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

37 replies
  1. Jo Hudson
    Jo Hudson says:

    I wonder is anyone else is reading this and doing butt muscle excercises as I am. Scary stuff Sam! How quickly do you need to make a decision? Xxx

    Reply
  2. Jo Hudson
    Jo Hudson says:

    I wonder is anyone else is reading this and doing butt muscle excercises as I am. Scary stuff Sam! How quickly do you need to make a decision? Xxx

    Reply
  3. Lydia
    Lydia says:

    Hi Sam,
    Sorry to hear about the letter mix up ! You really don’t need added stress do you.
    Good luck with your pouch surgery. Like you said if it’s gone well like it does for 80% of people then they will be out living their life to the full and not posting horror stories on forums you need to take it with a pinch of salt kinda like trip advisor ! Lol.
    You are a strong brave lady and I think you would always think what if ? If you didn’t go ahead with the surgery (I know I would) And I suppose I would tell myself that worst case senario I end up back with the illiostomy which you have coped with fantastically anyway. (If you can travel to Australia with it then your sorted 😉 )
    Mr Brown is my favourite doctor too I think we are really lucky to have him and his team. I think you are in really safe hands with him (as long as he didn’t personally send that letter ! In which case I’m worried we are all doomed hehe)
    Take care Sam and yes Jo I did hehe xxx

    Reply
    • sam
      sam says:

      Thanks! It is just like trip advisor!!

      Mr Brown apologised a lot about the letter even though he had nothing to do with it. He says that it happens every week when he’s at Hallamshire on a Monday and every week he complains about it.

      He is really nice and we are lucky xxx

      Reply
  4. Lydia
    Lydia says:

    Hi Sam,
    Sorry to hear about the letter mix up ! You really don’t need added stress do you.
    Good luck with your pouch surgery. Like you said if it’s gone well like it does for 80% of people then they will be out living their life to the full and not posting horror stories on forums you need to take it with a pinch of salt kinda like trip advisor ! Lol.
    You are a strong brave lady and I think you would always think what if ? If you didn’t go ahead with the surgery (I know I would) And I suppose I would tell myself that worst case senario I end up back with the illiostomy which you have coped with fantastically anyway. (If you can travel to Australia with it then your sorted 😉 )
    Mr Brown is my favourite doctor too I think we are really lucky to have him and his team. I think you are in really safe hands with him (as long as he didn’t personally send that letter ! In which case I’m worried we are all doomed hehe)
    Take care Sam and yes Jo I did hehe xxx

    Reply
    • sam
      sam says:

      Thanks! It is just like trip advisor!!

      Mr Brown apologised a lot about the letter even though he had nothing to do with it. He says that it happens every week when he’s at Hallamshire on a Monday and every week he complains about it.

      He is really nice and we are lucky xxx

      Reply
  5. Nicola Goodlad
    Nicola Goodlad says:

    It was Mr Brown who just did my surgery last month, I agree he is lovely and I also liked his registrar Dr Farouk who is very ‘Yorkshire’ and down to earth!
    I really wish you all the luck in the world with it Sam, sounds like a tough procedure but from what I have read you are a very strong and brave lady! I hope you can enjoy the summer and your wedding without worrying about it.
    Thanks for explaining the procedure too as I didn’t understand what a J-pouch was.
    Keep strong xx

    Reply
  6. Nicola Goodlad
    Nicola Goodlad says:

    It was Mr Brown who just did my surgery last month, I agree he is lovely and I also liked his registrar Dr Farouk who is very ‘Yorkshire’ and down to earth!
    I really wish you all the luck in the world with it Sam, sounds like a tough procedure but from what I have read you are a very strong and brave lady! I hope you can enjoy the summer and your wedding without worrying about it.
    Thanks for explaining the procedure too as I didn’t understand what a J-pouch was.
    Keep strong xx

    Reply
      • michael
        michael says:

