Life After Disease: Embracing a New Normal and Building Relationships

Nov 02, 2014 3:39 pm

Hey, I've been thinking about writing something like this post for a long time, so my apologies if it seems confused occasionally. It's been milling about for a while. Extra info, I'm a 26-year-old guy from London, my last surgery was 2 years ago.

I was told about this site about 4/5 years ago when the prospect of getting a temporary stoma was inevitable, and since then I've checked back occasionally but I don't remember ever posting. In those 4 or so years, a lot of things have changed. The temporary stoma was not effective, and after one last trial, my protests to having the stoma made permanent eventually wore away and I had my large bowel totally removed. The surgery wasn't entirely straightforward, I was a mess going in, and some complications afterward resulted in another bout of surgery 6 months down the line. This 6 months was the hardest I've had.

Diagnosed with Crohn's at 12 (and still not entirely sure how to spell it without checking online at least twice) I went through every treatment and trial, and about 5 surgeries prior to the removal of the large bowel. I've lost periods of my life, periods that were so similar in the routine of being sick and inactive that they vanished completely from memory and experience. To this day I don't remember the exact number of surgeries I've had.
And this 6 months was the worst. Ever since my diagnosis 12 years before I'd seen having a stoma as a defeat, something to be avoided at all costs, the thought of having a visible reminder of the disease horrified me. I was afraid it would define me as the sick guy and so it became something that I fought against almost as much as the disease. It became a line that I was unwilling to cross.

After having the temporary surgery I gave up on romantic pursuits entirely, one faltering attempt at explaining what it was while slightly drunk was enough for me to know that this road was now closed. Posts on this site didn't help at all. In most places I looked I found people who were confused, lonely, and asking for help that came back in the form of platitudes like 'if they don't love you with the stoma they aren't worth your time' etc. I'm not saying this is wrong by the way, but it felt too generic to be applied to this. This situation that is unlikely to appear twice in a close circle of friends, that people you've known for years don't know what to say or what to think about it, and to this situation you're going to apply Hallmark standard life lessons. I think not.

Side note. When I first met a stoma nurse I was heading into my third year of Uni, when we sat she gave me some profoundly depressing pamphlets about relationships when one person has a stoma. She then asked me if I'd told my girlfriend that I was going in for this surgery. 'No girlfriend here' I replied. What followed next was the kind of sound that you fear hearing on the plane tannoy, that softly muttered 'oh...' that implies a life of loneliness or at the very least an unexpected mountain.

So, 6 months, with one stoma, 3 open fistulas running vertically in a 10 cm stretch and an open wound following the removal of the anus. All of these were draining constantly, and those 6 months became a cycle of cleaning, catching sleep where possible, and painkillers which served mostly to add a psychedelic edge to proceedings. This coupled with the certainty that what followed would be a life alone attached to this thing I'd fought for years. It wasn't a prospect I was looking forward to.

Eventually the surgery was successful, and things started to clear up. Fistulas were closed, the wound at the back eventually stopped leaking, and it was time to start considering life without a bowel.

And here's the thing. After all that's done, then what the hell do you do? What do you do about work, education, life experiences, relationships? What do you do about missing years, the time you've lost?
The health service provides for you to get into a position where you can live, but after a period where a substantial part of your existence contains a disease then what do you fill that space with, do you fill it at all? I'm still guilty of going into slightly too much detail when it comes to describing my story with the disease, and this used to be because I wanted people to give me a hand, I wanted someone to have something to say that would make things easier for me, I wanted a platitude that works, a soundbite I could take and apply, like finding a key which fits perfectly and takes away that pain and gives a map for being alright again.
Shockingly, it never happened. No one popped up with that little titbit of wisdom. And that in itself bolstered my fear of there being no solution.

Here's where I had a problem with this site, and I imagine where I'm going to piss a lot of people off. If you're scared and you come to this site you're faced with some really terrible experiences, and for those people I'm sorry that things are shit, and I hope that you'll pull through it. I remember visiting this site for the first time and being overcome with loneliness and despair (because occasionally I can be a dramatic tit), here I found people who had lived with these problems for years, and who were not coping well, and the bonding I saw was mostly through suffering. That's not to say that happiness and support don't happen at all (looking through this site this afternoon things seem to have taken a turn for the more practical, but that might be because I'm a bit more objective now) Not many people come here in the first place with a song in their heart and a skip in their step and they get to see their fears reflected perfectly.

