My story

Diagnosis

I was diagnosed with Crohn's in 2002 after just over a year of stomach pains, rushing to the loo and blood in my stool. Although I went on to have many procedures over the years, these were mostly exploratory to check up on my Crohn's and I managed flare ups with courses of various medications to get me through sixth form, university and work.

Photo on the left is me with a steroid 'moon-face' and photo on the right is me looking much healthier when off steroids!

Medication

For long periods of time I took Loperamide to slow down bowel movements and Azathioprine to control my symptoms. If I had a flare up I would use Pentasa Mesalazine suppositories or Prednisoline steroids (sometimes oral and sometimes via IV if admitted to hospital.) Before I went on to try biological drugs, I tried Colifoam steroid enemas. 

The first biological drug I tried was Infliximab via IV two weeks before surgery for a loop-ileostomy but I had a reaction to it on the second dose so couldn't have it administered again, I do often wonder if this drug would have worked wonders for me! I then tried Adalimumab (Humira) at home and went on to replace this with Vedolizumab (Entyvio) which was relatively new to market and available to patients when I tried it. I was hopeful as it was described to me by my IBD consultant as working differently to the other biologics I had tried, it is designed to block inflammation and stop white blood cells from attacking the lining of the colon. I had five doses of this via IV before I had a pan-proctocolectomy. It came to a point where I was too poorly to consider giving another biological drug a chance and give it the time it would need to take affect as I risked needing emergency surgery and I wanted to plan the operation knowing what I was having done and prepare for it. 

Surgery

I considered myself fairly lucky as I knew that cases of Crohn's could require surgery but 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 this drug 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 Crohn's, 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 had never wanted 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 theater for a major operation, this time for a pan-proctocolectomy and a permanent or end stoma was formed.

A permanent stoma

I never thought in my early 30s 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 am grateful that I had the chance to try other biological drugs before my second operation to make my stoma permanent as I feel I explored all options. 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 drugs a chance, until it became clear it was unsafe to keep doing so.

Living with a stoma

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.

Lots of 'ostomates' name their stomas, I see my stoma as a part of my body so it's my stoma and not something separate...so mine has no name!

Promoting a good quality of life with a stoma

Here's where I've shared my story...

Triathlon England covered my first GO TRI aquathlon (a swim and run event).

My story has been featured on The Indisposed Blog which aims to talk about a range of illnesses and disabilities in an engaging and humorous manner and celebrate some great achievements by individuals. 

Take a look at Issue 2 of Stoma Tips (autumn 2018) a publication that provides ostomates with practical advice and information as well as inspiring stories from people who actually have stomas. I'm proud to say my story about starting to run as part of my recovery following operations is featured in this issue.