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 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

Hey Taff, thank you so much for you’re honest and great advise. I have read your reply a few times and appreciate the time you’ve taken to share your knowledge and experience with me. I really hope I will become as confident with time.   I do admire your strength and you’ve got me thinking (in a good way). Best of luck for the future. 

Many thanks

Alex 

Thank you Lesley for your reply! It really has given me some relief to know there are others out there coping with it.  Hopefully with time I will start to feel more positive and confident. Enjoy your holiday! 

Many thanks

Alex

Glad I could be of some help. It might also be worth remembering that you're not alone in your way of thinking, from reading various stoma forums over time, it's clear that, at least in the early stages, many people think as you and I'm the odd one out here.

Most people seem to come to terms given time and practise, albeit that there's an occasional person who never does. Rare though I think.

As I said earlier, the single most important thing is calmness. and then an acceptance that **** happens.

Actually that's another option worth trying, don't shy away from the words. Personally, I can't be doing with using the word 'poo', it's like talking like a six-year-old. Try saying to your husband, 'I've just got to get used to dealing with ****' and see how freeing it is.

My use of the word here is to show you respect by treating you like an adult. It's an adult word, used by the majority of adults and the only reason I've misspelled it is so I can use it without getting it starred out.

Anyway, I'm burblin' now.

All the best

Well done, it’s true, **** does happen, it happened to me too. It does take a while to adjust, but with a good support network and caring friends and family, we get through it.

Only another colostomate would know what we go through, and I wasn’t aware of forums when I had mine, but like most things, it’s good to know others out there are going through the same ****....

xx

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? 

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