sam and timm cleasby

Feelings about surgery

I am struggling to write this post.  I just don’t seem to be able to find the words, which is an odd feeling for a loud mouth like me.  I am due to have my pouch surgery in the next 5 weeks though I don’t have a date yet, and Im terrified.

I was scared before the last surgery but I was so ill that I knew I had little option but to have my bowel removed, but this surgery is different.  I am making the choice to have this one, I could choose to keep my ileostomy forever and the idea is tempting.  Now I am used to the bag, it causes few problems day to day, my hernia is a problem but that could be fixed and I could keep my bag.

sam cleasby so bad ass ulcerative colitis blog sheffield

But I am choosing to go for the pouch surgery to give myself an opportunity to have a more normal digestive system.  The surgery means that my small intestine will be formed into a pouch and connected back to my rectum so I will no longer have a bag and will go to the toilet ‘normally’.

I say ‘normally’ but it will never be back to normal again.  The pouch will be a lot smaller than a colon and so can’t hold as much, so I’ll be going to the toilet 5-10 times a day.  Also the colon takes a lot of the liquid out of food which is why normal poos are reasonably solid, as I don’t have a colon, my poo will be liquid all the time.  The colon also neutralises a lot of the stomach acid from our food, with my bag if I get the poo on my skin it can burn and make it really sore.  I will have this same issue with my bum when I have the pouch getting the dreaded “butt burn”.

The surgery itself is a long one, 6-7 hours I have heard and then Im having the hernia repair as well and so I am really nervous about the actual surgery and being under anaesthetic for all that time.  I have huge fears that something will go wrong and I won’t wake up.

The recovery is meant to be very difficult.  Ill have at least ten days in hospital as I am having the one step pouch surgery which means I won’t be allowed solid food for 10 days and all liquid has to be measured in and out…

I haven’t used my bum muscles for over 6 months now and so that combined with the new pouch and my intestines being forced to perform a job they were never meant to do means there is a good chance of incontinence in the first few months.  I am embarrassed to talk about this but this blog is meant to be about honesty I suppose.  There is a chance Ill have to wear some kind of sanitary device at night to keep clean.  Im devastated about this possibility.  I literally feel sick at the thought of it.  As I write this I am unsure whether I can hit publish as Im so upset about it.

Full recovery can take 12 -18 months, this is the length of time it can take for the pouch to be at full working order.  It is going to be a long hard slog, I am trying to prepare friends and family for the difficulty of my recovery as I feel that people are expecting me to bounce back from this surgery as I did with my bag but the fact is that this recovery is going to take longer and affect me a lot more.

I feel quite a lot of pressure actually.  Pressure of others expectations, which I know is daft and what will be will be, but I do worry that people are going to be shocked at how tough this op is to get over both physically and mentally.

Im scared.  Terrified to be honest.  Im scared that I won’t be able to cope, that Im going to be house ridden for months and months.  Im scared I won’t be able to deal with it emotionally and mentally as well as physically.  Im quite good at being tough, but Im not so good when I feel out of control.  Im worried I am making a mistake, should I just keep my bag forever? Logically I know that this is what I want to do, I know that if the pouch recovery goes terribly wrong that I will be able to go back to a stoma and bag, but if I choose to keep the bag now there is no going back as the removed everything in the rectum and anus and sew it all up, so I want to at least attempt to live with a pouch.

Timm is, as ever, being amazing.  He listens to all of my worries and we talk through everything, he tells me he will be there every step of the way.  I suggested we sleep separately whilst I recover and he has just plain refused, which I am secretly pleased about.  I just felt that I should give him the option of sleeping away from me during the first tough months but he says we will always share our bed no matter what.  He talks with me about coping strategies and if all else fails, he makes terrifically sick jokes that make me laugh.  A lot.

sam cleasby so bad ass ulcerative colitis blog sheffield

So there it is, this is how Im feeling right now.  Shaky, emotional, frightened yet oddly looking forward to the surgery just being over and done with.  I will, of course, be blogging as much as I can through my treatment.  Please keep commenting, emailing, calling, texting and messaging me.  Your support means the world and I feel properly blessed to be able to share my journey with you all.

Much love

Sam xx

0 replies
  1. lifespaller
    lifespaller says:

    It’s fantastic that you are sharing the decision process. I can see you are making a really informed decision with much knowledge gathering and consideration about outcome uncertainty. This is so useful for your readers as well as yourself. I really hope it all goes well. And if you decide at the last minute not to proceed, that makes sense too.

    Reply
  2. lifespaller
    lifespaller says:

    It’s fantastic that you are sharing the decision process. I can see you are making a really informed decision with much knowledge gathering and consideration about outcome uncertainty. This is so useful for your readers as well as yourself. I really hope it all goes well. And if you decide at the last minute not to proceed, that makes sense too.

    Reply
  3. Twitchy
    Twitchy says:

    Each step you take is scarier than the last – look at how far you have come. You are such a strong person with the most incredibly supportive friends and family that you will make it through this. Being able to ‘share’ via this blog must help in a small way; it’s the equivalent of ‘saying it out loud’ which makes it al the more real but also means you then have to deal with it.
    You are such an inspiration for so many people Sam. You are demystifying this whole process and as someone who suffers from IBS and bowel ‘urgency’ I can totally sympathise with the way you feel.
    G x

    Reply
  4. Twitchy
    Twitchy says:

    Each step you take is scarier than the last – look at how far you have come. You are such a strong person with the most incredibly supportive friends and family that you will make it through this. Being able to ‘share’ via this blog must help in a small way; it’s the equivalent of ‘saying it out loud’ which makes it al the more real but also means you then have to deal with it.
    You are such an inspiration for so many people Sam. You are demystifying this whole process and as someone who suffers from IBS and bowel ‘urgency’ I can totally sympathise with the way you feel.
    G x

    Reply
  5. Debbie
    Debbie says:

    Given that you are only getting one shot at the pouch surgery you really don’t have much choice 🙁 the recovery process sounds heartbreakingly hard. I totally understand your fears. That you are facing them, and sharing them, head on is a testament to your courage and bravery. Much love to you and prayers for strength x x x

    Reply
  6. Debbie
    Debbie says:

    Given that you are only getting one shot at the pouch surgery you really don’t have much choice 🙁 the recovery process sounds heartbreakingly hard. I totally understand your fears. That you are facing them, and sharing them, head on is a testament to your courage and bravery. Much love to you and prayers for strength x x x

    Reply
  7. Tracey
    Tracey says:

    Hey you, once again you have triumphed over your fears. As much as it pains u to write ultimately yr struggle and story as it unfolds will comfort someone who follows in your footsteps….stay strong…know that you are loved and supported and hey if you dont want to go through with it then know that thats ok to x x x

    Reply
  8. Tracey
    Tracey says:

    Hey you, once again you have triumphed over your fears. As much as it pains u to write ultimately yr struggle and story as it unfolds will comfort someone who follows in your footsteps….stay strong…know that you are loved and supported and hey if you dont want to go through with it then know that thats ok to x x x

    Reply
  9. Jo Hudson
    Jo Hudson says:

    Look, it’s going to be tough, but remember you are a warrior and you will get through this. It’s a tough battle for you babe and it’s not fair, but you will be fine. You have to be. We love you and are proud of you. Xxxx

    Reply
  10. Jo Hudson
    Jo Hudson says:

    Look, it’s going to be tough, but remember you are a warrior and you will get through this. It’s a tough battle for you babe and it’s not fair, but you will be fine. You have to be. We love you and are proud of you. Xxxx

    Reply

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