Living with urostomy and colostomy

I’m struggling to go out on my own I panic when people are around me and worry about my bags. I just want to stay indoors and face any one. I’m feeling ok in myself with regards to recovery. I’m just struggling with the bags and get down a lot 

I do honestly get that completely. I am housebound myself as I’m disabled, so I need help to go anywhere and it can be pretty lonely being in the house all the time. 

Let’s look at the bags first, and see what makes you anxious about them in terms of going out.

When you’re at home, do you suffer from leaks with the bags at all? if so there are numerous different products you can try to help with this.

I went through a period where my urostomy bag leaked constantly, to the point I wasn’t even getting sleep. I spoke to my stoma nurse, and she suggested a different type of bag, with some extra products to help with adhesion and this changed things round. I no longer have problems with it. 

If I go out, which at the moment is only for hospital and gp appointments, I would always take a bag with some supplies and a change of clothes. I make sure both bags are completely empty before I leave, and that gives me confidence that nothing will hopefully happen! 

I’ve had my colostomy bag burst and leak in the car, sitting in a cafe having coffee, in a bus, in an airport. But I’ve always got supplies with me to get to the closest disabled loo and sort myself out. I travel abroad regularly because I don’t want to be held back by two stomas, so even though it’s not easy, I get assistance and I go. People are busy getting on with their own lives and I just think they are too busy to be looking at me! 

I suffer from anxiety and I do have a therapist who helps me-I have weekly sessions, and always feel much better after talking with her. Have you had any counselling at all? If you haven’t, then I would really recommend it. 

You could get a toilet card for when you’re out in town or out and about, which you can show to staff to get quick access to a loo, and I try if I am out to use the disabled loo as there’s more space. If you wanted to call the Macmillan Support line you could ask them to send you one.

I’d always recommend the support line too if you just want to talk with someone. They are kind, they listen and can refer you to services which could help you.

It does take time to adapt to the new life we’re faced with after our surgery-I can’t say my life has returned to what it was, but I have accepted how it is and try to make the best of it. 

If you are able to chat more about all of this, I’m happy to listen, and try and help if I can. I’m 4.5 years out from my surgery, and I think I’ve learned to adapt to this new life in the best way I can. You are only 4 months from your surgery, and that’s not really very long in terms of learning to deal with everything that’s happened, both physically and emotionally- so don’t be too hard on yourself,

Sarah xx

Yes I had the same in may 2024. 

Dear Star, I only have a urostomy bag but I feel for you when you say your bag used to leak often. Mine was fine at first but then after a few months began to leak more often. It took a lot of energy dealing with that outside as well as feeling upset about it. But I made sure I got the nurse to help and now that's much less often. I always take pants, leggings and bags etc when out and have changed it in all sorts of places. The best trick I learnt was to make sure to hold the bag onto me (after placing it) for longer so it sticks well in the first place. I cup it for 2 minutes timed by a mindfulness app on my fitbit or phone and do my deep breathing. It now leaks much less and I've relaxed a lot. It's worse when I get very hot or when the weather is cold. My nurse also taught me to warm the bag up first while preparing to change it to activate the adhesive. I stick it in my bra, with the plastic protector next to my skin for a few moments. Or you can put it in your armpit - she says that's what men do. It has helped such a lot and calmed me down about going out. Also, when it happened at book club, telling my friends it wasn't a problem with the stoma (ie my body) but with the stickiness helped them - they were worried for me that it was a physical problem and that frightened them, instead of just the glue!

And stoma pants that fit properly made a big difference plus, as I have a lot of stomach flab, the nurse suggested a stoma belt which adds to my confidence.

I hope this is useful and do think that getting out and meeting people helps me cope. Staying at home made me worry more but now I feel much better in myself and nobody knows I've got a stoma. I do recognise that having 2 is harder but maybe the above on adhesion would work for both bags.

Good luck

Yes, I know you had the exenteration surgery 4 months ago, but I was trying to get to the bottom of what was giving you issues about going out and why you were struggling to see if I could offer any advice from being through it myself. 

Sarah xx

Thanks Latestart good tips there! Yes, the adhesion tips do work with both bags, as I can confirm. I don’t use special stoma pants or a belt though as I find I manage well without them. But anything which gives more confidence is a good thing in my book! 

Sarah xx

Hi Dorota,

I'm Hel, Glasgow based.   Just been advised I will have the same outcome as yourself with the two uro and colo bags on the body.... if I get through the surgery, I'm 61.

I had cervical cancer 1.5cm with a radical hysterectomy May 23, bleeding since then... with 4 internal checks with my gyno onco and he didn't spot advanced the tumour... vargina cancer at any of the clinics, injustice doesn't come close. 

Need to put a line in the sand.   Diagnosed with vargina cancer, July 5th 24, Aug 27th find out the cancer has spread to the rectum wall (so much for being monitored closely).   Because of the hysterectomy I have scar tissue and all the remaining organs fall into the space where the female productive system lived.   So bit of a mess and the Consultant confirmed yesterday an antira exenteration will be around November 24.    Jeez ...... is all i can say to that.  Worried my next PT scan to be booked, will confirm change, which would mean a 4th wait for an MDT outcome and whether or not surgery will still be a choice.

Something needs to be done about waitlists.    Between diagnosis and surgery/treatment I will be 5 months with advanced cancer.   Anyone out there can help me find a way to escalate this please write me!

Best, Hel

Hi Star10473, I'm Hel, Glasgow based.   Just been advised I will have the same outcome as yourself with the two uro and colo bags on the body.... if I get through the surgery, I'm 61.

I had cervical cancer 1.5cm with a radical hysterectomy May 23, bleeding since then... with 4 internal checks with my gyno onco and he didn't spot advanced the tumour... vargina cancer at any of the clinics, injustice doesn't come close. 

Need to put a line in the sand.   Diagnosed with vargina cancer, July 5th 24, Aug 27th find out the cancer has spread to the rectum wall (so much for being monitored closely).   Because of the hysterectomy I have scar tissue and all the remaining organs fall into the space where the female productive system lived.   So bit of a mess and the Consultant confirmed yesterday an antira exenteration will be around November 24.    Jeez ...... is all i can say to that.  Worried my next PT scan to be booked, will confirm change, which would mean a 4th wait for an MDT outcome and whether or not surgery will still be a choice.

Something needs to be done about waitlists.    Between diagnosis and surgery/treatment I will be 5 months with advanced cancer.   Anyone out there can help me find a way to escalate this please write me!

Best, Hel

Hi  and welcome to the group.

I’m sorry to see what you’ve been through already with more potentially to come. 

I had a total pelvic exenteration 4.5 years ago for recurrent cervical cancer and so I can understand how you might be feeling about that. 

It can seem crazy how long the waits are in this process. I was diagnosed with my recurrence in the October/November of 2019 and had my exenteration surgery in March 2020. I had no treatment during these months, but did get opened up to try a hysterectomy, where it was deemed impossible to complete so I was just stapled up again.

If you’re unhappy with your care and treatment you can, in Scotland, contact PASS-Patient Advice and Support Service (pass.scotland.org.uk) where you can get advice and raise a complaint. 

The waiting is really hard, but it’s important to have a petscan to ensure that surgery will still be possible. You might also wish to join any of the other groups in the community-I usually post in the Cervical Cancer group and the vaginal cancer group and would be happy to answer any questions for you based on my own experience with this surgery.

Sarah xx

Hi Sarah,

I did have a few questions, not sure how this works in relation to privacy,  can I PM you on this site or just ask questions here?