To Reverse Or Not To Reverse, That Is The Question

When my stoma was formed last year, my surgeon told me that there was a possibility of a reversal in the future. There are many factors for me that will influence whether this could go ahead including the medication I am on and have been on, how things have settled with the stoma, how my health is at the time and my opinion.

My stoma is an ileostomy. That means that the section that sticks out of my abdomen is part of my small intestine. It is also classed as an end ileostomy. This part is the end of my small intestine which has been completely disconnected from my large intestine.

There are two ways to reverse an end ileostomy. You can have the small and large bowel reconnected if enough of your large bowel has been left intact. You can also have a J-Pouch formed if your large bowel has been removed. I have enough of my large bowel remaining to do a reconnection.

There are a number of possible complications to the surgery. Some of these applied last April and were reasons for me having a stoma after the surgeon removed the diseased parts of my bowel, rather than being reconnected there and then.

This can include infection, obstruction due to scar tissue forming and leaks at the join site which means stool leaks out into the abdomen. It can also affect your bowel function causing diarrhoea, increased frequency, urgency and leakage although this generally settles slightly in the first few months after surgery. Changes to bowel habits will always be a factor due to the shortened length of your bowel though.

Because of the extent of previous inflammation, particularly along my large intestine, my surgeon was wary of using a damaged piece of my colon as a re-joining site when I had my operation last year. The risk of a leak would have been a lot higher, meaning I could end up extremely ill and in hospital for a long time. The risk of a leak was also greatly increased due to my long term use of (and often high doses of) steroids and my long term use of immuno suppressants including anti-tnf treatments and Methotrexate.

These risks still exist and would be a factor in any possible reversal decision for me in the future. I also already get pain from scar tissue and any further surgery will only cause more. I won’t lie, the possibility of a leak and how ill that could make me terrifies me.

I also think about the time I would be in hospital and the recovery time and how that would affect the boys as I am a single mum. Being away from them is the hardest thing and opting for a surgery which would take me back into hospital and comes with some big possible risks is not something I can consider lightly.

On the plus side I would obviously be able to get a full night’s sleep as I am currently up once or twice thorough the night emptying my bag. I wouldn’t have daily bag changes to do, bag leaks to worry about, I could choose any clothes I wanted rather than what will sit well over my stoma bag. I could lie on my tummy again (not that I did that a lot before to be fair!). I could eat mushrooms, Snickers bars and popcorn!

All things considered I don’t think a reversal is on the cards for me in the near future. I am pleased the option is still there however, and nothing is completely ruled out at the moment. I have had problems with going to the toilet since I was 8 or 9 years old and I can’t begin to tell you the amount of relief it is not to go through the daily toilet hell I suffered pre-Stanley.

I have had some amazing support from the ostomy community and have accepted my stoma and adapted to my ‘new’ life. It isn’t always easy but personally I still feel so much better than before my surgery (even though I am currently flaring). Crohns unfortunately can attack any or all of the digestive tract (as well as other organs) so having a stoma won’t cure me. However it is making my general symptoms easier to manage day to day when compared to the struggles I had before my operation.

Stanley is set to stay part of my life for the foreseeable. He is pretty cool and aside from the health benefits has helped open up a world of opportunities for me through meeting new people, this blog, the online show I am part of and what I aim to do to help others with ostomies and chronic illnesses. I am more than happy with the way my stoma helps me and feeling healthy enough to enjoy time with my family is what is most important to me right now.

💜