Colostomy vs Ileostomy: The People Behind Them

A stoma is an artificial opening surgically formed to pass waste from the body.

In the pelvic region, the three main types of stoma are:

• An ileostomy
• A colostomy
• A urostomy

The functions of an ileostomy and colostomy are to pass poop whereas a urostomy passes urine.

I have an ileostomy

I have a permanent ileostomy due to severe Crohn’s Disease & a large, benign tumour. It’s nearly been 10 years since my little lifesaver came to be!

An ileostomy is a stoma created from the small intestine via the abdomen to divert waste out the body. An ileostomy can also be temporary or permanent. The two main types are loop & end ileostomy.

A loop ileostomy is where a loop of the small intestine is brought out & cut before being sutured down, whereas an end ileostomy is where the end of the small intestine is brought out to form a stoma. Sometimes, the colon, rectum and anus are also removed which make an end ileostomy permanent. This is what I had done in 2011 when I was 19.

A colostomy

A colostomy is a stoma created from the large intestine (colon) via the abdomen to divert waste out of the body and can be temporary or permanent.

The two main types are loop and end colostomy. A loop colostomy is where a loop of the colon is brought out and opened up to form a stoma whereas an end ileostomy is where one end of the colon is brought out to form a stoma.

An end colostomy is usually permanent. Temporary colostomies can sometimes be formed in emergency surgery.

A colostomy is usually on the left hand side of the body (as you look at someone) and an ileostomy is usually on the right, although this can differ.

The people behind the stomas

I’ve done a bit of reaching out on Instagram for this post & wanted to bring to you a brief bit about each of my lovely contributors. Thank you so much to those of you who came forward and without further ado, let’s hear from them. Some have had colostomy surgery and others have had ileostomy surgery.

Alannah – ileostomy

Hi! I’m Alannah, I’m 24 and have been an ileostomate since December 2021. I had my colon and ileum removed due to severe Crohn’s disease I was diagnosed with in 2016 that was no longer responding to medication.

All things considered I’m finding life with a stoma pretty good! There were some tears when I first came home as I kept on leaking but as soon as I switched to a convex bag I haven’t had any leaks (touch wood!) There are still days where I struggle to come to terms with Stinky Pete the Stoma Bag, but I know it’s for the best.

Although I’ve only been at this for a little while, a tip I would give any ostomate, new or old, is let yourself feel what you need to. It’s so incredibly hard, and as my stoma nurse said to me, having a piece of intestine poking out your stomach isn’t natural, it’s normal to feel grief, anger, sadness.

Be kind to yourself, connect with others, and hold your nose… your first few weeks of output are gonna be stinky. Oh, and take some loperamide, the thicker your output, the longer you can go without emptying your bag/having it pull on your skin due to weight. I never wanted this to happen and I never thought it would. I have bad days but overall, it isn’t actually that bad. You got this!

Ellie – Ileostomy reversed and now colostomy

I’m Ellie! I’ve had Crohn’s disease since 2006. I had my first ileostomy at the age of 15 which was reversed a couple of years later and in September‘21 I underwent panproctocolectomy surgery. Giving me a permanent colostomy and a ‘barbie butt’.

My stoma saved my life, I had zero quality of life before my surgery and now, 3 months on I am slowly getting my life back! I can go out with my friends and be a normal 24 year old. I hope that in the next few months I will be able to ride my horse again and get back to the gym taking it easy!

My stoma top tips would be to take your time after surgery.. it WILL get better and stomas aren’t always a burden. I’ve named my stoma ‘Winnie’ and it’s definitely helped me to come to terms with it all. I find my colostomy a lot easier to manage than I did with my ileostomy, the output is thicker and touch wood!!!! I’ve not had any leaks so far. And also.. ignore the myths, you CAN wear tight clothes with a stoma.❤️

Rosanna – ileostomy

My names Rosanna, I’m 25 years old, mummy to an almost 2 year old and a full time student nurse!

I was ill for over 10 years with ulcerative colitis unable to hardly leave my house or look after my little boy due to the severity of my symptoms. I exhausted all medications and treatments – steroids, biologics you name it I tried it! so an ileostomy was my only option.

For anyone who may need a stoma in the future I would say ask questions and don’t be afraid to use the support around you, no matter how silly you think the question may be, always ask! Take it in your stride and embrace your new body! My stoma has totally given me my life back and I can now leave the house and live my life with my partner and my little boy.

Sean – ileostomy

Hi I’m Sean, I’m 32 and 7 years ago I was diagnosed with Crohn’s Disease. I tried almost every treatment going but nothing could control it and I was in hospital every 6 weeks. February 2020, 2 weeks before the first covid lockdown I had my ileostomy surgery.

The operation itself went wrong due to all the steroids I had been taking because of my Crohn’s. I haemorrhaged that much I died for a while. Luckily the amazing surgeons brought me back. But the recovery wasn’t that great I was sent home 3 days before the lockdown with a massive infection in the scar line which had to be packed twice daily, but because of covid no-one could come out and do it.

My wife did an amazing job, but my body was accepting the ileostomy. My output was very high and uncontrollable to the point where I dehydrated that much I had complete kidney failure and my other organs were starting to fail. But because of covid I was petrified to leave the house as if I caught it being so weak I wouldn’t have made it.

This happened 3 times during the first lockdown, I also got sepsis from the wound infection. But once all these problems finally began to change for the better. My life was completely different…To the point now where I have decided to keep my ileostomy for life!

The only tips I can give is to trust yourself and what you are feeling the doctors don’t know how you are feeling, trust your instinct and for one with an ileostomy my top tip is if you feel a slight burning or itching change your bag asap chances are it’s leaked and will cause major skin irritation if left!

Lauren – colostomy

I’m Lauren, I’m 34 and a primary school teacher. In February 2021, I was diagnosed with rectal cancer. I needed emergency surgery to have a stoma as the tumour was causing a blockage.

Initially, I knew absolutely nothing about what having a stoma would be like and I didn’t want to know at first. I was very daunted.

As the weeks went on, I started to get into a little routine and now it’s just part of everyday life like changing your underwear! I find as long as you’re prepared with supplies, it’s so manageable. My tip for anyone would be to just build up your confidence over time and you’ll be fine. You have it for a good reason and the chances are, it has either saved your life or made it so much easier so, allow yourself a good relationship with it, sounds a bit far fetched but that’s how I look at it.

Frankie – ileostomy

Hi, my name is Frankie and I live in Cornwall in the UK! I was diagnosed with Crohn’s Disease in 2017 and had my ileostomy formed only a week later.

The best part of stoma life is the confidence I have gained because of it! My top tip would be to have patience. It may take some time to get used to, but you will get there!

Amy

@ibdwarriorprincess