New to the group

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 Bim07

Welcome to the forum . Your husband has had such a tough time . I have linked in a thread above where you can click on the posters names to read their profiles regarding Total Pelvic Extenteration .

I am also going to tag in SarahH21 as they have far more insight than I do and could assist you better .

I do hope his pain levels subside and they can assist him soon .

Court 

Hi court, thank you so very much for pointing me in the right direction; hugely appreciate it. This online community is just amazing, it really is. He on a fentanyl pump to control the pain and that seems to be doing the trick, thankfully. Thanks again - and Happy Easter x

Hello bim07 and welcome from me.

I am so sorry to hear about the problems your husband is dealing with, I had a total pelvic exenteration just over 2 years ago now, for a different cancer, but do live with a colostomy and urostomy. Bowel blockage can be an issue after this surgery, but I have been blessed not to experience this and both of my stomas function well. It can be difficult to have further surgery after this one, but I hope that if your husband can get well enough for at least an investigation into what they can do. I am presuming they are feeding him via another method? I am aware of eating being an issue, and usually TPN is offered in my experience? I’m glad the fentanyl is working, so at least the pain is managed, and hopefully this will allow him to recover enough to have some further investigations/treatment. 

Recovery from a total pelvic exenteration takes a long time, and in the grand scheme of things, your husband is really not long out from this major surgery. I hope you are looking after yourself in all of this-caring for someone after this type of surgery is a massive undertaking and very, very hard.

Sarah xx

Hi SarahH21 - thanks for taking the time to message me.  I'm so pleased to know how well your surgery went and how you have recovered.  The medical profession really are just amazing.  

My husband had surgery for a colostomy almost immediately after he was diagnosed.  Cancer strangled that one (surgeon's words) 9 months later, and he had a ileostomy created on the other side of his stomach.  With the exenteration they removed his two nephrostomies and turned the ileostomy into a urostomy.  They then managed to rework his colostomy as well, so he is in the same position as you with both urostomy and colostomy.

He is being fed TPN via a PICC line, yes. Has the occasional cup of tea as he is allowed free fluids, but it comes straight up the NG tube. 

Finding this as hard as when we were told this time last year that he had months left to live.  Am on the edge of a meltdown constantly.  The only time I feel any kind of happiness or that anything is 'ok' is when I'm with him or he video calls and the fentanyl is working and he's in good spirits.  We were both in tears last night as he is scared he will never come home and he doesn't want to live and die in a hospital. The unknown is so scary.  Sorry - you didn't need to know all of that.  I'm just finding the 4 day bank holiday weekend horrendous - I work from home (to help care for him and keep him safe) and work has been the only distraction that really does work.  I shall go back to work again shortly to get through the day, and have a taxi booked to go see him again tomorrow - can't wait!

Happy Easter, and hope that you and yours are having a lovely weekend and that it's beautiful and sunny where you are. xx

Hi Bim07

You absolutely can come here and say how you are feeling . Fear is a horrible thing for both patient and carer to navigate . Just remember it is not a reliable clinical indicator and there is every reason to be hopeful the team can get his system back up and running . I think these are the more complex end of surgeries and complications can set it but with the right support it can resolve even although it does not feel that way just now .

Holiday weekends are tough as it feels other are having fun and normality but tomorrow you will see him and you will be therapy in itself to him and help pull him over this very difficult bump on the road . I have shed a few tears in driveways and car parks when my mum had emergency admissions and the ambulance left . It drains you ,

Thinking of your own needs can I say with love and gentleness have you spoken to your GP about this ? You are only human and this is tough  . Taking care of your own health helps you both in the long run .

Take special care ,

Court 

Hello again Bim07

Oh my goodness, you and your husband have both been through an incredible amount of trauma-my heart goes out to you both. Sorry I wasn’t  around yesterday to reply to you, but we had a very rare day out at my in laws. 

The role of carer is an unbelievably stressful one, and very difficult to handle, so I’m not surprised you feel on the edge of meltdown all the time-this is all very scary, but please don’t worry about expressing your feelings here. There’s never any need to apologise for that. I never realised at the time just how hard it was for my partner as they were so busy concentrating on me, they put their own feelings to the side. We have had many talks about this since, and I’ve even had a few tears over what I put them through, but we are strong together and got through. But the fear was quite overwhelming at times.

I hope you have a lovely visit with your husband today-that will make a big difference to you both and it’s such a boost. Court’s suggestion of talking to your gp is a good one. You are going through a huge amount, and it can be very useful to ask for help.

Take care, and be kind to yourself, and enjoy your visit today.

Sarah xx

Hi Bim,

My husband has not had an exenteration, but has had similar problems after his bowel operation. He was first admitted last October for a straightforward cut and join together!!!! Once in there they decided the bowel was too mangled up to rejoin and he was given a permanent colostomy. He spent 6 weeks in hospital with supposedly bowel ileus. He was at home for 2 weeks during which time the stoma never really worked well, and he was frequently sick bringing up green liquid. One day he couldn't eat or drink and I decided enough was enough. We took him to A and E and he was admitted. He was then in there for 2 months while they cleared the blockage and tried to get him working again. He was about to be discharged when he was sick again, they kept him in and decided to operate again. Apparently there were lots of adhesions and the bowel had twisted. No wonder the stoma never worked properly. He was very weak when he came out of hospital, and they put him on nutritional drinks, which he is still on. He has walked each day, is much stronger, but hasn't put on much weight yet. 

My main concern when he was in hospital was that he wasn't fed for days on end and the weight rolled off him. The second time he was admitted I pointed this out to them and the consultant then insisted he was fed by tube straight into a vein. If I was you, I would press for this. It does help keep them nourished.

Hope this gives you some hope. When I asked the nurse on the ward if this was common, she said they saw a lot of it! 

Hi Court, thank you for the support. It means a lot and makes a difference. Balancing full time work and being far away from my husband makes it harder to manage the fear and I miss him terribly as well. It’s always ok when we are together, no matter what we are facing. Will get through it. 

It is impossible to get home of our GP let alone an appointment. You see someone different every time, and they don’t know or understand you. They did not give us a good experience when my husband was trying to work out what was wrong with him, so there is no trust there either. That said, I did reach out to a different GP through a benefit that I have from work and spoke to him yesterday about some niggles that I have with my heart rate and some weight loss. He suspects it is all stress and exercise related (I run) and will be going for an ECG and blood tests soon just to make sure I’m really ok. 

Thanks again for being there and making the time to reply x

Thanks so much, Sarah, I really appreciate you taking the time to reply and being so supportive too. It really does make a difference.

i hope you all had a lovely day out together, especially if it isn’t something that happens very often. xx

Hi NannyAnny, I read your message in the taxi on the way to the hospital and whilst I am so sorry that both you and your husband had to go through that horrible and worrying time, I can’t express the hope that it gave me and even some relief as well. It can be so hard to let yourself hope or believe that it may be ok - that is almost as scary as fearing the worst. Your message really cheered me up that morning and I even read it to my husband in the hope that it may bring him the same hope that it did me. Thank you so much x