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J Pouch surgery

So this morning I had an appointment with my lovely surgeon Mr Brown, it was an 8.30am appointment and so with it being half term we got the kids ready and set off at 7.30.

We got to the hospital, parked and was in the clinic for 8.15. The receptionist said she couldn’t check me in as she was medical and I had to wait for the surgical receptionist to get there. At 8.35 she arrived and then told me we were at the wrong hospital!!!

I showed her my letter that said it was at this hospital and she said ‘oh yeah, we sent the wrong letter!’

We then had to drive across Sheffield in rush hour traffic to get to the other hospital right on the other side of the city and just wait to be fitted in.

I could have cried! You work yourself up for these appointments, worrying about what the outcome will be and to then face more travel and time is a total pain.

so bad ass sam cleasby ibd awareness

Anyway we eventually saw the surgeon. Timm came with me for moral support and to remember the questions I always forget I want to ask and the answers given that drift out of my head before I reach the lifts.

Mr Brown is so nice, he’s my favourite doctor and always makes me feel better. We discussed the hernia that I have developed (Ill be doing a separate blog post about that) and then we talked through the pros and cons of pouch surgery.

I have to have a test done to check the muscle strength in my arse… Lovely. Basically they put a tube up your bum and it checks the pressure and sensitivity of your butt muscles. If they aren’t strong enough, it’s a good indicator that post pouch surgery you could be incontinent.

I’ve never had issues with that before so were all hopeful it won’t be an issue. Once that test is done, he is happy to go ahead with the surgery. Due to work and family commitments we have asked for the surgery to be done at the end of September or beginning of October.

Our photography business The Picture Foundry is sooooo busy at the minute, I also work with arts collective Responsible Fishing and this summer is crazy busy for us with creative workshops for children, arts installations and festivals.

I also am beginning to get busy with presenting talks on self esteem and body image and working with teenagers on a whole host of projects. I’m writing a lot more and got a few guest posts on blogs, magazines and even a bit of copywriting and blog writing for other companies on the go.

Oh yeah, and I’m moving house and renewing my wedding vows!!! So I have just a bit on my mind right now.

But come October things will calm down a bit and I can afford to have the time off work and timm will be less busy and able to look after the kids and me.

so bad ass sam cleasby ibd awareness

So the surgery…

colectomy and ileostomy diagram

The first picture is a normal digestive system, the second is after a colectomy and showing an ileostomy.  Im currently at the second picture stage.

J-pouch diagram

This is what the digestive system looks like after j-pouch surgery. You can see that the entire colon has been removed and that only the small intestine is left.  The end of the small intestine currently forms my ileostomy, during pouch surgery the surgeon constructs a pouch out of the small intestine by folding it up on itself and making it into a reservoir.  This is then attached to the anal canal.

This is called pouch surgery or ileo-pouch anal anastomosis or IPAA… Also known as J pouch, Internal Pouch or ileo-anal pouch.

After this surgery I will no longer have my stoma or ileostomy bag, my waste will go through my system and then be stored in the pouch, because I still have control of the muscles in my bum I’ll be able to hold waste and pass it normally into the toilet.

There are a few issues surrounding pouch surgery, one is that as the pouch is no where near as big as my large intestine was, Ill need to go to the toilet quite a few times a day.  Most people after everything is settled go 4-6 times a day or whenever they pee.  This may seem like a lot to someone without IBD but when I was having a flare of of Ulcerative Colitis I could be going 20-25 times a day with urgent, bloody diarrhoea and painful stomach cramps.  Currently with my ileostomy I go to the toilet and empty my bag around 5 times a day plus once or twice during the night, so this part doesnt bother me too much.

Other problems can be butt burn… basically, the large intestine neutralises your poo, when you don’t have that, the waste that leaves your system is quite acidic.  Currently with an ileostomy if I get waste on my skin through leaking, it can burn my skin and leave it really sore.  So after pouch surgery that same waste will be coming out of my butt.  Hence the butt burn.  Using a barrier cream and baby wipes is told to really help with this and apparently the skin soon toughens up and learns to deal with it!

Pouchitis is inflammation of the pouch, it is treated with a course of antibiotics.

Mr Brown would like me to have the one step surgery.  This means that the pouch will be formed and connected in one step, Ill wake up without an ileostomy.  It requires at least 10 days in hospital, during this time I will be on a liquid only diet and have a tube placed into the pouch that will irrigate it three times a day.

The alternative is the two step surgery in which the pouch is formed and attached, but another ileostomy is created further up the digestive system to divert waste from the pouch till it is full healed.  Then after a few weeks, the second surgery is performed to close up the ileostomy and the pouch begins to work.

There are risks to both, as with any surgery.  The one step is quite a tough recovery but I trust my doctor and having researched a lot I am happy to go with the one step. (I think!!!)

There are risks associated with fertility, but as I already have three kids and Im definitely not planning any more this isn’t a problem for me.  Other potential problems are internal leaking which can lead to all manner of bad juju, incontinence, abcesses, fistulas and all manner of other scary stuff.

I really want to go into surgery as informed as possible, its so important to me to feel like I know exactly what Im getting into BUT I have just spent the last hour terrifying myself by reading forums of people with pouches.  I need to remember that people are more likely to write about bad experiences than good ones.  There are always complications and problems possible with any surgery, its not good to get caught up on every single what if.  Ive done my research, spoke to my surgeons and specialised nurse and I *think* I have made up my mind.

Its not an easy decision.  My ileostomy is now healed and I have very few issues with it, I eat pretty much what I want with only a few exceptions and my life is a million times better than before I had surgery.  So it does feel like a risk to have another surgery that could possibly make things difficult again for a while.

They say it takes around 18 months for your body to become used to the pouch.  Thats a bloody long recovery time, but the chances are good that my life will be better and I won’t have the ileostomy bag any more.

As for success rates of pouch surgery, the generally accepted figures are these…

40% will be perfect/excellent

40% will be acceptable with some issues

10% will be poor but the patient will put up with the problems as they are stoma averse

10% will need to be defunctioned

So I have an 80% chance that things will be fine.  I need to remember this when Im stressing out and crying because Im reading yet another forum with people screaming their woes.

Im feeling quite stressed about the whole decision process, but Im lucky to have a fab husband to support me and a great doctor who in knowing my worries has given me his email address so I can talk any concerns through direct with him.

Thanks for reading

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