Total pelvic exenteration

Hi ,

I am just going to see if is around as she has been particularly helpful in the past sharing her dad’s experience.  Much better to have first hand knowledge. 
Hope you are doing ok but there has been a few people having gone through this and back to living a purposeful life . I will have a bit more of a look . The problem is getting people who are still posting as a lot quite rightly return to their normal life and get busy again . 

I think it’s totally understandable that you feel scared but hopefully if we can link you in with someone through the other side it will reduce some fear .

Take care ,

Court 

Thanks court for reply. That would be great, Any advice would be good just now as mind in over drive, yip I've heard people going about there day to day life after recovery, my anxiety is bad at moment to thinking about it all, I'm usually a strong minded person had all my chemo and radiotherapy without much problems, hopefully there will be light at the end of the tunnel, thanks joe x

Hi Jeog90

Sorry to hear your news Andean fully understand that you are feeling scared.   I really hope your surgery goes well and `I'm sure your team will look after you very well.

I have no experience of this surgery but I'm sure someone with experience will be in touch with you soon.

Sending hugs,

Take care x

VickiLynne

Thanks vickilynne for your kind words. My surgeon mr peter chong very experienced I have great trust in him, I'm sure with some strength and positivity I'll get through this tough time. Thanks again joe x

Hi

I think had a TPE so you could have a look at his profile and hopefully he’ll see this and pop in?

Karen x

Thanks Karen just seen guitarman1959 profile, glad u mentioned it gives me some info on recovery, it seems pretty much same as wat I've to get done, let's hope I'm building a summerhouse this time next year lol, thanks again take care joe x

You got me Karen , I was just going to tag in too . I don’t know about anyone else but since lockdown my memory is so bad . It takes me a bit of time to get it going again .

Take care ,

 Court 

We will hold you to that summer house and expect the photos .

My mum always has a post op project to do . Once it is done she feels she has past a milestone in her recovery . 
Take care ,

Court 

Hi Joe,

I have just been alerted about your post re TPE.

Yes it is indeed a big old tough operation, but in my case curative and has given me a new lease of life. 

Adjusting to two bags has been very straight forward and easy to manage. No worries about bursting for the loo in the middle of the night for you in your new future ( so long as you connect up the big 2 litre night bag). 

You will have to be prepared for a slow but steady recovery and be careful not to overdo things. Also make sure you get your CReactive Protein levels checked every week or so after they discharge you. Biggest issue I have had has been internal collections, but they can be dealt with with a combination of drainage and IV antibiotics. 

Make sure you have a comfortable reclining chair for your recovery. It considerably reduced the pressure on my bottom (APR part of the operation).

Yes I did build the Summerhouse and friends are amazed that I could have done all that by myself after recovering from such a big operation. Had to be careful to avoid getting a peristomal hernia, but you should get plenty of advice about that from your Stoma team.

I didn't need any plastic or lower vertebrate surgery and my operation took about 10 hours.

People who I meet generally have no clue about what I have been through.

Empty your Urostomy often and make sure everything is squeaky clean when you change it to avoid the dreaded UTI.

Message me direct if you want any further info on my experiences.

Good luck with the operation and best wishes for your new life.

GM

Thanks GM for reply much appreciated, reading what you've just said has gave me reassurance that I'll make it through this, the goal is for cure to, the closer it gets to the op the more nervous I am, you've been there so will know all about that feeling of fear and dread, I've got good family support but to hear it first hand, honestly has made me feel better and stronger going into this, it will be a long journey to recovery as u said, and i will defo invest on nice comfy reclining chair, thanks for taking time to message me, take care and keep up the good work thanks joe,