Not coping with stoma bag

I’m 39 years old and on 20th Aug I was told I had bowel cancer. I’ve just returned home from hospital after lower anterior operation and have a bag, which I pray can be reserved In a year.  I’m really struggling with my stoma, even looking at it makes me feel ill. I’m wondering how I’m ever going to cope.  I absolutely despise it all and changing my bag is just horrifying. My husband has had to change it for me since we’ve got home and I just feel humiliated by the whole thing.  Will it ever get easier? Will I be able to cope on my own and accept it? Just wondering if anyone else felt like this! 

Parents
  • Hi Alex, 

     

    I am 40 and was diagnosed with bowel cancer in May this year.  I am still undergoing treatment to try and reduce the tumour so that they can operate. Like you, I was uncertain of how I would cope with a Stoma and one of the first things I thought was that hopefully I would not need a permanent stoma.  I believed at that time I would get a Stoma when the tumour was removed, however, the first MDT recommended that I have a colostomy to rest the bowel and avoid a total obstruction before I started chemo and radiotherapy.  I initially found this recommendation upsetting but after having the colostomy operation, I have found it easy to manage and in all honesty although I hope eventually I will get the Stoma reversed, I am comfortable living with it.  I have to have the colostomy reversed and an iliostomy put in place when I have surgery to remove my tumour to allow the bowel to heal. It is scary to start with but it doesn’t take long to get used to and some humour helps!  My husband definitely wouldn’t go near it lol. It doesn’t hold you back from any normal activities, just a bit more planning sometimes.  We are going on holiday to Florida next week and I was a bit anxious about the Stoma for travelling and  swimming/sunbathing but just delighted that we are able to have the holiday we booked last year and looking forward to it.  I hope that you feel a bit more positive about things as it settles down.  It just takes some time to get used to.

     

    Lesley

    x

  • Hi Lesley,

    I’m new to this site and due to have my op to fit a Stoma in a few weeks time, I’m pretty nervous about it all but it has to be done.  You mentioned about a long haul holiday; we have booked to go long haul in November this year, that only gives me a few months to get used to the stoma etc before we travel.  Do you think I will be ok to travel so soon after the op? 

     

     

Reply
  • Hi Lesley,

    I’m new to this site and due to have my op to fit a Stoma in a few weeks time, I’m pretty nervous about it all but it has to be done.  You mentioned about a long haul holiday; we have booked to go long haul in November this year, that only gives me a few months to get used to the stoma etc before we travel.  Do you think I will be ok to travel so soon after the op? 

     

     

Children
  • Hi STB, I just joined too and think this is an older thread, but like you I am waiting for the same op, not easy the waiting is it? 

    Like you, we have a long haul holiday booked and I am unsure what to do about it, let's hop someone comes along and advises us. 

    If you need to chat, I am sure there will be a facility to pm on here and as we are in the same boat, so to speak, always have a willing ear. 

    All the best with your op!  

  • Hi, I had a fabulous time in Florida and managed fine with my Stoma there, I had a couple of occasions of having to rush to the toilet with high output but generally found it no bother.  I rang BA in advance to ask for seats near to the toilet on the plane and they booked these no problem for me.  It was good to have the reassurance but think I would have been fine if I hadn’t had these.  I managed going round the parks with the walking and going on the roller coasters as I would have before.  I was a bit more tired than usual and usually flaked out by 10.30pm but the days were full on! I found that the holiday was uplifting and gave me a boost after the treatment I had been through and helped me to manage the next treatments.  Everyone is different, you will know yourself how you are feeling after your surgery.  It’s likely you will feel tired and weak initially, having a Stoma can take a little while to adjust to and accept emotionally but on a practical level, it doesn’t take long to get used to managing.  Take it easy after your operation. I really hope all goes well for you and you manage to have a nice holiday.  Sending lots of healing thoughts and good wishes x

  • It is always an anxious time waiting, hope it’s not too long. Because of my chemo dates and waiting for scan results, I wasn’t sure until a few weeks before whether we could go to Florida but I found it really helped me to stay positive and relax with everything else going on.  I had short course radiotherapy the week before we went and I think most people thought I was crazy but the holiday really was therapeutic for me!  Sending best wishes to you for your upcoming treatment and wishing you a speedy recovery x

  • So pleased you had a great holiday, I am sure it will give confidence to other  people travelling! 

    Thank you for the good wishes and if you have treatment ahead, I hope it all goes well! 

    Can I ask if it was difficult to get travel insurance? x

  • Hi Poppies

    Thank you for your best wishes and i send the same to you. 

    The holiday dilemma is playing on my mind but hopefully all will be well and we will still get away for a relaxing break.  

    Hope all goes well for you

  • Thank you so much for your encouraging response and glad your holiday went well

    I have taken your advice onboard and will hopefully recover well from the op and get used to having a stoma in good time to go away in November. 

    Thanks again for replying so quickly x

  • Offline in reply to STB

    Hi i think it depends on how you feel but if you feel well enough and yiu can cope go for it xxxx tot ileostomy for 43 years xxxxx