If I rewind back to early 2018, I was embarking on a time of running to the toilets, feeling lethargic, feeling like I was forever having a fever, this was Crohn’s Disease reminding me that it was still there and trying to treat the flare up with the usual treatments of steroids and Humira injections would prove to be futile.

I was faced with either the option of experimenting with alternative, perhaps not fully-tried and tested treatments, or electing to have surgery. I elected for the latter although I did discover post-surgery that most people with Crohn’s Disease in the tail end of the bowel continue with treatments rather than surgery.

I found it to be an easy decision to make and convinced myself that it would be the best decision out of the two but looking back, was it? Let’s have a look at what I thought would happen, and what actually happened.

What I Thought Would Happen

  • Have the surgery on January 15th
  • Expect to wait 8-12 weeks before exercising as normal
  • Largely forget that the bag is there

What Has Actually Happened

  • Had the surgery on January 15th
  • Infection immediately post-surgery results in perineum being opened to drain infection
  • Start of the daily visits to a nurse to dress the wound
  • One wound becomes two with the reemergence of an old pilonidal sinus
  • Wound becomes infected on numerous occasions
  • After around 8 weeks manage to start running again
  • Wear a hernia belt during exercising to prevent a hernia from appearing
  • Parastomal hernia appears and now have to wear a belt permanently
  • Running increases and manage a few races
  • Area becomes infected a few times
  • Down to seeing a nurse 5 days a week
  • Double infection in Ken Butt and discomfort results in examination under anaesthetic to see what’s going on
  • Advised not to run from July as a precaution until MRI determines extent of wounds
  • Back to dressing changes 7 days a week
  • MRI scheduled for September 1st
  • Follow up appointment scheduled for October 1st
  • Current status – both wounds leak exudate and small amounts of blood. Perineum wound sore.
  • Outlook – unclear!
My weekend supply kit

I don’t think the first list is that unreasonable to believe and even though I haven’t listed the potential complications of the surgery, usually things tend to go well with perhaps just some minor complications. But the fact I’ve been plagued with Crohn’s Disease meant that I could also be unlucky enough to experience some of those complications.

What I’m Finding Hard Right Now

The Ken Butt Wounds

The obvious difficulty is the ongoing issue with the wounds. When the surgeon removed a couple of the stitches in my Ken Butt a couple of days after surgery, all I thought about was how the infection that was keeping me in hospital would be dealt with and I’d be able to go home. I didn’t contemplate how removing 2 or 3 stitches would result in months and months and months or regular visits to nurses at the GP surgery or home visits by the district nurse.

Visiting the nurses at the GP surgery every weekday for 7 months has meant that I’ve got to know them well – all 5 of them, as well as the reception staff. They’ve been good to me in ensuring that I always have the earliest possible appointments so that I can get to work and it’s become routine for me. And therein lies part of a problem. Routines can be good and they can be bad, and having that routine of visiting a nurse day in, day out for me is not good.

The Hernia

Who wants a hernia? Not me. But I’ve got one. It’s there, it’s sizeable, and it’s unlikely that anything will be done about it. Frustratingly, I wonder whether there was a chance of it being prevented. I was aware that I should wear a hernia support belt during exercise but in the early months post-surgery I’m wondering whether I should have been wearing one to prevent a hernia from appearing.

The hernia support tube I started with. It’s not been superceded by a larger belt.

I didn’t receive one until many, many weeks post-surgery when I was starting to run again but was it too late? Some time after I started wearing the belt the hernia appeared and grew to be the size of a tennis ball.

Now, instead of wearing a support belt just for running and working out, I’m having to wear one permanently, and that introduces a new set of problems. A support belt is designed to be tight so that it keeps the hernia in but the belt covers the colostomy bag which results in the output from the stoma from having little option but to start pancaking. As that ‘pancake’ gets bigger and works its way through the adhesive in the baseplate, that’s when odours start to escape. Being in an enclosed meeting pod with work colleagues on a conference call, the smell emanating from a pancaking colostomy bag can be quite embarrassing.

Then there’s the appearance. Without a support belt the hernia allows the colostomy bag to protrude through clothing and with a support belt you get the lumpiness of it showing beneath your clothing. You can’t help be conscious of it and when you’re conscious of it, you’re always thinking of it. And when you’re thinking about it, you’re not forgetting about your stoma which your stoma team are eager to encourage.

The Lack of Running

During the Crohn’s flareup in 2018 I had to stop running, not because the flareup directly prevented me from running but because indirectly I struggled to run due to the side effects such as having no energy or constantly needing to use the toilet. I made the conscious effort to stop running and during this time I was thought about whether I would be able to get back into running after surgery. Thankfully I did but now I find my self in the same position. My stoma team has advised not to run whilst waiting for the results of an MRI scan just in case I inadvertently make things worse.

The start of getting back into running which unfortunately was short-lived

This means that I have to take a break from running until potentially October but maybe longer. And this is hard. I loved running. I loved planning my runs, getting out there to explore new trails and document my runs, I used to enjoy the feeling you get from completing a run or accomplishing a particularly challenging run but now all of that has stopped. I’m still keeping active through walking but I’m missing all the benefits that running brings. I know it’s only a matter of time before I can get back into it but mentally that doesn’t make it easier.

