For 14 years I had a colostomy, and most of those years life with a colostomy seemed a breeze. Of course, in the early days there was the odd bag disaster and just adapting to life with a bag on my belly took a bit of time. But I was pleased to have the colostomy surgery. I got to lead the life I wanted and achieved so many great things.
Why I Needed an Ileostomy
So why do I now have an ileostomy? Well, over the last 3 years I developed Slow Bowel Transit Syndrome, that means my large colon was not working correctly, it was taking days and sometimes even weeks to even have a small amount of output in the bag. I was using closed bags, and I could easily wear the same bag for up to seven days without getting anywhere near filling it!
The issue with that was it caused horrendous bloating and my stomach looked like I was heavily pregnant! Along with the look of my stomach was horrendous pain, the large colon just kept getting larger and this was putting a strain on other organs. I started to not want to eat as I knew I would be putting more into the colon with nothing coming out. I would sometimes go days without eating and I never felt hungry. Going days without food is also not good for you. After many meetings with my surgical team, we decided it was time to remove my large colon and switch to an ileostomy.
A Rocky Start After Surgery
I was very ready for an ileostomy, well at least I thought I was! In my mind it would all be a breeze just like life with a colostomy. I was wrong. I know people with ileostomies, and they seemed to be getting on with life with no issues. Again, I thought it was going to be a breeze. When in hospital after the surgery I had a reaction to one of the antibiotics and then I found out what a High Output stoma is all about! I was filling my bag quicker than I could empty it.
To help with this I was provided with an extra large bag with a drain on it that was draining into another waste system, and it was bright green! I was terrified and thought this was now going to be life, especially as the nurses were saying it looks like you are going to have a high output stoma. Not only did I have the bright green output, I was also constantly being sick with exactly the same colour as the output.
It was only when I asked what the IV antibiotic was that I realised that was the cause of both outputs. I know I react badly to that antibiotic, but they didn’t ask me if I have issues with it. Once that antibiotic was stopped, I started improving very quickly and the output slowed down.
Adjusting to Life at Home
I had other issues whilst I was in hospital but this blog is about Colostomy to Ileostomy so I will not bore you with the rest of the issues in hospital! Once I got home I started to see the differences and I did lose some confidence. All of a sudden I went from changing a bag once a week with little output to emptying an ileostomy bag four to five times a day.
I had more bag leaks in that first few weeks with the ileostomy bag than I did in 14 years of having a colostomy. I was feeling distraught and started thinking, did I make the right decision? Every time I drained the ileostomy bag I kept getting output on my hands and I could not work out why. I was really starting to feel disgusted with the bag and the stoma. Every time I unrolled the end of the ileostomy bag to drain it, it always had output on it, and again I could not work out why. I was really getting frustrated.
It may sound silly, but I also found the smell of the output bad. It was such a different smell compared to colostomy output. I was feeling conscious about every aspect of the stoma and ileostomy bag. I was moving towards almost having hatred towards it, and I have never been that way about stoma life. I have always been very positive about stoma life.
Sleepless Nights
Then there were the night times! In 14 years of colostomy life I never had to get up in the night to change the bag. Now I was getting up 3 times a night to empty this huge balloon on my belly! I was mortified! I struggle with sleep at the best of times and now this bag was forcing me to wake up (this has come down to once or twice a night).
I sleep on my right side which is where the bag is, now I am leaning on it when I sleep. Every time I felt myself lean on the bag I would wake up in a panic that I had squashed the bag and caused a leak. I really wasn’t adapting well. I really thought I would breeze through it.
Fear of Food and the Social Media Trap
I was really looking forward to eating properly again, as mentioned earlier I would stop eating because of the Slow Bowel Transit Syndrome. I found myself doing something I have always said not to do when new to a stoma, I turned to social media. I have always said to people that are new to a stoma stay away from social media for a good few months, get used to the new you, get used to your stoma in your time. Do not rush anything. When you are starting to feel comfortable then look at social media stoma accounts and see what you can learn. I have always felt it is overwhelming looking at social media in the early days of stoma life.
But here I was looking at social media and listening to people talking about food with an ileostomy. All I heard were horror stories of people getting blockages from certain foods or people saying, “You cannot eat this or that with only a small bowel.”
I started to become scared of food and stopped eating many foods for fear of a blockage. I was longing for foods I loved, but so many of these foods apparently caused blockages. I felt a bit lost, I was not sleeping well, I was having leakages regularly. I was now starting to hate my ileostomy. I needed help.
Getting the Right Support
I arranged an appointment with the stoma team at my hospital. I went into that appointment and broke down in tears, but I managed to explain everything. It felt like such a relief letting that emotion go and we then got to work on fixing the issues. I was provided with different bags and an ostomy support belt which changed a lot. I went from a flat base plate to convex and that pretty much stopped the leaks.
We then discussed food and my stoma nurse told me to get back to eating whatever I wanted. She advised me to eat small amounts of food I was told would cause blockages and if my small bowel tolerated it then increase the amount. Within no time I was eating absolutely everything and back to enjoying food. There is now no food I avoid, I eat everything!
Life Today
The convex bags are working great, and I now have hardly any leaks. I worked out how to keep the end of the bag clean which reduced output on my hands. Everything just suddenly improved, I had adapted again and my confidence returned.
I am eating well, I learnt the importance of staying hydrated, I am down to draining the bag three to four times a day and once or twice at night. It amazes me that my brain wakes me up in the night when the bag is full. Strangely I have developed a silly defiance where I think “no I am not getting up and draining you.” But then I lie there thinking this bag will not take much more and I do push the bag to its limit.
I am back to doing everything I love. I am back to going away regularly in my campervan. But I certainly took it for granted moving to an ileostomy. Life is all good again.
