The Art of Crohns Disease

THE ART OF CROHNS DISEASE

 

An artists battle with IBD

I love art and it has been a constant throughout my life with Crohn’s Disease. It keeps me focussed and engaged. You might notice that I sometimes jump from creating pieces in blues to creating pieces with splashes of vibrant colour, that’s how life with Crohn’s Disease is and I think that might explain why I jump around between subjects and colours so much. I have started to observe life a little differently, and I hope that comes across in my work.

Sometimes you’re up and sometimes you’re down, but I have learned that you just have to take it as it comes and cherish every minute you feel even slightly okay. So this week I thought it was about time I finished off this blog post which I have been writing for nearly two years. In fact this post was 27-years in the making. 

I have written it many times, and rewritten it, scrapped it entirely, and pondered, and rewritten it again, and every time I have found myself an excuse not to post it. 

The main reason I never posted it was because of the stigma that comes with having Inflammatory Bowel Disease. No one likes to talk about problematic bowels but I think that’s the butt of the problem, and yes I realise what I just did there (I added in a butt pun – so much less funny when you have to explain) and I can promise you there’s so much more to come. Those of a nervous disposition might want to give up now, but otherwise, bear with.

I also wanted to get back to talking about contemporary art rather than the art of the fart, but this week I have been going through a mild flare-up and realised that not enough people understand IBD. So this is my little contribution to the pot… If one person takes something away from what I am writing about today then my work on this subject has been worthwhile, but that work is nowhere near done. 

Once Upon a Time…

I have a problem with my poo. Nothing like being frank and open with your doctor, but honestly it took me the best part of seven years to pluck up the courage to speak to him about it.

I remember the day I had that conversation with him about my erm… bowel problem and it was like I imagined an AA meeting would be. In fact his first words were “would you care to share”, followed by me saying I don’t think I’m ready, and him saying “don’t worry, no judgement, but I really can’t help you if you don’t tell me what’s wrong”.

I almost told him that I had a cold, or had developed a rash in a sensitive area after being abducted by aliens because both would have been slightly less embarrassing than talking about my rapid and frequent bowel movements. 

But neither of those would have explained why I got through 17-toilet rolls in the week leading up to me visiting him. What I did know though was that I was inflamed and ashamed. I was in my prime, I could have been an athlete once, but without the exercise thing that goes with it. 

That conversation with the doctor took place twenty years ago, but it would be 19 years later before any doctor would provide me with a diagnosis which said, yes, you definitely have a problem, it is Crohn’s Disease.

That’s the thing with Crohn’s Disease, it can take forever to find out if it is Crohn’s or Ulcerative Colitis or something else entirely, and during the nineteen years of waiting I pretty much had every type of oscopy available, and multiple x-rays, scans, and ultrasounds. So many in fact that I thought for a while that a Geiger counter would mistake me for a walking nuclear reactor.

Something else you realise about life when you have IBD is that whatever bad decision you ever made about buying a mattress for your bed at home, dissipates the moment you have to sleep in a hospital bed. I’ve slept in a few and if they came with a hundred night best sleep guarantee, I would send them all back. Couple this with the misconception that a stay in hospital is supposedly to help you rest and recover, but no one in a hospital actually allows you to sleep, they’re forever having a prod and a poke.

For a few years we did the let’s try some anti-diarrhoeal medications thing, but none of them would provide me with any relief. The toilet became my man-cave, to the point where I installed a water-proof radio and redecorated every time I had to consume the bowel preparation which you need to take pre-oscopy. 

This is the stuff that in the wrong hands could be used as a weapon of mass stomach destruction and I can categorically confirm that this powdery, supposedly dissolvable lemon flavoured nuclear laxative can make a grown man weep, call out loudly for momma, and wish that the toilet came with a built in seat belt. 

Just when the first litre is done with, it’s time for the second, then the third. If there’s one thing I have learned about bowel-prep it is that you need a strong stomach to survive it.

They say you can’t eat for at least two-hours before the preparation is taken, and not at all until after the procedure is completed. For me it was three days after the procedure before I plucked up the courage to put anything in my mouth ever again for fear it would shoot right back out. 

