Catching up

So it was mid-2012 when I last apologised for not updating this blog and I think 18 months between posts should be forgiven.  To be honest I got worn out by constantly feeling sore and unwell.

As a quick catch up, the Infliximab worked a little, but nowhere near enough to be called any sort of cure.  I continued through the Olympics in London and on to the end of 2012 to visit the operating theatre roughly every six weeks to have yet another abscess in my left bum cheek incised.  By Christmas 2012, I had six or seven seton stitches and my whole cheek looked like a grossly exaggerated map of the surface of the moon, (insert weak joke here concerning popular single by The Waterboys. “I saw the whole of your ……”)

The most exciting Christmas occurrence was confirmation from my surgeon that we would now go for the nuclear option, or at least what I had been hoping to avoid but knowing was coming.  That is, the final removal of my rectum in the hope that taking the source of the Crohn’s away would stop the peri-anal fistulas from reforming.  And so started a frantic hunt of the Interweb for others’ experiences of similar operations.  Which may be how you, dear reader, arrived at this tale, and which is definitely why I started writing the thing in the first place.

And in general, it was reassuring and helpful to read the stories of other sufferers and how they had coped with a proctectomy, but then again, as you will see, by the time I had the op, I had pretty much forgotten any of my earlier research.

Anyway, it was another uncomfortable Christmas, continuing to balance on one, (right) cheek and sitting down with great care and attention.  This practice had been going on for well over a year  by now and had also led to regular back problems.  My offset sitting arrangements also caused its fair share of problems in public loos, especially pub toilets which are often so small it is difficult to turn around.  If you have an ileostomy, (i.e a bag), AND have to balance on one cheek, sanitary visits can be tricky.  In fact I could start a whole new blog about my experiences with public loo bog rolls.  I find it amazing that no-one has managed to invent a bog roll dispenser which actually works, i.e. does what it is supposed to and dispenses paper.

Back to using the smallest of smallest rooms while being unable to sit squarely on both cheeks.  I can now say from extensive personal research that the majority, (over 50%) of pub bogs have seats which are not properly attached to the bowl and therefore eject to left or right the non-square-sitter.  Allied to the existing back pain, not fun.

So as we moved into 2013, where were we?  Original Crohn’s sorted in 2004 by ileostomy, great result.  Original marriage ended 2009 by wife, poor result.  Four kids, new Irish nurse girlfriend, nice-ish flat, all good.  Crohn’s reappeared in fistula form, left bum cheek a disaster.  Pain almost constant.  Paracetamol/tramadol ingestion also constant.

Eight operations under general anaesthetic in 2012 and we seemed no closer to solving the whole problem.  Indeed the latest abscess now appeared so far across my cheek, that it was coming close to being a thigh abcess and not perianal at all.

And so the decision was taken to remove the bum completely.

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It’s been some time since I updated this and for that apologies.

I have now had two infusions of Infliximab, two weeks apart and am due my third tomorrow.

First things first.  For those of you who haven’t had this treatment, it’s a little scary at first – once the canula is in, then a doc and a nurse line up beside the bed and test the oxygen and lay out a whole lot of vials in front of you with things like adrenalin etc in them.  They then sit with you for fifteen minutes, (timed!) to make sure you don’t have some sort of fit.

All went well for me, but at this stage I am still not sure exactly what the drug is doing for me.  I still have an open wound on my left butt-cheek and in the last 10 days that has once again got infected – so I’ve been back on the cipro and flagyl – yeuch.

And that means I am by no means certain that tomorrow’s infusion will go ahead.  Which would be a bad thing.

So what is my current condition?  Well, I can sit down much more comfortably than I have been able to throughout the past year to 18 months.  But there is still some pain, which I must admit I had hoped would have disappeared by now.  And almost more annoyingly, I’m still producing “stuff” from the various wounds around my tail end.

And I had really hoped/expected that that would have gone by now.   Though I suppose I do still have three seton stitches in there.

So better, but not right.  Bit like a school report – doing ok, but could do better.

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The beginning of the end or the end of the beginning

So this is quite exciting.

