Learning to live with a stoma

By Edmund Murray | September 21, 2016

In 2014 Edmund lived with a temporary loop ileostomy after stage one of J-pouch surgery. In this article he discusses his experience of learning to live with a stoma...

Getting prepared

My situation was slightly different as I was just having a stoma as a temporary measure between the removal of my colon and the connection of the j-pouch so I may have taken a different view on things than someone who is going to have a permanent stoma.

I hope this will be the same with all IBD services but a few days before my operation I had an appointment with the stoma nurse to talk about the operation and what to expect afterwards. She took me through what she would expect from me in the first few days after my operation and answered the questions that I had.

She also gave me an information pack with booklets which I read and a practise colostomy bag and goo that you could fill it with to simulate what having a bag would be like. Being a queasy sort I just ignored that but that was my choice and certainly not something I would advocate as a sensible course of action.

First days of having a stoma

For the first few days after my operation I was so out of it that I didn’t really comprehend what now having a stoma meant. The stoma nurse visited me on several occasions to show me how to empty and change the bags before she let me loose on my own.

Being queasy I was worried how I would cope when I saw parts of my insides sticking out and the damage the surgery had caused to my stomach area, but when the time came I managed to cope without fainting.

I soon got the hang of how to empty/change bag and how to keep the area clean. My house has several steps to get to the front door and one of the bathrooms is upstairs so I had to show the physios at the hospital that I was able to get up and down a flight of stairs before I could be released. Even though I was allowed home a day earlier than planned, after 6 days in hospital I was just glad to get home and back to the comfort of my own bed.

One of the first things I did once I got home was to make up my emergency kit bag that the nurses and literature had said to have to take with you everywhere you went and placed it by my shoes so that I wouldn’t forget it when I left the house.

However, after a few days, what would turn out to be a regular problem started occurring. For the whole time that I had a stoma, I just couldn’t get the bags to stick properly and they would end up leaking everywhere.

At first I thought it was something I was doing wrong but after speaking to the stoma nurse she felt that it was down to the fact that my stomach area was so misshapen after the surgery and she hoped this would sort itself out once the swelling started to go down. Unfortunately it didn’t and we tried all manner of extras such as specialist extra sticky tape and belts but the problem still persisted which affected my confidence as I never knew when the bags would start leaking.

However, every situation is different so what happened to me shouldn’t be taken as an indicator of what could happen to anyone else.

Bag accidents

I did have one occasion where a bag came loose while I was asleep and I woke up in the middle of the night in a pool of mess. I instinctively rushed into the bathroom and plonked myself on the toilet, completely forgetting in my haste to pick up my emergency kit of spare bags and clean up stuff that I mentioned earlier.

Since I was completely covered in mess I couldn’t go back to get it without making a horrendous mess on the carpets so I had to bang on the bathroom wall until my sister woke up wondering what all the noise was about and had to be dispatched to both bring me my emergency kit but also clean up the mess that had been made.

Not her idea of fun at some unearthly hour in the morning, but on the flip side I also learnt to keep a few spare bags in both the house’s bathrooms from that point on so I wasn’t caught out again.

Also, the stoma nurse had said to get a plastic mattress cover for my bed just in case things like this happened so fortunately the mattress wasn’t ruined and the sheets cleaned up after a couple of hot washes.

There were times when I would have a shower without a bag on to give the area around the stoma a good clean and to not have a bag flapping around the place for a bit. I can’t say that I ever got used to seeing part of my insides sticking out of a hole in my skin and seeing faeces coming out while it was uncovered but in my mind it was just something I had to put up with until my plumbing was reconnected.

One other thing that I found possibly was causing the bags to leak was wearing a leather belt on more formal trousers that I had to wear occasionally while at work. The belt also would rub the bottom of my scar just above my groin area which meant that it took slightly longer than normal to heal.

Most of the time I wore my trekking pants which are fairly loose around the waist and have a webbed material belt so didn’t rub the whole area as much. No doubt I looked right stupid at work wearing a shirt and tie up top and baggy cargo trekking pants down below but most people knew I’d been for the surgery and the reason for my unusual fashion choices.

However, wearing loose-fitting clothes around the waist area was a must the whole time I had a stoma and for a few weeks after I’d been reconnected while that scar healed.

That said, I put up with the leaky bags for the 16 weeks I had a stoma for since I always knew this was going to be a temporary arrangement, so if it was going to be permanent I’m sure I would have taken the situation more seriously than I did. My priority, aside from keeping well, was to get myself back into my normal way of life as soon as I could to help me take my mind off the whole surgery process.

Enjoying life

The main thing for me though was that, despite all the issues that I was having, I was able to enjoy being at the Glasgow 2014 Commonwealth Games.

I had nearly bankrupted myself getting tickets for as many events as possible given that nothing like this is ever likely to happen in my home city again and had I been in the middle of a flare of UC then I would have missed out so much of the action being in a bathroom. Plus I would have driven those around crazy with having to get up and down from my seat on a regular basis.

At the time I was generally able to sit and watch events for the whole time they were on without needing to worry about going for a pit stop which wouldn't have been the case were I ill. Given that I had only recently been sewn back together I had to be mindful of how tender my midsection was and try to refrain from jumping about and celebrating as I would do normally whenever something exciting happened so as not to injure myself any further.

With hindsight, I was only just getting to grips with having a stoma by the time I went back to get everything reconnected and even though I did find it challenging at times I always remembered that without having gone for the surgery in the first place then my life would have been a lot more difficult.

A few weeks ago I caught up with a friend of mine who had recently had to have a permanent ileostomy as a result of his Crohn’s disease and he was asking me for tips and advice on how to cope with living with a stoma. While we were talking I couldn’t help but think that I never had the opportunity to discuss what life with a stoma would be like with anyone so even though I tried to pass on what limited knowledge I have I hope I was able to help my friend in some small way that I never had the chance to get myself.