I have a guest post this week from Rio; she got in touch with me wanting to share her story and I thought it would be a good idea to share it here as surgery is surgery! Are you thinking about having or a have a jpouch? I don’t have many positive things to say about when I had mine so I thought this post is absolutely perfect and will put your worries to bed!
My story starts at the beginning of 2009 when I started having symptoms of what I now know to be Ulcerative Colitis. It was my first year of University and I was living away from home in halls. I suddenly got ill with diarrhoea and was passing blood and got seen by a doctor after only a few days. They diagnosed me as having gastroenteritis and haemorrhoids – a misdiagnosis most UC and Crohn’s sufferers know all too well.
Over the next few weeks I kept going back to the doctors before my concerns were finally listened to. The last doctor I saw mentioned the possibility of having UC and referred me to the hospital. Two weeks later I saw a Gastroenterologist, who took one look at me and immediately admitted me – it turns out my symptoms had rapidly processed! The next morning I saw the surgeons who told me I had Toxic Megacolon. This is a complication of UC which is life-threatening if left and I needed emergency surgery to remove my colon that day. I saw a stoma nurse, Lizzie, who has become a life support over the years and many operations.
The next few days are a bit of a blur as I was in and out of consciousness. My initial surgery was far from a success and three days later I was having another emergency operation to have part of my stomach removed. For some unknown reason, my stomach lost blood supply during the initial operation; a rare complication that is unheard of after a colectomy. The recovery from having two major surgeries in a matter of days was long and hard. I spent over a month in hospital and the majority of that summer housebound. Yet I did manage to resume University that October which was a testament to my resilience and determination to get better.
It actually didn’t take me very long to get used to having a stoma. After being so ill it was somewhat of a relief to have the pain taken away and the ileostomy was a reminder of how ill I’d gotten. Over the next few months I researched my options of having an ileo-anal pouch. During this research I stumbled upon the IA Support Group who were organising a Pouch Information Day. I ummed and ahhed about having further surgery after the ordeal I’d had the first time around. Meeting people on that day was the best help in making that decision though. I got to ask people with experience of the surgery exactly how it went for them and any tips they could give me.
J Pouch Surgery
Almost a year to the date of having that first operation I was going in for the first stage of my pouch surgery. During that year I’d put on a lot of weight and had improved my fitness so that I was best prepared for the operation. In comparison the surgery was straight forward with no complications. The recovery was also a lot easier as I was fitter and stronger this time around. My loop ileostomy wasn’t the best, but as it was only temporary I got on with it. Four months later I had my take down surgery. This is the operation to close the ileostomy and I soon adapted to my new plumbing. It wasn’t without its problems. I suffered from constant sore skin, rushing to the toilet and the worst stomach cramps I’ve ever had. At times I thought I’d made the wrong decision and wanted to go back to a stoma. Talking to others though this isn’t uncommon as it can take the best part of a year or two to get used to your new pouch.
So how are things 8 years later?
Well, I’m pleased to say things have been great with my pouch. It’s had its ups and downs, but on the whole it’s given me the best quality of life imaginable. For starters I was able to complete my university degree without having to retake a year. I’m able to work full time and other than having sick days for colds and flus, I rarely have any time off because of my pouch. Food is never an issue – anyone who knows me will say how big a foodie I am. I’m always up for restaurant get-togethers with friends and I’m the first to agree to a night out.
I travel a lot! My partner and I tend to plan two holidays abroad as well as weekends away in the UK each year. Then I’ll have a solo trip, or a girl’s holiday somewhere too. I live for my holidays and I love to plan our next trip away. Last year we visited Thailand and Cambodia and I was able to eat the street food there without getting the dreaded travellers’ diarrhoea. My boyfriend on the other hand did (but that’s a story for another time!)
My hobbies include a few unconventional ones like Pole Dancing. I took up the sport four years ago and was instantly hooked. People always ask how I do gravity defying tricks after having major abdominal surgery. It’s not without its risks. Hernias are common after these types of operations; yet I’m lucky to not have one. I’ve slowly built up my exercise and fitness levels and if anything starts to hurt I immediately stop. It’s all about listening to your body and knowing when something is wrong.
Was pouch surgery the best decision for me?
Absolutely! Whilst I have needed more surgery over the past 4 years (gallbladder removal and a recent bowel obstruction due to adhesion’s), this was not related to my pouch. The pouch functions great, and when I have had deterioration, it was because of other digestive problems rather than the pouch itself. The surgery isn’t for everyone; there are many out there who have had major issues and pouch failure. But for me, it lets me live the best life I can as a normal person. Other than the scars on my belly, no-one would ever know that I’m any different.
About the author: Rio is a self-confessed travel junkie who loves to plan the next adventure. Together with her partner Law, they blog about the good, the bad, and the ugly of travelling as a couple. https://www.OppositeTourists.com