On the 17th March 2008 I underwent a total panprocolectomy which gave me a permanent stoma. For those not aware, this meant that most of my intestines, my entire colon, rectum and anus were removed. It’s not as drastic as it sounds, but it has given me a quality of life that I had forgotten about.
So, how did all this come about?
For several years I noticed I was “spotting blood”, but being a typical male I ignored it hoping it would go away by itself. Eventually though the pain started to become unbearable, so something had to be done.
I saw my doctor who diagnosed a poor diet, but rather than seek a second opinion, I took her word for it. However, the problems continued until I suddenly started to suffer from episodes of uncontrollable diarrhoea. This made working difficult. I still remember now the speed time trials I must have beaten running to the toilet … and imagine having this happen in the middle of a meeting with my manager (and yes, it happened!)
Luckily for me, my work colleagues were fully aware of my situation and were careful to fully take the micky at each and every stage. Sounds terrible, but it actually helped hide the total embarrassment I always felt.
Due to the severe bouts of diarrhoea and the pain I was in, I had to stay away from work for a week. During that time I became very dehydrated and very weak from not eating – so much so that I had to call the doctor for a house visit. She took one look and prescribed “Fortisip” – a high nutritional milk shake. After a few of these, I felt better.
The symptoms continued though, so I was admitted to hospital to undergo a colonoscopy. Eventually I was diagnosed with having Crohn’s disease, and so was prescribed some codeine for the pain, and Pentasa to help with the inflammation.
The next immediate problem I had was related to the codeine. It is not only a very good pain killer, but also has good anti-diarrhoeal properties. The drawback to codeine though is that is you become very dependent on it very quickly. It is also an addictive drug.
In my case, I was starting to take more and more to achieve the desired effect. I was though still losing blood.
Whilst on holiday in Cyprus I became very ill and had to see a local doctor for medication. When I returned home, it was my GP who made arrangements for an immediate blood test. I was in hospital the very next day having a blood transfusion.
Due to the constant blood loss, I had become very anaemic. At least I knew the reason now why I was always very tired!
Three pints of blood later I’m back at home and a further week later back at work. I’m still bleeding however, and the pain is worse than ever.
Due to moving home (and counties), travelling home is a major gamble. Will I make it the entire journey home without messing myself? (an hours trip) – and what happens if there is a traffic jam?
As the pain was worse than ever, the doctor arranged for a further series of rather unpleasant tests at the hospital where it was discovered that the Crohn’s had spread dramatically, and was now being diagnosed as Ulcerative Colitis.
The only way to resolve this was to remove all the damaged areas, which in my case meant pretty much everything past a few inches of intestine. It was a bit of a shock for the surgeon to tell me they would be sewing up my backside, even though it made sense.
Before the operation though, I had to go at least 8 weeks without codeine. As an addictive drug, you cannot just stop, so you reduce the dosage over a period of several weeks. The last week however was horrible – sleepless nights, shivers and sweats –
Complete cold turkey!
The actual operation and story of recovery is shown on my website (www.mystoma.co.uk) – so I won’t repeat it here. Instead though, we can skip forward several years to the present day to the three most popular questions I am regularly asked about …
1 Do I miss sitting on the toilet?
2 Do I miss passing wind!
3 How do you cope?
Questions one and two are not as silly as they seem. After all, we all use the toilet. It is a perfectly natural bodily human function. However, the answer to both is no! – I can honestly say hand on heart I have not missed either, nor have I even considered it.
Question three will be covered in a future blog.
I created my website several years ago because at the time, there was very little information available to the average person. Now days, Google has changed all that, and we have a wealth of information at our fingertips. What we don’t have however are many personal experiences which have been recorded. Hopefully I can help address this.
I receive on average five emails a week thanking me for sharing my experiences, or maybe to just ask a question. These emails brighten up my day, and I genuinely enjoy reading, answering and helping. Maybe you have a question?