Apology to all bag wearers


Following on from my blog post last week when I flew into a terrifying rage after members of a very naive US police department declared to the entire world that having an ostomy or colostomy was pretty much a ‘fate worse than death’, and that teenaged boys who wore bags (for any reason at all) would never get girlfriends as the bag made then untouchable and disgusting. (Click here for previous post), Cincinnati Police have rightly apologised for their ill-thought-out campaign.

The campaign sparked outrage amongst the ostomy community. Many felt betrayed and let down. I know I did.  While the idea behind the campaign was good (to try to protect youngsters from gun crime) it painted the very idea of having an ostomy bag as a thing of revulsion, something that made the wearer an outcast and an unattractive person in the eyes of society. Many people felt the same way that I did, that this campaign was re-enforcing young people’s prejudices and fears about life with an ostomy bag…and that young boys already found it hard enough to accept living with a bag without their city’s police telling their community that their life saving operation now made them the least dateable teenager in America.

I want to say thank you to everyone who wrote in to this police department and made them aware of the upset they had caused. I accept, and I hope others do to, that they were blind to the fact that they would be causing so much offence and pain among a community of people who, quite frankly, have already been through enough pain and worry in their lives.

This apology marks a victory for all of us, whether you have a bag or are facing possible surgery in the future. Through reactions to this campaign and the media coverage that surrounded it we have shown the world that having an ostomy is not  ‘a fate worse than death’, it is something that changes your life for the better. The word ostomy shouldn’t be associated with revulsion, disgust or fear, but with hope, happiness and most of all FREEDOM.

Thank you to the Police Chief for issuing this very public apology and for realising his force’s mistake. We all understood the idea behind the campaign and the very noble thing they were trying to achieve. What still frightens me is that this made it to the press at all. That this sort of campaign was ever signed off, having made it past dozens if not hundreds of different departments before being handed to the media is nothing short of concerning.

Thank you for the apology CPD, but I fear that the damage may have already been done.

Cincinanti police department cpd ostomy offense stephanie hughes stolen colon colostomy crohns ostomy colitis blog

To the Ostomy Community:

 Like many American cities, Cincinnati has seen an increase in the number of juveniles involved in violent crime.  Many of these juveniles become victims and suffer traumatic injuries as a result.  In developing a strategy we contacted a local hospital trauma center which has a presentation that illustrates some life changing consequences of gun violence.  Unfortunately, one of the examples used was of a gunshot victim who was now required to utilize a colostomy bag; and the news chose to highlight a poorly chosen comment by a Police Lieutenant when airing the story.  To use the example of an ostomy bag in this way was a mistake.  Although there was no ill will intended, the results were hurtful to some in the ostomy community and this will not be repeated.

 I realize the way the news story was presented has offended many in the ostomy community, and for this I am truly sorry.  As a result of the numerous contacts I received, I have taken steps to ensure this does not happen again.  I have spoken to the Lieutenant involved in the story and his commander.  Both are extremely troubled that such a well-meaning attempt to reduce the number of juveniles involved in gun violence offended so many.  I addressed this with my command staff and Public Information Office to ensure we are all educated on the issue and to prevent any future occurrences.  I also contacted Mr. Jeff Brogan, General Manager of WCPO regarding this issue. 

 I have attempted to individually answer emails, but I wanted to send a clearer message to everyone in the ostomy community.  I am very sorry this happened and will work to ensure it does not happen in the future.  I assure you this was a mistake on the part of well-meaning individuals and not a deliberate attempt to offend anyone. 

 I hope you will accept this apology on behalf of the Cincinnati Police Department.

 Sincerely,

Paul H. Humphries
Interim Police Chief
Cincinnati Police Department

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Exercise with a stoma – me & Winnie and the joys of moving and shaking


It’s official, me and Winnie (my temperamental stoma bag) are back in the saddle.

Me and a very naughty petting pony in Chester

Me and a very naughty petting pony in Chester

Ok, so before you go shielding your children’s innocent eyes from my blog post and blocking this site using parent protection, I have to make it clear that this post is not about my sex life…I’m afraid it’s much more boring than that (sorry guys), today I’m going to talk about getting on my bike and exercising despite my temperamental stoma.