After the 6 months of aggravation and the final surgery I needed to work out what the hell I was going to do, having an active disease had been a huge part of my life and it left a hole, I had a lot of extra time now, maybe even more than the time that I'd forgotten, and I'd made myself so many promises of what I'd do after I was done with the disease that I felt like someone bursting out of a dark complex into a desert, unprepared for a new set of challenges and blinking in the light.
It was fucking scary. I didn't know who I was without the disease, not totally.
However I could do some shit that wasn't possible before, I could jump a train into London without worrying about being overwhelmed with pain and a blood-boiling need to find a toilet immediately. After a few months I could start going to the gym and although the novelty of that wore off at the induction I still paid the first month's fee safe in the knowledge that I had the option of being sweaty in a public room. I started writing, I looked up courses online, researched jobs and took a week to realize that I'm truly shit at drawing.
You'll have all noticed how flexible your minds are, how, after a surgery, or a change of treatment, you'll adapt to your new reality and just get along. It works both ways, good and bad, the bag was normal at this point, I didn't give it a second thought anymore. I had a few problems with flooding and dehydration but after learning about jelly babies, marshmallows and Dioralyte that became a non-issue. So I had a chance to fill my life up, and I filled it with me. I filled myself out and started to just do things.
There was still one thing though, something I knew wasn't an option but that I was committed to trying again.

About 4 months after the surgery I met someone through a mutual friend. I was dreading her reaction to what I had to say. I sat in a pub in Greenwich and I again told a girl that I had this thing, now completely aware that, unlike I had hoped previously, I was going to have this attachment for the long haul. After a breath I launched into the extensively rehearsed, briefest possible version of events which culminated in 'and now I have this bag, like the old people have, and I'll have it for good', and her reaction was to pause, gesture to sit closer, and then kiss me.
I asked her about that afterwards, and she said that someone who had dealt with that deserved credit, not dismissal.
That relationship ended about ten months ago although we're still friends, since then I've traveled to Italy to teach English, I've been with other people, from different places in the world and not a single one had a problem with the bag. From long-term relationships to one-night stands I've never had anyone throw me out or run away because of the stoma.

I have had people before this run away because I was a guy with a disease. Not because I had the disease but because I saw myself as someone with a disease, someone who should put off relationships until the condition was dealt with, who in conversation was waiting for the terrible moment where (often without prompting) I'd feel the need to confess to having a disease, for being unlucky and having shitty health, apologizing for it and needing someone else's permission for it not to matter. I let it define me.

Chances are if you're here you've dealt with stuff that your friends can't imagine, stuff that's pushed you to your limits and broken you over and over again. And you're still here. And that, that's the thing, that's the reason you'll be fine with relationships. You've seen some shit, you're capable, and you're able to experience joy with the full knowledge of what misery can be.

I've not encountered anyone who had a bad reaction to the bag, but if that does happen, then fuck that person. Who the fuck gets to say that this thing defines me? People here have seen more of life than anyone making a sharp judgment about what is normal and what life is and that makes you amazing, don't apologize for it.

Now when I tell people about my disease or the bag it's because it's a cool story, I've done all this crap and I'm still me, I'm proud of it. And I hope you are too.

Whatever happens from now is down to you.

Nov 03, 2014 5:04 am

Hi Chinaski. Your post was long overdue and will immeasurably benefit not only the young people who visit this site but many of us old timers who will draw strength and inspiration from your reflections. You raise a great question about dealing with lost years and I suspect you are now turning that experience into the right groundwork for a most promising future.


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Nov 03, 2014 6:02 am

I have nothing to say. Just wanted to give you a big, warm, long hug. Thanks for sharing your thoughts.

Nov 04, 2014 8:39 pm

This is one of my favourite posts I have read since I have been on this site. I think it's incredibly brave to write this and must have taken a lot of courage. I'm pleased it has a somewhat happy ending. I haven't personally had the confidence for relationships since my operations so nice to know that someone out there in a similar situation has had the same reservations as me and overcome them.

Nov 05, 2014 12:35 am

Hey Chinaski, thank you.  You've done us a great service.  I think lots of folks will take the time to digest your thoughts and they'll feel differently in a good way.  Some will tell you how much they appreciate your message and some will just appreciate quietly.  Please don't stop sharing.

With sincere gratitude,


Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
Nov 05, 2014 4:50 am

Thank you for your story and I can tell you, having anything to do with being cut open, I was a might have this thing called a stoma. No clue, no internet, no help 20 years ago (I think). After 9 surgeries, I think also, the ride has been so long and the years go so fast and so slow. I understand your story and I'm sure most people with, for me I guess, ulcerative Crohn's. And yes, never could spell it and many times I asked, well, is it Crohn's or ulcerative Crohn's? Never any real answers, never really informed. I love your honesty and yes, this is a great site to vent, to get it out. The first step to blog or write your story is always a little scary, but now I'm such an old hand and still spelling mistakes. I admire you, I admire most people on this site. Great word, I hear your story not far from my own....

Well done, well said. *claps my hands* to you and I really hope that life with these (cherrys) lol have and will remain weird, strange but somehow a friend. Not always a nice friend, but a friend I guess. Cheers to you and everyone who is battling this rotten disease and very misunderstood at times, especially the "oh if you eat this food you'll be cured" blah blah. Thanks for your words and I wish you the best, matey. MOOZ Australia

Nov 05, 2014 4:52 am

PS just seen my crazy typos. Yes, I'm back! Lol. No time for fixing those as these painkillers make me cross-eyed. Cheers.