Hi

My operation to go to permanent ileostomy was meant to have happened on Saturday but got delayed as my surgeon had an accident the night before. It's now scheduled for 5pm today (4 hours time - gulp!).

I'm so nervous. Also, I have that voice in my head telling me my jpouch suddenly seems to be getting better, even though i know it's given me hell all year.

They can't see what's wrong with the jpouch apart from severe cuffitis that doesn't respond to medication. I have high frequency and extremely high urgency - i feel incontinent at times. I go to bathroom 25-40 times a day and most of the time hardly anything comes out.

My surgeon has been reluctant to go permanent as he hasn't got a clear diagnosis for all my symptoms and believes the cuffitis isn't enough to explain it. It's taken me 3 weeks to convince him, and I've been very excited about getting my life back after a ridiculously bad year. But now that i'm due to go in, i'm finding i'm asking myself if this is the best thing for me and if i should wait. But i know my function is bad.

I hate this!!!

I am so sorry AQ that this is happening to you...if you haven't gone through with it yet, talk frankly with your doc about other options...And if you have gone through with it then all my best for a speedy and painfree recovery and finally getting your life back...
A permanent ileo is not a fatality, you can eventually, if you like, move over to a K pouch or BCIR or continent pouch so that you can still have a certain quality of life and autonomy from the outside bag...
I just hope that whatever happened you are fine now and that you are on your way to a happier life.
Sharon

I was nervous too because I knew the world of pain I was in for. I'm still comfortable with my decision, which I'll feel even better about once I'm healed, my ostomy is functioning normally, and I have my preferred supplies and accessories. I had my surgery Tuesday and hope to go home tomorrow. According to my surgeon everything went smoothly and I'm now on my road to recovery. I wish you luck with yours and that the recovery is a speedy and smooth one.

Hey

Thought I'd update you with how I got on.

I went through with it, and turns out, my being adamant to have the pouch removed was the correct decision as the surgeon found that I had a large cavity outside the pouch that could be caused by an abcess or potentially Crohns, even though they're confident that I'm a UC patient.

All was going well but my bowel never started working properly, meaning I couldn't eat or drink much and I had lots of gas pains. Eventually, I started vomiting after a week and became very very skinny. On examination they realised I had developed pneumonia and I went back to intensive care and was being fed through a central line.

After 2 further weeks of not improving much while on strong antibiotics, they realised i had clots in my lungs, which I'm now on warfarin for. I eventually got home after a month long stay, and things are getting better for me. Still trying to figure out my preferred supplies, but I like Trio Healthcare products.

My stoma is below the belt line which I sometimes worry about, as when I sit up, bends in the flange appear and I worry about leakage, though this hasn't happened yet.

Not expecting to be back at work until March. It's all about putting my weight on and the wound in my tail end healing properly. I have to go in to get it packed daily.

So hopefully that's the end of it and I can start living a more healthy and fulfilling life!

Keep smiling,
AQ

I have an ileo only support group on facebook. message me if you want to join. Lots of people with new and long term illeo who would love to support a new ileo friend.

AQ: Good luck and congratulations.

best of luck! I hope you start feeling better soon!

It will all get better! Hope you are doing better each day. It's been 3 1/2 years since I went back to an ostomy and I struggle to remember any of it. It all felt so encompassing at the time and now it is such a minor detail in my life.

I hope you find products that work good for you and that your recovery is smooth sailing from here on.
-Roni*