Recently been diagnosed with stage 4 cervical cancer after being fobbed off with Menopause excuses.
Before they will start my chemoradio I have to have a nephrostomy...booked for next week and a stoma to protect the bowel during blasting. I'm terrified. Has anyone had the same? I'm worried about how I'll sleep and get around etc.
Too much to fight for with 2 grand babies under 2 years old x
Hi juju737d0798 and welcome to our group.
I’m sorry to read you’ve had such a difficult diagnosis-and that you feel that you were fobbed off too. That must be very difficult to get your head round, and I appreciate the thought of this surgery so quickly must be quite shocking.
I haven’t had a nephrostomy, but I have a urostomy and a permanent end colostomy since I’ve had my bladder and bowel removed due to my cervical cancer, and I have lived with these for nearly 6 years now.
The nephrostomy will mean you’ll have a tube coming out through your back from your kidneys to drain urine into a bag so there will be certain restrictions on your movement etc, which don’t apply for me having my urostomy bag on my tummy, but you will be shown how to deal with the bag-emptying and cleaning routines etc. You will need to avoid having a bath or going swimming, but you will be able to shower so long as the site on your back is covered/protected. You would normally attach the urine bag to your leg.
Are you having a colostomy or an ileostomy do you know? The main difference between the two in simple terms is the output (poo) which is typically more liquid and frequent with an ileostomy. I find dealing with a colostomy very straightforward-and it just takes practice and getting used to it! You should be shown in hospital how to change the bag and clean around the stoma and you will be given some supplies to take home. You will need to order stoma supplies once you’re home but you should get help with this at the start-I had a lovely stoma nurse once I got home who gave me loads of advice, and the nurse should also help deal with the nephrostomy at home for you.
Sleeping may feel awkward at first-you can sleep on your back with a nephrostomy, but you shouldn’t sleep on the side where the tube is as it will need to continue to drain through the night. The colostomy bag on my tummy doesn’t affect my sleeping, but I tend to settle down and not move around in bed much. I still use a long body maternity pillow which I find comfortable and supportive as I had everything in my pelvis removed and it took time to adjust to that. I don’t really need it now but I just find it comfy!
I’d recommend getting a waterproof mattress cover as unfortunately you can experience leaks both of urine and poo sometimes. The stoma will change in size as it heals and settles so it will be important to make sure your nurse helps you measure it regularly in the early days to get the right fit for the bag. That will reduce the chance of leaks, but it’s best to be prepared.
I wear the same clothes as I did before surgery. I’d recommend loose clothes after surgery both for comfort and to deal with the nephrostomy, as you’ll need to cope with the drainage tube and bag.
I appreciate I’ve given you a lot of information here and it will be a lot to process. I’m happy to answer anything I can after my own experiences and hope I can help support you through. This is big surgery for you and it can be difficult to find others who’ve had the same. I found it helped me to think about the outcome of surgery rather than the actual process to get there, and you can read my story in my profile by clicking on my name. You will need to heal from your surgery before starting chemoradiation, so I’d advise just trying to take one day at a time and getting through each step before thinking about the next one. It can feel overwhelming, so I do completely get that.
I hope you’ll find it helpful to be in the group and the community in general-you are very welcome to be with us.
Sarah xx
