I was going to save this post until just before my surgery in January, but as it is Inflammatory Bowel Disease Awareness Week from 1st – 7th December I thought I would bring it forward. This might be a US based thing – but as we had to endure Black Friday over here I am appropriating it.
So, to put this in context for you, you need to know that I had a diagnosis of Ulcerative Colitis, which is an inflammatory bowel disease that affects the large bowel (colon) and rectum – Crohn’s Disease can affect the whole digestive tract from the mouth to the anus. Last year my diagnosis was changed to Crohn’s Disease, but there is now some debate among my doctors as to which I have.
I have had surgery to remove my colon and most of my rectum, and have an ileo-anal pouch (sometimes called a J-pouch or internal pouch) made from my small intestine which means that my plumbing is all internal i.e. I do not have a stoma and an appliance of my abdomen to collect my waste (poo).
When the pouch is formed, a rectal cuff is left in place to attach it to. Unfortunately, my cuff became inflamed (proctitis) and I needed further surgery – a pouch advancement – to remove as much of this as possible – when it was inflamed I was unable to work, walking was painful and I was tired all the time. At one point the inflammation also spread to some of my joints – knees and fingers.
Around 4 years ago I was prescribed a drug called Humeria (also called Adalimuab) which is one of the newer treatments. It is an auto-immune suppressant, suppressing the bodies attack on itself which is essentially what the IBD does. For a while I was great, but then unfortunately developed a series of abscesses around my bottom, linked to the join from my surgery and a fistula (a tunnel through by bodies tissues). These have required several surgeries to drain and treat.
So where does that leave me? I have a fistula which may never heal. There is a collection of infection behind my pouch which is not draining away totally, and requires surgery to remove. The repeated surgeries have left me with faecal incontinence, and I have to wear pads every day. Despite barrier creams, the skin around my bottom is broken and sore. Sometimes it is still painful to walk long distances. So those are the symptoms I have, but what does it mean?
On a bad day I will not be able to go to work. This will usually be a combination of particularly loose bowel movements and stool (I take the maximum allowed Loperamide (Immodium) everyday which has resulted in particularly sore skin meaning I cannot walk without pain from the work car park to the office, and it can be painful to drive (the moving of legs to change gear for example). I will be bleeding too with each bowel movement, and the blood loss makes me feel weak and tired, and as well as the external pain there will be internal pain too as what little of my rectum is left ‘flares’ and becomes inflamed. If I do walk, I limp. I will take pain killers – I reserve prescription strength co-codamol for these bad days. The flares don’t seem to be triggered by anything specific, although getting tired and run down often leaves me sore – right now with a 5 month year old that is happening more than I would like.
I leak every day – a mixture of stool, blood and pus. I wear pads day and night. These are quite bulky, so when I go out and about I have to take a bag, along with my RADAR key for disabled toilets and nappy bags for when there is not one available. On bad days I will need to change more frequently, and the rubbing of toilet paper makes the soreness worse.
For me, most bad days are just that – a day. I rest, I am extra diligent with creams and eat very plain, non-exciting foods. In that respect I am more fortunate than some, but less so than other IBD sufferers. Everyone’s disease is different, and I’m sure other sufferers will be sharing their stories this week. Many others of course will not – not comfortable to share what is a pretty intimate part of their lives. You can find more details of how Crohn’s Disease and Ulcerative Colitis affect people at Crohn’s & Colitis UK.
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, supported CCUK & the ia by donating at my Virgin Money Giving page http://uk.virginmoneygiving.com/RichardHarris19