Not Knowing What’s Next, But Also Knowing What Could Be Next

In the early days of my wound management I was regularly frustrated by not knowing what the future held. When asked what would happen if my wounds didn’t heal, responses were essentially a shrug of the shoulders and ‘it depends’ or these things take time. I can recall seeing a specialist in May and not being given a definitive answer as to what was next. I was told that it could be many more months before it would heal but here I am months later and the wound is still not healed and were I to ask again I would no doubt be given the same answer.

After my recent examination under anaesthetic, I learned more about the options that would be available to explore but those options aren’t necessarily what I wanted to hear. Worst case scenario was that the Ken Butt would need to be reopened and allowed to heal with the aid of a VAC dressing through to the best case scenario or continuing with the daily dressing changes and hoping that it heals on its own.

In one hand I’m glad that I have some sort of roadmap but on the other hand, I’m not due to see my specialist until October which means a long wait to discover what’s next and then knowing that I could have to embark on another wound management journey.

How Is All This Affecting Me?

When you do something for long enough, it becomes the norm. And when that norm involves daily inconvenience, discomfort, infections, impromptu surgery, trouble sleeping, depression, leakages, dealing with a hernia and not being able to do some of the things you enjoy, then that’s not healthy.

There’s the inconvenience of seeing a nurse everyday and recently having to stay in again on weekends for a district nurse (you’re not given a specific time or even a window).

And then there’s the constant reminder of the presence of the wounds either by the discomfort or the sensation of exudate and blood leaking from them when sitting down or the soreness when sitting down or the face that I have to wear panty liners on my underwear to catching whatever the dressings don’t catch.

And then there’s the constant thinking about it. From the second I wake up until the moment I go to sleep, it’s always on my mind, and that can’t be healthy. There are distractions throughout the day but when you’re sitting with someone and you feel that leaking sensation your mind instantly switches to hoping that you haven’t leaked on the chair.

And then there’s the hernia – which I have already been told that nothing would be done at this time. If I’m already constantly thinking about the wounds then also being constantly conscious of the bulge beneath my t-shirt, and not to mention the odour that could emanate from my colostomy bag due to the support belt, then this also can’t be healthy.

And then there’s being unable to plan activities such as weekend breaks and holidays. I’ve already lost money by booking trips and then having to cancel due to the issues I’m experiencing so there’s little point in planning any more. I find planning trips so enjoyable and then there’s the looking forward to them which works wonders for the mind so when that’s removed it can effect you. I was experiencing the same issues when I was suffering from Crohn’s flare ups and had hoped that I would have been able to return to normal post-surgery.

And then there’s not being able to sleep properly due to constantly thinking of the problems I’m currently experiencing and wondering when I’ll be back to ‘normal’.

And then there’s nothing able to run. That’s a big one for me and its brief return was a boost for me but having it taken away again was a kick whilst I was down.

And all of that combined makes it a struggle. I know I’ll eventually get through it but that doesn’t make getting through it any easier.

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Diagnosed with IBD in 2002, I have experienced the usual ups and downs of having a chronic disease and tried numerous medications but the time finally came in 2018 to elect to have surgery to improve my life.

This post has 4 Comments

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  1. Sorry you are going through the mill. I spent over a year waiting for Barbie But to heal even with a VAC but the VAC are amazing and definitely speeded the process up. Not most comfortable , but the daily wound dressing institutionalises you and you really become a professional patient which I hated. I have a permanent colostomy which is ok so far 2 yrs in, doing my abdominal exercises a bit fingers crossed no hernia. YES it does need with your head but it will eventually heal – baby oil really helps pancaking – but yes tight belt might negate it. Best if luck

    1. I like that term Professional Patient, it seems very apt! It’s so frustrating how long these things take to heal. At this stage not sure if they will go for the VAC or continue to try and let it heal. Would definitely be willing to try one out. I hope mine doesn’t take a year to heal I wouldn’t be surprised if it did 😕

  2. Hi there Robert, I’m so very sorry that you’re going through all these complications. I was very inspired by you when I had my colostomy and Barbie butt 3 months ago. It’s not been as straightforward as I imagined either. I felt great after my surgery and a week in hospital, however about 6 weeks later I developed a painful bacterial infection, which resulted in another week in hospital on intravenous antibiotics. The infection hasn’t cleared up completely, I still have a painful bottom, and the surgeon mentioned that the infection could come back again. Great!
    I’m now wondering if I’m getting a hernia as I have a dragging feeling in my stomach.
    You’re so right, it’s hard getting through this, I naively thought I’d gradually get better but it sometimes seems one step forward and 2 back.
    But I wish you all the best, and really hope things improve for you. I think you’ve been through enough for now, and deserve a break from it all. You still seem amazingly positive though in spite of all the setbacks. I look forward to hearing some good news from you soon. Best wishes to you X

    1. Hi Rosie

      Sorry to hear about your infection, I was fortunate enough not to have to go back to hospital to sort mine out, although it’s a pain continually having them. It’s a shame that we both got off to a good start and then went downhill. I do get an odd feeling kind of like how you describe but I hope that it’s not a hernia.

      It is hard keeping positive for so long when it’s hard to see an end in sight. Just hope that it doesn’t continue into next year.

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