Cervical cancer and pelvic exenteration surgery

That was my main concern the pain I would be in after the surgery. I was given an epidural when in hdu and this was really good for the pain then they gradually reduced it and took me off this when I went onto the ward. If you are in pain you tell them and they will give you stronger painkillers. There are so many they can give you. I’m still taking nerve tablets. 

Thank you - that sounds good and if I gonna be in a lots of pain ,I will ask.

Wow! There's a lot here to comment on. Thanks SarahH21 for tagging me in.

I had this same surgery last August so I'm still recovering. I had rectal cancer but the tumor was quite large and it invaded the vagina and bladder before it was caught. All kaput, no saving any of it. I'd already had a complete hysterectomy so nothing else needed to be removed. 

The pain was not as bad as I imagined. I had hydromorphone (similar to morphine) for pain via IV which was switched to hydrocodone when I could tolerate pills. I was also given paracetamol (we call it acetaminophen in the US). I kept that on a strict schedule and did not skip or delay those doses. In that way I was able to use less of the opiod. I was completely off the opiod in weeks. This pain management program was recommended by my colorectal surgeon but does not seem to be in common use anywhere. It worked for me and I did not have a lot of trouble with constipation.  

The surgery itself is long and physically devastating. I'm not going to sugar-coat it. You deserve to know. I could not even get out of bed without assistance.  When they got me out of bed, I needed a walker and an aide to walk and I had no stamina. A short trip to a chair was exhausting, as was sitting up for any period of time. 

I spent several days in ICU (similar to your hdu I think) and 5 weeks in the hospital (longer than planned due to complications). My full story is in my profile. 

5 months on, I am doing better. I'm still dealing with a surgical complication but beginning to feel more like myself. My energy is starting to come back and I'm able to do more each day. I was told to expect full recovery to take about a year and I seem to be on track for that. 

As bad as the surgery was, I have not regretted it for 1 minute.  I have 2 permanent stomas which I adapted to fairly quickly. Since you already have a urostomy, adding a colostomy will probably not be a major shift. 

I'm only a little bit ahead of you on this journey and I am more than happy to chat anytime.  We TPE warriors have to stick together. ️

Good to see you Susan13 -thanks for adding your experiences to the discussion.

You're right-we are a small band and need to stick together and help each other out! 

Sarah xx

They will ask you every day in the hospital about any pain or sickness so just tell them and they will help you with what you need. I asked for the oramorph at night to help me sleep, and during the day if I had pain, or when I had to get up and sit in the chair, which I found tough.

Sarah xx

I’d agree about keeping on top of the pain by taking regular doses-it’s much better to take it regularly rather than try to deal with pain once it’s giving you an issue-good point.

Sarah xx

My surgeon just said that morphine is a strongest painkiller and she thinks it is a best,so there wasn’t talk about any alternatives - I wish I could have more open conversations with my surgeon -I know for sure she is good and very experienced and I trust her,but in a same time conversations seem very cut off and kinda cold,but she possibly know what is best and I was promised laxatives in a case if my bowels can be saved and if not - it possibly doesn’t matter if I’m on morphine or not if I gonna have a bag.

I refused this surgery in a past when it would be easy done and I think I’m very lucky that she took me and trying to save my life in a best way possible,so don’t get me wrong -I am greatful that I’ve been given one more chance and it’s possibly a last chance I have ,and from that point she is right -you don’t want,you can cancel surgery ,go home and die . Xx

I would listen to your surgeon-she is suggesting the best way of managing pain after such a major surgery. If I were you, I’d trust her, and not worry about constipation at this point. If you were to be constipated afterwards, your doctors would sort it out.

My advice would be take the morphine! This is such a big operation you need to have good pain management afterwards when you will be feeling very weak and exhausted.

Try and give yourself the best chance here-as you have pointed out, there are no other options for you since your chemo isn’t working, and not everyone has the opportunity for surgery.  I’ve known a number of women who were desperate to have this surgery but couldn’t because their cancer had spread out of the pelvis.

Trust your surgeon here, and be glad of this second chance. 

Sarah xx

Constipation is better than dying. I don't know why they kept you on a pain pump for so long before but you won't need it for months just because of the surgery. 

In my humble opinion... worry about saving your life now then sort the constipation later. I think you know this in your heart already. You are anxious about the surgery and focusing on everything that could be a problem. 

Right before my surgery I was so sick I couldn't walk without assistance. Constant diarrhea to the point of needing to just sit on the toilet for hours. Bladder leaking so bad I had an extremely painful diaper wash that wouldn't heal making it hard to sit anywhere and a fistula between my rectum and bladder that caused me to literally pee poop. I knew I was dying. I could feel it. And still I was scared to death of the surgery. I feared I wouldn't make it off the table. I was too invested in being "strong" to admit it to anyone. You are miles ahead of me. I admire you. You've got this. 

Omg what you went through - when I was on morphine I became weak,I couldn’t walk a lot and then constipation and pain and even if I had urostomy my bladder is still hanging in my body and something constantly leaking out of it and I have fistula between bladder and vagina - at least urine doesn’t leak anymore through vagina. 
I picked myself up,quit morphine,stood up and told myself if I don’t move I not gonna survive this surgery or my recovery gonna be very hard- I made myself plan to have easy exercises every day and walking every day as much as I can - I am happy that paracetamol and ibuprofen is enough for pain and regarding surgery - I just know I have to do it and how lucky I am that they found a surgeon who think she can help me and took me,because my first cancer centre wouldn’t do it anymore so I really have all my trust in her and whatever will happen after surgery is secondary .

You ladies giving me hope,because you survived it,you recovering and you slowly and steady standing on your feet with a cancer free life - that means a lot and it shows that recovery is possible even if that is very hard recovery.

xx