Expectations when going home after total pelvic exenteration surgery

Hi

Welcome to the forum . It must be very hard for your family to prepare for discharge when they have not been able to visit during his recovery . I can see how your mum would find that difficult.

I can’t answer your question but will tag in a few people who may be around to help ., dankel82 . They have much more experience in that field and are great at helping out .

Take care ,

Court 

Thanks, court. I appreciate your response. My mum is really struggling to find any useful information. I don't think it's helped by the fact that my dad is the first patient ever to have this surgery in that hospital (redirected from the original hospital due to COVID). He was originally meant to have the operation last November but suffered a number of cancellations before lockdown even happened so any information they may have had before has been lost or confused with time and worry. 

Hi moxie 33, 

Hope your dad is doing well and getting stronger by the day. My husband has recently had the same op on the 15th of June during covid, he had quite a tough time of it but is now recovering well at home.

we have found a mattress topper and pressure cushion useful which were ordered once he was home from the district nurse. We didn’t require to get the bed downstairs but found the electric recliner which was actually suggested by the guitarman the best peace of equipment. My brother brought it as a gift for my husband, but I did find online hiring service available too. Please make sure you ensure that a district nurse has been booked for the home visits although i do the dressing changes 3 times a day! And also the stoma nurses have been arranged to visit when he’s home.

my husband has up days and down days but is getting stronger each day, please feel free to message me directly if you want.

wishing your dad a full and speedy recovery.

take care

cara1

Thank you Cara . Your a star ! 
Court 

Thanks, Cara. 

That's really usefully information, I appreciate you taking time to share your experiences. I've passed this along to my mum now and will look into sourcing a reclining chair for my dad to use. And thank you for the offer to message directly, I'm sure more things will come up over the next few weeks. 

Wishing you and your husband the very best during his recovery. 

Stay safe. 

Hi Moxie33,

As mentioned by Court, I had a TPE about 20 months ago and have now more or less recovered. The advice I passed on to Cara and echoed in her response is a pretty good description of what needs to be done.

Watch out for infections both externally and internally. I was fortunate to not have any issues with external infections/wound healing but I did experience a nasty internal infection/collection. If he experiences one it is vital he gets treated/readmitted to get it seen to ( usually a combination of draining and IV antibiotics).

Vital that he walks often but not overdoing it. It takes time to recover from this very major surgery but day by day, week by week he should get better and back to a new normal.  His body will be using up the equivalent of running a marathon every day, whilst it repairs what it it deems to be a massive car crash inside his pelvic cavity. So he will get exhausted very quickly!

I have accomplished many major DIY projects since my surgery, including kitchen refitting, building a large garden room and redecorating the entire house. Also lots of guitar playing of course! I am 60 and fitter than many men my age who have not had to endure such a major affliction.

Good luck

GM.

Thanks, guitarman. It is heartening to hear your recovery. Thank you for your advice and taking time to share some of your story.

Hi Moxie 

Hope your Dad is recovering well, it’s such a massive op. I can still remember when my Dad went in for his nearly 2 years ago now. I was a mess that whole day waiting. 
It’s a long recovery and as guitarman said it’s like a marathon as your body has to recover and there will be good days and bad days but he will get there.
My Dad is back to doing all his normal stuff now and has been for a long time he plays  golf around 3/4 times a week we have been on summer holidays and all ok. It’s hard to watch someone you love go through it but they do get there it just takes time. Danni xx

Hi Moxie33

My dad was told yesterday that he needs TPE can I ask how old your dad is please and how he is doing 

My dads 73 and fit and well but I can't help worrying about the whole thing Dad meanwhile is very positive but me and my mum are beside ourselves 

thanks