Yes, I know it's a bit weird, but I just felt like writing this down. Back in September/October 2013, I had a very severe flare-up of what I was then diagnosed with: ulcerative colitis. Only a few days after this, 2nd November 2013, I had my emergency subtotal colectomy. After all the days of painful, bloody diarrhea, I really didn't miss pooing, I was just relieved that I was no longer in pain and rushing to the toilet every 5 seconds (well, more like hobbling than rushing, but you know what I mean!). Pooing was definitely not missed.
Fast forward to 11th September 2014 (yes, it was the 9/11 anniversary, and also the exact same day Oscar Pistorius - the South African Paralympic sprinter who got convicted of murdering his girlfriend, Reeva Steenkamp - got his verdict. While he was in court hearing what his verdict was over in South Africa, I was unconscious on the operating table over in the UK). Anyway, 11th September 2014, that's when my surgeon created the j-pouch, and my end ileostomy turned into a loop ileostomy. Fast forward again to about 6/7 months later, it's April 2015, and my stoma got connected to my brand new j-pouch. I'd had the reversal, woooo! It felt great to be able to poo normally again. I thought it would feel weird to be doing that again, but I guess it's like riding a bike, I just got straight into the routine of it.
Unfortunately, by the start of 2016, I was one of the unlucky 25-50% who started getting pouchitis, inflammation of the j-pouch. But for me, it was worth it because what I've since realized is that due to everything being so sudden back in 2013, I had really resented my stoma. It represented my life changing forever, for me it was the physical manifestation of my life never being normal again. But while all that negativity surrounded my feelings towards my stoma, I could also appreciate how it quite literally saved my life. One of the surgical team told me after that first operation that my colon was crumbling in their hands as they were taking it out. So if they had done my surgery even one day later... well, I don't really like to think about that particular "what if?". Needless to say, I was extremely unwell before the surgery.
From April 2015 - 3rd March 2022, I had a j-pouch. From 2016-2022, I had chronic pouchitis, and I was antibiotic dependent. My pouchitis was, of course, diarrhea and increased urgency, and sometimes blood and/or mucus as well. But the main overriding symptom, at least for me, was feeling so incredibly tired and lethargic. By 2020, I was also on biologics, which are a type of immunosuppressant just in case you're unaware of what I'm talking about. They basically suppress the immune system to suppress the body's urge to cause inflammation. I was initially on infliximab (if you're in the US you might recognize its brand name, Remicade). I then had to stop the infliximab infusions because my body was flushing out the drug through my urine, clearly my immune system didn't like suppressed. My initial consultation with my surgeon was in early January 2021, that's when he put me on the waiting list for proctectomy surgery - the infamous barbie butt surgery! Then of course my pouchitis symptoms came back so I then started adalimumab (some people might recognize its brand name, Humira). With the adalimumab (say adda-LIMMA-mab), I got some side effects from that. The psoriasis I also experienced during the infliximab days came back. It was only with the adalimumab that I connected the dots with that one coz my grandfather had psoriasis so I naturally assumed I'd inherited it. Nope, just a medication side effect! Oh, and I also was experiencing hair loss as well. Obviously, these two things distressed me a lot, so I then stopped the adalimumab as well.
Finally, over a year after being on the waiting list, 3rd March 2022, I finally had my proctectomy - anus and rectum removal. It took so bloody long to get around to it because a certain pandemic-that-must-not-be-named meant that during the 2020 lockdown no non-urgent surgeries were being done. I've heard estimates that the NHS waiting lists won't look like anything even remotely resembling pre-pandemic normal until about Spring 2024!! I remember going to the toilet (yes, for a poo!) while on the surgical admissions unit waiting for my turn to go and be operated on. While I was in the bathroom, I distinctly remember thinking to myself, "is this my final poo?" Fast forward 45 minutes to an hour, and I'm in the operating theatre hunched over a pillow while one of the anesthetists (anesthesiologist if you're American) inserts my epidural into my back, and I distinctly remember answering that earlier thought with another one - "yes, that was my final poo!" So I now have a clear memory of the time I did my last ever "normal" poo.
One of the healthcare assistants (the UK's version of CNA in the US) on the ward named my stoma. My drain was my Gucci handbag, my catheter was my Versace, and by the time it was removed my morphine pump was Givenchy. So after telling the healthcare assistant all this, I asked her, "so what should my stoma be?" She paused for a second, then said, "Michael Kors?" in a questioning tone. So I paused for a second, then replied, "yeah, why not? It's as good a name as any!" So that's why I now call my stoma Michael.
But back to the title of this post. Of course, I had pouchitis poos quite a lot. But I also had normal poos quite a lot as well. Enough that I would sometimes pass one of those really, really, really, really, REALLY huge ones and feel so light-as-a-feather after it that I felt like I would be able to fly. That's the feeling I miss. On the other hand, that feeling also means still having pouchitis, which I'm SO glad I no longer have. With Michael at my side (on my stomach), and flanked by some newfound friends on MAO, I can embark on this new chapter of my life. If you've made it this far, thank you for reading all my rambling with about twenty thousand tangents. Or is it one great big long tangent with a few smaller ones dotted here and there? Like this one I'm typing right now? Lol Have a cookie to celebrate! The virtual cookies are gluten-free, though - I'm coeliac as well. Found that out maybe a month before my UC reared its ugly head. And to be inclusive, I'll make them dairy-free as well.
