ileostomy bag stoma ostomy permanent ostomy after jpouch removal

It’s been a while… The bag is back

Hey guys, it’s been a while hasn’t it, but I thought it time to update on the big operation!

So I got a call on 5th January saying there had been a cancellation and asking if I could come in for surgery on the 6th. It was a big shock, but I agreed and headed in for 7am to the Northern General in Sheffield for my Jpouch removal and permenant ileostomy surgery.

I checked into the pre op ward, saw my surgeon and anaesthetist and was taken down to surgery at around 9am. I was having an epidural inserted for post op pain relief and unfortunately, it took a while, 7 attempts in total!  The anaesthetist was great, very friendly and warm, he chatted and apologised for the complications. He’d actually been my anaesthetist for the last big surgery and we’d had no issues previously.  I’d had plenty of local anaesthetic though so it was not painful at all. These things just happen sometimes!

So once that was in, I laid back and they began putting me under, I literally don’t remember a single thing! No counting down, just bang and out.

I awoke several hours later in recovery, I had zero pain and was just very, very tired. I ended up staying in recovery for a good few hours as my blood pressure was at 80/50 and there were concerns that it was too low. The nurses were lovely, I was just really dozy and sleepy and so I’m sure it was more worrying for others than me as I was snoozing!

I was taken up onto the ward and Timm was there waiting for me, I was totally out of it but pain free and happy. I don’t really remember much of his visit apart from being happy he was there. Apparently he took photos though!

The first couple of days went on a blur, I had an epidural for pain relief plus IV paracetamol, antibiotics and fluids to bring up my blood pressure.  I was a mass of tubes with three IVs in two canulas, oxygen into my nose, a catheter, a drain from my stomach and the epidural tube.  I had two big dressings on my tummy and my brand new Stoma. To be honest, it was all a bit much to take in.

Whilst I had the epidural in, I had no pain at all. But on day 3, the epidural came out and things all got a bit trickier. It was very painful but I had all manner of oral pain meds and it started to get under control. Mr Brown came to see me and said the op had been a success, that it had taken a long time and had been complex but he’d expected that. He was happy with the outcome and now I just need to recover from the op.

So what did they do?

My Jpouch, which was a bag formed from my small intestine and connected to my rectum, was removed completely.  They then took out my rectum and sewed up my anus. I’m now the proud owner of a Barbie Butt! I have no bum hole!!!

He then formed an end ileostomy, this Stoma is on my right side and is permenant.  So now I have my bag for life. The recovery has been hard going, I came home after 5 days and have been recouping in my own bed, which is so much better than being in hospital.

I have a few wounds to be dealing with so its quite tough. I have the wound in my bottom which feels like I’ve been kicked in the undercarriage (high five for using the word undercarriage), my wound in my stomach is 17cm long and goes from the top of my belly button straight down into my groin.  This is painful and when I stand, it feels like everything is going to fall out!  The top inch has opened up and so it’s being packed and dressed by the district nurse twice a week.  Then there is a 1.5 cm wound in my stomach where the drain was, this needs to heal from the inside out and so is open and slowly drying out.

Then there’s the new Stoma.

I am struggling. Mentally and physically.

Physically, I know what I’m doing and how to change bags and so that part is ok, but the stoma has come away from the skin on one side and has left a big hole into my abdomen. This is painful and makes it hard for the bags to stick.  The Stoma nurse says it happens sometimes, not to worry about it and that it needs to heal on its own. I can’t help but be concerned that it’s getting poo in it and will get infected but she says it will be fine.

This, in turn, has made my skin around the Stoma very raw, like an open sore. It hurts a lot and makes bags not stick so I then leak.  The leaks are soul destroying.  There’s nothing more dismaying than being covered in your own shit. It makes me cry and feel desolate.

I had a massive leak and couldn’t deal with it alone, I needed help to get my clothes off, I had to shower and I needed Timm’s help, though I didn’t want it. I cried as he sat me down and peeled off my soiled clothes, begging him to leave me to it, even though I know I needed the support. He was calm and loving and wiped away my tears, telling me everything would be OK.

I’m kind of surprised by my struggle. I thought that because I’ve had a Stoma before, that I’d be fine with it.  I’m not.

I don’t feel ready.  I change my bag but I hate seeing it, looking at it, touching it.  I wish I could ignore it completely.  I know this isn’t my usual happy and positive stance but it’s important that I’m honest.  And honestly, I feel sad, angry and frustrated.

It’s the knowledge that this is forever that hurts. That now there’s no going back and that till the day I die, I’ll have this bag.  I want to scream that it’s not fucking fair. I’m angry that this is the hand I was dealt, pissed off that I can’t have a normal, healthy body.

It’s early days though. I’ll learn to accept this and adapt to my new life.  You know why? Because I don’t have a choice. I don’t want to feel this sad forever and so I’m going to have to learn how to be happy with this change.

