Just arrived home after debulking surgery on Thursday. A stoma was never part of the plan 😔

After 3 admissions and aborted surgeries due to low white count/neutrophils... It finally went ahead last Thursday. Prior to surgery my CA125 went down to normal range (in 3 chemos) and scan showed excellent response. My surgeon was convinced that I wouldnt need anything more than the usual debulking. Imagine my horror to wake up to a stoma, just didn't see it coming. It was apparently hiding in my transcending colon and adhered to my bladder. I'm very grateful to my surgeon for removing every bit of disease but I've had to pay a price. I know I had no choice but it's just another complete "bug&er to go with the rest. Just caught site of myself in mirror on the landing mirror...... I look bloody awful!!!

It's hard to imagine pain and nausea ever being under control but I know it will. Why do we rush ourselves?

24 Replies

  • Hi there, did they say if this is temporary or Permanente? I am shocked they didn't see this coming. When I had my surgery I was told till they cut me open they really didn't know how bad it was. That was after a CT scan & 6 chemos. At least now you can heal & get better & hopefully put this behind you. Take care Cindyxx

  • Hi Cindy, thanks so much for responding....... well the surgeon said it could be reversed in 2 years as long as I stay cancer free. Difficult because if I don't recur within 2 years would I ever want to 'revisit' it and take risks?

    Love Marian

  • Hi Marian, as time pass & you are in a better place then this worry hopefully will ease. I wish you all the best take care Cindyxx

  • Dear Marian,

    First of all congratulations and well done you for being back at home so quickly after this big surgery. You must be doing exceptionally well - some people take three weeks after that same surgery.

    I really feel for you. A stoma is not a nice thing (and I speak from experience); and the shock of it does take a fair old amount of getting used to. May I ask whether it is a temporary ileostomy (as I and many others have had) or a permanent colostomy? It makes a lot of difference as to how to cope with it.

    I am sure many other ladies will reply to your post so I will keep this short for now. Let me just say that it really, really does get better. Please do feel free to PM me with any specific questions you might have.

    Hang in there!




  • Hi Judith

    Thanks so much for responding. Mine is a colostomy. The surgeon said it could be reversed in 2 years as long as I stay cancer free. I will PM you later


    Marian xx

  • Hi Marian, it is very early days yet and you do know your cant do any house work for six weeks, no lifting anything heavier than a cup. I am sure every day you will feel stronger. I am sorry about the stoma but hopefully it can be reversed at a later date. Dont be hard on your self, it is barely a week since surgery so it is normal to feel so tired and sore. I hope you got meds coming home. all the best

  • Thanks so much. All you say is so true, I just feel overwhelmed at the moment. I think I need to slow down and take one step at a time. It's a rollercoaster that's for sure

    Love Marian xx

  • I hope you are feeling better soon, you will be in my prayers tonight before I sleep. Hang in their, you can do it💕

  • Thank you xx

  • Hi

    Once you get used to the stoma it becomes part of the routine. They may have already told you to eat a low fibre diet. Join the colostomy association order a radar key is my best advice. I don't like it but prefer it to a tumour.

    Good luck with your recovery

    LA xx

  • A stoma better than a tumour is so right. I need to try and love her (Grotbags), but I detest her at the moment xx

  • I do too, I didn't name mine although some do, I thought it was a sign of acceptance lol there's a great FB group, 'I have a stoma and I'm not ashamed' that's worth joining

    LA xx

  • Well done on finally having the surgery and getting home so quickly. Take lots of care and do as little as possible but do have little walk around to help stop clots forming and build up your strength. Take the anti constipation drugs, they're there for a purpose and don't be too brave, take the painkillers xx

    Could I suggest you speak to your surgery team or district nurse team who's been assigned to you to ask if it is a temporary ileostomy or permanent colostomy? This way you will know what you're dealing with and can get to grips with it a little more. It sounds like you had an excellent surgeon as he found the little b@€#$rd in other areas and dealt with it there and then.

    Keep strong your stoma is helping you. Sending big encouraging hugs and lots of love ❤️ xx Jane

  • Thank you Jane. It's a colostomy that can be reversed if cancer free for 2 years. That's a tough one because we just don't know.

    Thanks for the advice I will try and heed it.

    Hope you are doing ok?

    Love Marian xx

  • It's good the surgery finally went ahead and it sounds as if the surgeon did a good job. It must have been a shock to wake up and realise you had a stoma. I know many ladies here have them and they'll be able to give you good advice.

    Take things very easy for a while but try and potter around each day. Even to the end of the garden and back. It helps, especially being outside.

    All the best!

  • Am sending you much love. I can just about imagine what a shock it must have been for you...it's a lot to do with expectations, & having not been prepared for a bag it must feel incredibly hard to adjust to the news.

    I had my surgery a month ago today, & am struggling a lot still albeit was lucky & didn't need a stoma. My advice would def be to sort out any constipation issues before they take hold, this has caused me no end of issues (albeit I was readmitted after my surgery with an infection hence my recovery has been slightly delayed I feel)

    I can also identify with feeling awful. Rest assured how we view ourselves is not how others see us. They love us regardless of how we look or feel, & we should all try & be kinder to ourselves. This is such a tough & horrible time. Try & listen to what your body needs, think of something, anything that might brighten your day, be that food, cake, a foot massage, watching a film, anything to get you through each day.

    Hope this helps a teeny bit, I know this forum has been an utter life-saver for me. Use it whenever you need if it helps to get you through this ❤️❤️❤️

  • Hi Sarah, thanks for replying when you are still struggling so much yourself from surgery. Like you I can't get on top of the constipation. The other aspect is the constant weak, shakey, energyless feeling. It sounds like this persists for sometime.

    Hope you start to feel truly better soon

    Love Marian xx

  • It really does Marian, I'm at least trying to get in & out of bed today, & 'move' more but still very shaky & weak.

    I'd def do everything you can re constipation. If that is under control I swear you feel better...

    Hugs for today xxx

  • I,too, woke up with an unexpected iliostomy along with no spleen. I don't think I really took it in at first and was so relieved that they said it was temporary. However having it reversed seems a very long way off. 9 weeks on it is the main source of pain and discomfort-mostly because of sore skin around the stoma site. My stoma nurse left it 4 weeks before producing some stoma powder. I now tie a scarf around my hips to support the bag-I find this better than the expensive belt that I bought. I have now ventured out a few times and coped.

  • I sympathise with how you are feeling. I knew I was going to have a stoma but it was the most horrible thing to get used to. I was so frightened to go far from home for a long time but I gradually got used to it. I was initially told I would have a reversal in 6 months but in the end it was 10 months. I made a lot of fuss so I think they wanted to get rid of me. Definitely ask again and again for a quicker operation. Take it easy for the next few weeks and get as strong as possible. You will feel better soon. Best wishes. K.

  • Do you mind me asking-how hard was the reversal?

  • Hello, hope you are improving each day. The reversal was another major operation with a five day stay in hospital and quite a big scar. For me it was worth it. I did cope very well with the stoma when I got used to it but nevertheless couldn't wait to get rid of it. K.

  • Thanks Katie

    Have you had any recurrence since it was reversed? Xx

  • Yes, I had a recurrence about four months after reversal. Now been o.k. for 6 months and feeling great

You may also like...