Life beyond bowel cancer

asoka

Pelvic Exenteration - Rectal Cancer

Hello all and sorry im new to this forum.

I was diagnosed with stage 3b rectal cancer feb 2019 at St Marks Hospital. After suffering since Jun 2018 and various mis-diagnosis by GPs and junior doctors.

Chemo/radiation treatment began Apr 2018 which proved to be unsuccessful and did not shrink the tumor, infact made matters worse and pushed the tumor further down which evaded the prostrate.

Fast forward to July 14th i had to have advanced surgery, Pelvic Exenteration procedure which went on for 12hrs. Removal of colon, bladder and prostate.

Having spent close to 4 weeks in recovery came home this week and adjusting to home life again and slowly beginning to get my strength back eating small amounts. The wounds are still fresh and i still feel the nerve end playing up every now and then.

Anyone out there had similar surgery would love to hear your experiences and recovery stories.

Thank you for listening.

Samir

asoka
Quote from @Carrie:
Welcome @asoka. Sorry you've found yourself here, but, rest assured, you will receive lots of support and advice from people who have been there and just get it. Sounds like you've had a terrible time since diagnosis. Sorry to hear the chemo/radiation was unsuccessful, which resulted in more extensive surgery. I am currently awaiting chemo/radiation then surgery, so I cannot offer any experience on this as yet; I'm sure there will be many more who can though. I hope you recover well. C.

Thank you hope your treatment goes well :x:

Poppies

Hello @asoka welcome to the forum, sorry I cannot offer advice, but wanted to wish you well for a speedy recovery after such major surgery. You really are doing great!

Take care Px

Bluesmusicman

Hello @asoka

I had A Pelvic Externation last October. Doing well and well on the mend. Yes the wounds will hurt for a while and it is important that you don't strain them by trying to do too much too soon.

I found having a good reclining chair helped a lot.

Latest CT scan shows all clear so well pleased with my decision to have the TPE and being accepted as a suitable candidate to have the massive operation.

Message me if you need further advice.

Best regards

BMM

Hans

@asoka Hi and welcome here - my wife had rectal and had a big surgery there. She decided to keep the iliostomy and its never been much trouble at all. It took her some time to feel well again after the operation and she just chilled out infront of the telly for a month. Its been a slow uphill walk since then - that was six years ago and now she is okay. The hospital have been brilliant at helping her and getting her the treatments she needed. It is a major operation! She still gets tired and sometimes worried. It has affected the whole family TBH. She has changed her eating habits and is rock solid on pure organic food. She takes a mix of vitamins as the nurses advised her that now with different bowels she would easily lack vitamins.
All the very best sincerely
Hans

asoka

Thank you all for your messages of supports its now week 6 for me since my ops and im feeling all sorts or sensations up and down my leg and my backside where the stitches/glue was applied. Its been a tuff 36hrs struggling to get up. Only managed to get some relief with some morphine which definitely helped.

terri m

Hope things start to improve soon @asoka .. Wishing you a speedy recovery :x::x::x:

asoka

Afternoon all,

I was readmitted again on 21st Aug to Northwick Park Hospital due to pelvic fluid collection. They have inserted a drain to help release the pressure and fluid. However they have found the root cause this time, I have a urostomy conduit leak internal which is causing the fluid build up. Its very pain at the moment as i cant sleep or put any pressure on my backside and getting limited sleep. Im on morphine slow release which help with liquid morphone top up thru the day.

Hope this info help someone who may be going thru similar issues after their pelvic exenteration operation. Im told these are common issues after advanced surgery of this nature.

Lirio345

Oh you poor thing @asoka, I really hope that you are out of pain soon. Thank goodness they have now found the cause. Please stay in touch and take very good care, Kim :x::x:

Lizalou

Hi @asks
I'm so sorry that you are struggling but I'm glad they have found the cause. Hopefully you will start to feel better very soon. I can only imagine how uncomfortable you must feel, with sore bits everywhere! Miserable!. Sending gentle hugs :x:

jj

@asoka omg sorry to hear about your major op now followed by this fluid build up. I remember reading someone else had this recently and was taken into hospital and fluid had to be drained. Will they be repairing the leak? Here’s hoping and praying that you will now start improving and all the pain is left behind. Just take it easy.
Hugs and best wishes

mandajayne

hi there.. my kev had this op last november.. had loads of complications since the op.. mainly being an open wound and constant leaking from a pelvic cavity.. this has caused numerous infections and sepsis.. he has been in and out of hospital since the op.. we are hoping that the surgeons come up with something to help soon as possible.. as kev is getting weaker and is in constant agony. :x:

asoka

Morning all,

My kids and wife were invited to see the robot that performed the surgery on me in July 2019. Our kids where both worried and unsettled during this period. Our surgeon came up with the perfect solution, took my kids on a tour of the robot and control room at St Marks Hospital, Harrow.

Here is the article ;

lnwh.nhs.uk/news/youngsters-get-to-grips-with-hospital-robot-1638/

jamtart

@asoka wow, that's awesome!

Lizalou

Wow @asoka, Fascinating and lovely that the children got so involved.I hope they feel a bit more reassured.
How are you feeling now? Hopefully you are on the mend. :x:

1234annie
Quote from @asoka:
Morning all,

My kids and wife were invited to see the robot that performed the surgery on me in July 2019. Our kids where both worried and unsettled during this period. Our surgeon came up with the perfect solution, took my kids on a tour of the robot and control room at St Marks Hospital, Harrow.

Here is the article ;

lnwh.nhs.uk/news/youngsters-get-to-grips-with-hospital-robot-1638/

That is awesome! I'm having hipec at St Mark's in Jan all bring well with chemo and radio. Hope you are still recovering well. :x: :x:

Petal62

I had anterior exenteration and HIPEC at St Mark's in March, lost bladder and luckily only ended up with 1 bag for that. I'd already had hysterectomy during first colorectal cancer op. I was very tired for the first 4-6 weeks but slowly got my strength back from then on. I've had a couple of UTIs but feel pretty good now. I had my first 6 month scan on Monday so now just going through the scanxiety period before the results. Feeling posotive though. Going for daily walks is good. All the best in your recovery.

asoka

Evening all by way of an update.

I have now been in hospital with a drain week 3 which continues to drain collection from pelvic cavity. This doesn't seem to be working.

On Fri radiologist at St Marks will perform a procedure nephrostomy where they will insert tubes into both kidney to drain urine directly and bypass artificial bladder and allow the pelvic cavity to drain.

Sam

Lirio345

Good morning @asoka, I am sorry to hear about what you are currently going through and I really hope Friday’s procedure will help. Please stay in touch and let us know how it goes. Take very good care, Kim :x::x:

jj

@asoka here’s hoping that this procedure will finally get rid of the fluid collection in the pelvic cavity and you will be free of pain and recovery will be quick. Keep us posted
Regards

Ninatoo

Hoping they can get you fixed up soon @asoka