I’m not good with anything medical at all. I have a sensitive composition to the point where even the most simplest of medical procedures like phoning up for an appointment will make me feel queasy, so it was with a heavy heart I agreed to the colonoscopy. The doctor had practiced with a sigmoidoscopy a week before and that didn’t go so well.

The only thing that scares me only slightly less than a colonoscopy is finding a spider in the car. If I did ever find one in the car, I'd drive that car with me and the abomination from the ninth level of hell into a wall, kill us both, and die a hero. 

Colonoscopies are not on my bucket list, never have been, and I'd take on a spider instead of a sterilised Karcher pressure washer hose and that bowel prep any day of the week. 

What followed was a number of years when I suddenly realised I had an intense passion for reading. I read every pathology report I could get my hands on. I stopped reading during the times I would go into remission but then whatever it was would come back and slap me in the butt and I would get back to reading the results of my latest tests. Often they were inconclusive and for a while I went through diagnoses faster than poop through a goose. 

IBS, Diverticulitis, laxative abuse (yes I got tested for that because I clearly love colonoscopies so much and thought it would be a fun lifestyle choice), pernicious anaemia, stress, lactose intolerance, allergies – wheat and gluten, microscopic colitis, ulcerative colitis, arthritis, before we finally arrived at Crohn’s which had been suspected for a while by my latest doctor who should be immediately made a Saint.

My current doctor is just the best. I have lost count of the number of specialists I’ve seen over the years. Some of them I have gotten to know well enough that we high five whenever we bump into each other in the supermarket.

It took so long to diagnose because it’s a particularly cheeky disease which likes to hide just out of reach of anyone being able to see it with a probe or scope from any direction. It certainly wasn't for the doctors want of trying. It mimics the symptoms of everything from food poisoning to a nasty bout of inflammation, but it lingers around constantly, it can even share the same pathological features. In short, it’s really difficult to diagnose and I found I was referred on constantly. 

Sometimes it’s easier to say you have no pain and hide away rather than go through all of the tests and bowel-preps. I took a break for a few years denying I had a problem, but eventually I had to man up and go back to my GP when I thought I was about to curl up my toes and my resting pulse was 120. Oh boy do you need to learn the art of patience when lots of doctors are trying to figure out what’s wrong.

I’m not angry it took so long because once I got a diagnosis I started to get the right treatment and my flares became less frequent than they used to be. I had years of frustration in between, but I think I only got angry once when I discovered one doctor thought laxative abuse was the culprit. I see why they needed to rule it out, but totally not helpful when you’re mid-flare and in pain. 

I go in and out of remission a lot. When I am in remission life is good, but when flares come along to remind me that I’m a human with Crohn's, not so good. 

I can go from being just really tired, to comatose exhausted in 0-60 seconds. And I can go from not going to the toilet at all for three days to going thirty times a day, just like an unexpected plot twist in a really bad film.

The tiredness is always there as a reminder even when you’re not going through a flare, and when you’re exhausted it can be really hard to do normal things like go out for a meal or engage in the simple things like even answering text messages. You finally get to sleep and suddenly you hear ping because you forgot in all the chaos and drug induced confusion to put your phone on silent.

Linda once messaged me at 3am, much to the disgust of my sleeping wife who woke up and asked who on earth is Linda. I'd never actually met Linda, but she somehow knew I had Crohn's Disease, though I don’t keep it a secret, and she clearly wanted to help by selling me a 12-month subscription for a monthly bottle of Aloe Vera delivered direct to my door. 

Now with all due respect Linda, if you can convince the British Medical Journal, The Royal College of Surgeons, FDA, NHS, and a hundred thousand gastro doctors and some independent scientists that Aloe Vera is suddenly a cure for Crohn's then count me in, I'll give it another go, but I'll tell you what Linda,  Aloe Vera is a miracle when it comes to sunburn. It's really great for sunburn Linda. 

