I was diagnosed with Crohns in 2002 after just over a year of stomach pains, rushing to the loo and blood in my stool. Although I had many procedures over the years, these were mostly exploratory to check up on my Crohns and I managed flare ups with courses of various medications, like oral or IV steroids helping to get me through sixth form and university.
I considered myself fairly lucky as I knew that cases of Crohns and Ulcerative Colitis can require surgery and I had years of fairly good health, being able to complete my studies and start working full time. I became very poorly at the start of 2015 and knew that something was different with this flare up – symptoms were far worse than anything before and medication I had previously taken wasn’t ‘kicking it into touch.’ After a couple of short hospital stays to go on IV steroids, I went to an emergency clinic and was admitted to hospital for what I was adamant needed to be a longer stay to really get to the bottom of things (no pun intended). My employer was very accommodating and I had told them I would probably be in for up to a week. Fast forward seven weeks and I was still in hospital on a low residue diet and trying biological drugs via IV for the first time. With no improvement from these drugs and results from tests showing lots of ulcers, inflammation and swelling in my large bowel (colon) which was in my consultant’s words ‘on fire’ it was time to consider surgery. Well, I say consider, I was informed that surgery would need to happen and at 9 pm one evening a surgical consultant I had never met before came to tell me I would need a pan-proctocolectomy.
When it comes to health and my Crohns, I feel to an extent that ignorance is bliss. I knew that people with my condition could need surgery at some time in their life and had a vague idea that ‘a bag’ may need to be worn but I didn’t want to know any more than that to worry myself. I was in my own room in the hospital when the consultant told me about this operation which involves removing all of the large bowel, rectum, and anus and forming a stoma. I remember feeling very upset, terrified of surgery and frantically googling the procedure and what a stoma even was. I found lots of videos on YouTube which were really helpful, showing how to clean a stoma, put a bag on securely and how to wear support garments to prevent a hernia forming. At that time, I went on to have a loop-ileostomy formed and none of my bowel removed. This type of stoma was formed so that if all went well, biological drugs would ‘heal’ my inflamed large bowel over time while ‘traffic’ as I like to think of it was diverted to pass through the stoma rather than the large bowel, resting it. I remained positive that I could have what people term a ‘reversal’ and the stoma could be popped back inside my body and reconnected once my large bowel was better again. Unfortunately, this didn’t happen and fast forward to March 2017 where I was once again in the theater for a major operation, this time for a pan-proctocolectomy and a permanent or end stoma was formed.
I never thought at 33 I would have a bag for life other than my weekly shopper but I feel lucky as surgery wasn’t a decision I had to make like some people who are managing their symptoms but life could be better with an operation, it was really the only option and decided for me as I was so ill.
I tried various biological drugs before my second operation to make my stoma permanent and am grateful that I had the chance to try these. My gastro and surgical consultants were less optimistic and had suggested the second operation long before I went ahead with it but as it was such a final operation, I wanted to give modern medicine a chance, until it became clear it was unsafe to keep doing so.
A device like this would work well for me as the type of stoma I have is an ileostomy and is permanently working/producing output. During the night when I am sleeping and not emptying my bag, it obviously gets fuller and stays fuller, particularly if I have had a large evening meal or eaten late at night. This runs the risk of leaks as well as the bag filling with air or ‘ballooning’. Having something in place that raised an alert if the bag was filling would ease my mind about potential leaks.
The only real changes I have had to make in my new life with a stoma are that I’m very careful when exercising as a hernia was formed from the first operation and I had it repaired in the second. I wear a heavy duty support belt when walking my powerful dog or doing something like circuits. Swimming is a great form of exercise as you are naturally supported in the water. I am also conscious of what I eat at times, not all the time, just before something major like a long flight or a full day out when I don’t want to constantly be emptying my bag. There are things to help with this like Imodium tablets to slow down output and sachets to put in the bag to help soak it up.
I’m loving my life, grateful to be off steroids and their many horrible side effects and want to spread awareness that stomas are not something to be ashamed of or embarrassed about and that a full life can still be lived.