Hello,
I am new to cancer and forums. I would like to hear your experience of life with a stoma and what a stoma is. I had radical chemo radiotherapy last year to cure me of 7 inches of vulval scc cancer and I was left with 1.5 cm. A year later I am told I need extensive surgery and 2 stoma bags. I requested palliative care as I can barely move from either the cancer or the treatment and I have lots of pain. I am stage 3 only because it has not progressed to my torso. I had been informed previously salvage surgery was risky due to having had the previous treatment and risks of healing.
Did having a stoma fitted improve your quality of life and do you have 2?
Thank you 
Hi Jule97215d051 and welcome to our group.
I had a different cancer-mine was cervical, and had chemo and radiotherapy. The cancer recurred and my surgeon tried a radical hysterectomy which was unsuccessful due to radiation damage.
My options then were to have a total pelvic exenteration with a chance of cure, or palliative chemotherapy. I chose surgery and if you click in my name you can read my story and what I had removed in my operation.
I had a huge amount of pain when my cancer started to spread, but it remained in the pelvis. For me, surgery saved my life and I am still here more than 5 and a half years later with no recurrence and zero pain, except from my arthritis which is a different story!
I live with 2 stomas which in themselves do not cause me any issues and I’ve never regretted my surgery. My oncologist considers me cured, so my story is one of a positive success. The surgery I had was massive and took a long time to recover from, but I did recover in time.
I’d encourage you not to think about having stomas “fitted” as that’s not the reality. My stomas are made from my own body and are part of me, not something that has been fitted or added on to my body.
I healed well from my surgery with no complications and no further admissions to hospital. I’m happy to answer questions you might have-are you having the exenteration surgery?
Sarah x
Wow thank you so much Sarah that is amazing to hear, if it gets rid of pain sign me up. So do you have to maintain a stoma does it work on its own? Do I have to change bags? I wanted to try to walk the Camino next year so wondered if this would be possible if I had 2 stomas. Thank you soo very much for your time. And I will definitely check out your journey.
Julie x
ps love your cat
One of the things you’d learn very quickly is that you have no control at all over stomas! Having my bladder removed means there’s nowhere inside my body for urine to be stored so the stoma is constantly producing urine. This is collected in a bag attached to my tummy.
My permanent colostomy is not active in the same way, but produces poo at different times which is collected in a different bag on my tummy on the other side of my belly button. You need to clean stomas very regularly and change the bags-how often you choose to do that is up to the individual. With my urine bag, there is a little tap at the bottom, so I go to the loo regularly throughout the day and empty it in there without changing the bag to a new one. At night, I connect my bag via a tube to a much larger night bag which holds 2l of liquid so I never need to get up in the night to go to the loo.
I change my colostomy bag when I start to feel that something has collected in there-so a few times a day usually. You don’t have the sensation of needing to go for a wee, but sometimes as my stoma contracts I will be aware that it is working. Bags can burst off your body if they’re too full (and they can be heavy!) so it’s best not to leave a long time between emptying and changing them
Walking the Camino is potentially a very big undertaking, and being able to do that would depend on a few factors. The stomas wouldn’t be a barrier themselves to doing it, but it would depend when your surgery took place, how well you recovered and when you planned to do the walk. It’s impossible to imagine in advance how exhausting the surgery is and how much healing is required, and some people do have complications afterwards. It was 3 months after my surgery before I went for a walk around a local nature reserve and I was on a walker to do that, but everyone is different.
Sarah xx
Thank you so much that advice is just what I wanted to know. I appreciate you sharing it with me. Good luck and best wishes Sarah I am following you so I hope this keeps me updated with your journey.
Julie x
I just updated my profile recently after 4 years, so that’s all my most recent news, but I’m active in quite a number of groups in the community so I pop up pretty often in various places!
Sarah xx
Hi Stacy
I am honestly lost for words to read what you have already been through-it’s a truly incredible amount to endure for someone so young-and you look very young in your picture so I hope I’ve not made an incorrect assumption. Just wow, and much respect and admiration to you for getting through such a huge surgery.
I’m so sorry to read you are potentially facing even more ahead…life can seem so very cruel and unfair, and I can’t imagine how you decide what course of action to take next. I hope you might find it helpful being part of this online community and that you’ll be able to sense the support and kindness here that we have for each other. Please keep us posted with your progress and decision.
Sarah xx
Thank you for sharing your journey Stacy. Happy if I am half as brave as you are. Love and best wishes to you
Julie
