Newly diagnosed with Invasive Muscle Bladder Cancer - About to have urostomy surgery - not sure how I will manage this

Hi BigDebo and a warm welcome to the group. You will get plenty of support here moving forward. I went in a different direction so not much help, but we have members here who have successfully gone through this and should be along when they pick up your post. Best wishes.

Hi BigDebo 

I’m almost 62, and had my bladder removed and urostomy formed 4 years ago. I travel abroad regularly and go swimming. To answer your questions, I empty my bag probably around the same amount of times in a day I used to go to the loo when I had a bladder-it depends on how much I’ve drunk. I don’t empty my bag during the night as I connect up to a larger bag which goes on a stand beside my bed.

It leaks occasionally, but not very often, and I personally don’t think the bag is very noticeable, but I usually wear tops long enough to cover that whole area as I also have a colostomy. To go swimming I wear a patterned tankini and make sure I empty my bag before I go in the water so it sits flat against my skin. Happy to try and answer any questions if I can after living with stomas for several years.

Sarah xx

Thank you Sarah, that’s reassuring to hear you have little to no problems and travel goes on. Do you need to take an extra case with supplies when you travel abroad. I’m probably off for a month in my fourth month post op. Do you think that’s going to be possible? 

I personally don’t take an extra bag with supplies as I’m usually just away for a week at a time. I carry the bulk of my supplies in hand luggage and take some in hold luggage split between my case and my partner’s in case of any luggage going missing. I always take more than I think I might need, just in case. 

I had different surgery which involved more than just bladder removal, and would definitely not have been able to spend a month away 4 months after surgery, but my surgery was much more invasive and had a longer recovery time. In my case I wouldn’t have been able to have even a week abroad after 4 months, but I stress my surgery was very different. 

However, you are having a major surgery, and it does take time to recover and adjust. The fatigue after major surgery is very real. The first time I went abroad was around 18 months after my surgery as travel was so restricted during covid.

I think too, it would depend on where you are going-short/long haul etc. And you would need to have appropriate travel insurance in place. My insurance wouldn’t cover anything cancer related until I had been 6 months clear of disease. 

Sarah xx

Hi, I know of someone who went on a cruise during recovery, but 4 months does seem a little soon unless you have lots of support & rest on the trip. I was 57 at time of surgery & told 3 months off work - needed all of that. Was about 5 months before back to doing all usual activities, but 8 months before I shed end of the day fatigue. I did do a long haul flight to visit relatives at 8 months post op. 

To help recovery, build up daily walking gradually (several short walks better than one long one) with lots of rest in between. Eat little & often, drink plenty & just go at the pace your body tells you. If you do too much too soon, you will pay for it the next day. Best wishes, hope all goes smoothly for you.

Hi BigDebo,Welcome to the group.I had this surgery over 4 years ago.I’m happy to help if I can.I’m 63 now and living a full life with a stoma.I’ve only had a handful of leaks and virtually all were shortly after the op when the stoma was shrinking.I empty the bag a few times a day as it’s better not to let it get too full.It is a big operation and recovery can take a few months.I felt much better by the 3rd month post op and went back to work after 8 mths.Best wishes Jane 

Hi Jane - thank you for your message. I’m resigned to the fact that it’s a big op, and expect to be out of action at least 3months. Appreciate the tip about leaks early on as stoma shrinks. Are you happy with its location? Is the stoma on right side above or below belly button? Best regards 

Debs

Hi Debs,The stoma is on the right slightly above the belly button.I’m happy with where it is.The stoma nurses measured me up for it prior to the surgery.I wear trousers more often than skirts/dresses but haven’t had to adjust my wardrobe much.You will need to take loose fitting clothes when you go into hospital as your abdomen does swell post op.Best wishes Jane