Stoma surgery expectations versus reality

I had the phone call a few weeks in advance for my ileostomy surgery last Summer during lockdown. We had to isolate as a family for 10 days and I was in no means mentally prepared. With Covid I didn’t expect to have the surgery anytime soon giving us all quite the shock! A few weeks is much more than some people get with many stomas formed as the result of an emergency surgery where patients wake up to find one without even know what a stoma is. Having a son with one already and having one as a baby temporarily meant I was no stranger to stomas. 

I went in to surgery thinking I knew exactly what to expect and would have no surprises.  I thought I would smash it and be home quickly and get on with a better quality of life. What first hit me was how I felt when looking at it for the first time. By this point my son was 4 years old and I could change his bag with my eyes closed, but looking at my own made me physically sick. I couldn’t change it, I didn’t want to acknowledge it. I felt guilty. I felt a fraud. I couldn’t understand why I had such a negative emotional response to it. The team said that it was completely normal even with someone of my experience. We are not programmed to see our internal organs outside of our body and the shock of it triggered such a reaction. It took me a few weeks to be comfortable to do bag changes and look at it. I now understand that this was ok and that everyone will experience acceptance of their new normal in their own time. 

Despite me thinking I would be completely fine having the surgery I did think I wouldn’t be able to stop thinking about it and know it was there. From my connections made in the ostomy community on social media I have seen a divide in this subject. For me I can happily say that I go hours forgetting I even have one, to the point where it is full and realise I need to empty it ASAP! 

I had been using the same bag appliance for my son for 3 years and assumed I would find the right fit for me after surgery. Oh how wrong was I! My stoma started retracted making stoma refashioning surgery needed 5 weeks after my first one and lots of different bags to try before and after. I am pleased to say I have found ‘the one’ now however it wasn’t as simply as trying a few. I know for some people it may be but the body changes and reacts to different aspects of your life which can result in your appliance being unsuitable. I have learnt to expect the unexpected and roll with the punches. Enjoy the good days and be strong for the bad!

In a panic before surgery I bought some new baggy clothes and XXL pyjamas thinking I wouldn’t be able to feel comfortable in fitted clothes. I saw the ostomates on social media wearing beautiful fitted clothes and thought I would never be the same with my size 12-14 frame compared to their model type bodies. I quickly found that this wasn’t the case at all, and with the correct underwear and support wear I can wear what I had and more. 

Ostomates find navigating your diet after surgery one of the hardest things. You will find some saying they can eat anything they want and others say they only have to look at nuts to have a bag leak and the dreaded case of a blockage! Again our bodies can change how it responds to food and in the last 12 months I have found I can eat some foods fine for a few months, then one day it can start to cause problems. This is where I have found keeping a food diary valuable so you can track when and what has caused the problem making it easier to rectify. 

There are many points I could continue with but these are some of the main ones I thought about prior to surgery. Many great ostomates have shared their own in dedicated posts on social media platforms. Healthcare companies and your stoma nurse will also have literature to give you before surgery which cover the most common concerns and what you may expect following your operation. Stoma nurses are your best source of information. If you have any concerns write them in a note book and take them to appropriate appointments. Never feel you can’t ask even the smallest of questions. This will support you mentally before surgery if you have time to prepare beforehand. I found the ostomate community on Instagram vital in my recovery, and sent many a question which gave me clarity and perspective. Remember we all recover and adjust to such experiences in different ways, don’t compare yourself directly to others. Do everything in your own time, not when you think you should. 

Take care, Rach x