Persistence pays off it appears.  I have a second possible date for starting the almost mythical Infliximab.  Next Tuesday.  March 13.

Some hurdles still to overcome.  Chest x-ray and bloods this morning and then a Registrar will be the latest of far too many medical experts to have the joy of reviewing the moonscape which is my backside on Tuesday.

It’s going to be a nervous week since I am still on Penicillin, (that’s the third different antibiotic over the past 6 weeks) to try to make sure I can get to Tuesday without infection, though I am pretty sure from the pain I continue to experience when sitting down that some remains.  Still got the three setons and a couple of open wounds.

What an odd balancing act this is.  Desperately trying to get rid of infection to give me a drug which lowers defences against infection but in which there seems to be great confidence.

Also not sure whether to laugh or cry when I’m cheerfully told, “You have highly complex Crohn’s”.

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Sex and a stoma

… or bagging a partner, when you’ve got a bag.

So you reach the stage of requiring a colostomy or ileostomy.  The surgery’s a worry, but the future is even more concerning.

You’ve battled with the pain of ulceration and the embarrassment and inconvenience of Crohn’s or Colitis – that should go, but now you’re going to have a bag sticking onto your tummy.

Will it stick on?  Will it be smelly?  Will I ever be able to go swimming again?  With self-esteem already probably low, now you must face the future with a permanent addition to your torso.

I was married when I had my ileostomy – and as far as I remember, my wife was very understanding.  We had two children post op, so things must have been pretty good.  But my marriage ended in my mid-forties, so I too have had the challenge of building new relationships with a bag.  (Or rather a relationship with a woman, while I had a bag).English: Ileostomy with one-piece, drainable (...

First the easy answers.  No it’s not smelly.  Yes, it does stick on, and as to swimming, sort of, (for a bloke) if you find some high-waisted trunks.  These three questions have all come from potential partners – I’ve found the adhesive is very strong and sex can be pretty vigorous.  (The picture to be fair, shows what I would consider to be an enormous bag – mine is about half the size).

Remember, to the outside world you still look the same.  In fact you are better than you were before – feeling stronger, less or no pain and more positive about the future.  So the image you are presenting to a potential partner will reflect those advances.

When do you mention the bag?  This blog is about me, so not all I say will apply to everone’s personality, but I hate to let people down.  Therefore, after making initial contact, (not necessarily a thunderbolt moment, but enough to know that you would like to be able to take things further if ….), I do look to mention Crohn’s pretty early on.  I don’t like the idea of waiting to the point of no return and finding out a bag is a deal breaker.  And I’ve had a mixture of responses, though mainly positive.  At least a potential partner knows what he/she is taking on.

So, the nitty-gritty, as it were.

New bag at least 24 hours before the possibility of an intimate encounter.  I find a bag Ostomy bag baseplatesoftens slightly over the first 24 hours.

Empty bag as close to the time of the action as possible.  This might seem obvious, but is worth remembering.  And my experience is that the flow through to the bag during sex seems to be minimised.  Might be a natural slow down of the gut at that time – I don’t know the medical specifics, but that’s a decent bonus.

Have confidence.  Two sexual partners have told me they have forgotten I even had a bag, which may seem incredible, but ….

So having a bag isn’t a direct route to a life of celibacy.  Beauty is more than skin deep.

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Depression – or why me?

I’ve read articles about Crohn’s which say that taking Omega 3 as a supplement has no significant specific benefit for IBD sufferers, and that is quite possibly true.  But stay with me – there are less direct excellent effects.takeomega3

But Omega 3 is a natty little substance – especially when taken at very high levels of something called EPA, (no lengthening of the words here – it’s too complicated).  Nevertheless, you won’t have to search far for an all round positive review of the properties of Omega 3.

A reduction in inflammation is one, and that’s got to be good news for us all.  But there is also now evidence, backed up by some decent scientific research concerning the benefits of taking Omega 3 on mood swings.  In some cases, high EPA level Omega 3 has been recommended as an alternative to Prozac.

Now we Crohn’s and Colitis sufferers wouldn’t be human if we didn’t have our low moments, and for some of us those stretch into days, weeks or months.  With a general lack of understanding in the outside world and therefore a lack of sympathy, we know how easy it is to feel isolated, lonely and a little desperate.

