Need to know
For #TeamEEAST Last updated: 18 May 2024 at 10:35
I look like you, there is nothing about me visually that would make me stand out.
But I am modified.
My body gave in to the fight against Crohn’s disease 18 months ago and I had to have emergency surgery to remove my entire large bowel. As a result, I now have a stoma. I don't use my rectal passage at all, and everything comes out from an intestinal opening by my stomach button.
There are two kinds of stoma; a colostomy comes from the end of the bowel and usually has one solid movement daily similar to how you go to the toilet, then once passed the bag is changed and that's that.
The other kind is what I have, an ileostomy. An ileostomy comes from within the bowel and has a constant stream of output which is usually waterier than a colostomy output. This bag is emptied from a section at the bottom of the bag approx 5-6 times a day and changed every other day.
Moving forward I will refer to my stoma as Clarita, that is the name my husband and I gave her when she was first formed, and it helps patients create a bond with what is a huge adjustment. (As a side note we named her Clarita as we were watching a Netflix program called The Santa Clarita Diet where Drew Barrymore turns into a zombie after eating some bad clams... it was a big life change for her, and this was a big life change for me!).
I don’t want this piece to come across negatively as I am so incredibly grateful for my stoma - it saved my life and anything beats being dead! Saying that, there are obviously some pros and cons to life with a stoma.
The most frustrating thing about Clarita is having to empty her every 3hrs overnight, it reminds me of when my sons were new-born and fed so frequently! I have adjusted somewhat to the disturbed sleep pattern but still get caught out if I'm really tired or after having a few drinks!
I haven't really had to change my diet to accommodate her, I just have to be very aware of what I am eating and know what will happen to my output. For example, if I have greasy food my output will be watery, so I'll need to bulk up on loperamide to counteract it. Whereas if I go heavy on the mashed potato, white bread and pasta it can become quite solid so a coffee or fizzy drink can usually sort that out nicely. It is much more common for me to have watery output as my diet consists of coffee and chocolate!
People with a stoma usually need more surgery within 10 years of the initial formation, often due to a hernia. When you think about it, we have a hole in our abdominal wall which the intestine is pulled out of so hernia's can easily happen. Unfortunately, when your toddler needs mummy cuddles or refuses to move there is no option but to pick them up, so I got a hernia very early on!
The last thing which I am going to tell you is what happened when I tried to diet! Now I have always had an unhealthy relationship with fibre from my years with Crohn’s in the fact that I could eat a Big Mac and be absolutely fine, but I was hospitalised after 4 days of Slimming World. Since having Clarita the situation is much worse.
I am currently awaiting further surgery to remove my rectal passage and stump as I have severe inflammation in that area, part of managing my symptoms is having copious amounts of both oral and enema steroids which cause weight gain. I was desperate to lose some of the steroid weight and tried to replace snacking with carrot sticks, celery, and vegetables. BIG mistake! After two days I was back in A&E with a stoma blockage! A day on IV fluids and lots of morphine and I managed to pass the obstruction naturally thankfully avoiding surgical intervention. Lesson learnt and I'm back on the crisps.
Clarita gave me my life back; I was diagnosed with Crohn’s after the pregnancy with my youngest son who is now 4. Within less than 2 years it completely destroyed my life in so many ways, and removing my large bowel gave me a second chance.
I am now able to enjoy my family and be the mum I couldn't before. I would have never been able to work here prior to the surgery - the bathroom is too far away! I am incredibly proud of my body and all I have overcome, I consider myself resilient and optimistic, something you have to be with an auto-immune disease.
I'd like to finish with my favourite part of stoma life... I can’t fart! And for that reason, I am definitely the best person to sit with at work!
Published 20th December 2021