My name is Sam Cleasby, Im 32 years old and I want my bowel removed. That sounds like a pretty drastic thing right? Well yep it is. I am in the midst of a journey that I hope will end with my large bowel being removed from my body.
I have Ulcerative Colitis. I was diagnosed with the disease ten years ago and in that time I have had numerous hospital admissions, many colonoscopies (camera up the bum to the layperson!), many different drugs and more than a few poocidents…
My drug of choice is currently Prednisolone Steroids. They are pretty amazing at getting the disease under control but unfortunately come with a barrage of side effects from insomnia, weight gain, the very awesomely named ‘Moon Face’, hairiness and general mentalness (think anxiety, depression, psychosis, thoughts of suicide) These drugs stop your body from creating corticoids and so have to be slowly tapered off over a matter of weeks or months. I was nearing the end of a two month stint on Pred when I started with another flare up and so my dose that I have carefully tapered down for weeks has been jacked right back up there.
My other drug options are immunosuppressant drugs such as Azathioprine – Immunosuppressants work by reducing or suppressing your body’s immune system. This will then stop the inflammation caused by ulcerative colitis. The drawback is they affect your whole body, not just your colon. This may make you more prone to infections. Like all drugs Azaithioprine has possible side effects, one of the scariest is an increase in the risk of cancer.
Another drug option is Inflizimab, given as an infusion, it works by targeting a protein called TNF-alpha, which the immune system uses to stimulate inflammation. This is the serious big boy drug – one in four patients have an allergic reaction to this drug. Again it increases the risk of cancer, specifically lymphoma in patients.
Now I need to say here that I am in no way against drug treatment, I know they have their place and are the right option for many people. If you are researching the different drugs for yourself, be sure to speak with your doctor or specialist nurse. All drugs have side effects and if you googled every medication you take it would terrify the life out of you. These drugs control the disease in so many people and if it is right for them, then I salute them.
They are not right for me.
I do not want to put medication into my body that may treat the colitis but could give me worse things than what I started with. Cancer is a biggy. I do not want to take anything that increases my chances of getting a disease that is more likely to kill me than the colitis is.
And so I come to the other option. Surgery.
In a way I am lucky, I have Ulcerative Colitis. That means that my large bowel is the only place where the disease is located. People with Crohns can have the disease anywhere in their digestive system. This means that surgically removing my large bowel ‘cures’ Ulcerative Colitis.
Surgery involves permanently removing the colon – a colectomy. As part of the operation, your small intestine will be re-routed from the colon so it can pass waste products out of your body. Initially this will be into a bag attached to my stomach, then in a further operation, surgeons will create a pouch out of my small intestine that is attached to my anus so I can go to the loo in the same way as everyone else!
For some, surgery is the last option. It is the time when they are so poorly that there are no more drug options. Or it is an emergency operation – a life saving operation. For me it is elective. I am not at the point where my bowel is close to perforating, nor have I run out of drugs to take. But my quality of life is taking a bashing here, Ulcerative Colitis affects every part of my life. It affects the relationship with my husband, it affects my children when I am tired, sick and suffering. It affects work, friendships, my mental health, my confidence. If affects how I see myself as a woman. It affects the choices I make in life.
I don’t want to live a life that is ruled by the toilet bowl.
And this is why, for me, the best option is surgery. Take the bad boy away!! I am not making light of the decision, I know it is HUGE and life changing. I have researched so much and cant find a single person who doesn’t say that it is the best thing they ever did.
I have seen my consultant today, he is a great bloke. He listens and cares and gives me all the information for me to make an informed decision and then supports me in moving forward. I have an appointment with a surgeon on the 3rd September to discuss my options and hopefully make a decision on whether he thinks I am a candidate for surgery.
So here’s hoping! Fingers crossed they will agree with me and whip this bad ass into shape!