Guest Writer - Jon

Life after surgery: it is not the end of the world

Hopefully this blog entry shows that surgery can be a good option for some people suffering inflammatory bowel disease (IBD). I write as someone who has suffered badly from ulcerative colitis (UC) and required surgery because of it. I had a colectomy at the end of last year and had an ileal pouch formed. I have been doing pretty well since the surgery. Before my surgery I had been coming across quite a lot of negative information relating to surgery, often from people who didn't need it or didn't have any form of IBD. I wanted to write a blog about how if you need surgery, it can be very helpful and improve your life.  

Of course every operation has risks. I am not saying that everyone should chose surgery over medical treatment. Surgery should be a last option not the first. Always talk to your doctor before making a decision. I want to show that the operation can improve your quality of life. It definitely did for me.   

I will attempt to give a brief idea of what my experience of UC was like before I had surgery. Through 2011 and 2012 I suffered very badly from UC. There were only a couple of months when treatment worked well enough allowing me to lead a normal life. The rest of the time I was either house bound due to an almost constant and often uncontrollable need to go to the toilet or sometimes having to spend time in hospital. I made the tough choice of having my large intestine removed after exhausting all medical treatment that I was prescribed, trying various diets, herbal remedies, supplements and positive thinking (as positive as you can be with UC). Previously I had been very healthy. Before being diagnosed with UC I had been in the process of training for a marathon and was taking the training seriously. About a month before the marathon I started to have problems with my bowels which seemed more than “runner’s trots.” These problems turned out to be UC.

I was very nervous about the operation. It is a big decision to make. It is a strange thing to ask to have an organ removed. It is even harder due to how often you can come across negative comments about it online.

Since having my pouch surgery I have travelled to the Giant’s Causeway in Northern Ireland, I spent two weeks excavating in Jersey (I study archaeology) and I have just returned from six weeks travelling in South America. While in South America I climbed a few mountains, hiked through mountain passes, cycled down mountains, hiked in jungles and went swimming in lakes and rivers. I did not have any major problems with my bowels while away. I was very careful about what I ate and drank. The only problem I experienced was when I needed to take malaria pills and these seemed to cause me to need to get up a few times in the night. I had no problems during the day. As well as travelling I have been going to the gym, swimming, cycling and trying Tai chi. I used to practice yoga a lot but have yet to get back into that properly.

I do go to the toilet more than the average during the day. However I have warning, control and I can hold it in. I do not feel this interrupts my day to day life. I do not keep a log of how many times I go to the toilet but I would say I average about four or five times a day.

I mention all of this to show that the surgery is not the end of the world. It has vastly improved my quality of life. Last year I barely left the house and almost missed seeing my sister get married. However this year a couple of weeks ago in Peru I was able to hike through mountain a pass at 4600 metres above sea level. Last year staircases often proved to be something of a challenge to me.

Deciding on having surgery is not something that should be taken lightly and I do not want to be misinterpreted as encouraging everyone with IBD to have surgery. Obviously not everyone with IBD requires surgery. If you are able to treat your illness with medicine or diet and changes to lifestyle then that is clearly the way to go. Surgery should always be the last option and you should always consult of doctor for the best course of action before you make any decision regarding your health.

However for some people like myself this is not the case. I felt I had exhausted every other option and that I could not keep living the way I was. I was existing not living. When it was first mentioned to me I was very against the idea of surgery. It terrified me. I thought it sounded like medieval medicine. “We don’t understand the problem so we will just cut it out!” This is not the case. Modern medicine and surgery is amazing.

I should warn you that the surgery is not easy and you will not feel better straight away. In fact you might feel worse before you feel better. The surgery was described to me as being similar to being hit by a bus. I was very weak and in pain after the surgery, but this does not last. I had my pouch formed at the end of November 2012. The first few weeks are hard but you notice improvements every day. These may not be major at first but things are going in the right direction and there is improvement. I went to visit friends for New Year’s Eve. I did spend most of the night sitting down and not doing much but I was able to visit people and there was very little pain from my wounds.

You are very aware of your stomach muscles and trying to avoid moving them as this is painful. This can be difficult as a lot of movement often involves these muscles. You find different ways of getting in and out of bed. This pain does not last.     

I know I mention some negatives involved in the surgery, and it is not a magic cure, but it can vastly improve your quality of life once you get over the initial stage. There is always going to be a period of recovery after any surgery. My quality of life is much better than it was before the surgery. I hope that is shown through me mentioning the travelling I have been able to do. Next on my list of things to do is start training for a triathlon…as well as getting back to my masters.