Let’s Be OstoMATES – Mary’s Story

lets be ostomates mary

I kinda wish I had published this one sooner because well it had me in stitches, I just love the way Mary writes to be perfectly honest! Let alone the way she describes being 18 is pretty much how i dealt with my late teens but I guess when you have been sick since you were a kid you just get on with it. But here is Mary’s ostomy journey.

Hi, my name is Mary and I have Crohn’s Disease and an Ileostomy.

lets be ostoMATES Mary's story

My symptoms grew and changed over several years. It started with mouth ulcers at the age of 8 – I’d get them so badly I couldn’t eat or drink and they extended out of my mouth, causing the corners of my mouth to crack, split, bleed and scab. They stayed until I was about 15 years old, flaring up and down with stress, until they were finally diagnosed as part of the Crohn’s and treated with steroids.

I started displaying other symptoms at around the age of 12 these were predominantly:

  •  A grinding, constant ache in my lower abdomen which sometimes would sharpen until I was throwing up from the pain. I don’t mean the occasional flutter and feeling a bit nauseous. It was constant, 24 hours a day aching pressure, spiking sharply worse in the mornings and evenings until I was hugging the toilet in tears retching. After a while I pretty much got used to it.
  •  A combination of constant diarrhoea and constipation. Like, not having a normal poo for five years. Sadly as I then had the op, it means technically I’ve not had a normal poo in fifteen years. Weird.
  •  Bloody poo. Sometimes not much, sometimes it looked like someone had committed murder most foul (ha-ha) down there.

Stupidly, I was convinced these symptoms were nothing to worry about and would go away by themselves if I didn’t think about it. I’m just going to reiterate for anyone reading that THIS IS NOT TRUE; IT’S A STUPID WAY OF THINKING SO GO TO THE DOCTOR!

So with all that I was losing a fair bit of blood and started collapsing at school with anaemia and falling asleep in lessons because I was so fatigued. So steroids happened, which made me feel a heck of a lot better, but also made me so hungry I could eat five large meals in one day and still be starving. So I piled on the weight, which made me even more depressed, which made the Crohn’s worse, and the steroids were increased. Next step was treatments so I wouldn’t have to be on steroids/suffering for the rest of my life.

Things I tried, in combination with Prednisolone steroids (in no particular order):

  •  Thalidomide
  •  6MP (a form of chemo)
  •  Azathioprine
  •  Infliximab (also called Remicade)
  •  Methotrexate
  •  5-ASA (Mesalamine, a form of aspirin)
  •  Metronidazole (antibiotics)
  •  Drinking pure Aloe Vera (gross)
  • Cutting dairy/wheat/onions/cinnamon/E-numbers out of my diet
  •  Meditation
  •  Crystal Healing (I was going through my hippie phase)
  •  Kinesiology (like meditation but someone “aligns your energies”)
  • Liquid diets

These are mostly a lot of very nasty drugs that are nevertheless very effective for a lot of people who suffer with Crohn’s/IBD, but, as you can probably guess, none of them made any lasting improvement and I had surgery instead.
I had my ileostomy done in late 2007 at the tender age of eighteen, when the Crohn’s was at its most bloody difficult. Instead of going out getting trashed on Apple Sourz and warm cans of Stella, I spent most of that year… Well, actually, I spent most of it getting trashed on Apple Sourz and warm cans of Stella (because sod you Crohn’s Disease, I’mma live my life etc), learning to cope with a combined crippling hangover and uncontrollable bloody diarrhoea in a fairly disgusting portaloo in a field, and just how far I can run with my arse cheeks clenched.

After a particularly hectic summer working as a barmaid in my local, drinking anything sticky in a shot glass within five yards, and complaining about hangovers in my local, I went for a check-in with my doctor as the steroids were making me slowly inflate to the size of a Fiat Punto and the latest meds weren’t helping in the slightest (NB before I get inundated with “You shouldn’t drink with Crohn’s Disease/irresponsible/your own fault” messages, I was eighteen and felt like rubbish 98% of the time, so sod it).
He told me the only option left was to hack the offending gut out and try and salvage the rest into an ileostomy. Which scared the absolute crap out of me (pun intended).

For those who don’t know, an ileostomy is made by removing the large intestine (and in my case, a fair chunk of the small) and passing the end of whatever is left out through the abdomen an inch or so, and sticking a plastic bag over the top to collect the product thereof. Sometimes these are reversible, but mine wasn’t, so I also had my rectum removed and my bum sewn up, and since then, it’s all been downhill. Well, mostly.

And so, I present my own list of 12 Things I Have Learned With An Ostomy:

  1.  All my clothes are now black or dark coloured. This isn’t because I’m a super cool hardcore Goth (well, maybe slightly), but because the poo stains shows up less if my bag leaks. Also, big pants are the best thing for keeping it flat.
  2. Bag leaks are the most bloody annoying thing in the world. Out with friends at an awesome party wearing something gorgeous and expensive? BAM IT’S MEGAPOO EXPLOSION TIME. With the right combination of products (there are thousands of different types of bags and seals and god knows what out there) and the realization that nuts and seeds don’t break down and will literally shred the plastic (and your skin), and if you drink acidic stuff like cider then you’re asking for trouble, leaks can be hugely reduced so the worry is less. And the less stress, the less complications.
  3. Handbags are always going to be huge. No Fendi baguettes for me, I’ve got to get at least six spare bags/seals/trash bags, body spray, adhesive remover, and maybe even a spare t-shirt in there. But hey, you can hide a bottle of whiskey at the bottom and cover it with your crap bags and be pretty sure that no security at a club is going to rummage in there.
  4. You will get asked every question it’s possible to ask about it, and I mean every question. Plus your friends will get so used to it they’ll ask you questions about whether their poo habits are normal.
  5. No anal/pretending to like anal/arguments about anal. Sorry mate, I’m smooth like Barbie.
  6. Your farts inflate your bag like a balloon, which can supply endless jokes about buoyancy aids and Disney Pixar’s ‘UP’ – the sequel.
  7. Knowing you’re taking a dump, in public, 99% of the time if you’ve got an ileostomy, is bloody hilarious.
  8. People that get weirded out by it aren’t worth your time. What, you’re freaked out by a flat, opaque plastic bag, but expect me to be fine with the fact you pick your toenails in bed? I don’t think so.
  9. You become an expert at changing sheets super fast. Leaks in bed happen but provide ample opportunity for jokes with other occupants e.g. “Congratulations, there are people out there that pay to be crapped on and you got it for free!” Make sure you buy a mattress protector and dark bedding.
  10. Crap puns are the best puns.
  11. Drugs are bad! They can really, really affect your guts – having uncontrollable leaking green diarrhoea is a pretty quick come-down from whatever potent pseudo-MDMA you bought in the toilets off Gazza.
  12. You are the most important person in your life. Do what makes you happy. You may have a bag of poo stuck to you for the rest of your life, but it shouldn’t stop you doing exactly what you want to do. Shave your head, go and live in Magaluf, swim the English Channel, tattoo your eyeballs, get so many sunbeds you look like a handbag, work in PR… as long as you’re looking after yourself, the rest of the world can go hang.