Why is my life dominated by this disease?  If it’s “incurable”, where is an end to my suffering.  And all this is made even worse, by an inability to work, by surgery or by a really tough bout of active disease.

I’m sure we all have our own ways of combating feeling low – but taking a high level Omega 3 supplement such as takeomega3, ( is not a bad idea.

And I mention takeomega3 because its formulation is pretty much pharmaceutical grade, (at least 75% and probably higher)- and trying to check the real levels of EPA or indeed Omega 3 itself in the countless bottles on the supermarket/pharmacy shelves is a nightmare.

Oh – and taking Omega 3 also tightens the skin, (good for wrinkles) and improves healing.

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Pain vs Sick

Anyone who has or is suffering from Crohn’s or Ulcerative Colitis, knows what both pain and feeling really ill are about.  Often at the same time.

But after probably around 20 visits to the emergency wards in a few of our hospitals over the past few years, I find there is a difference.

I have been in excruciating pain when I still had an intestine and more recently from perianal fistulae.  But I have always know when I am really ill from that moment when you are admitted to a small booth in A&E.

I am referring to that feeling of relief, of no longer having to pretend you’re not feeling so bad, of knowing that someone else is now going to take care of you, that soon you will be feeling better.  Many of the same feelings accompany an admission with just high level pain – but without the surrender to absolute exhaustion.

I never knew how incredibly tired I was from keeping up appearances, until I lay on that uncomfortably hard “bed” immediately after admission to hospital and more often than not, fell asleep.Diseased large intestine - Ulcerative Colitis

I’m not giving any particular insight here – just acknowledging my own feelings and hoping that you readers will recognise the same experiences.

And for those who feel this blog is more about Crohn’s than UC – here’s an unpleasant image of the damage done by UC to bring it all home.  And a link below that suggests we all need to see more of the sun ……




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Back to limbo

Not that I can limbo – certainly not at the moment and looking back, I was never that flexible.

But here we are mid Feb 2012, in the middle of a course of Ciprofloxacin, hoping to clear up the infection around the scarred battlefield that is my left arse cheek.  (History note: seven in-patient surgeries on the peri-anal fistulae in the past year – narrowly avoided full rectal removal since it appears there is nothing wrong with my rectum as such – now trying to get to the point where the docs can try me on Infliximab).

The good news – I can sit down, sort of, which is a better position than we have had for most of the past year.  With three seton stitches in there and two still open shallow slashes, there is plenty still coming out.  Yes – that’s good.

The bad news – apart from the unpleasantness of having a leaking arse cheek, I am still in pain and the fear is we get to the end of the Cipro next week and are still no further forward.  Especially with this conundrum – the IBD nurses are looking for no infection to allow me to have Infliximab, but I’ve also been told that everyone has some sort of culture around the tail end.

So … where do we go from here?

That’s the limbo bit.  No end in sight.

It would be nice to have a game plan …

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“We’re on the road to nowhere”

Funny how often Talking Heads comes to mind when you’re struggling with Crohn’s or Ulcerative Colitis.

It can constantly feel like two steps forward, one step back – or worse the other way around.

After more than year of daily paracetamol or stronger to combat the pain from perianal fistulae, we, (which if course means I) are trying to get me infection-free to start Infliximab, which is supposed to  heal up all those fistulae, (apologies for using fistulae rather than fistulas – classical education).

But that seems much more easily planned than done.  After my most recent stay at Edinburgh’s Western Infirmary, (6 days, en-suite shared with five others, caring staff, no booking required – n.b. breakfast menu is a basis for negotiation rather than a personal selection), I was on a two week course of two different antibiotics.  Nice and effective up to a point, but no cigar – and they won’t let you have a cigar at the Western either, but that’s a different story.

So despite an approach which appeared similar to a hammer and a nut, I am still “infected” around the rear end.  But hang on – a couple of surgeons over the past year have said there is always some sort of culture going on around there, (and it’s not high art), what with underwear, trousers and plenty of sitting around, (when it’s comfortable enough to do so).  Perhaps there is something in naturism and letting the air flow.  In Scotland.  In February.  Hmm.

