This week is Crohn’s & Colitis Awareness Week. Although I am fairly open about my struggles and successes since being diagnosed with IBD, I still don’t believe there is enough awareness out there about these awful diseases. Some may think I’m exaggerating when I say they’re awful diseases. But imagine having just one ulcer on the inside of your mouth and how annoying that is. Now imagine having that all along the inside of an organ or two – bare in mind that your large bowel is around 5ft long and your small bowel is 20ft long… It truly is awful, and unfortunately there is no cure. But by raising awareness about them, we can break the poo taboo and maybe one day there will be a cure. You never know.
Each day I’m going to post about something different to do with IBD that others who do not have a diagnosis themselves, or know someone with IBD may not think about. Warning… This may be a bit of a long post so sorry in advance!
1ST DECEMBER – COPING MECHANISMS
I often get told that it’s not acceptable to joke about nearly dying, but for me it’s the only way to deal with what I’ve been through.
People find it weird that I’m almost so flippant about everything I’ve been through but from talking to others within the IBD community I’ve come to realise that it’s just my own way of coping with things. I’ll always try to laugh and make a joke about a bad situation because for me, even though I understand how serious things are, it makes them seem a little less scary in a way.
Recently I’ve found that I’m struggling more than ever to talk about how I really feel about having colitis. I can rattle off the facts to anyone about what IBD is, how I was diagnosed, the surgery I’ve been through and the complications and hospital admissions that have happened as a result. But truly talking about how I feel simply just makes me break down in tears, so I find ways to laugh and joke about it. For me, it’s the only way to get through each day because the alternative is crying all the time and realistically that’s not an option.
The other day was Sally’s birthday, my stomaversary. I got through the whole day without any tears which I was proud of myself for doing, and then I got home to find presents and a cake from my family. I got a colon cushion and they’d made me a cake. In that moment where I felt a mixture of emotions and I was crying and smiling and laughing. Strange to think I was laughing about the fact I was alive, but laughing makes things seem a little less real and scary.
2ND DECEMBER – CHOICES
When I was first diagnosed I wasn’t given a choice into my treatment, I was just told I was be attached to a drip and take these numerous medications or die. Then I was told the same when I was told I needed surgery.
I have since learned though that you always have a choice, and I did back then. I was given the choice of living or dying.
Something a little less morbid though is the choices I’ve made since. I’ve chosen not to use the enemas prescribed to me by the hospital, which yes, some may see as a stupid decision if it will relieve symptoms, but I’m coping with them. And unless you’ve had to self administer a foam, rectal enema, you cannot criticise my choice because you simply do not know what it is like, end of.
I have also chosen not to have any more surgery in the near future for the simple fact that I am not ready to make that decision. When I do make the decision, I want to know I’m ready to accept all the possible outcomes which include having a permanent bag and potentially (possibly) not being able to have children and right now, I can’t accept that. So I am staying away from the scalpel.
I have changed my diet, this one was half not by choice. I now eat a low fibre / low residue diet due to my ileostomy. However when I started to introduce new foods and try to build up my tolerance to fibre, I suffered terrible pains which were having me admitted to hospital every four weeks on average. After a summer of hospital admissions I decided enough was enough and I know stick to a strict “white diet.” It’s not fun, I’m bored, I hate food because I can’t eat what I want (still craving that chicken caesar salad!) but it’s keeping me out of hospital. I have now found though that I’m okay with hummus (despite the fibre content being considerably high) so I feel like chicken, pitta and hummus may become a new favourite meal of mine.
Another choice I’ve made is the type of bag I use. When I first woke up in hospital I had the type of bag I dreaded. I hadn’t done any research into having a bag, I was dashing to the toilet and sleeping too much to understand. But I had an image of these big beige bags, and sure enough that’s what I had. But since then I’ve switched and found another type of bag which I am far more comfortable with. I mean, I’m still not happy because I have a bag, but I’m slightly less unhappy. This week I have also ordered some samples of the new bags from a company called Salts. They’re completely opaque so won’t go see through if I get them wet, which is pretty much the only thing I dislike about the bags I use at the moment so I’m excited to receive my samples of them and try them out.
3RD DECEMBER – IT’S OKAY NOT TO BE OKAY
Besides the obvious of ulcers in your GI tract, IBD can cause so may other problems within your body and most of the time, because they’re going on, on the inside, people assume you’re okay. You should never judge a book by its cover, you never know what someone else is going through, mentally or physically just because they look “okay.”
For me personally, there are a number of things people can’t see that are going on.
