pouch surgery ulcerative colitis

Pouch surgery and feeling scared

My pouch surgery is booked in for the 14th May and so I thought Id do a post about what it is and how Im feeling about it.

I know that the pouch surgery is definitely something that I want to at least try, its a big surgery especially as Im having it in one step but it is something that I think is worth me going for.  The alternative is to have a permanent ileostomy which still means having another operation to remove my rectum and sew up my butt…

There can be complications with the surgery with leaks, fistulas and pouchitis (an infection in the pouch), there can be problems with incontinence and the recovery is a long process.  But the positives will be that I no longer have a stoma and no longer will need to wear an ileostomy bag.  I will go to the toilet as ‘normal’ and my hernia will be fixed.

I feel informed and happy with my decision but I am still so frightened.

Its a long surgery and I am scared I just won’t wake up.  I know how silly this is, the doctors and anaesthetists are professional and caring and will do everything they can to look after me, but I can’t shake this worry that there will be problems and I just won’t wake up.  Maybe its because this surgery is planned whereas the last one was an emergency and so I have an option to not go for this.  Or maybe its just that the last year has made me think about my own mortality.

So let me explain a little about the surgery, in my last operation they removed my large intestine and made my stoma from the end of my small intestine.

normal digestive system  ileostomy


So the first image here is a normal digestive system, the second is how I am and shows a digestive system without the colon (or large intestine) with an ileostomy.

During the pouch surgery, doctors will remove my ileostomy and form a pouch out of the end part of my small intestine.

pouch surgery ulcerative colitis


This image show the pouch formed from the small intestine and that it is then connected to the rectum and anus muscles so food has a clear path from mouth to bum!

Most times this surgery is done in two parts, the pouch is formed and connected but a loop of small intestine is brought out of the stomach to make another stoma which diverts food from the pouch and bum whilst everything heals.  Then 2-3 months later the loop is repaired and everything is connected.

I am having the surgery in one go, so they are forming the pouch and connecting everything straight away, I will be unable to eat food for around 10 days to give the pouch chance to heal and then will have to be very careful for a few months with what I eat and drink.

There are more risks in doing it this way, the main risk being that the pouch doesn’t hold and will leak.  A leak can be dangerous and would require more surgery and a longer hospital stay.  But my surgeon is confident that I am strong enough to deal with the surgery and that it is the best choice for me.

Recovery wise, there is a high chance of incontinence right after the op, it will be quite painful as its open surgery so I have the wounds inside and out to deal with, they are good at dealing with pain relief though and so Ill be on morphine and an epidural for a while.  It has been 8 months since I have used the muscles in my butt and so it takes a good while to re learn how to use them again, I also have to learn how to go to the toilet all over again.  The pouch is using parts of the body that were never meant to do this new job and so it is a long and difficult journey to be back to ‘normal’.

The worst case scenario (apart from, you know, death) is that the pouch doesn’t work and there are problems, if this was the case it is still possible to go back to having another ileostomy.  This isn’t ideal but it is good to know that its something I can go back to and I could deal with that.

I am NERVOUS! Im scared of the pain, Im scared of going back to running to the loo again, Im scared that the pouch recovery will be like having colitis again and having to stay close to the toilet at all times.

I am really sad at the thought of going back to feeling so weak, poorly and being unable to do things for myself.  The last surgery was a good 6 weeks of bed rest, feeling so exhausted and allowing my body to heal.  This surgery will be even longer and that worries me.

BUT I am confident its the right move and so in two weeks time I will be officially no longer an ostomate and will be a pouchee!

Wish me luck, I will be updating the blog as much as I can running up to the op and will ask Timm to update once I have had the surgery.


Love Sam xxx


5 thoughts on “Pouch surgery and feeling scared

  1. Hi Sam, I am so glad you have your date again and can move forward 👍 I know exactly how you feel about ‘ not waking up’ after the surgery because I felt exactly the same in January when I has my surgery, I even have my blessing to my husband to find someone else afterwards!! Lol I was convinced this time that I wouldn’t pull through (god knows why!! Maybe because I am older and had had enough of it all) ……. But if course I was fine and so will you be!!! Just keep thinking about a few months on when you will be ilostomy free!!!!
    My tip is to take a wheat bag in hospital for your back – the nurses used to warm it up for me in the microwave which would help no end – after laying in bed for 2 weeks it killed!!! Let us know how you get on honey and sending positive vibes your way!!!! Love Nic xxx


  2. Hi Sam,
    Thank you for openly sharing your experiences and feelings on your blog. The blog is invaluable for helping others, like me, understand the process (physically and mentally) that a person goes through when living with UC, an illeostomy and having pouch surgery. You’re an incredibly strong and brave person and reading your blog has given me courage to face a decision to have surgery for an illestomy following a hard battle with UC.

    I wish you all the very best for your forthcoming pouch surgery and recovery. Stay positive and allow yourself time to heal and be supported by your loved ones.

    Best wishes, FAB


    • Hi thank you so much for your lovely comment. I write this blog to try and make a difference and so hearing comments from people like you just blows me away and makes it all worthwhile.

      Lots of love to you and best wishes throughout your treatment

      Sam xxx


  3. Hi Sam, I came across your blog by chance, I have diverticulitis, which is absolutely nothing compared to your illness .
    I would just like to say I think you are totally amazing, very brave, an inspiration to a lot of people, very pretty, and I truly hope you are doing really well.
    Lots of love to you.
    Maxime xx


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