But Linda is persistent and I think we are forming a bond because she has now reached out to me by email a few times too. This time Linda wants to help me with my diet. Linda, where were you twenty years ago when the doctors couldn’t figure out what was going on and I was eating an unreasonable amount of salad?

This week Linda is selling a mineral which completely cures Crohn’s and a hundred or so other conditions but she still believes that a good dose of Aloe Vera will help things along too. 

Importantly she offers some advice and tells me that those spicy foods I’m eating are the cause and I should probably eat more pasta, along with the mineral and Aloe Vera which I can receive each month, direct to my door for a low monthly fee with free postage and packaging, but only for the limited time the offer is on. No pressure there then Linda.

With so much time and money invested in Nando’s and me having enough points on my loyalty card to grab a couple of free meals, (three courses each - wait until I up the steroid dose) this was disappointing news. I live for Peri-Peri butterfly chicken.

I have been eating at Nando’s regularly for a couple of years and it doesn’t seem to upset me at all unless I ask for stupidly hot. Plainish though is perfect with a side of garlic bread. My friend Tom has Crohn’s Disease too, he doesn’t get on at all with anything remotely spicy, you see certain foods affect people with Crohn’s differently, but Linda is being insistent.

You should eat pasta, and you only need a small portion. Really Linda? Again I beg to differ love because I’m currently sporting a balloon sized head from the steroids. In fact it is so big I could probably turn up at a Thanksgiving Day parade and people would think I’m wearing a costume. 

Trust me Linda, my steroids can get through a whole heap of anything you put in front of me. Small portions are out of the window when I’m taking these little beauties, and the other problem you see for me, is that pasta triggers a flare so I’m afraid however much of it I eat, it will make the situation diar-rhoeal.

So as I sit on the toilet for the fourth time in the past hour, I send Linda a courteous email to say thanks for caring and reaching out, but the oral chemotherapy tablets I’m taking right now seem to be working well enough, but I would happily not take them if I could get away with it, or would I need to no longer try out nearly every alternative medicine too. Please do come back to me if you think my dedicated and caring team of IBD support nurses and respected consultant surgeons have missed something because I would absolutely love to be completely cured. Did I mention there is currently no cure for IBD?

Some people might find these these types of things provide some relief, I tried it by the gallon and even on the rocks, but we're all very different and what works for someone else, might not work for me. But it's the misbelief that there's a miracle cure and the targeting of people who are suffering that I find mildly to profoundly irksome. I've even started taking pro-biotics, but there's no clear research on whether or not they'll help, they're certainly not a cure though. 

The Toilet…

Toilets are a bit of an issue. Actually toilets themselves aren’t the issue, I love the things and have become quite the expert in different flushing mechanisms over the years, but accessing a toilet can be a bit of a chore. 

It’s a bit like playing Russian roulette, in short you never want to over trust the back draft. If you pass wind or you get a weird gurgling noise, there’s no way of telling just how long you have before your insides want to see the light of day. 

Sometimes I have to skip the queue and run into the disabled toilet. Now here’s the thing, ask someone with Crohn’s how fast they can get to a toilet and the answer will be somewhere in the region of slightly quicker than Hussein Bolt running the hundred meters. 

If you don’t run, the rest of the queue will get a nasty surprise. This is exactly the moment that you get the look, or the abuse, or at the very least a stern talking to. How dare you look so well and jump the queue, you know people who are disabled need that toilet more than you do right?

Perhaps it’s a combination of the potent cytotoxic medication that makes me look so well, and that I managed to lose 5lbs in the past week because I couldn’t keep anything down, not even a cheeky butterfly chicken breast. 

But this week is still way better than last week when I managed to lose 11lb. Who knows, next week the weight might all be back on and then some, or it might not, but losing control of my bowel in public ain’t going to make anyone standing here very happy dear, and buying the people in the queue a bunch of flowers as an apology just ain’t going to cut it.

It’s at this very moment you feel as if you have to defend your right to have Crohn’s Disease. The disease you hate so much but still feel the need to defend and explain to everyone in public, and then you realise that no one has a clue what you’re talking about anyway.

