Pelvic exenteration

Hi  and welcome to the board. I’ve attached a link to a previous post below and I’m going to tag a few people in who will hopefully be kind enough to tell you about their experience

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/bowel-colon-rectum-cancer-forum/214736/update-on-my-progress

Osboz Fortis 

Take care

Karen x

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/new-here-say-hello/203540/expectations-when-going-home-after-total-pelvic-exenteration-surgery

Hi 

Very encouraging to hear a surgeon is able to do a bit more extensive surgery . The benefits of centres of excellence in these situations .

I have also linked in a thread that is quite realistic  has guided many through this process and we are very grateful to him for his wise and balanced words . Hopefully he will be around and able to give both you and your husband some guidance . 
take care ,

Court 

Hi Roro25,

I had this operation two and half years ago. It is a big operation but it can potentially be curative and can leave the patient in a reasonably healthy active state afterwards following the healing which inevitably has to take place afterwards.

The thread that Court kindly linked summarises most of my post operative experiences.

I remain fit and healthy and continue to live a virtually normal lifestyle.

I guess like me it was a very last chance saloon option, but it certainly paid off for me.

Message me if you have any further questions.

Best regards GM.

Hi Roro25

Sorry It's taken a few days to respond to your post. i had some log on issues which the Macmillan tech team have now resolved for me.

I'm sorry too to hear of your husband's recurrent cancer. The prospect of this surgery is certainly scary, but it gives real hope.

On 4th March this year I had surgery that was similar to what your husband is facing. I had a different kind of cancer and did not have a urostomy, but did have an ileostomy. I had pelvic exteneration surgery that included the removal of my rectum and rear vaginal wall and plastic surgery that involved flaps from my buttocks and thighs to reconstruct the area.

Now, 10 weeks on, I am recovering well. I had an extended stay in hospital (5 1/2 weeks) due to problems with dehydration which led to my blood pressure dropping every time I tried to mobilise. In terms of recovery from the op itself - wound healing, pain etc, I have done really well. I had a morphine pump inserted in theatre but I stopped using this after a couple of days because of the side effects and I did not really need any painkillers apart from paracetamol thereafter. I stopped taking those after a couple of weeks. I can't believe how little pain I experienced given the nature of the op. My wounds have all healed well and although the scarring is pretty extensive, it's all very neat! Both the colorectal and plastic surgeons did a superb job and the surgery all went to plan.

Let me tell you plainly of the main issues I have had since surgery and discharge from hospital, so you and your husband are forewarned:

1. I was not allowed to sit for about 2 weeks after surgery, except to get out of bed to mobilise. I had to lie on my side for most of the first 2 weeks, then was allowed to lie on my back and gradually increase the time sitting, which I found sitting very difficult and uncomfortable. I felt like I was sitting on a wadge of rolled up newspaper, to start with! This has eased somewhat over time, but still gets uncomfortable and painful after a couple of hours (sitting on a couch or armchair. I can manage less time on a dining chair). I was given a Valley cushion to use in hospital and a reclining chair by the OTs and then got one from the stoma nurses after discharge. I recommend asking for one if it's not offered. It is still really useful and I take it everywhere, including in the car. The sensation of sitting on a wadge of newspaper has eased, maybe because I've got more used to it and maybe some swelling has gone down. I struggle to get up from sitting on a lower seat even now but it's getting better. I also still can't bend down to pick things up off the floor, which is a nuisance, but also improving gradually.

2. I have had problems from the start with the stoma output which has remained very liquid in consistency. I keep being told I'm aiming for a porridge like consistency, but I'm usually a long way from that! As a result of this I have to be very vigilant about what I drink if I am to avoid dehydration, because I lose a lot of my fluid intake through the stoma, including the essential salts and minerals. I now only drink a solution rather like Dioralyte (called St Mark's solution)  all day, and allow myself just one cup of tea per day. I don't like the stuff, but I've got used to in somewhat and hope it won't be for too much longer.

3. In hospital I was constantly told I should eat foods to 'bulk up' my output. These were all high fat foods like plain biscuits, salty snacks like crisps, jelly babies or marshmallows etc, as well as high carb foods and only white bread/rice/pasta. I struggled with this a lot as I had weaned myself off 'rubbish foods' and had developed a healthy diet since my diagnosis. My appetite had reduced (and hasn't yet returned to normal) and a 'little and often' regime was recommended - small meals and the above type of snacks in between. This went against the grain and I found it hard to snack. I was losing a lot of weight, which I was pleased with as I had been overweight. However, I spoke to a dietician that my GP referred me to and on hearing the amounts I was eating advised me to increase my protein intake at meal and snack times. Snacks have become low or 0 fat yoghurts, smoothies, cheese, rice crackers and pureed apple (brilliant for 'bulking'!) and I feel a lot happier. I am still on a low residue diet and don't feel ready to experiment with fresh fruit or most veg etc just yet. Due to the high output, there has been a lot of experimentation with Loperamide and Codeine (hate the latter as it makes me feel so sleepy) to help with the consistency. This is still a work in progress, but I am hopeful we will get to an optimal dosage and other things will start to fall into place.

4. Mobility: I am back driving again but only short distances because of the discomfort with sitting for long periods. I am trying to build this up, but it has been quite an inconvenience as I am the only driver in the family. I go for a walk everyday but it's still slow and steps and high kerbs are tricky. I think for me this comes from the flaps being taken from my thighs and the removal of muscle along with it. Apparently the strength will return in time.

