After I had my colon removed and a stoma formed I had an ileostomy. I started exploring the world of the internal pouch (ileo-anal pouch) on web forums (mostly the ia forum) and through talking with my stoma nurse and the consultant I was referred to – Mr Wells.
The ileo-anal pouch is a reservoir made out of small bowel stitched to the rectum. This allows the stoma to be closed and you get to go to the toilet in the traditional way again! You will ‘go’ more often than someone with a colon and stools will be looser, but I’m sure you can get the idea.
So, I opted to have the surgery, and was admitted in August 2006 (at this point I was a private patient thanks to my dad’s health cover through work). This was for the first stage – the formation of the pouch and the creation of a loop rather than end ileostomy – so a loop of bowel through the abdominal wall rather than the end. Once the pouch had healedThe surgery went well, but when I went home I was still having quite a bit of bleeding and pain in my rectal area. A little is to be expected – your gut has been stapled there – but this seemed like too much.
I had several visits to my very big fingered surgeon, who did several flexible sigmoidoscopies on me which didn’t really show much – but were very painful. I was given firstly mesalazine and then prednisilone foam enemas – the assumption being that there was a little bit of inflammation in the rectum. It didn’t clear up. I couldn’t go back to work (I managed half a day before the pain got too much) I was anaemic and in constant pain.
I had one trip to A&E when one night, after I went to the toilet and filled the bowel with blood. The doctor couldn’t even examine me digititaly
It came to a head just after new year in 2007 when I woke up in the night to go to the toilet and couldn’t. I couldn’t move my legs. I assumed I was just really tired and went back to sleep, but when I woke up in the morning I was stuck in bed. My father tried to help – which was excruciating. It was the second of January, and there were not many doctors about at my surgery, so I was prescribed stronger painkillers over the phone. I knew these would not help, I needed something anti-inflammatory – the UC had spread to my joints. It took a nurse who lived across the road, who mum saw in the street and asked for advice calling the GP to get them out, and I was then eventually prescribed an anti-inflammatory – Diclofenac. This would take a few days to work perhaps – and I was advised to contact my consultant.
Thankfully be the next day I was able to hobble to the toilet and got to see my consultant (fairly swiftly – still private) who admitted he was stuck, and wanted me to see his former mentor Professor John Nicholls. Now Professor Nicholls has some history with these ileo-anal pouches – he was part of the team that first created them in humans in 1978 – you can read the original paper here. And you can even get a DVD of him doing the procedure here!
I remember when I called to make the appointment and the secretary apologising that he couldn’t see me for two weeks. At this time he was based at The London Clinic. I was booked in to see him and have an examination under anaesthetic. This revealed that all the mucosal lining of my rectum had gone – it was basically just the muscular tube left – which was why it was so sore and bleeding. The ulcerative colitis had attacked the last of th etissue that it could. The options – either abandon the pouch, or have a procedure called a pouch advancement – cut away most of the remaining rectum and bring down the pouch and hand stitch, rather than staple it in place. This was how the procedure was first done, and should, by removing more of the rectum, leave me free of disease.
I decided to go for it, and an appointment was quickly made for the surgery just a few weeks later, and so off I went to London…
Now, that word on private health care. As you can see, my appointments and treatment were very rapid compared to the NHS. However, as the story develops further we will come across some problems. However, I make no apologies for making use of it. However, it was the NHS that saved my life, and we must fight to keep it.
This blog post is part of a series I’m writing in the run up to my stoma surgery in January 2015. If you’ve found it interesting, please do share it, and if you can, support CCUK & the ia by donating at my Virgin Money Giving page http://uk.virginmoneygiving.com/RichardHarris19