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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

Post Surgery check up – moving forward

Last week I went for my post surgery check up, it was 10 weeks post op and I was feeling a little nervous.  Timm and I went to the Hallamshire to meet with Mr Brown, my consultant.  He came into the room, looked at me and said “Mrs Cleasby?!” He looked at his notes and said “3rd September? How are you?”  I replied that I felt great.  He was genuinely shocked and said I looked a lot better than he would expect someone 10 weeks post colectomy to look, which was a great boost!

He went through my histology which as predicted showed severe ulcerative colitis through my large bowel, but nothing more sinister.  We also chatted about a few problems I have had, my hair is falling out by the handful which has been quite alarming, Mr Brown says it is a result of just how poorly I was before the surgery.  Im also having a few problems with my joints, especially in my hands, they believe this will go in time and again is a consequence of the ulcerative colitis.

gold boots

I rocked my gold boots at the hospital – why do I feel the need to dress up for the consultant?

I am feeling great right now, Im pretty much recovered from the surgery and getting used to my ileostomy bag.  I have had no leaks for weeks since finding the right bag for me (still using the dan sac nova 1 easifold convex) and I have been swimming, walking, going to the gym and even been to a spa.  I was really nervous that the steam room or sauna would cause my bag to just peel off but I had no issues at all!

I had my first communal changing room experience with the bag.  As most women know, the communal changing room is a fearful place.  There is always someone with a really hairy fanny that has no problem in drying themselves with one leg on the bench, there is always a super skinny woman with pert breasts proclaiming loudly about how terrible she looks in a bikini and the rest of us just trying to dry off and get dressed under a towel without making eye contact with anyone else.  Well I was nervous and initially went into the loo to change.  I emptied my bag and checked there were no leaks or any problems and then I decided to bite the bullet and change in the communal area.  After drying and putting on my underwear I realised I could do with blasting the bag with a hairdryer so my clothes didn’t get damp.  And I did it!  I think I got a couple of people having a sneaky glance, which didn’t bother me as it was more curiosity than anything else.  I helped that I was with my good friend who always boosts my confidence.

Anyway Mr Brown and I talked about how I was getting on with my ileostomy and what my options were to move forward.  My options are that I can keep my ileostomy bag permanently – this would require a further surgery to remove my rectum and anus giving me what is known amongst ostomates as “Barbie Butt” as there is nothing left there!!

barbie butt

My second option is to have pouch surgery.  Pouch surgery is also known as ileo anal pouch or j pouch surgery.  Surgeons will form a pouch from the end section of my small intestine that is then attached to my rectum.  Another ostomy will be formed whilst the new pouch heals, then in another surgery that will be removed so I would have no external stoma or bag and I would be able to poo in a ‘normal’ way.

pouch surgery

There are pros and cons to both options and my answer to Mr Brown was that I just don’t feel ready to make a decision yet.  He is happy with this and gives me 3-5 years to make the decision! After this time my risk of cancer and other problems in my rectum and anus increase and so they like to have a decision by then.  I have arranged another appointment in six months time and hope to have made the decision by then.

I really don’t know what to do for the best.  Part of me really doesn’t want to have a bag for the rest of my life but I kind of feel like ‘better the devil you know’ – there are quite a few possible side effects of the surgery that don’t sit well with me.  I am just so undecided right now that I think it would be silly to try to make such a huge life changing decision right now.  Ill look into everything in the next few months and see what I think.

Life is busy at the moment, business is booming and I am planning for our family trip to Vietnam and Australia!  We are going for almost 6 weeks to visit my sister and have a bit of an awesome adventure! Ive spent a lot of time researching travel with an ostomy and feel pretty organised and confident that all will be well.

Love Sam xx