Embracing Life as an Ostomate: My Journey Begins

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 30s but had probably had a couple of flares in my 20s which were misdiagnosed by my GP as food poisoning.

For the last few years, I had normalized my symptoms, thinking I was okay 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 while 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

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.

Welcome Jonboytate! You are absolutely in the right place! There are so many wonderful, helpful people here. ❤️ All questions are welcome as well as any venting or whatever. LOL

Wow - 24 hours since surgery and you are already online - 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.

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

Thanks everyone for the warm welcome and your kind words of advice. Reading through other members' stories is really helping right now.

Welcome to this site and feel free to ask any question. Best wishes

Welcome Jon to the site. I've had an ileo 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 Crohn's. Don't 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.

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 a while, 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

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

Hi all. First off, thanks to Meadow for reaching out to me as I've been absent since my post. I'm out of the 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.

Yay! Good to hear you are out of the hospital and spending 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!

Meadow is the sweetest! Glad to hear you are on the mend, Jon!