My Story So Far (May 2020 to Jan 2026)

 I have not had this experience (I have metastatic triple negative breast cancer). I have however seen several posts from a lady who had a pelvic exenteration several years ago. SarahH21 

I hope that by tagging her in, she will reach out to you.

Hi Shaz 33 

I had a total pelvic exenteration in March 2020-if  you click on my name, my story is there. I’m happy to chat with you about my experience if you’d like to-it’s certainly life changing surgery, but after almost 6 years I’ve not had a recurrence of my cervical cancer and am considered cured so it was worth it for me.

Thanks for tagging me Coddfish 

Sarah xx

Thanks for reaching out to me.  I have read your story and you have certainly been through the wringer. It's great you are cancer free, but the expense of the treatment has certainly taken it's toll.

I would certainly like to know more about your hospital experience and the after care you received following the TPE.  I am a wee bit older than you and am concerned about managing at home for the first couple of months.  I live remotely so no local support on hand.  Did you get any hospital equipment - bed, walker, wheel chair. Did the stoma nurses visit and if so how long for?

Any tips you have for making life easier during the recovery period would be greatly received.

Tx

Hi Shaz

My care in hospital was generally very good-first in the high dependency unit and then on a gynae ward. The only real issue with that was that the nurses had no experience in dealing with stomas, so initially I had a lot of leaks and wet beds. The stoma nurses came round occasionally with supplies for me, but weren’t very helpful, however most people have a muscular better experience than I did with stoma nurses in hospital from what I’ve read from others.

Keep on top of pain relief-I tried to be a bit of a hero, and not ask for it enough but I realise now this was silly. There is help if you ask. It was very difficult for me initially to get out of bed, even to sit on a chair so I needed help with that and being taken for a shower which I could not do myself. I felt absolutely exhausted.

When I was discharged after 2 weeks a stoma nurse in the community called round every few days for about 6 weeks. She was invaluable for advice and support. These nurses are tied to various stoma supply companies but can get products made from any manufacturers. She was much better than the hospital nurses. 

I was provided with 2 walkers *one for upstairs and one for downstairs) and that was all. But I had my partner, who was working from home, to look after me, and shower me etc. often I was too exhausted to shower so had bed baths and help with changing my stoma bags, I had a couple of visits from nurses to have my staples removed and deal with a small  infection in my abdominal wound, but their visits were not reliable and they often failed to come. My partner relied on advice from our local pharmacist about care of my wound and dressings.

I’d recommend you have an assessment done in hospital before you come home about any care which needs to be put in place for you. Initially you will need a lot of help and I’m afraid there’s no sugar coating this. I’d recommend getting a waterproof mattress for your bed which will help, and a support pillow. I used a full body pregnancy support pillow as it’s a very strange feeling to have everything removed from your pelvis. I was very very tired-everything was hard for me in those first early months. I slept a lot. I had no appetite and vomited a lot.

It would have been  impossible to change my bed by myself so my partner did that. Sometimes we had multiple changes a day. Sitting was difficult for around 6 weeks until I was more healed, so lying down was more comfortable. At night I am attached to a larger bag for urine collection, so I don’t need to get up. However, this limits the amount you can move in bed and how you lie, especially as you have a bag on each side of your tummy. you get used to it! 

Introduce food carefully, chew a lot and eat simple, easily digested food at first. I can eat and drink basically anything now, but lots of things upset me initially so I learned to avoid anything fatty like cheese, and milk products were initially difficult with my colostomy but everyone is different. It’s a case of trial and error at the start.

Stomas change in shape and size as they heal, so you need your stoma nurse to show you how to make sure your bags are a good fit, with the hole in the bag fitting smugly around each stoma, and you might have to try several types before you find what works for you. Both bags can leak or burst off from your body when they are too full, so you need to empty them regularly. You might still have accidents-I had many in the early days-but that improves with time and practice. 

Rest and listen to your body as you recover. Don’t try and do too much too soo, particularly bending and lifting things as you are at risk of hernias under your stomas which you’d want to avoid. This is a massive surgery with a long recovery time, so you need to accept that and take a lot of care as you recover. Accept as much help as you can, as you’ll really need it.

Sarah xx