TPE surgery

Hi Cymraes1 and a warm welcome to the board. I did not have this type of operation myself but I’m going to see if SarahH21 can help you? I presume hel, have a permanent colostomy bag and there’s lots of support on this board too

 Ileostomy, colostomy and stoma support

Hope everything goes well and please keep us posted?

Take care

Karen x

Thank you Karen.  Xx

Thanks Kareno62 for the tag and hello and welcome Cymraes1 

It must have been a big shock to you both to be facing this type of surgery-I had mine 4 tears ago now. Do you mind me asking which kind of operation you are having as there are 3 different types of exenteration surgery? 

I had a total pelvic exenteration-TPE- for recurrent cervical cancer, so I lost all of the organs in my pelvis, including my reproductive system, bladder, colon and vagina and have a permanent urostomy and colostomy.

A posterior exenteration involves removing the colon but keeping the bladder and an anterior exenteration involves removing the bladder but keeping the colon. 

I appreciate that this can all be confusing and overwhelming at first, but if you can tell me which surgery your husband will have I will be able to help from my own experience. It is a big surgery, but I can say that it can also be very successful with a good quality of life afterwards. There is a lot of support on the stoma board, which Karen has highlighted and although exenteration surgery is quite rare itself, there are lots of areas where members can help.

I’m happy to try to help if I can, and look forward to hearing more from you to help give you some support through this. 

Sarah xx

Hi Sarah, 

thank you for the welcome too.  It’s been a terrible shock and so quick. He is having the full tpe with removal of bowel, bladder, rectum, anus, prostate and lymph nodes. They are going to support the pelvic void with his “six pack” muscle.  He will have a permanent urostomy and colostomy. 
He has his pre-op this afternoon. 
any advice will be much appreciated. 
thank you. 

Thanks for coming back to me Cymraes1  that’s very helpful to know.

This is going to be a massive surgery with a long recovery, so please expect that. And it goes very much up and down as recovery progresses, but don’t get disheartened about that-there are little improvements as the days go by. 

I didn’t have my anus removed, so that’s an extra thing to have to deal with but a number of members in the bowel group have had APR surgery so will have experience of surgery and healing etc from this. 

I was in hospital for 13 nights, 2 nights in hdu, and then on the ward. Pain relief was very well managed via the pump I could press, and afterwards I was on paracematomol and oramorph on demand when required. 

One of my surgeons told me I would feel like I had been kicked by a horse and he wasn’t wrong! I wasn’t in a position to build my fitness level up in advance of the surgery, as I’d just been through open abdominal surgery a few weeks beforehand and your husband isn’t going to have much time to get ready for this. 

The main thing I found was that I was utterly exhausted and need a huge amount of help with everything and a huge amount of rest. I couldn’t really do anything for myself at first, and everything left me very weak. It was very uncomfortable to sit, and it was more comfortable lying down at first. 

I needed help with stoma bag changes at first, and getting showered. Sometimes I just had a bed bath as I felt too weak for a shower. 

Can I suggest you get a waterproof sheet for the mattress to protect this? It’s invaluable. As the stomas heal and settle it’s inevitable there can be leaks. I found a full length body pillow good for support in bed as it’s a very strange sensation having an empty pelvis. 

You as the carer are going to be very tired, I can say that. If you other family support available, please ask for it. If others can do some cooking, clean the house etc, that would be helpful. Your time will be taken up caring for your husband and it is exhausting changing bed linen and dealing with being sick etc. You will need to take care of yourself through all this and try to get enough rest. 

I lost 3.5 stone after my surgery and found I had very little appetite. This came back after 6-8weeks as I learned what I could eat with my colostomy. My hospital didn’t believe in a special diet after surgery, so I was put straight to a normal menu but this was very difficult-your hospital may have a different approach. 

The pre op this afternoon should be a general assessment of fitness to undergo the surgery rather than a chance to ask specific questions of the nurseling staff as they are doing the general assessments for all sorts of different surgery. So your husband will have heart checks, height and weigh, mrsa screening etc. 

I’m sure I’ll think of lots of tips for you, but don’t want to overload you at the start with too much-facing the surgery is a bid enough deal to begin with. I tried very hard not to focus on the mechanics of the surgery but more the potential outcome that could be achieved, and my cancer was removed by the surgery was which the best possible outcome. Excuse any silly errors-I suffered a stroke last week and I’m still making typos etc.

Sarah xx 

Thankyou for replying SarahH21 - I wouldn’t have troubled you if I’d known you’d had a stroke. Hope you’re on the road to recovery x

Please don’t worry Karen, I need to practice getting my words right! I’ve done very well since it happened thanks-brilliant and very prompt care, so it’s all good.

Sarah xx

Thank you very much Sarah and sorry to hear about your stroke. Keep well and I appreciate your insight into what to expect.  The pre-op went well so now just waiting for a date. 
Regards to you. 

That’s one task ticked off the list-now just the wait for a date, which hopefully won’t be too long. Please feel free to ask any questions which pop into your head-having this surgery is a lot to process for you both.

Sarah xx

Much appreciated. It is a lot to process and it’s  frightening too. We will get there though. Thank you.