By Kristy, Contributor for morethanyourbag.com
Hattie has been doing a great job of raising awareness of IBD and life with a stoma and I’m very grateful to be invited to write a post for her blog. Those that have read her posts will know that she’s recently made the decision to go ahead with reversal surgery. Given that she has been talking about reversal surgery (including the possibility of a j-pouch), I thought that it might be useful to talk about my experience with what is unfortunately a failed j-pouch.
I had emergency surgery for UC in December 2012 and was given a temporary stoma. Keeping my rectum wasn’t an option so I had the choice of making the stoma permanent or going for a j-pouch. To an extent, I felt like I was on a conveyer belt and it was a given that I would have j-pouch surgery. I obviously did give it some thought and consider whether keeping the stoma would be best, but I had pretty much made my mind up as I was being rolled in for the emergency sub-total colectomy. My j-pouch was created in June 2013 and connected in September 2013 (on Friday 13th!). The first two or three weeks with it went really well, better than expected. Unfortunately it went downhill from there. I suffered what was apparently a huge anal fissure and with very acidic output passing over it about seven or eight times a day I was in a lot of pain. After throwing a lot of different creams at it and two rounds of botox injections (I never expected that I’d have botox there!) it finally healed. It then became apparent that my output was unusually acidic and meant that I was in pain most of the time (not just when I went to the toilet). I would grimace my way through work, rush home to sit in a luke-warm bath and take codeine and tramadol to try and ease the pain. I was getting really frustrated as I just wanted to get on with my life. After nine months, I chose to go back to a stoma and to make it permanent. It turns out that was the right choice for me. Apart from a blip, when I needed to get the stoma revised, I’ve been feeling so much better and finally feel like I have my life back. My surgeon was somewhat baffled as to my experience and thinks the problem with my output may have been caused by my body chemistry being altered by chemotherapy that I had about 10 years ago (unrelated to my IBD issues). Hopefully, therefore, it isn’t an issue that many people will experience.
It might sound like this is all doom and gloom, but it’s really not. I’m very happy with where I am now. Plus, I would make exactly the same choices again (unless of course I had a crystal ball that told me the j-pouch wasn’t going to work out). After all, the numbers are on your side – the majority of j-pouches work, and work well. What I really want to do is highlight some of the issues that I found important when making my decisions in case it helps others.
First and foremost, make sure that you are happy with your surgeon and nurses. You are literally putting your life in their hands and you need to have utmost trust that they are both very good at their job and understand what you are trying to achieve. My surgeon is excellent and I am so lucky to have found him. What I really appreciate is that when I go to see him he asks if I have got back into running again – he realises that he’s there to not just make sure I live, but to make sure that I can enjoy my life in the same way that I did before I became ill. Also, don’t ever worry about asking to see another doctor for a second opinion. Despite the fact that I really admire my surgeon, I went for one. If they’re acting professionally and have faith in their own ability, they should not have a problem with it. In fact, they may well welcome another point of view, which was the case in my situation.
I found it particularly helpful to keep a diary to track what I had eaten, what I had done during the day and how much pain I was in. I used a traffic light system for pain. When I was having significantly more red and amber days it made me realise that, despite the optimism that might accompany a green day, reverting to a permanent stoma really was the best decision for me.
When you go to see your surgeon go armed with a list of questions. Write them down, because you will inevitably forget some otherwise. Don’t worry about taking up their time asking all the questions you need. You need to understand what is happening with your body and what the best way forward is in your circumstances. I’d also recommend taking notes at your appointment so that you remember everything that is said. There will be times when you’ll want to read over them to help you understand your options and the process. There is a lot to take in in a relatively short time.
Buy some Calmoseptine. Actually, buy lots of it. You can get it shipped from the U.S. using Amazon. The stuff is brilliant and really helps with burning down there – I wouldn’t have survived the nine months with my j-pouch without it.
Make sure your family and friends know what you’re going through. I did my best to put on a brave face, but it really does help if they understand what is going on. We all need support at times.