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!
Sorry for the extra long post, I didn't realize just how long it would be until I hit the publish button ????
Why Join MeetAnOstoMate?
First off, this is a pretty cool site with 33,458 members. Get inside and you will see.
It's not all about ostomy. Everything is being discussed.
Many come here for advice or to give advice 🗣, others have found good friends 🤗, and there are also those who have found love 💓. Most of all, people are honest and truly care.
Privacy is very important - the website has many features that are only visible to members.
Create an account and you will be amazed.
Learn about special travel considerations for your ostomy type, so you can be worry-free.
Just to let you know, that's the first extremely long post I've read on this site. LOL. I usually lose interest after about 2-3 sentences as most turn into just babbling to be babbling. Hopefully it all heals up for you and you can put all the sickness behind you once and for all. BTW, millions of people would love to have an ass like Barbie has, she is the poster woman for perfection supposedly. So, you having a Barbie Butt must mean yours looks pretty damn good too, congrats. Happy Easter and enjoy the new chance at life.
Wasn't long at all, probably helps to get the right answers from the many knowledgeable folks here. All the best wishes.
Loved every word of your post! Very educational, entertaining, and clever. Glad you are part of our rather exclusive club, Meadow!
And Happy Easter to you too!
Terry
Loved reading your post, you say it how it is and don't mince words. That's what I like to read. Hopefully you are well on your way to better health. XX
I also enjoyed your post! Never shorten your thoughts as we are hungry for experiences akin to our own. It was much easier to read as I'm more sober now. I will let you know how the old-fashioned way goes.
I rarely get around to logging into the site. And I rarely read long posts, but your title got my attention and I read every single word. Thanks for sharing your story. I was diagnosed with UC in September 2014... yada yada yada... ileostomy since Halloween 2019. Barbie butt since May 2020. But it was just a few days ago when I first realized one downside of not spending so much time on the toilet... I don't miss the pooing necessarily, but I don't have nearly enough time to read all my product bottles in the bathroom. LOL. I got a new bottle of lotion and I was in a hurry and thought that if I only had to poop I'd find time to read the details on the bottle. LOL. :-)
Funny, you're talking about pooing! For several years after I got my colostomy, I'd dream of pooing on the toilet!
Loved reading your post. I had a J-pouch for twenty years, and now have an ileostomy. I hardly remember pooping normally! You have an engaging writing style - maybe start a blog :)
Thank you everyone for so many kind words, I really wasn't expecting that! I really love that we can share our stories on this site and everyone will listen ????????????????
I also miss pooping. I was supposed to have a tumor removed, but it didn't work out that way. Then my doctor said it's temporary. First, I have chemo. It shrinks, and I'll remove it when the chemo is done. The doctor asked me what I was told. I explained that the doctor said chemo will kill the spots on my liver and lung, the tumor will shrink, and then they will remove the vag, and I'll be pooping again. She told me I was misinformed. I have stage 4 cancer. I take chemo, which gives me maybe 4-5 years. Without chemo, 2 years. I asked, so either way, I'm going to die? She said yes. For my family, I'm doing chemo. Do I like it? No. Am I having a hard time? Yes. Surgery was on March 14, 2022. I'm 76 years old. I've lived 76 years. I want to be around to see my 4 grandkids graduate universities. Will I? Highly doubtful. Was this preventable? Yes. I didn't get a colonoscopy when I should have. Do I have regrets? Hell yeah. Every minute that I'm awake, lesson learned: get a colonoscopy.
I am just the opposite of you because I love my stoma with a pouch. I have had an ileostomy for over 30 years and it gave me my life back. The company that makes the product I use even made a video of me. Here is the link to that video: https://drive.google.com/file/d/1q1KP5wpWugARBh6lb9Zb2mIajMmvEtHh/view
I named my stoma and have traveled around the world with it. I am now 80 years old and have lived long enough to see my granddaughter turn 13. My stoma gave me my life and I love it. Phyllis Rovner
Qbeanz, I am sorry for your situation. I share your boat, but did get my colonoscopy regularly, no family history of colon cancer, but was diagnosed 11/19 in spite of my adherence to good health practices! I am 71 and would like to change a few things in my past as well. But I have decided to be happy with the life I have lived, it is a decision isn't it after all? I am grateful for every day I live that is pain-free and for the amount of independence I have. I try to find things to be thankful for and usually don't have to look too far. My best to each of you on this journey called Life!
I loved, loved, loved your story... so much I and others can relate to. You are a great writer and storyteller! Thank you for sharing and welcome to better health!
I'm so sorry you have been through so much. I thought I went through a lot but no way. I pray you are healing and the worst is over. I have been contemplating having a stoma reversal. I went through hell this time last year when the ER messed up by not giving me a CT scan or checking my blood the three times I went by ambulance. They gave me morphine and sent me home with Norco and Percocet. The fourth time I was taken to the ER, I had emergency surgery as the meds blew two holes in my intestines. Then three days later, because my surgeon didn't pay attention to the fact I was on prednisone, all heck broke loose and I had to be reopened and cleaned out and a stoma put in. All this because of medical incompetency. I really don't know whether to go for a reversal or not. I would like to normally.
Best of luck to you and Happy Easter.