Lisa: Successful Reversal
At 26 I didn’t even know what a colostomy was! I didn’t even realise young people had colostomies as I associated them with older people. I was quick to find out!
I have suffered from severe endometriosis for years and was having yet another laparoscopy to laser off the adhesions attached around my ovaries, bowel, rectum, kidneys and other infected areas. A week after my routine operation all was not well and I was rushed in for an emergency colostomy because a fistula had formed. Although I was informed before the laparoscopy there might be a 2% chance I could end up with a bag, because there was so much endometriosis around my bowel and rectum, ever the optimist and being squeamish I didn’t research into it. I never imagined I would be the unlucky one it could happen to.
Not knowing was probably better in hindsight. Even before the emergency operation I refused to look at any pictures of what it looked like, or read about how they worked, as I knew I would find it easier to cope looking at it on my own body. They marked my tummy with an ‘X marks the spot’ and I was off to surgery.
I came round still in denial and not wanting to look under the covers. The nurses were amazing and supportive and helped me get over the fear. I really felt their empathy which made me feel better and not ridiculous for overreacting. With the best support from my friends and family, I started to deal with it. It was scary to say the least, but you quickly adapt to things thrown your way that you cannot prevent.
Crying every time I passed wind in front of people was a regular occurrence during the following days. The lack of control was very embarrassing especially being female and very prudish about flatulence. After years of being discrete and private, it was out there for all to hear!
But as time went on, surprisingly I grew quite attached to him, (it being male as most men are a pain in the arse!). Knowing it was going to be temporary definitely made it easier to deal with. I wouldn’t have been so strong if it was a permanent stoma.
It’s very hard for anyone at any age but initially I definitely found it difficult to cope with being young, single and having an active social life. I got braver as time went on and started going out partying again. I quickly learnt the hard way that drinking too much had a bad reaction in the morning but I adapted by trying other drinks with less fizz.
Buying a new wardrobe to hide the bag was my treat to myself as it helped with my confidence and body image. No-one ever guessed I had a bag as they are discreet and by adapting my clothing and wearing magic pants helped hide it and hold it in.
After 6 months I had a barium enema to see if the fistula had healed on its own. I was very anxious before the examination because everything hung on the results. If it had healed on its own, I would have a simple reconnection of my bowel and the colostomy removed. Unfortunately it hadn’t, so I went in for a reversal operation and the removal of a large part of my bowel and rectum.
Having a bowel resection is a major operation and recovery is longer but emotionally it is easier to deal with. Coming round from the operation I was in such a daze as it was a lengthy operation. I was very weak and it took me a lot longer to regain my energy and bounce back from it. I was in hospital for a week after the operation as you have to be able to have a bowel movement to confirm that the operation has been successful. That first bowel movement was a massive relief and the entire four bed ward celebrated!
During the first few months you can experience going to the toilet up to 15 times a day, sometimes with urgency and soreness. Unfortunately the frequency is very different to what you may have previously experienced but after about 2 years it evens out and your body settles down to what now feels as normal. You spend a lot of time in the bathroom so taking up sudoku or reading passes the time!
Initially after the reversal I missed the bag as I had become comfortable with using it and I was scared about going to the toilet in the normal way again. Because half of my rectum was removed it got confused, my brain had to re-educate the rectum when I needed go to the toilet because it wasn’t compacting the stools. There is a continual sensation of urgency which you have to train your mind to ignore. It took time, and it never goes back completely to how it was before the operations, but it’s manageable. Going 5 or 6 times a day seems normal now.
From keeping my colostomy a tight secret whilst I had the bag I was more open about discussing it afterwards as I was proud of what I had gone through and felt stronger for it. Those that were aware of the bag whilst I had it were understanding and in many cases quite curious and wanted to know more out of genuine interest.
There were many funny, embarrassing and cringing moments throughout the six months when I had my colostomy bag, but you have to try to see the funny side of these things and laugh!