Mike’s Story

From Pain to the Pouch

I've just got back from a 10k ride.  Up and down the roads and the trails of Silvan Dam's park and bushland on my mountain bike.  I'm back to full-time work, back to the footy, the movies, the park with my two children, taking them for long walks.  I even get to go shopping!

Mightn't sound like much but given where I was not that long ago, they're all "little victories" that mean a lot.

Perhaps if I walk back through time...

Four months ago... pacing up and down the corridors of the colorectal ward.  The second stage of the procedure and the "three to four day" stay in hospital is blowing out to ten days because the new "works" aren't yet working.  Did I do the right thing? Should I have kept the bag?  A few weeks prior to this, my surgeon asked me whether I could cope with living with the bag if they couldn't complete the procedure.  No worries.  Life with the bag was a hundred times happier and healthier than life with the disease.  Now I had pause to think, "Had I made the right decision?"  I have a J-pouch; it just isn't functioning for the moment.

Seven months ago... did anyone get the licence plate of that truck!  The excruciating pain that I expected to experience post-op never came.  The post-op depression that I'd never knew about hit like a KO punch.  Day five it struck and the memory is still vivid of lying in my hospital bed thinking, "I've got no fight left in me - I quit!"  Not once whilst fighting my disease did I think like this.  I had remained positive even whilst the disease was raging at its worst but now, for the first time, this was gone.  Calm, compassionate responses from a nurse and then my ex-wife starting me back on the not-too-long road to mental recovery.  Quality medical care had already set me on the road to physical recovery.  I have just had a total proctocolectomy and ileo-anal anastomosis.  Prior to this ... I had ulcerative colitis.

Nine months ago... my gastroenterologist tells me what I already knew to be true.  Mike, I've done for you all that I can do.  I'm sorry but medication is not going to help.  We've tried everything that we currently have at our disposal and none of it has got you near remission. These may not have been his exact words but I was neither surprised nor ill prepared to hear them.  I knew I couldn't survive on the doses of prednisolone that had kept me going until now.  Since my first major flare up twelve months earlier I had experienced periods where things "weren't too bad" but not a day where things were "good".

I had deteriorated to the stage where I couldn't really keep working (so my redundancy was fortuitously timed), I couldn't leave the house without severe stress - doing a simple task like my grocery shopping was a too vivid nightmare - and I couldn't even take my children on the twenty-minute trip to school without stopping off once or twice at one of many public toilets along the way.  My life revolved around toilets and drugs. I was very much shutdown into survival mode.

Toilets - if I knew the route I had to take then I had them all memorised.  If I didn't know the route, I'd get out the map or use the facility on the net to work out where I had to go in an emergency ... and you could count on an emergency.  At my worst I was going twelve to eighteen times a day; when the need to go hit me I knew that I may have a few minutes if I was lucky, often I had seconds to make it; the pain at times was close to the limit of my ability to endure; and the blood was just prolific.

Drugs - I'd always preferred not to take any drugs if I could avoid them.  I'd rather the headache disappeared of its own accord than having to take a paracetamol and I'd never want to take stronger than that. My IBD necessitated a change.

Prednisolone, Salazopyrin replaced by Dipentum, Imuran and Ciproxin.  The only one that brought any positive response happened to be the only one that brought side effects - half-a-dozen of them that grew more pronounced over the fifteen months that I took it.  The corticosteroid kept me going for a time but was not sustainable. I wanted to be drug free.

As an aside, one thing that struck me was the stream of well-meaning advice I'd receive from family and friends who had absolutely no idea about the disease.  Drink aloe juice, eat bananas, don't eat bananas, eat cold hard-boiled eggs, don't eat nuts, drink comfrey tea, drink pro-biotics, don't drink cold drinks, try these tablets - they're natural - it can't hurt.  Many of these folk would get well into their advice before saying something like "this helps with irritable bowel syndrome".  Perhaps I had mumbled earlier when I'd mentioned my disease.

Eighteen months ago... hazy recollection.  After three or four really bad months, I'm now just coming around after my third colonoscopy in the last seven years.  Did I hear the gastroenterologist correctly? "Ulcerative colitis"? Never heard of it.  Fortunately he wrote it down for me.

Thus began a journey of trying to educate myself as much as I could, trying to have some control over a matter that seemed to be spiralling out.  I asked questions/listened to answers, joined ACCA, surfed the web for hours on end to try and get my head around how, what and why?  To this day I haven't found answers to all of the questions that arose - how did I get UC? - though I did find enough to gain some further insight into myself, assisting me to move forward with confidence that each decision I made was the best that I could make.

Nine years ago... I looked down into the toilet bowl.  Blood.  Shouldn't be there!  Better get that looked at.

I commenced writing these recollections a few weeks ago.

I still go to the toilet fairly often but the pain is gone, the bleeding has gone, and I've got good control.  I'm drug free.  I'm disease free.  All things considered, I feel great.

How did I get from there to here?... the support of my family, my employers, the gastroenterologist and the STNs; the exceptional skill of the surgical team; the after-surgery care; well-wishes from friends; my children's smiles.  I've already thanked these caring people personally.  My own otherwise good health and the knowledge gained by those who went on before me were invaluable - the surgeons, specialists and patients prior to me, most of whom I'll never meet, though I owe them my thanks.

However, prior to surgery I chatted with a lady from ACCA with direct experience of bowel surgery, met with one member of YOU (by chance a good friend of my daughter's teacher) and spoke to another, both of whom had had surgery for UC.  Whilst convalescing after stage one I spoke to yet another. These last three people were the first three people that I'd ever spoken to who had UC.  My conversations with them were some of the most important of all ... and maybe in time I can assist someone facing the imposing "mountain" that bowel surgery is like Mick, Ros and John assisted me.

Good health and best wishes.

Reprinted from "Just for YOU" (Volume 13 - March 2003)

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