So if you read my last post about my appointment at the surgeons you’ll know that I have been feeling a bit down in the dumps over the past few days. Well, if I’m going to be completely honest, that’s a bit of an understatement. The way I’ve been feeling is totally down-and-out depressed. I’ve been feeling totally confused about my body, about my disease and about my future. I’ve been feeling like everything is working against me to stop me healing and being able to embrace the normal, amazing and pain-free life, where I wouldn’t clock the toilets the moment I walked into a building, which I was promised I would have after my operation. Basically, I have still been feeling better and weller (I know still not a word) than I did before the birth of Winnie, but recently I’ve pictured myself standing in an open square, throwing my arms out and screaming “I’ve had 13 years of the godforsaken disease, pain and vomiting, give me A BREAK!!!”

Last time something stopped me running/ swimming

Last time something stopped me running/ swimming

Anyway, anyway, anyway, despite feeling like an emotional yo-yo and forcing my friends and extremely understanding boyfriend to tip-toe around me like I’m a ticking-time bomb, a few days ago I decided it was time for me to try to start to build up my muscles again and get exercising! Ok, so it’s not like for the past 12 weeks I have sat in sweat pants and stuffed my face with takeaway and chocolates (I wish), so please don’t get the impression that my longing to start exercising was triggered by some sort of lose weight fast or crazy body image issue where I see myself in the mirror as a giant whale – I have to make it clear here that I KNOW I AM TINIE TINY!! The idea to start trying to exercise again was not brought about by vanity or self-loathing, but by the itching to start moving again and the longing to feel that satisfying burn that tears through your muscles after a really tough workout is over.

Ok, so maybe I am lying a little bit about the vanity thing!

If I’m going to be honest with you (and if I’m not, what’s the point in this blog? seriously?), 70% of my idea to exercise was health related – to help get my muscles, body and bones (due to my osteoporosis) stronger, and transform my twig-like legs back to their stronger, half-marathon selves – and 30%, I have to admit, was more to do with pride.

Ok, so I know that sounds ridiculous, so let me explain. This weekend me and a group of my girlfriends are heading to Centre Parks for a couple of days of girly fun and laughter without the prying eyes of the male species (well I am sure there will be boys in the vicinity, otherwise that would be weird). This will be my first ever weekend away with my friends – EVER! I know, I’m so sad, I never went mad and took part in one of those mental booze-fuelled rampages to Ibiza in my youth. I never felt the need to get bladdered abroad, drinking out of funnels and having shots off naked bodies – I totally missed out on that one, I don’t think i was in that sort of crowd, and to be fair I don’t think my IBD would have let me go even if I’d wanted to. Instead I stuck with the family caravan trips, where we visited every historic monument in Britain, got flooded out of camp site, ate biscuits in bed and even dressed-up in bin bags in public. My childhood holiday memories are made up of me leaving my sister to drown as the tent filled with water, waking to find sheep carrying us down a very steep hill, and many many paddies that I can’t remember exactly why I threw!! Ah memories!! (At the time I didn’t appreciate those holidays enough, now I wish I had)

Anyway, where was I? The Centre Parks trip was booked months before I realised that my surgery (that I knew was going to happen) was imminent. When we booked the trip I was seriously ill but still incredibly active. Despite the crippling pain and exhausting fatigue which filled my bones I still loved nothing more than to exercise. I have always been that way. No matter how ill I get I still find the energy to get my bum off the sofa and do a bit of jumping about. In fact I find it helps my illness. Exercise makes me feel happy…it makes me feel in control when everything else is spiralling downhill at an incredibly fast rate. When I’m at my worst getting motivated can be hard, but the hardest step is getting out of the front door in between the toilet visits, once I’ve passed that hurdle and started running/swimming/cycling, I can run/swim/cycle for forever (well not forever) without letting my Crohns/Colitis cross my mind. You could say that exercising is the only time when I feel free, that I feel my illness comes second and I come first.

