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My New World As An Ostomate

Posted by jonboytate

So, I’m literally less than 24 hours post ileostomy surgery sat here in my hospital bed typing this. Hello from Stoke Mandeville Hospital. 

I was diagnosed with ulcerative colitis in my early 30’s but had probably had a couple of flares in my 20’s which were misdiagnosed by my GP as food poisoning. 

For the last few years I had normalised my symptoms, thinking I was OK when I was actually flaring. I was taking azathioprine daily but had become tolerant of it. After a failing colonoscopy in July 2021 (I was too inflamed for the camera to go round) I was put on steroids whilst awaiting biologics. I started these in January 2022 but had no effect on my symptoms. 

Fast forward to last week and I was visiting the toilet nearly 20 times a day. I bit the bullet and called my IBD who told me to come to the hospital immediately.


After nearly 10 days of in hospital treatment, steroids and Infliximab, I was told surgery was my option. As frightening as this was I knew it was my only option.

I was hoping to get away with keyhole surgery but it turned out my liver and colon had stuck together so I now have a 10cm cut above my bellybutton (not that I’ve had the courage to look down yet). 

I know my quality of life will now improve but right now I’m feeling pretty awful and sorry for myself that I ignored things for so long. I’m hoping this site, the forums and members will help me get through this period as a new ostomate. 


Thanks for reading. 

Jon

See all blogs by jonboytate
Comments:
Apr 22, 2022
AlexT : Welcome. The healing takes time, don't get in a big hurry to get right back to whatever your normal life was before. Adjusting to having a bag takes time also but once you do, it becomes your new normal. Not running to a bathroom constantly is a blessing.
Apr 22, 2022
Justbreathe : WOW - 24 hours since surgery and you are already on line - I am super impressed! Welcome to this site, I wished I had discovered it a lot sooner. Keep your chin up jonboytate we are all cheering for you. Wishing you a speedy recovery.
Apr 22, 2022
delgrl525 : Hi Jon, and a big welcome! I too am very impressed that you are reaching out so soon after surgery! I was a "fly on the wall" for a few months before I worked up the courage to post on here. Yes, we are here for you. Nothing is off limits and you will have lots of questions getting used to your new normal. Give yourself lots of time to heal, and don't put any pressure on yourself. Your quality of life will improve, but you can expect a few bumps along the way, it's perfectly normal in the beginning!

Terry
Apr 22, 2022
Meadow Snow : Welcome Jon! You're actually really close to me, my hospital was Watford General ????. My surgery was 3rd March last month, so my stoma is very new as well. His name is Michael, short for Michael Kors (one of the healthcare assistants on the ward named him). It certainly helps mentally if you are able to think up a name for your stoma, quit a lot of ostomates do this. I go into a lot more detail about everything in a blog post I did recently called “I miss pooing. Is that weird?” But the TLDR is that in October 2013 I was having a massive flare up of what I later found out to be ulcerative colitis, and 2nd November 2013 I had an emergency subtotal colectomy. It was definitely tough mentally, and I do remember it took me a few days to pluck up the courage to look down at my wound when the nurse was changing the dressing - like you, I had open surgery. I was able to have my stoma reversed, but recently, after about 7 years of no stoma I had to have the stoma back, this time it's permanent because they removed my anus and rectum as well. In the ostomy community we call this “Barbie butt” (or Ken butt depending on your gender identity).

There were definitely times in the beginning when I thought “why me?” and I really resented the first stoma because for me it represented my life changing forever. Hence why I was so keen on having it reversed with the j-pouch operation. But I pulled through, and I now really appreciate having my new stoma Michael sticking out of my tummy. It can be really fun to buy bag covers, there are plenty of places online you can get them from, the ones I have atm are all from a shop on Etsy. You just message the person your buying them from what bag you use and they can make sure it's gonna be the right fit. But you're only one day out from the op, for now just concentrate on recovering, celebrate all those small milestones, coz when you're as unwell as we both were, even the smallest milestones are the biggest achievements. Even just getting up out of bed to hobble to the toilet while gripping your drip stand for dear life so tightly your knuckles turn white. Eventually you'll start figuring out a routine, you'll find out what works for you and what doesn't, but the only way any of us know is by trying. And it also really helps when you have people you can talk to (or type to in this case) who understand exactly what you're going through. So even if you don't connect with me, there'll be a lot of other people on this site who you will.

Sending you all the positive and get well soon vibes!
Apr 22, 2022
jonboytate : Thanks everyone for the warm welcome and your kind words of advice. Reading through other members stories is really helping right now.
Apr 22, 2022
lovely : Welcome to this site and feel free to ask any question. Best wishes
Apr 22, 2022
RaenotRay : Welcome to the “cool kids” club Jon! Please, don't blame yourself for the past. Whether things were caught now or long ago, you're exactly where you're supposed to be. You've been brave and strong, and now you have a clearer direction. Now you can heal, and learn all the things. There is a ton to learn, so give yourself grace. Don't be afraid to laugh and cry, and feel all the emotions. ??
Apr 23, 2022
ron in mich : Welcome Jon to the site i,ve had an ilieo. for 30 some years after dx of UC but after my latest surgery for a resection and moved stoma from right to left side they now say i have crohns. Dont be afraid to ask questions as nothing is off limits also somebody on here has probably had an issue that you might have and can give you an answer.
Apr 24, 2022
iMacG5 : Hey Jonboy, I also welcome you and sincerely thank you for sharing your experience with us. And so quickly! You have absolute permission to feel sorry for yourself for awhile and it might be good for you to name your stoma. I refer to mine as, "My F'n Stoma". It's a term of endearment only my F'n stoma appreciates. I really love it for giving me my life back.
Wish you the best,
Mike
Apr 25, 2022
Ninca : Hi, Don't be afraid of your Ileo, it's given you a new lease of life . No more looking around for the nearest loo, no more fear of not getting to the loo in time . There are lots of us in the UK with stomas. Be brave . Lindax
May 03, 2022
jonboytate : Hi all. First off, thanks to Meadow for reaching out to me as I've been absent since my post. I'm out of hospital now and back home. Still getting to grips with my stoma but the fact I'm not on the toilet 20 times a day is such a relief. Also eating a meal is no longer stressful. Yesterday I managed a walk to my local pub for a soft drink, something I haven't been able to do in years. The only thing I'm struggling with at the moment is the 2am alarm call to empty my bag as I do love my sleep, but hey getting up once in the night is a small sacrifice for having a normal day.
May 03, 2022
Justbreathe : YAY! Good to hear you are out of the hospital and spend more time at the pub instead of next to the tub!
One day at a time now to adjust to your new normal. Best wishes !