        I guess from the smily face, everything is going well, would I you be willing to pro vide me some help and support, had takedown middle off august, and still stuggling a bit with sleep and leaks, ki have a personalised email id rather talk through there if your happy to do so, then it doesnt put anyone else off

        Reply
      • michael
        michael says:

        I guess from the smily face, everything is going well, would I you be willing to pro vide me some help and support, had takedown middle off august, and still stuggling a bit with sleep and leaks, ki have a personalised email id rather talk through there if your happy to do so, then it doesnt put anyone else off

        Reply
  7. TGony Serne
    TGony Serne says:

    Had my pouch operation 20 years ago at the John Radcliffe in Oxford carried out by Prof Mortensen. He is still there and I thank him for giving me my life back. I have had full continence and need to empty my pouch about 6 times per day. I do live on Imodium taking between 8 to 12 per day but that is a small price to pay.

    Reply
  8. TGony Serne
    TGony Serne says:

    Had my pouch operation 20 years ago at the John Radcliffe in Oxford carried out by Prof Mortensen. He is still there and I thank him for giving me my life back. I have had full continence and need to empty my pouch about 6 times per day. I do live on Imodium taking between 8 to 12 per day but that is a small price to pay.

    Reply
  9. Ben
    Ben says:

    I had a 3 step surgery due to advanced UC and all the medication I was on causing complications – subtotal colectomy in march 2010, pouch formation and loop ileostomy august 2013 and closure of the ileostomy march 2014. Had the j pouch now for about 9 months and I do not regret it for 1 minute. Going 2-6 times a day depending on what I eat, fully continent and have plenty of advanced warning. Since the closure I have been abroad, can go swimming again and not have to check every ingredient of my food in case something in it will send my UC into relapse. I will need yearly checks on the pouch to make sure it is still working ok but that is a small price to pay for a much better quality of life!

    Reply
    • Teri Sheehan
      Teri Sheehan says:

      Wow you are lucky — 2-6 x a day… I go 15-18x a day but would never go back to the bag. That had its own set of issues. Just wondering (and I don’t expect you to know the answer) but why do I go so many times a day, when your down to 2-6x?? Interesting. I’m heading back into NYC’s Mt. Sinai where I was initially for some answers. Glad your doing so well!

      Reply
  10. Ben
    Ben says:

    I had a 3 step surgery due to advanced UC and all the medication I was on causing complications – subtotal colectomy in march 2010, pouch formation and loop ileostomy august 2013 and closure of the ileostomy march 2014. Had the j pouch now for about 9 months and I do not regret it for 1 minute. Going 2-6 times a day depending on what I eat, fully continent and have plenty of advanced warning. Since the closure I have been abroad, can go swimming again and not have to check every ingredient of my food in case something in it will send my UC into relapse. I will need yearly checks on the pouch to make sure it is still working ok but that is a small price to pay for a much better quality of life!

    Reply
  11. Jennifer Smith
    Jennifer Smith says:

    I had my surgery in 1999, I have never had any problems, If their was a choice between the pouch or the bag I would go with the pouch every time. As time goes on your muscles get stronger and you can lead a normal life as I do, with a few limitations, good luck it’s worth it in the end.

    Reply
  12. Jennifer Smith
    Jennifer Smith says:

    I had my surgery in 1999, I have never had any problems, If their was a choice between the pouch or the bag I would go with the pouch every time. As time goes on your muscles get stronger and you can lead a normal life as I do, with a few limitations, good luck it’s worth it in the end.

    Reply
  13. Linsey
    Linsey says:

    Hi Sam,

    I had pouch surgery quite some time ago now (going on 12 years) and I’m in my early 30s.

    It’s the best thing I have ever done.

    Yes, I still have some ups and downs but, generally, I have so much more control and normality. I know what my triggers are and I can use that to help improve the control.