5. Bag leakages: Right up until I was discharged I had real problems with bag leakages. Lots of different bags and other bits of equipment were tried, but failed with multiple bag changes required per day sometimes. I was despairing at times, but was assured it would come right. Finally, very soon after I got home, it settled and I now seem to have the right combination of equipment and I'm pleased to say it has and I am now managing well. I had lots of help and support from the stoma nurses both in hospital and in the community.

I found the prospect of the surgery very scary. I was in theatre for 9 hours, which is what I was told to expect and the op is HUGE. It takes its toll on the body and mind in all sorts of ways that can be different for different people for lots of reasons. It also takes quite a toll on the family. I would urge you to think about how you will take care of yourself when your husband is in hospital and after his discharge. He will need a lot of support and I suppose much of this will come form you. You need support too! I sometimes think my partner has had a harder time of it than I did, especially not being able to see me for the 4+ weeks I was in hospital. 

I feel exceptionally lucky as I have now been told that the histology results show that I am cancer free! I require no further treatment. I have been discharged by the plastic surgeon and will probably have just one more appointment (by phone) with the colorectal surgical team before moving to annual check ups to include CT scan for the next 5 years. It's hard to believe it's all behind me now, apart from the continued recovery, which is down to me. I've been off work now since mid September when I had chemoradiotherapy and am not considering going back for another few weeks, or maybe more. I am nowhere near strong enough yet, physically or mentally. I hope your husband can take his time to return to work if this applies to him. 

Please post again if you have any questions. I'm happy to give details about any aspect of the surgery I had. I have found this site very supportive, especially before I had my op and a great place to vent or give expression to fears and anxieties which I didn't feel I could elsewhere.

I wish you and your husband all the very best. Please let us know how he gets on.

Osboz

Thank you so much ..his op is tomorrow ..ive got him a between the knee cushion and am looking at a pressure cushion so i will ask about a valley cushion ....im so relieved for you that you are now cancer free thats fantastic news i hope you continue to recover and mend as you have ...post op infections are my worry as after his mesorectal excision he had sepsis on numerous occasions also kidney problems once again thank you all on here for responses it really does help ...

Hi so we are now 10 days post op ..longest day of our lives he went down to theatre at 8.40 am and came out at 22.10  everything went well he now has 2 bags urostomy and colostomy his bladder was like a crinkled up crisp packet and couldnt be saved ...he was in icu for 3 days and i was allowed 1 hr to visit now hes on an acute surgical ward so no visits  they had him sat in a chair after 24 hrs which he said was agony turns out the canula for pain relief was leaking had to wait for a scan to find veins so he had very little pain relief for hours ..y 3 most of the drains and tubes were removed and physio had him walking /shuffling to the end of the ward he is very tearful ..day 8 had to have a nasal gastric tube into his stomach as very bad vomiting and no stoma output (but he hadnt eaten anything for 8 days ) canulas useless so picc line put in ..2 steps forward 10 steps back ...has slowly started eating little bits stoma has now kick started ...now on oral morphine and tramadol mobilising more and more with very little help ...scars are healing nicely .nasal tube came out yesterday ..he seems very angry last few days going through all the emotions he will be in at least another week stents from urethra coming out on tuesday as his kidneys seem to be working ..he may also have to go on tpn feeds so so far so good xxxxx

Brings it all back to me. I didn't have issues with Canula or need a nasal gastric tube though. 

It is a big tough operation and he is using the same amount of energy as running a full marathon every day as his body goes about repairing all the aftermath of the surgery inside him.

Slowly day by day though things should improve. It took me a good 6 months before I was back to anywhere near normal.

Today 2 and a half years later I am back to being fit and able and enjoying life again.

Good luck with the recovery.

Best regards.

Hi Roro25, Gosh your husband has really been through the mill, poor man. Coping without pain relief sounds especially difficult, especially with so much else to cope with. It's good to hear he got through the surgery and is now making real progress.

The best bit of advice I was given - and I lived by it throughout the whole process, to good effect - is to take each day and each stage as it comes. Don't skip ahead to the next stage,  just stay with what's happening right now and deal with that. Its a piece of advice that works well for the patient, but also his/her loved ones!

I hope you are keeping, and coping, well. It's a really tough time.

Like Guitarman 1959 says, from here on in, you'll notice small improvements day by day. It's slow for sure, but I'm here to say, from my own experience, you and he can get there. I'm just about 3 months post op now and while I'm  not there yet, I have come an awfully long way in that time

Keep in touch! We're hear for you.

All the best to you and your husband.

Osboz

Thank you ..it feels like he takes 2 steps forward and 10 back today his wound on his buttock is leaking more than normal his bed broke so they sat him in a chair which was agony for him...they toldim he needs to lay on his side and turn every 2 hrs easier said than done when he has 2 bags and his body has been cut in half ...i said ask them for help to which he was told he is independant  he seems very depressed hard to hear him crying  he gets stressed at dinner time and feels sick because the food is awful x

How distressing for you both, Roro 25. I'm so sorry to hear your husband is struggling so much physically and emotionally. He also seems to have been so unlucky even with basic things like the broken bed and non-functioning pain relief, as well as the medical post op problems he's having.

Re the 2-hourly turning. I recall that being really hard. I got a monkey bar from the physios which helped a lot, so maybe that's worth asking for if he hasn't already  got one. I also had multiple pillows which I placed each side of me to support my bottom and lower back and one between my legs as well. I needed those for at least 3 weeks.

I had some very dark days too and my partner had to support me over the phone. I felt better after I spoke to him, but I know I left him with it all. That's what I mean about it being harder sometimes for the partner than the  patient.

Even though it doesn't feel like i now, it WILL beg better....