My biggest fear is growing old and realising I wasted the best years of my life moping because I’d be dealt a bad card.
After a year of frequent EUAs, dilatations, abscesses and horrid medications, I finally agreed to surgery again on January 25th 2013. This would be my second stoma; the first surgery was under emergency conditions after my colon perforated during a scope aged 15. I woke up 8 hours later with no pain relief or catheter and was told I had a stoma that was 98% likely to be permanent due to the state of my rectum.
At 4 and a half stone, having not eaten in 15 weeks and pumped full of steroids, the recovery took a little longer.
I was told by my surgeon to be prepared for the emotional breakdown that was sure to occur after such a traumatic situation. I waited, expecting the worst, it never came. The surgery was the greatest thing that ever happened to me!
The moment I woke up post op was the most horrifying and traumatic experience of my life. But it was also one of the greatest moments. I’d suffered severely with Crohns from the age of 12. I couldn’t gain weight, was on the toilet no less than 30 times a day and had griping stomach cramps that would leave me on the brink of passing out. By 14 I’d accepted that my life was going to be that living hell and I would never be fixed. The surgery was a blessing. I gained 3 stone in as many months (and still have the stretch marks to prove it).
I completed my GCSEs worry free and achieved good grades and the day after my leavers prom I was (by some miracle) able to be reversed.
My Stoma gave me my life back and the decision to have the reversal wasn’t made with haste. I knew that ultimately I would relapse and have a stoma again; Crohns is after all a chronic, lifelong curse.
I had 5 wonderfully healthy years, got my A levels and completed a 3 year degree. I’m now a dental Hygienist and Therapist. I lived a normal student lifestyle, got engaged in Australia and traveled a lot.
In December 2011 I relapsed again. It was only my rectum affected and I knew surgery would be the logical option, I was adamant I wanted to try all the new medications first. But they didn’t help. So I finally agreed, I had the surgery on the 12th of Feb. I had a laparotomy and loop ileostomy formed. I went in prepared, knowing exactly what to expect and with complete faith in the amazing surgical and Gastro teams I am under the care of at Salford Royal. 9 days later I went on a charity weekend away and 2 weeks later I was off to Iceland to the spas, new high waist bikini in tow.
I’m now 4 months post op and although all my problems haven’t been completely fixed, I feel that I am in a better place.
Having the stoma doesn’t bother me.
I have a wonderful fiancé who loves me and an incredible family who have given me the strength to mission on and man up.
I still work, I travel, I do everything a “normal” 23 year old would and I no longer have to track the distance to the nearest loo on my iPhone!
Aside from work I am the co-founder of the charity “Diversions family support network” which is a North West based charity supporting children, young people and their families after bladder and bowel surgery (check us out on Facebook).
It was set up after I Volunteered for the wonderful charity “Breakaway”; I had never met another young person with a stoma before and didn’t want any other child to have to go through it alone. It’s a fantastic part of my life and I’m honoured to have met so many inspirational people.
I feel that all the experiences I’ve had since my diagnosis, including the surgeries and the Stoma’s have made me a stronger, more positive and well-rounded person.
I don’t believe in asking the question “why me?” I’m not at all religious but I do like to think that everything has a purpose and a reason.
If I can help just one person feel more positive about the prospect of surgery or understand them when the people closest to them can’t, then surely my suffering has been worth it?
