rounds of steroids, I sampled a couple of different drugs, all of which required regular blood tests, scans and general poking around of private parts to be reassured that no adverse side effects were being experienced. It's safe to say, it was a difficult time. 

The good, the bad and the even shittier 

The constant fatigue. The constant sickness. The swollen joints. The not knowing when the urge to poo could strike. 

I remember collapsing in my flat alone late one night with nobody to call. I remember having to summon the strength to call the ambulance. 

I remember laying on a hotel bathroom floor in searing pain, not wanting to cause a scene in front of the guy I was seeing. I remember this leading to fresh worries about never being able to meet a man who I could openly discuss my toilet troubles with.

I tried gluten free. I tried lactose free. I avoided alcohol and sweet treats. I tried paleo and juice diets. 

I want to add a disclaimer right about now to say I am very much aware that there are people out there with Ulcerative Colitis or Crohn's Disease who have it so much worse than me. I’ve never had to think about having part of my colon removed or having to deal with the prospect of a colostomy bag. There is a spectrum when it comes to any autoimmune disease, but this is my story, and everyone's story is a story to tell. 

Eventually I found Humira which led me to living a life almost symptom-free and the first time I could survive without the unpleasant steroids. Goodbye moon face! If I remember correctly, I was injecting myself with Humira for two to three years, my symptoms reducing to near-nothing, before I was eventually given the green light to switch to a medication with less side effects. Finally, I was living a normal life. I was living a healthier lifestyle. I was happy.

Humira (the brand name for adalimumab medicine), is a biologic medicine made from proteins or other substances produced by the body. Whilst a life saver for many as it reduces inflammation, it is also an immunosuppressant which lessons your immune system making you more susceptible to infections. I was monitored very closely when I was on it, told to stay clear of anyone with chickenpox and measles, and be on the look out for the developing of any new side effects.

My colitis remained at arm’s length and did so for many, many years. That is until the autumn of 2022 when it decided to grace me with its presence after my husband and I had started travelling Europe in a campervan. 

Campervans and colitis 

This may come as a shock to you when I say campervans and colitis do not mix. It’s bad enough pooing in the same room as your husband, but pooing in the same room as them up to six times a day in a porta-potti where the pooing isn’t entirely normal (it’s regularly runny, sometimes noisy and very bloody) is, quite frankly, gross. 

Our van parked overlooking the Picos de Europa

In addition to my husband losing all lust for me, I have lost running to it. I am unable to run 1km without needing the toilet. And when I say needing the toilet, I mean needing the toilet to the point where it is a choice between pull down your pants and go in the first bush you can find or poo your pants and hope you make it back to the van without too much embarrassment. I’ve done both. When travelling in the van, running is the easiest form of exercise you can do, and running was, is, my passion. I hate that this awful disease has taken it away from me. Will I ever be able to run without pooing?

The reappearance of the disease hasn’t been easy to handle and I will openly admit that my mental health has been impacted. It is like having an injury with no timeframe for repair, for recovery. I feel doomed, desperate and desolate and with no running, which is usually the thing I do to regain mental clarity and stability. You wouldn’t know this if you were to look on my social media where it looks like I am having the time of my life. Nobody wants to see the ugly side, the side where I cry, where I fear my husband falling out of love with me or him no longer seeing me as someone he could find attractive.

My husband has been through it all with me. Back to the early days where I opened up to him about the illness, to the accompanied hospital visits, to the reassurance, to the person I can vent to, to being the voice of reason, of calm. But a person can only take on so much, and with “first a stammer and now this” on constant repeat in my mind, I know I have to fight through this myself. But how can you fight something you don’t understand? 

Hiking in Northern Spain

After years of remission, why a few days after my thirty-third birthday and two months into a travelling adventure, is this happening? I should be having the time of my life, instead I’m anxious, full of unanswerable questions and dreading when the next poo will announce itself. But how am I supposed to have answers when the cause of colitis is still relatively unknown? What we do know is that the responsibility of the immune system is to protect the body but in colitis, the immune system starts attacking the bowel. What we don’t know is why that happens, although it is thought to be caused by a mix of genetics, bacteria in the gut and the environment. Just bad luck I suppose. At this moment there is no known cure but researchers are finding out more and more about IBD all the time.

New Year, New Hope

After a December of self-pity, I decided January would not be a repeat. I am so much better than that. I have the option of considering a course of steroids but the memories from previous years is a strong deterrent, leaving them only as a last resort. I was advised to increase my current medication and, thankfully, after three months of a severe flare up, January has seen an ease to my symptoms, plus I’ve been re-evaluating my lifestyle and health choices. I also made the decision to buy a bike to satisfy my need for exercise in the absence of running. I am already feeling positive and committed to not letting this disease drag me down any further. And as I sit in here on the 1st February, a new month upon us, I feel so much better, my flare up getting milder and milder by the day. Maybe the prospect of running again isn’t too far away in the future.

If anything these past few months have been a lesson. I will no longer take my health for granted. I will no longer be so naive. If I find myself in remission again, I will remember that one day, this could, and probably will, come to an end. On the flip side, I know my flare up shall pass, either naturally, or through some kind of medical intervention. Living with colitis is unpredictable, unwieldy, unwelcoming. But you have a choice. To suck it up, to get on with it, or to play a victim, feeling sorry for yourself and the cards you have been dealt. I’m not saying not to be sad about it. That’s only natural. But be sad for a little while then let the moment pass, before coming back fighting, coming back stronger.