After a week at home recovering, we got some news that has shook everything. My grandpa passed away this week. It was unexpected and is a huge blow to us all.  I visited my mum, nannan and family, though it was physically tough, I was in a lot of pain and had a terrible leak on the way home but I’m glad I did as it felt right to be in their home and surrounded by family.

grandfather and granddaughter

So I am home and recovering.  I am an impatient patient, I just want to be back up on my feet and doing everything, but I know that I need to listen to my body, rest and heal.  It is so good to be back in my own bed rather than hospital, I have had so many lovely visits from friends and family.  Timm and the kids have been brilliant, and whilst Timm was at work last week, my awesome friend Caroline came over and looked after me for two days and then my mum came for four days.  They’ve cooked, cleaned, looked after the kids, cared for me and just been fantastic.  I couldn’t thank them more, they are both brilliant.

You don’t know just how lucky you are to have friends and family till you are broken and in need, we have both been blown away by the love that has been showered on us all as a family since the op.  We had three friends come over to the house when I was due out of hospital and cleaned up for us, changing bed sheets, hoovering and leaving my bedroom welcoming with flowers and candles.  We’ve had meals delivered to us, movies sent, chocolates, cards and flowers as well as people just coming to visit and sit with me.  Honestly, I am humbled, thank you to every one of you.

I have also had so many emails, messages, texts and phone calls from friends, family and readers of this blog, thank you so much, it means so much.

And so now I am just at the stage of resting, recovering, nurse visits and healing.  I still have quite a bit of pain and I’m on painkillers but it’s not so bad, I am still sleeping a lot and being upright and walking is hard work, I am sitting on donut cushions and have a million pillows in my bed to prop me up and surround me in order to get comfortable.  It is flustrating (my new word garnered from watching two whole series of Hell’s Kitchen, a mix between flustered and frustrated!) to be unable to just get up and do all the things I want to.  We are due to move house and so I really need to be packing, but I am instead pointing and things and asking others to pack for me.

But I will get there, I am sorry for my lack of blogging, this surgery was so big and scary and the recovery so tough, that I needed a little time off.  During the last operations and recovery, blogging had felt like therapy for me, this time I needed a bit more head space, but I am now back and will be writing about my recovery and life as So Bad Ass with a vengeance!


Sam xxx

16 replies
  1. Keith Thomas
    Keith Thomas says:

    Hi Sam
    So glad you are well and on the mend ?
    Welcome to the Barbie butt club,I was so lucky oppted not to have the pouch,one opp one recovery and now 4 years on all great.
    I have no problem with the bag for life as this is now me and I am so well, with a normal life.
    Stay positive and keep the great blogs coming .
    Your fan Keith
    #ostomate4life ?????

  2. Jen
    Jen says:

    Hi Sam. So glad to hear that your surgery went well. My other half’s surgery was a year this April and what a difference it made to our lives. We can do normal things without worrying how he is and if he is going to flare anytime soon. Things are going that well that we are planning to try for our first baby this year. It is tough to start with
    I watched the love of my life go through this so I can sympathize with timm too. Wishing you a speedy recovery. Jen.

  3. Ally
    Ally says:

    Thank you so much for this! I’m home about three weeks from surgery and it is still a lot of crying and feeling sad. I can’t seem to have two good days in a row and I’m feeling really beat down. Honestly I thought I’d be handling this better.

    I know we will both adjust; we have to 🙂

    • laura
      laura says:

      hi! i really hope it all gets better for you, im nearly 4 years post op since my stoma and it was hard, but it really does get better. i just wanted to leave you a comment, ive got my fingers crossed for you x

  4. laura
    laura says:

    thank you for your blog sam, its so honest. i really hope things get better soon. i have been looking out for updates from you and im glad the surgery went well. your mind needs time to recover, not just your body xx

  5. Dave Pawson
    Dave Pawson says:

    Broken but mending. Good. Stoma for life? Guess that downer is you and your body getting over the shock of the operation? I do hope the split seams heal – I’d be worried about infection too, but hope the stoma nurse is right and it will heal.
    Good to hear you have the support of friends and family locally.

    Patience patient, you’ll be back!

  6. Jenny warmington
    Jenny warmington says:

    Hey Sam, I had my Barbie bum I. April with after complications with wound care and I just want you to know I’m fine and so will you be. Don’t worry about forever, just take things one day at a time and give your mind time to heel along with your body (and heart).
    Thinking of you

  7. Lotte
    Lotte says:

    Hey Sam!
    I can totally relate Hun I got surgery in November for my hernias and they also re sited my Stoma – it was physically and mentally destroying and the hardest time of my life. I woke up after my operation screaming as my IV was tissuing (not going in to my vein) and they tried to give me an epidural before hand but I got a weird stinging in my groin so they abandoned it ? anyway it was a tough few weeks and esp the first three days not getting proper meds. They also cut away some fat down my scar line which meant there was a lot of tension on my wound and Stoma so my Stoma completely pulled away from the skin and I know how incredibly horrifying it is to see that happening. It does take time but my Stoma is looking better every day if you want to see progress pics let me know and I will email you! I also had my main wound pull apart too and that’s taking forever to heal and I also developed a fistula from my drain wound and an infection in my mesh and next to my Stoma which I have to irrigate and be on antibiotics for quite a while for! Anyway what I am trying to say is it is bloody hard but just think about how much it is going to be worth it – I still have leaks, wounds, irrigation etc but now 2 and a half months after my op I feel like a new person which I haven’t felt in YEARS. I thought with my first Stoma op that i would feel like this and never really did but I feel better than I ever could have imagined! Just try to remember that you can only get better from here and take it easy sweetie! Be kind to yourself xxxxx

