ibd hospital jpouch canula medications

Shit happens…

“So the decision is made? I’ll book you in for another ostomy”

Yep, the decision is made. This journey that started 2 years and 2 months ago when I had my colon removed and an ileostomy formed, is coming full circle and in early 2016, I will be going back under the knife and having a permanent stoma formed.  They will remove my Jpouch and make an ostomy from my small intestine and I will once again, have a bag. Though, this time it will be a bag for life. (Not the Tesco kind…)

I am still in hospital recovering from this latest bout of pouchitis and this week I have had to make some tough decisions. Do we continue to fight fires and keep having medication, hospital stays, exhaustion and generally spending 20% of my day on the toilet? Or do we go back to the ileostomy. 

I’ve had to be quite logical and unemotional about it all, thinking in terms of quality of life, work, family and prognosis of the jpouch.  I have been listing pros and cons till the early hours of the morning, imagining life with a stoma versus life with a Jpouch and all that comes with both scenarios. I have googled my heart out and spoken to Timm, the kids and to my fabulous consultant Mr Brown. 

And I have made the decision.  I’m booked on the urgent list for a pouch excisionand permanent stoma.  There will be no going back from this, I believe I’ll have the full on Barbie Butt! I feel relief in this decision, I know it is the right thing for me.  The pouch is fantastic for some people, but for me, it isn’t working. 

Only now, as I sit on the hospital ward, the lights dimmed and only the gentle hum of machines and whispers of nurses at their station, I feel very alone and very emotional.  

This isn’t fair. 

That’s how I feel. Like a bratty toddler. That I never signed up for a life of illness and surgeries.  I don’t want to live with a bloody ostomy bag stuck to me. I don’t want to spend so much time in hospitals. I don’t want to have to make life altering decisions that seem to have two crap endings. I don’t want to worry about being a burden to my family. I don’t want to be sick. 

And you know what, I’m totally allowing myself this rant. I think I’m entirely entitled to feel shit about all this. It’s ok for me to have a cry and feel sorry for myself. Because this is all not fair. 

It’s not fair that I’m looking at my fourth surgery in three years. It’s not fair that I have this illness, these complications. It’s not fair that my three kids are now used to seeing me in a hospital bed. It’s not fair that my husband has the options of a wife who shits herself or a wife with an ostomy bag. 

I have no positive spin today. No fun little meme with a quote by the Dalai Lama. 

Nope, I have pain. Raw, emotional, angry pain.  And that’s ok. 

Sometimes life throws absolute crap at you, we have to deal with rubbish situations that are difficult and make you sad and angry. Sometimes shit happens.  And it is completely fine to not be ok with that. 

Accept your sadness. Revel in your anger. Acknowledge your pain. 

Tomorrow is a new day and we can figure out the positive shit then… 

Sam x 

16 replies
  1. Verena
    Verena says:

    “Accept your sadness. Revel in your anger. Acknowledge your pain”- THANKS for that. I am so tired of the whole “be positive, cheer up, smile.” As my grandfather said, you can’t turn shit into gold (no pun intended). Thinking of you!

  2. Nicola Goodlad
    Nicola Goodlad says:

    Awe Sam I really feel for you – that is a huge decision to have to make but I think you have made the right one, if the bag keeps you healthy and out of hospital then it’s the best decision for you all. Sending hugs and hope tomorrow is a more positive day ❤️ Xx
    P.s what ward are you on that has a gentle hum of machines and whispering nurses???? I was on P3 and there was a constant bleeping from the machines and nurses talking and laughing loudly ??

  3. Gail
    Gail says:

    Hi Sam, sorry you have had so much trouble with your J pouch. I have had a fair amount of trouble with mine over the last 13 years, but obviously not as bad as yours. A couple of attacks of pouchitis but they settled down after antibiotics, going to the loo about 10 times per 24 hrs, more if I ate the wrong things!
    I got a bit depressed about everything last year and the happy pills have actually slowed everything down for the better.
    So, take care, don’t get too peed off or you will need happy pills as well.

  4. Nit
    Nit says:

    You are absolutely entitled to feel like this. You are going through a full-on bereavement and all that that entails. Timm will most likely be going through the same and you can only do your best to support each other through it. Your kids sound fantastic and want their happy mum back. You may worry how Timm will see you, but I’ll bet that he would give anything to see you healthy again, with whatever compromises you both have to make to achieve that.

    Remember the IBD saying: “Better a bag than a box”. I don’t say this glibly at all, as it is also a huge fear of mine. I’m currently living with Crohn’s proctitis and the umpteen urgent toilet trips every day and I worry about the outcome if I can’t get on top of this.

  5. Fen
    Fen says:

    I hear you, I’ve had my share of horrible things happen to my body over the last few years.
    Give yourself plenty of time to grieve and accept the new ‘normal’.
    Keep fighting, you’re amazing x

  6. Rinse
    Rinse says:

    I’m so sorry that you have to go through all this Sam, it is so unfair, and I agree with Nit, it is akin to a bereavement for the life you should be allowed to live. Your words of wisdom bring so much joy to all your readers, you help us everyday……I wish we could help you in return. Lots of love xx

  7. Tara
    Tara says:

    Amazing post! I share your raw (hidden) pain. I had a horrendous ostomy. And now I shit myself. I am on so many drugs and dietary restrictions trying to keep my pouch. Whic is the better life?
    Theyre both 2 evils.
    I feel like you wrote my exact thoughts.
    Good luck xoxo

    • Debbie
      Debbie says:

      I know which is better? I find myself staying home all the time now. It’s embarrassing shitting uncontrollably in public or even good friends’ homes.

  8. Debbie
    Debbie says:

    I also feel you wrote my exact thoughts & I also have the same 2 choices. I had a stoma & temporary iliostomy and could never get over the different kind of smell and see my food go into the bag not digested. I started to get sicker because nutrition issues. After my reversal things didn’t get much better. Still live with visits to the hospital for dehydration and inflation. I swore I would never have the permanent operation. Now choices have to be made & im angry. I hope you find peace with your choices. I can’t eat fresh fruits and vegetables since all this began with my colorectal cancer. I would never push the operation on anyone. No one should judge either.

  9. Jenny
    Jenny says:

    I know this is an old post for you. How did things turn out? I am about to go down the same route and have the pouch removed. Suffered through 9 years of hell and finally gave in when the leakage ,incontinence and raw and weeping anal skin became unbearable.I have made the decision gladly and am looking forward to a better life after almost 40 years of dysfunction with ulcerative colitis and 9 years of dysfunctional pouch.


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