Menu Close

A Bit Gutted

I’ve been wanting to write this post for a couple of weeks now, but to be honest I think I’m still coming to terms with the reality of it myself. After Thursday the 7th of February, I won’t be able to poo. Well, that’s not entirely true, but I won’t be spending 2 hours a day on the toilet, as I’ll officially have a stoma.

I think everyone has kind of seen this coming, but now that it’s booked and I’ve had time to overthink it all, everything feels very real. Don’t get me wrong, I believe this is the best option for me now. My symptoms are getting worse by the week – the pain, urgency, frequency, blood, nausea, fatigue- to the point where even part-time work is becoming a challenge, and my social life is essentially non-existent. My risk of bowel cancer increases every day it stays in there, increased by the medication I’m on to stop me rejecting my liver. But despite knowing that this is my only realistic choice to have the quality of life I want, it doesn’t do much to calm my anxiety.

Basically, I’ll have 3 operations this year to improve my condition. The first will be to remove the majority of my large bowel and create a stoma (I like to think of this as a belly butt). After some time to heal, the second will remove the remainder and create what’s called a J-Pouch out of my small bowel (I’ll go over this in a little more detail in another post – because who doesn’t love hearing about my guts?). Again, after some time for my body to recover, the third operation will close the stoma, allowing me to poop like a real boy again (…kind of). The goal is to have all of this done within the year.

What this means is I’ll have a bag stuck to my belly which my stoma will empty into. At first, this was by far my biggest fear. The risk of leaks, the whole body image thing, the constant changing and emptying of the bag, blah blah blah. Now though, it’s the thought that after a year of hospitals, recovery, and sphincter tightening exercises, my best case scenario still feels like I’m coming up short.

Without going into it too much, the J-Pouch procedure will give me some control back without relying on an external bag. However, I’ll still be going anywhere from 5-8 times a day, can have issues with internal leaks, blockages and infections, and will need to be much more conscious of my food and fluid intake. All of this is a huge improvement on where I am at the moment, but I think what I find difficult is that this will become my new normal. I know I’ll get used to it, even just speaking with the stomal therapy nurses in pre-admission today helped allay some of my concerns about my year with a bag. It’s just going to be a very educational year and I expect I’m going to get very comfortable with poo.

Thank you to all the people who’ve been there for me, especially throughout the last 12 months or so. This post-transplant journey has been a little rockier than I expected, but your support has helped immensely. I do have to give a huge shout-out one person inparticular, who has been by my side since the minute I met her. Eden, you’ve pulled me out of some horrible places and no one should have to take care of a partner the way you’ve taken care of me. You’re incredible.

I’m sure I’ll have more updates soon. Thanks for reading!

9 Comments

  1. Leisa

    I know of a few others after transplant that have gone this way too Chris. If you want anyone to chat with let me know as I know they would be happy to. Thinking of you.

    • Chris

      Thanks Leisa, that would be great! My surgeon actually put me in touch with one of his previous patients and we met up over the weekend. It was so good being able to talk to someone who has been through it. I hope Jordan is still doing well and you all had a great Christmas and New Year šŸ™‚

  2. Claire Vasper

    You are incredible Chris and I hope with all my heart this makes your life somewhat more bearable. Eden, thank you for being there for my gorgeous nephew. Xxxx

    • Chris

      Thank you Claire, I’m really just putting it all on for a few weeks of free food and some mind bending drugs. Might not be the easiest plan, but it’s effective.

      Also, you should make this an excuse to come back over šŸ˜‰

  3. MLACS

    Dude, the bag is no big deal. It’s scary, but I woke up from surgery feeling 100% better than I had in years and the bag has not cramped my style at all–I can do WAY more now than when I was sick and the bag is not hard to conceal–nobody knows unless I tell them. Go on facebook and look for a group called “Ostomy lifestyle athletes”–they are a group of fun and friendly badasses who do competetive sports with ostomies. I’m not even going to bother with the j-pouch–too many surgeries and likelihood of complications. Also myself and a lot of people really like the coloplast sensura mio 2-piece bags, which are comfy, versatile and discreet. But you’ll get plenty of samples to see what you prefer. Ask your surgeon for a really nice, permanent stoma (not a loop, they suck) in case you like the bag and want to skip the pouch. With the bag I’m off all meds and no worries about continence, etc.
    XOXO,
    MLACS

    • Chris

      THanks MLACS, that really helps! I’ll check out the Ostomy Lifestyle Athletes page for sure, it would be awesome to see people living a regular life with an ileostomy. Speaking with the stoma nurses yesterday helped so much too, with the number of patients they see it was so reassuring to hear from them.

      I’m hoping I can cut down my meds quite a bit. My transplant meds are super easy, but the melsalazine and pred gets old. Thanks for all the help MLACS and I hope this year is a little easier on you than the last one.

      All the best!

  4. Chris shepherd

    Hi mate, you are such a inspiration to others. You are able to remain so calm and considered through out this journey, although you must have your moments and rightly so. Iā€™m not a religious man Chris, but I regularly say a little prayer for you incase Iā€™m wrong and there is a higher authority. One thing for sure is all the shepherd love and support you always. I hope the year will go smoothly for you mate. Best of luck!! Chris, Naomi and family

    • Chris

      Wow Chris, that means a lot. Thank you. I definetely have my moments, or weeks haha. I think about you guys a lot and hope you and Naomi are doing great up your way! Hopefully I’ll get a chance to catch up with you all at some point this year. All the best guys!

  5. Jason

    Hey Chris, It sucks that you are you are still on the journey towards recovery. I have read your posts and been inspired by how you face these challenges. As you know I shared the early transplant journey with you but my situation has stabilised now.
    Your blog continues to be an awesome source of information for those on the same journey. The way you cope and the way you talk about it is inspirational. You are a strong man and I am sure you will laugh in the face of poo, and probably cry a bit as well ā€“ both are necessary.
    Thank you for sharing and I wish you a good year moving forward.

Leave a Reply

Your email address will not be published. Required fields are marked *