  8. Thaila Skye
    Thaila Skye says:

    Oh my, it certainly sounds like you’re going through a tough time at the moment. I don’t think you can ever quite prepare yourself for ‘that moment’ when you first look down and see everything. I hope things get easier for you soon, my sweet. I know it won’t be the same experience like your first stoma, but I hope it heals well and becomes as easy to manage as possible. <3

  9. Elaine Ford
    Elaine Ford says:

    Hi Sam, I just wanted to leave a comment and say thank you. Thank you so much for sharing so openly. I started following you a year or so ago because my husband has UC, and in that time you’ve inspired me so much with your courage, your frankness and your positive attitude towards everything you’re dealing with. It’s so sad that you lost your grandpa on top of everything else that you’ve gone through recently and you have every right to be struggling and feeling low. Please don’t apologise… your posts are always real, and that’s why you are such a source of strength to so many who follow your blog. You will find your way through this, as you have with every other challenge. I wanted to share this video with you… I think you might find it helpful – it’s my go-to source of inspiration when times get tough xxx

  10. Millymollymandy
    Millymollymandy says:

    Hi Sam, I am happy that the op went well and that you are surrounded by lots of loving friends and family to help you get through this. My situation was different as it was due to rectal cancer and I am sitting here on donuts typing this 11 months after my op! I was in for 11 days and my Barbie Butt scar runs from the top of my butt crack to just behind my vagina. It still hurts or twinges depending on my position and I have nerve damage problems affecting my sitting, so I’m taking a drug now for nerve damage and it has helped a litle bit.

    I am used to taking my donuts everywere, to the dentist, the hairdresser and to restaurants – but secretly I despair too and wonder if I will ever be able to sit normally again. However I didn’t have any problems with the stoma and apart from the bloody thing pancaking too often (it’s a colostomy) I at least don’t have any emotional problems with it and feel fine about it – though on the odd occasion I do feel low regarding it I just think back to trying to poo past a large tumour! Oww! It works every time. 🙂 Thankfully I also have a wonderful hubby who doesn’t bat an eyelid at my bag as he is just happy he still has ME. He has watched me change it with interest and didn’t run for the sick bag.

    Everyone is different (and so are their situations and their experiences after surgery). I wish you well and hope you will feel better both mentally and physically as soon as possible. Though I know it takes time. Just try to accept that and do what you can do but don’t push it. xx

  11. Sandra E Chubb
    Sandra E Chubb says:

    A friend pointed me to your blog and I feel deeply moved by what you have written. What a brave decision you made. Your bravery and the support of your husband, family and friends will get you through the coming months and years. I wish you all the best. x

  12. Laura Smart
    Laura Smart says:

    Hi Sam

    Just wanted to wish you all the best. I love reading your blogs, you say exactly what I’m thinking. I’ve had nearly 17 years with my bag for life and barbie butt and possibly about to head back down that corridor to theatre for the 18th time. This life sucks but you know what it makes us stronger.

    Keep fighting and just take your time…easier said than done I know. Rest up and take care


  13. Katrina
    Katrina says:

    Dear Sam, Wow, you sound so much like me and what I’ve felt like and been through. It’s nice to know we aren’t alone but when you are sat there covered in poo, when you have leaked whilst you are out then you feel very alone! But you do just have to get on with it! My stoma isn’t brilliant and has been like yours (hence the leaks!) . My Crohns is retracting my bowel and the stoma is now very tiny. They have to operate again to redo it but also do lots on my pelvis cus the Crohns has effected that. ? Some days I am angry, and frustrated but I don’t live I constant pain anymore so that’s a positive. I am so glad to hear you are recovering and it’s taken me months !!! I thought I’d be back to work in no time but I’m only starting back in Monday for a couple of hours! It’s been a slow process and it’s not easy when you wanna dive back into life with our children ( I’ve four!) but please rest and don’t over do things because when you are mentally ready … Normally your body isn’t ! You sound like you have such a loving family and friends ( and me ?) so just take all the help you can get ……. Even weeks later! I always think On my bad, sad days ….. There is always someone worse off! And that’s sad but true! Xx keep smiling strong lady ?. I think of my bag as my other ‘Mulberry full of shit!’…. The one I have on my arm is full of shit too! Lol . ??? ? Chin up! X

  14. Mike B
    Mike B says:

    Thanks for telling your story. I’m a UC patient and have ileo ostomy. Im scheduled for the jpoich but might skip it. It sounds like so much more literal pain in the A.
    For now i just have a wierd pushing or tickle sensation when i make poo. I found NuHope rubber cement to be a godsend for touching up bags or juat making them stay put by a swab and 4 minutes wait, then sticking the sack. I use tje extended wear sacks too.

    Get belts and stoma shields. Worth gold! I climbed under my car and did repairs, went mtn biking, and swimming.


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