- Ulcers in my rectum which can only be seen with a scope mean I pass a lot of blood and have the urges to go to the toilet with a few minutes notice, sometimes just about making it which is humiliating. Just the other night I nearly messed myself in McDonald’s at the end of a night out because I couldn’t get into the RADAR toilet, but one of the bouncers was kind enough to rush me upstairs so I could use the other toilets that were closed. It was humiliating and I sat on the toilet and just cried my eyes out. You’d never know from looking at me in this picture that I was trying to ignore the fact my brain was telling me I needed to go to the toilet as soon as possible.
- Mental health. Needless to say that having to explain to a bouncer that you need the toilet or you’re going to mess yourself doesn’t really help your mental health and coming to terms with accepting your bag. But then neither does people telling you that you clearly don’t suffer from anxiety or depression because I manage to get up, do my make up, and go to work. I don’t let people see me on my bad days. Sometimes I don’t get out of bed for days on end, sometimes even showering is too much effort. Never assume someone is okay just because they’ve left the house.
- I suffer from aching joints, it’s made worse by the cold and just overdoing things in general. I have good days and bad days. My bad days tend to be my days off. My days off are Wednesday’s and Sunday’s so I never work more than three days in a row, and I don’t have to worry about doing six or seven in a row. Sometimes, just three days in a row is enough for me, and if it’s cold or I’ve been on the drive thru side of things in my store, then when I get home my knees are killing me and sometimes they seize up.
- Fatigue is a frequent visitor in my life. Even though I’ve done everything I can to avoid having those days where I stay in bed because I physically can’t move, those days do still happen and they’re beyond my control. I eat what I can to nourish my body as much as possible, I take naps between work and going out in the evening so I don’t burn out my energy too much and I make sure I get plenty of sleep.
- It’s probably not as much as it looks, but I lose blood daily from my rectum still being diseased. Although losing that amount of blood daily isn’t enough to make me extremely unwell, losing blood on a daily basis is not good. It’s also not good as it means I have active disease still inside me which in turn increases my chances of getting rectal cancer, something which my consultant and I need to keep an eye on over the years.
- The main job of your colon is to absorb water and salt, so I now need to increase my fluid and salt intake on a daily basis to make sure I don’t become dehydrated. I put salt on basically everything I eat, even salted crisps I add more salt to. I also have a stock of isotonic sports drinks at home as I need the extra electrolytes. Over the years, (I’ve been told) my small bowel will gradually start to absorb water more and salt as my body adapts to not having a colon, but for now I have to do everything possible to avoid dehydration. Dehydration is a serious risk for anyone with an ostomy who doesn’t drink enough fluids and worse case scenario it can leave you hospitalised with potential damage to your liver and kidneys. I’ve been admitted once this last year due to dehydration when I got a stomach bug, it wasn’t pleasant so I am doing my best to avoid it at all costs!
- Something that no one can see is the adhesions on my small bowel which have had me admitted to hospital three or four times since the start of summer. The reason I now stick to a “white” diet is because I have adhesions on my bowel, which is also known as scar tissue. This means that part of my small bowel has accidentally fused itself together in the healing process after surgery, essentially looking like the picture on the right, which has most likely caused a kink in a particular place in my small bowel making it hard for food to pass through. White foods are generally lower in fibre and therefore easier to digest so by sticking to eating those foods, it keeps me out of hospital. My parents have had to call an ambulance to my place of work before as I’ve been unable to stand due to my bowel spasming so badly. Collapsing on on the floor in pain is what people can see on the outside, but they do not see the cramps that I get three hours after everything I eat, even if it is white.
- Along with having my colon removed, I’ve also lost part of my small bowel from where it joined my colon and where my stoma is formed. The role of your ileum (final section of your small bowel) is vitamin intake so that along with the blood loss means I am at higher chance of becoming anaemic and deficient in other vitamins and minerals which in turn contributes to fatigue. It’s all a vicious cycle really…
- Lastly but not least is side effects from medication and being as critically ill as I was. Even though it’s been a year since my surgery, I am still living with the side effects of the medications that were used to save my life. steroids make your face swell, however I think my podgy cheeks are now due to my high carb diet rather than the pred! However a side effect that is due to medication is hair loss. My hair started to fall out in February this year and although it is finally starting to grow back, it is going to be a long time before it returns to the thickness it used to be.
All of these combined have had a general impact on my life but I’ve learnt to listen to my body and know that it’s okay not to be okay and if I can’t get out of bed sometimes, then that’s okay and not to beat myself up about it.