    It does take some time to settle down but a great tip from my surgeon was to train your pouch from an early stage. When you feel the urge, sit on the toilet but try to hold as long as you can! Again, sometimes it worked and others it didn’t but it definitely strengthened things for me.

    The surgery was also significantly more invasive when I had my surgery so I would hope that is a benefit to you.

    Everyone is different, of course, but I wanted to put a positive story down for you. I am so glad I had my surgery. It was tough at the time, especially as (back in the old days, haha) the surgery meant a full abdominal scar from top to bottom – recovering from that was one of the toughest bits. However, I genuinely feel that my pouch gave me my life back and I am so grateful to my wonderful consultant and her team for all they’ve done for me.

    I genuinely hope you have the same positive experience and the surgery works for you.

    Good luck!

    Reply
  14. Linsey
    Linsey says:

    Hi Sam,

    I had pouch surgery quite some time ago now (going on 12 years) and I’m in my early 30s.

    It’s the best thing I have ever done.

    Yes, I still have some ups and downs but, generally, I have so much more control and normality. I know what my triggers are and I can use that to help improve the control.

    It does take some time to settle down but a great tip from my surgeon was to train your pouch from an early stage. When you feel the urge, sit on the toilet but try to hold as long as you can! Again, sometimes it worked and others it didn’t but it definitely strengthened things for me.

    The surgery was also significantly more invasive when I had my surgery so I would hope that is a benefit to you.

    Everyone is different, of course, but I wanted to put a positive story down for you. I am so glad I had my surgery. It was tough at the time, especially as (back in the old days, haha) the surgery meant a full abdominal scar from top to bottom – recovering from that was one of the toughest bits. However, I genuinely feel that my pouch gave me my life back and I am so grateful to my wonderful consultant and her team for all they’ve done for me.

    I genuinely hope you have the same positive experience and the surgery works for you.

    Good luck!

    Reply
  15. Berni
    Berni says:

    Sam, I wish you the best! I wish your pouch behaves a ton better than mine. I have been having a difficult time since takedown and it seems I have a bad pouchitis that my doctors and I are trying to solve. I live happy, I have a great wife, and we are a great team with the good, the bad and the ugly (wife, me and pouch!). I am hoping to fix the pouchitis and live with more freedom. The bag was good, I was very proud of it (and before surgery I feared it would make me depressed), but these days, even with the problems, I’m happy to be a Dyson and to lie on my tummy whenever I want. I hope your pouch works great from the first day and always. I hope I can get there too.

    Reply
  16. Evan johnson
    Evan johnson says:

    Worry not, I’m approaching the stage of having either a permanent bag or just pouch in next couple of years due to polyps. I had a colectomy years ago leaving just the rectum, I’m hoping the operation if successful will leave me in my current situation, knowing when to head for the toilet up to 10 times a day. Butt burn does improve and only happens on rare occasions in my experience, hope your operation goes well. Reading all the comments is very helpful.

    Reply
    • Rick
      Rick says:

      Dk not have a permanent bag. If your uncertain sometimes they can leave a small amount of rectum…..and during this time as you have the bag, you can decide. In other words, please take what I am writing and pay it attention and thought. Do not commit to having a permanent ileostomy. If you elect to have a j pouch…you will likely have it in 2 or 3 steps. If done in 3, you will have an ileo but can determine from there what is right for you, as at this point they have not created the pouch yet. So this would be a good way to know. Another is a two step…they give you the ileo BUT they create the pouch inside. At this point you are pot committed into having the J pouch. However, you will still get a general odea of what an ileo is like. All finals steps are the takedown.

      Reply

Trackbacks & Pingbacks

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  4. […] I had a subtotal colectomy and lived with an ileostomy for nine months, then just weeks ago I had pouch surgery to reverse my ileostomy and create a new bowel […]

  5. […] I had a subtotal colectomy and lived with an ileostomy for nine months, then just weeks ago I had pouch surgery to reverse my ileostomy and create a new bowel […]

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