This is an article I wrote for World IBD Day, which is the 19th May. Today actually.
I thought long and hard about writing this because I freaked out that by posting it to Facebook or Twitter as seems to be the way these days, I would voluntarily be giving away far too much about myself. Why would I want to do that about this of all things? Who would care and besides it’s so not cool and so not interesting. No, I shouldn’t write it. Then I slept on it and remembered the words that used to spur me on when I was younger, ‘got guts’. I bet other people probably wouldn’t care, there’s no guarantee anyone will even read it, I’m just being neurotic and stupid and if after this many years I can’t even share it with people I know how is that going to help anyone? Where the hell are my guts? So here goes. If you really are adverse to bodily functions, particularly bodily functions gone wrong then I wouldn’t advise reading on. But if not, then please do read if you have the time. Only if you like of course. There’s no pressure.
Inflammatory Bowel Disease, or ‘IBD’ as it’s usually known is an umbrella term for two illnesses: Crohn’s Disease and Ulcerative Colitis. These are thought to be auto-immune diseases where the body gets its wires crossed and starts to attack itself. Arthritis is another autoimmune disease, there are a surprising amount of them. In IBD, it is the digestive tract and intestines that get the short straw. The conditions are different but ultimately cause inflammation and ulceration in the lining of the bowel, therefore have similar symptoms. In Crohn’s anywhere from the mouth to the anus can be affected and in UC inflammation is confined to the large bowel, though often involves the entire organ rather than skipping areas like in Crohn’s. This inflammation causes an array of unpleasant symptoms. The most common are diarrhoea with or without blood/mucus/pus; PAIN; nausea; vomiting; loss of appetite; loss of weight; anaemia; dehydration; problems with joints; problems with the eyes; problems with the skin; liver problems; bowel perforation; bowel obstruction; FATIGUE. I highlighted the fatigue there because I think it’s one of the less appreciated symptoms. Just because you can’t see it on an endoscopy camera, doesn’t mean it isn’t there. When I say diarrhoea, I mean diarrhoea. In a severe flare up of illness sometimes 25 times a day or more isn’t uncommon. Some people become incontinent and some are not able to eat so have to be fed intravenously. There is often a genetic link as there was for me, though sometimes it just appears out of the blue and they don’t seem to really know what triggers it. Yet. It can predispose you to developing bowel cancer and lastly, though it is possible to suffer from Irritable Bowel Syndrome and Inflammatory Bowel Disease they are not the same thing.
These are life long conditions that often show up in adolescence but occasionally begin in childhood. My illness was vague for a few years, from about the age of 13-14. There was something up, we just didn’t know what. It started to manifest itself more typically when I was about 16, and I was diagnosed officially with UC at 17. Not that getting there was easy, but that’s a day for a blog about doctor bashing which this is not.
There are treatments for IBD, and sometimes they are very good. I tried things I had to swallow and things I had to administer, like enemas. I always thought it was amusing that it was called administering, as if it was a tremendous royal operation. In reality it was usually like something out of a farce. Not enough hands to read instructions whilst simultaneously trying to get the thing in the right place, trying to stay still and then trying to keep the bloody stuff in long enough for it to do its job. And all essentially for nothing, because they didn’t work. When those initial treatments fail, steroids in varying strengths (oral or IV) depending on the severity of the inflammation are the next step. It wasn’t long before I got my first dose of those innocuous little white tablets that look so innocent but have the unique power to turn you into Michelin woman (or man!) in only two weeks. Unsurprisingly they don’t use that as a selling point. The thing I really hated about them was that for all the miserable side effects, it always seemed very unjust that they actually really worked. Well, they worked for a while anyway. The word surgery starting coming up with alarming regularity and to cut an extremely long story short at Christmas 2005 when I was 19 I had my large bowel removed.
Surgery for IBD is common though not always an inevitability. The standard operation for severe UC is removal of offending colon and the fashioning of an ileostomy (il-ee-ost-oh-me). Surgery for UC is considered curative, though I have always struggled with this idea because to me a cure is something that removes the disease and leaves you perfectly as you were before. Though it does mean you are often able to become drug free which is beyond brilliant, you aren’t and will never be anatomically the same.
I suppose if anything this is the part I felt most self conscious about sharing. Some people wouldn’t wish to share it, which is fine. However by not sharing it, I don’t feel like there would be any point to this. Not everybody with IBD ends up with an ileostomy, but for nearly all the sufferers of UC I’ve ever been in contact with, it’s been the eventuality whether temporary or permanent. It’s not as alarming as it sounds, though if you’re Googling it for the first time it is the scariest thing in the world. The operation is major, but the idea is quite simple. After removing the colon, they take the end of your small intestine (which you have an awful lot of so you can spare some) and bring it to the outside of your abdominal wall and stitch it into place like a little hose pipe opening. Over this opening you have to wear a pouch. I think calling it a pouch is just an attempt by nurses to cute-ify the whole thing, but the kangaroo jokes never get boring so I suppose it is helpful. A lot of ileostomies are done on a temporary basis, often to let remaining bowel heal or in UC to give the patient some time to recover before considering a surgery called an internal pouch. I recently made the decision not to have an internal pouch (which necessitated another, though hopefully final, major abdominal surgery) so for the rest of my life I will be permanently attached to the reminder that my colon sort of gave up on me.