"Oh my friend has the other version of that", with me replying "oh you mean Ulcerative Colitis right"?  

“No IBS, it's like IBD but with an S and that means it's serious". Yes IBS is painful, horrendously painful even, and I wouldn't wish IBS on anyone, but IBS ain't even close to being in the same ball park as IBD. 

Not that I'm wanting to one up your friend here, but there’s a distinct difference between Irritable and Inflammation, and Syndrome and Disease, the only commonality is the word bowel. 

IBS is less serious, it means your bowel doesn’t function as well as it should and is way more common than people think. It can still be debilitating, but it’s not as debilitating as IBD. Again, not trying to one up anyone here, but I’d take a dose of IBS instead of IBD any day of the week if I actually had a choice and had to choose. 

IBD is a different beast altogether. IBD is an autoimmune disease where your body’s immune system decides to attack healthy cells which then causes inflammation. As a bonus you can also get things like joint pain, weight loss, eye problems, bleeding, mild pain, and excruciating pain, and please Dear Lord take me now pain, for absolutely no extra charge, or if you’re lucky you might not get all of the above at all. Different people, different symptoms. Told you it was tricky. 

Special Ops

There’s an upside to all of this though, I can now plan going out with military precision, in fact now I call going out anywhere a mission. I pack my special forces themed backpack with essentials like clean underwear, multiple smelly sprays, cleaning tissues, and medication, a couple of plastic bags, and a phone charger just in case my phone dies and I need someone to come and pick me up, and also because I’m addicted to that Facebook thing and that match three game with the constant in-app mortgages. 

If I could send a commando patrol out ahead of me to get a look at the forward operating base and report back I would, because I need to know where the toilets are and what’s going to be on the menu. I’m a chef’s worst nightmare because I always have to ask if I can have this without that and it makes me look like I have that other disease called fussy eater. I can't quite recall whether there is an 'itis' at the end of it. 

Life with Crohn’s can be a non-stop series of poops and whoops. One minute you can be fine and dandy, the next minute you can be curled up in a ball trying to protect yourself from the kicks, but the kicks are coming from the inside.  

Over the years I have come to the conclusion that the only thing I can control with my Crohn’s is my outlook about Crohn’s. I don’t currently have a bag, an ostomy, or colostomy, but I know that if a cure isn’t found it’s a real possibility if the medications stop working in the future. Some have stopped in the past, others have made me really ill and put me in the hospital. It's all a bit of trial and error. 

In a way I have become way healthier since being diagnosed. I no longer eat some of the foods I used to eat, I exercise much more, and my entire outlook is much more positive than it was for all of those years that I didn’t know what was going on. 

Life can still be testing when I’m going through a flare but I have the love and support of my family and friends, and access to an exceptional team of IBD support staff who I can contact 24-hours a day if I need too. 

I’ve been through the lows, even to the point of feeling depressed. I’ve sat crying in agony, felt isolation, and been frustrated that no one seemed to be able to figure out what it was that was causing the symptoms to the point where I wasn't even believing myself. 

I’ve had to explain in public to train staff why I need to sit on a seat close to a toilet and felt the humiliation of them telling me why I don’t need that particular seat for twenty-minutes straight, because clearly I don't look ill.

I’ve been questioned why I am using a disabled toilet while I’m sat on it behind a closed door and feeling like the world is about to end. This was the exact moment when I discovered I seemed to have developed middle finger syndrome where it raises spontaneously. Honestly I have no control of this particular bodily function anymore, in fact I have more control over my bowels.

But I have seen the highs as well. I have met some incredibly inspiring people with IBD and whose symptoms are far worse than mine. I have met some extremely dedicated people and come across some fantastic organisations who strive every day to find a cure or just make life a little better for IBD patients, and without having Crohn’s I might never have met them.

The doctors and nurses who work tirelessly to support you through the bad times, and who don’t mind that their shift finished over two hours ago.  The IBD support nurse who listens to you drivel on about how rubbish you feel, and always manages to smile and make the world feel right again, those are the kinds of people who restore your faith in human nature. 