So the depressing bit – and the point here of course is that you may have been through much the same sort of dilemma – is will I ever return a swab which shows me infection free and therefore, will I ever be given this Infliximab, (which is taking on a Holy Grail like status all of its own the longer I wait).

All in all, it’s not very conducive to a positive mindset.

Chin up.

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Surgery – my ileostomy choices

Around 2003 I had an ileostomy – at Stirling Royal Infirmary in Scotland. The surgeon confidently told me he was the best in Scotland – I presume they all tell that to all their patients. Having said that, he made a very neat job and I couldn’t have felt more prepared for what lay ahead.

Choice 1

Whether to have the surgery or not. By this time I had had many bouts of Crohn’s pain and illness combined with all the consequences most readers will know all too well. For me, I was coming to the end of my tether. While Prednisolone was pretty fantastic while I had it, Asacol or Azothioprine didn’t seem to be much cop as a maintenance dose.
So I guess I was pretty open to doing something rather than waiting for the next bout of illness to afflict me.

My surgeon sat my wife and I down and explained that such was the scarring and therefore narrowing of my gut I was at risk of a blockage and in that blunt way that some medical experts have,  he outlined that if that occurred, say, on an island with no hospital, I would die.

Choice 1 had suddenly become quite loaded.

Choice 2

“Just” an ileostomy or removal of the whole bang shoot right down to and including the rectum.  Images in my mind of my bum like the sewn up mouth of a favourite teddy bear.

“There are a lot of tiny nerves down in that area,” the surgeon went on.  “And while I am one of the best, if not the best in Scotland, there is a very small risk of impotence”

So that sort of decided Choice 2.  (Though as things have panned out, I could have avoided a whole lot of pain and inpatient surgery, by just saying yes)

Choice 3

I cannot remember all the arguments that informed Choice 3 – to make the op reversible or not.  But I do remember that going for a permanent solution seemed the best – and mentally I think that was certainly wise.  I have spoken to many others whose minds are fixated on getting the stoma removed and themselves made “whole” again.

I don’t think that does your mind any good.  Or to look at it another way, (since how dare I comment on another’s mental processes), for me the immediate acceptance that the ileostomy was with me for ever, I think made the whole recovery process easier.

And the recovery process is tough enough both physically and mentally without complicating what’s kicking about your head.

So a date was set and my wife and I switched our diet to one of soft bread and soup, (in case we prompted a blockage), and concentrated on making me as fit as possible for surgery.  I continued to work – including two hours commuting each day – and life sort of diddled along.

Decisions taken – bring it on.  Sort of.

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“I don’t know why but I had to start it somewhere, so it started there.” Pulp

You’ll need some historical context to all this so here are some basics.  I’m 46, a separated father of four and unemployed.  I share my life with Crohn’s disease.

I was diagnosed about 20 years ago.  Repeated ulceration and subsequent thickening of the gut wall led to an ileostomy around 2003.  That transformed my life and I thought everything was going to be OK.

I had a blockage in 2009 caused by the tubes of my remaining gut sticking together.  I almost died.  More emergency surgery.

Since March 2011, I have been an in-patient in hospital seven times, each time involving surgery.  All around my tail end.  And this is the problem with Crohn’s disease and people sharing their experiences to support others.

If it’s affecting your guts, your whole life is centred around diarrhoea and if you have the peri-anal fistulas I’ve had, it’s no easier to explain even to your closest friends.

This quote is generally attributed to Benjamin Franklin – “The definition of insanity is doing the same thing over and over and expecting a different result.”  Of course my surgeons, and there have been too many, are not insane, but the theme is correct …

So Infliximab, (a newish drug administered intravenously), it is for me – and at this point, while I have done some research and know it will supress my immune system, I am stepping somewhat into the unknown.

So the past is my history – living with Crohn’s, living with the consequences of an ulcerated gut, undergoing major surgery twice.  And more recently living with paracetamol, or something stronger, on a daily basis for 18 months.

And the future is pinned on a wonder drug – which might or might not help to return me to some sort of normality.

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