It was a pretty mega ordeal because it went wrong but five years on and with the things that went wrong hopefully fixed, I’m able to look back and see that having that operation turned my life around. It gave me freedom, it allowed me some normality and I will never forget that. It’s just, it was and still is sometimes a very isolating experience. When I was first diagnosed, I didn’t know anyone else who had it. None of my friends had it and my parents didn’t have it. I couldn’t find out much out about it beyond those pathetic leaflets they give you in hospital and felt pretty much like I must be the only 17 year old in the world afflicted with this horrible disease. That is, until I remembered I could go online. Why hadn’t I thought of it before? One particular website, CrohnsZone was an excellent resource and it didn’t take long before I found Anna, who was my age and happened to only live half an hour away from me. I can’t even begin to tell you how incredible it was to know that there was even just one other person who knew what it was like.
IBD is barely ever mentioned in the media, yet it affects 1 in 250 people in the UK. It’s not a disease that’s going to go away any time soon but it’s still rarely discussed. I can count on one hand the amount of times I’ve seen anything on television about it in the last five years. The problem doesn’t lie with IBD though, bowels in general aren’t talked about in public. Advertisements for diarrhoea or constipation drugs are always a) awful and b) embarrassingly euphemistic. Everyone knows about bowels, yet we still can’t quite find a way to discuss it in public without squirming or struggling to find words to cover up what we actually want to say but can’t quite bring ourselves to. Everybody poos sometimes (the lesser known REM classic) but after however many years of consideration I’ve given to my intestines even I still find it difficult to discuss, even to my own surgeon. You’d have thought you might build up immunity to embarrassment but it turns out you don’t really.
Every time I have wanted to scream how unfair it is, I’ve simultaneously wanted to keep quiet about it. I’ve wanted to hide it away, for fear of… well I’m not really sure exactly but I suppose I haven’t wanted to be the one with the problem. It’s much easier to tell someone, your boss, your friend or whoever that you have a headache than it is to tell them that you will explode and it will almost certainly resemble a scene from Carrie if you don’t get to a toilet right now. There’s never really been an ideal way to bring it up in conversation, so it’s always been easier to keep quiet about it. I don’t think my experience is uncommon, due to the nature of symptoms these can become largely private illnesses. I was once fairly mortified when a teacher at my school, who had been informed about my “condition” announced to the class that it would be fine for me to go on the trip to see Our Country’s Good because they had FACILITIES there. I’m sure no one else was paying the slightest bit of attention but I remember pretty much wanting to die, right there on my plastic chair in Room 8.
As a young person and as a young woman it was difficult, very difficult sometimes to not feel like I was being really fucking let down by the universe for giving me a giant colorectal headache. It still is actually. I get depressed sometimes when I see people wearing bikinis without a care in the world. I have a degree in photography yet I’m still naive enough to believe that people I want to look like in magazines haven’t been retouched to oblivion, they do just look that perfect with their bronzed, toned and ileostomy free tummies. I don’t really like the fact I have scars and will never wear a bikini again, unless I were fortunate enough to one day own my own beach or something. But after a while I’m able to remind myself that wearing a bikini isn’t really that important, scars are symbols of survival (not trophies, as someone once unhelpfully suggested) and who actually has a toned tummy? The universe had nothing to do with this, I wasn’t being punished for anything, it’s just what happened and ultimately what’s best is to accept that this is the way it is and get on with it.
It’s easier said than done I know, and for some people right now in the throes of severe IBD just getting on with it is probably the last thing on their mind, but it’s helped me to see that this is just one very small aspect of who we are. It doesn’t define us. I know it’s a tremendous cliché but it does and can make you stronger. If I were to give one piece of advice to a young, newly diagnosed person it would be don’t worry about getting angry about it sometimes, but remember that it won’t be this bad forever. Bowel disease doesn’t make you unattractive or any less of a person. It gives you guts (and a sixth sense when it comes to finding toilets, which I think is an extremely agreeable compromise).
So, I hope that maybe this has gone some way to lifting the lid on this illness just a little bit. I don’t imagine for a minute that one day we’ll live in some sort of Faecal Rainbow World where we’re encouraged to worship our excrement (though there is a Patron Saint of Bowels, so maybe we’re half way there) because that would be weird. I just think that maybe diseases like IBD deserve a little bit more attention than they currently get. Bowel cancer is one of the commonest cancers in the world, yet the posters at my local hospital all feature a cartoon of an embarrassed red-faced little man peeking out from behind a toilet door. Shame on him for having a problem. It’s only embarrassing if we continue to make it that way.
Finally the other reason I wanted to write this, and thankfully you are pretty much at the end now, is that I also feel really blessed. Every time I find myself feeling upset, I think about my Great Auntie Eva who died because she was too embarrassed to go the doctor when she started bleeding. She’d had undiagnosed UC that turned cancerous and then she developed a blood clot (a rare complication of IBD) which killed her. I can’t help but feel relieved that I live in a world that can at least do something about these illnesses. However, if we could just manage to remove a little bit of the stigma attached to bowels it would go some way to giving intestinal disorders the spotlight for a while, with no humiliation attached.
For more information on Colitis and Crohn’s Disease please visit Crohn’s and Colitis UK.