Oh, and Happy Easter! May chocolate be tasty and all stomas and j-pouches/whatever-reversal-you-had cooperate.
PS - wow, this is LONG. I typed for bloody ages!
Fast forward to 11th September 2014 (yes, it was the 9/11 anniversary, and also the exact same day Oscar Pistorius - the South African Paralympic sprinter who got convicted of murdering his girlfriend, Reeva Steenkamp - got his verdict. While he was in court hearing what his verdict was over in South Africa, I was unconscious on the operating table over in the UK). Anyway, 11th September 2014, that's when my surgeon created the j-pouch, and my end ileostomy turned into a loop ileostomy. Fast forward again to about 6/7 months later, it's April 2015, and my stoma got connected to my brand new j-pouch. I'd had the reversal, woooo! It felt great to be able to poo normally again. I thought it would feel weird to be doing that again, but I guess it's like riding a bike, I just got straight into the routine of it.
Unfortunately, by the start of 2016, I was one of the unlucky 25-50% who started getting pouchitis, inflammation of the j-pouch. But for me, it was worth it because what I've since realized is that due to everything being so sudden back in 2013, I had really resented my stoma. It represented my life changing forever, for me it was the physical manifestation of my life never being normal again. But while all that negativity surrounded my feelings towards my stoma, I could also appreciate how it quite literally saved my life. One of the surgical team told me after that first operation that my colon was crumbling in their hands as they were taking it out. So if they had done my surgery even one day later... well, I don't really like to think about that particular "what if?". Needless to say, I was extremely unwell before the surgery.
From April 2015 - 3rd March 2022, I had a j-pouch. From 2016-2022, I had chronic pouchitis, and I was antibiotic dependent. My pouchitis was, of course, diarrhea and increased urgency, and sometimes blood and/or mucus as well. But the main overriding symptom, at least for me, was feeling so incredibly tired and lethargic. By 2020, I was also on biologics, which are a type of immunosuppressant just in case you're unaware of what I'm talking about. They basically suppress the immune system to suppress the body's urge to cause inflammation. I was initially on infliximab (if you're in the US you might recognize its brand name, Remicade). I then had to stop the infliximab infusions because my body was flushing out the drug through my urine, clearly my immune system didn't like suppressed. My initial consultation with my surgeon was in early January 2021, that's when he put me on the waiting list for proctectomy surgery - the infamous barbie butt surgery! Then of course my pouchitis symptoms came back so I then started adalimumab (some people might recognize its brand name, Humira). With the adalimumab (say adda-LIMMA-mab), I got some side effects from that. The psoriasis I also experienced during the infliximab days came back. It was only with the adalimumab that I connected the dots with that one coz my grandfather had psoriasis so I naturally assumed I'd inherited it. Nope, just a medication side effect! Oh, and I also was experiencing hair loss as well. Obviously, these two things distressed me a lot, so I then stopped the adalimumab as well.
Finally, over a year after being on the waiting list, 3rd March 2022, I finally had my proctectomy - anus and rectum removal. It took so bloody long to get around to it because a certain pandemic-that-must-not-be-named meant that during the 2020 lockdown no non-urgent surgeries were being done. I've heard estimates that the NHS waiting lists won't look like anything even remotely resembling pre-pandemic normal until about Spring 2024!! I remember going to the toilet (yes, for a poo!) while on the surgical admissions unit waiting for my turn to go and be operated on. While I was in the bathroom, I distinctly remember thinking to myself, "is this my final poo?" Fast forward 45 minutes to an hour, and I'm in the operating theatre hunched over a pillow while one of the anesthetists (anesthesiologist if you're American) inserts my epidural into my back, and I distinctly remember answering that earlier thought with another one - "yes, that was my final poo!" So I now have a clear memory of the time I did my last ever "normal" poo.
One of the healthcare assistants (the UK's version of CNA in the US) on the ward named my stoma. My drain was my Gucci handbag, my catheter was my Versace, and by the time it was removed my morphine pump was Givenchy. So after telling the healthcare assistant all this, I asked her, "so what should my stoma be?" She paused for a second, then said, "Michael Kors?" in a questioning tone. So I paused for a second, then replied, "yeah, why not? It's as good a name as any!" So that's why I now call my stoma Michael.
But back to the title of this post. Of course, I had pouchitis poos quite a lot. But I also had normal poos quite a lot as well. Enough that I would sometimes pass one of those really, really, really, really, REALLY huge ones and feel so light-as-a-feather after it that I felt like I would be able to fly. That's the feeling I miss. On the other hand, that feeling also means still having pouchitis, which I'm SO glad I no longer have. With Michael at my side (on my stomach), and flanked by some newfound friends on MAO, I can embark on this new chapter of my life. If you've made it this far, thank you for reading all my rambling with about twenty thousand tangents. Or is it one great big long tangent with a few smaller ones dotted here and there? Like this one I'm typing right now? Lol Have a cookie to celebrate! The virtual cookies are gluten-free, though - I'm coeliac as well. Found that out maybe a month before my UC reared its ugly head. And to be inclusive, I'll make them dairy-free as well.
Oh, and Happy Easter! May chocolate be tasty and all stomas and j-pouches/whatever-reversal-you-had cooperate.
PS - wow, this is LONG. I typed for bloody ages!