So, I’d been really looking forward to this trip until we had a meeting to discuss activities a few weeks ago. This is when the realisation that this was not the average relaxing holiday lounging around drinking wine or exploring monuments finally hit home. I really don’t know what I had been expecting or what I thought Centre Parks was, but I really didn’t expect that we would be spending our few days of blissful girliness zip wiring, jumping off cliffs and racing around a forest. Everyone else was really enthusiastic as my friend read out the activities, but I kept saying “oh that sounds energetic” or “not for me”…and you know what, I hated myself for it! Usually

A daring but very painful experience in the month before surgery - extremely ill but determined to enjoy myself

A daring but very painful experience in the month before surgery – extremely ill but determined to enjoy myself

I would be the first one to jump onboard with the craziness and fling myself off a rock face or something equally energetic (as long as it was certified as safe), and I hated hearing my little wining voice winging about how little I could do because of my op. Even the cycling seemed out of the question with my open wound, stoma and fistula…I left the meeting without putting my name down for any of the activities, in fact I wasn’t even sure how I was going to get around as I didn’t even know if I would be able to cycle! I went back to my flat devastated with an image of me sitting in the villa alone all day while my friends did fun-filled activities, waiting for them to get back before asking how their days had been…STUPID OPERATION!!!

But I was determined this wasn’t going to happen, I was going to have fun even if I couldn’t throw myself off a cliff or zip to my death down a ridiculously high wire. So I broached the subject with my surgeon (who I adore) and to my amazement he said I could do light exercise, just as long as I didn’t forget I had had major surgery. I mean, like I’m going to forget, I’ve got a flaming stoma bag to remind me every second of every day. I heard my heart-break into a million pieces when he said I wouldn’t be able to swim because of my open scar…I knew it was no good pleading so I just sat looking dewy-eyed and upset, hoping it would at least make him feel like the most evil person in the world. You see swimming is my most favourite thing in the entire world, I find that no matter how much stress or how much pain I’m in all my troubles float away when I get in the water and I can swim for hours on end at an absurdly rapid pace with the only thought bobbing through my mind being did I do 26 or 27 lengths…if I don’t concentrate on counting I quickly forget and have to go back to the lowest number.

swimming in the ocean - happy days pre surgery

swimming in the ocean – happy days pre surgery

But he did say I would be able to cycle. But I didn’t want to find out I couldn’t mount the damn thing in front of all my friends or get on and wobble around and fall off with my bum in the air exposing Winnie to the world. Basically I didn’t want to be humiliated. So on Monday I got on my bike for the first time in, well, forever. I have to say I was excited and petrified! The last time I got on my bike I was on a busy main road (I don’t know why we started out there DOH) and I was wobbling around all over the place. This time we went to an abandoned (well not quite abandoned sorry guy who owned Landrover I almost hit, I wasn’t sure if the look was pity or annoyance you gave me from behind the wheel), to get me used to the motion and to see if I could even get on the seat with all my bags dangling off my utility belt! I had this weird image of me getting Winnie stuck on the handlebars or her falling off as I whipped along the bumpy tarmac – obviously that didn’t happen.

Anyway, I have to say it was the most fun I have had in ages. I raced around in my little helmet and luminous jacket (yes I know it was broad daylight) like the happiest little kid in the world. In fact I think the man whose car I avoided crashing in to thought I was a child because of the massive grin on my face (if you watch vid you’ll see what I mean). It was exhausting and exhilarating, and because I enjoyed it so much we did it all again yesterday, but instead of a short ride in a derelict car park we took to the canal tow path and successfully avoided dogs, pedestrians, children and cyclists for a three-mile ride which left me shattered and feeling like I’d been sat on a sharp rock for the rest of the evening (ouch) – I didn’t however feel half as bad as Andy who ran alongside me.

Next step…light jogging, but I’m going to give it time and invest in some mega supportive underwear!!!

If you have a stoma or Crohns/Colitis and exercise and have any tips please comment below…