I recognise that not everyone is aware of IBD, and whilst I might look perfectly fine when I stand in front of you, it’s often because I have learned how to fake being well. Inside I’m quietly wondering where the loo is or wishing I could sit down, or worrying if I have enough medication with me to last until I get home. 

I’m not angry that I have the disease, and for me it is my art and a sense of humour, friends and family, and an appreciation that I now know what it is, that keeps me going. 

It would be easy to wave a white flag when things get tough, it’s tempting to give in to it, but you can’t. That’s the other thing about IBD, those with the condition are the strongest people I know. Those people, the doctors, and the nurses, they're heroes without capes. 

How you can help

IBD is a non-visible from the outside hidden illness. Crohn’s Disease and Ulcerative Colitis are the two main forms of Inflammatory Bowel Disease, and definitely not the same as Irritable Bowel Syndrome. 

The symptoms vary but generally they take on the form of severe abdominal pain, relentless diarrhoea often with bleeding, exhaustion, slowed growth in children, and inflammation of the eyes, skin, liver, and joints. Not everyone gets every symptom, and some people don’t realise they are living with IBD at all or haven’t been diagnosed with IBD yet.

In the UK alone, more than 300,000 people have IBD, with more than half of them being diagnosed when young.

You can’t catch IBD but the cause isn’t fully understood. It is thought to involve a combination of genetics and environmental triggers but currently there is no cure.

I lived with this for nineteen-years before being diagnosed, but I had to be persistent to get to the bottom (promise that’s the last pun) of it. As I said earlier, I went through a series of being diagnosed with pretty much everything other than Crohn’s, and I know there are people out there who are going through the same thing. 

I was lucky that I got referred to a specialist who then referred me to another specialist who then referred me to another specialist and between them they carried out so many tests because they had seen this so many times before and recognised it for what it is. 

The technology to diagnose IBD is getting better but it’s still not perfect, but between these three doctors they completely restored my faith and I’m on the appropriate treatment for now and avoiding surgery. If you can’t cure it, you have to at least manage it.

So if you are going through this I can tell you that there is a light although it might not feel like there is. There is hope even in the darkest days, but the light we all want to see is a way to cure it.

Organisations like Crohn’s and Colitis UK are fighting the battle against Crohn’s Disease, Ulcerative Colitis, and other forms of Inflammatory Bowel Disease, but they can’t do that without your help.

You can do anything from fundraising to volunteering, campaigning and raising awareness, to donating or becoming a member.

£5 per month will help 60 patients be better informed about their condition, £20 will help a person in distress through the helpline, £145.01 funds an entire days research that will improve lives today and that one day could deliver a cure. 

If you are a business you could make Crohn’s and Colitis UK your chosen supported charity, or raise awareness of IBD and other hidden illnesses by installing better signage on accessible toilet doors, or simply by talking more openly about it. Whatever way you can help as an individual or a business would be welcome. You can find out more from these links below: 

You can visit CrohnsandColitis here. 

You can get involved here https://www.crohnsandcolitis.org.uk/get-involved 

If you are a corporate business you can support the work of Crohn's and Colitis UK here: https://www.crohnsandcolitis.org.uk/get-involved/corporate-partners  

You can make a donation here: https://www.crohnsandcolitis.org.uk/get-involved/donate

You can find out more about IBD here: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease

You can become a member here: https://www.crohnsandcolitis.org.uk/get-involved/become-a-member

You can visit the Crohn's and Colitis Companion here: https://companion.crohnsandcolitis.org.uk/

Hopefully someone might have found this post useful and I hope a little entertaining. It's not that this disease is funny, far from it, but us Crohnie's seem to develop a dark sense of humour at times and occasionally it's better to laugh than cry, not always though. This has been the hardest post I have ever written, but I think it’s really important to educate and inform and just because the illness is hidden, those people who have it are not.

The following image is copyright Crohn's and Colitis UK:

Use of Crohn's and Colitis UK and my support of this wonderful organisation does not indicate any endorsement from Crohn's and Colitis UK. I simply believe in them as an organisation and this is my little way of bringing their work to everyone's attention.