My IBD Story -Part One #CrohnsandColitisAwareness Week

So as it’s Crohn’s & Colitis Awareness week, and I decided it is as good a time as any to recap my own IBD story. I’m going to start writing, it might get split over a few posts, but here goes…

Diagnosis

In early 2005, I noticed some blood in the bowl when I went to the toilet. Not a lot, but a bit. I’d been diagnosed with IBS (Irritable Bowel Syndrome) the year before, but didn’t have any of those symptoms. I thought it was probably haemorrhoids and got some over the counter cream, but when 3 months later it hadn’t stopped, I went to the GP. They did some tests, blood and stool I think, and I was referred for a colonoscopy – a camera up the bum.

Aside from the preparation for that being fairly horrific (top tip, if you ever have it, take the day off work) the camera test was OK, I was sent away and a week or so later went back to the GP and was told I had ulcerative colitis and was given some suppositories. I don’t remember seeing a hospital consultant, or being given any information – if I was I certainly didn’t properly take it in or appreciate what it meant to have this chronic condition.This was now May.

First Flare

In August, I was working supporting young people on a residential. I wasn’t getting much sleep because they did like to stay up late trying to start relationships and smoke out of the windows, the young scamps. I was getting some horrible crampy pains, but the IBS medication was helping. On the Friday I went to the GP and was given some steroid foam enemas. Off I went.

That Saturday I supported a group of young people to go to York. I remember on my lunch break gulping down a Burger King and then spending a long time in their toilet with cramping and diarrhoea. I don’t remember the Sunday (I probably slept a lot) but on the Monday morning I was fit for nothing. My mother took me to the GP who looked at me (looked, not examined) and wrote a letter to get me admitted to the local hospital.

More drugs!

So in the hospital they upped the steroid and gave them to me IV, as well as pain relief. They didn’t work. On the worse day I went to the toilet 13 times in the day, as well as over night. I was losing weight, my belly was distended. As a last gasp they tried Cyclosporine which is used as an anti-rejection drug after transplant (it’s a strong immunosuppressant).

That didn’t work either. The surgeon came around one Sunday, my belly was measured and was still swollen. I was told I was at risk of developing toxic mega-colon and by bowel perforating, and I was put on the surgical list. I was visited by a stoma nurse, a cross was put on my abdomen and I was wheeled down to theatre. I’d been in the hospital about 3 weeks at this point. I asked for a shark bite finish.

Recovery – Part 1

I woke up in the surgical recovery unit – just below intensive care. I had a nurse by my bed pretty much 24 hours a day. I had a drain, maybe two, a catheter, a naso-gastric tube, an epidural (I think). Oh, and a big long scar right down my front closed with staples. And a stoma, a little red thing poking out of me into a clear plastic bag.

Despite all this, I felt better. I’d had a metre and a half of diseased organ removed from my body. After a few days I was moved back to the ward, and things were going OK. I had lost a lot of weight by this point so was being fed through a drip (TPN) as I wasn’t yet able to tolerate food, and had just started having water again. unfortunately I developed septicaemia from the TPN needle and there was a probable kink in my bowel. In a matter of hours I went from OK to very sick, and was taken back to theatre, re-opened up and then stapled back together again. Cue another stay in surgical recovery.

Recovery – Part 2

I was moved back to the ward again, and a few days later a doctor came around and drew the curtain around my bed. He told me I had MRSA – detected when I was swabbed post op the second time. I knew very little about it and thought I might die – but it is treatable with really string, vein burning antibitoics. So I had those, and a nasal cream and a special body wash. I had to be barrier nursed, and all my visitors had to don aprons and gloves to come and see me too.

The MRSA was contained, I started eating and drinking again. By the time I left the hospital after 7 weeks I was 3 stone lighter than when I went in – I must have been lighter again at some point during my stay. I don’t have many photos from that time, but I attended my Gold Duke of Edinburgh Award presentation a few months after being discharged, and as you can I see I still look a bit thin.

D of E Presentation

And so I was off into the big wide world to learn to live with a stoma.

Not everyday is a bad day… #IBDAwarenessWeek

I’ve had some lovely feedback from my last post about a bad day, so thanks to all those who fed back. Lots of IBD bloggers are posting this week, so do check out the hashtag #IBDAwarenessWeek to find more.

I’ve been reading a few, and wanted to just add a little perspective to my previous post. My really bad days don’t happen often, maybe once every couple of months. Of course, I do have issues like the incontinence and associated pain most of the time, but I am still able to work full time, socialise and enjoy alcohol and eat pretty much whatever I want.

I can’t exercise – the pain, urgency and leakage increase, so I’m looking forward, post surgery in January to being able to exercise. I’m not over weight, but reckon my fitness level is about nil. This will also include running around with my little boy, who will be 6 months when I have my surgery.

Mentally, low level pain is very waring. Physically too. And that means sometimes you are not available for your friends or partner. I was commenting on a thread on #getyourbellyout Facebook group earlier this week. The thread was by a young woman seeking advice because her friends had stopped inviting her out because she had said no for so long. They didn’t understand her condition and the impact it had on her. I’m not sure all of my friends fully understand how my IBD affects me – it is one reason I now blog about it – but I am fortunate that they have always been supportive.

So I guess I see myself as somewhere in the middle. I’m not required to have regular hospital treatment, can work and live a pretty normal life. Things could be better, and what needs to happen is happening. Not such a bad day after all.

 

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

#IBDAwarenessWeek – What a bad day is like for me

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