Living with 2 stomas instead of 1

Hi Susan

thank you for your reply. I understand it’s a difficult operation with long recovery. It’s quite daunting. I know his mental and physical state will be severely impacted.  How long before you got back to some kind of a new normal? Will he be able to get back to work ? What setbacks can we expect? So many questions. It doesn’t help that my husband doesn’t want to talk about it. Thank you 

• Sorry for you guys too. It’s hard walking into the unknown and waiting. They told us 6 week waiting list at St Marks. Assume we will be on it from 1st April on our return visit  but told we would could be in on a last minute cancellation. I trust all goes as well as can be expected with a speedy recovery 

We actually got a call today with a surgery date of 10th April so a bit earlier than they said. We had to be referred from our local hospital which is what caused the delay I think (that plus the Xmas build up). So met the surgeon end of Jan, had a second meeting end of feb and now the surgery in April. Have to have new scans though as the wait has been so long they won’t be in dates crossing everything they’ve not changed! They said from the first meeting there was a bit of a wait for us so if you’ve been told 6 weeks I’m sure you’ll get in quick. X

Hi Sarah

I had to have a raft of scans too prior to my TPE to give the most up to date picture. I hope the scans go well and everything can go ahead as planned.

Sarah xx

Thanks sarah. And thanks for sharing your story…it made my husbands decision that bit easier. Xx

We are in a similar position to you but a few months ahead. My husband is as of today 3 weeks post total exenteration surgery. After radiotherapy and 6 months chemo his rectal tumour was still CRM+ with possible prostate invasion so that was our only option for a good chance of getting R0 resection. We are still awaiting histology results to find out if the op was successful in removing everything but fingers crossed. 

It was a 10 hour operation but everything went as planned. He had just turned 41 when he had his surgery. He really focussed during the period between the end of chemo and the op on regaining some of the weight he had lost and building up his strength. I think that stood him in good stead as physically he is doing pretty well considering what his body has been through. He had someone visit him twice a day on the ward so that he could get help going for walks initially just on the ward and then later around the hospital and campus, which I think has also helped his recovery. He spent 17 days in hospital and is now on a virtual ward - at home but with daily monitoring and check in and blood tests once a week. Complications are common with such a major surgery and in the grand scheme of things I think we were fairly lucky - he got an infection so had to be on iv antibiotics, one of his kidney stents came out and had to be replaced  and one of his liver enzymes is high so they currently following up on that to try and work out what is going on.

His main struggle post surgery was getting his digestive system functioning again. He struggled to eat much, had some vomiting and had a lot of painful trapped wind. He lost about 9kg (he is slim anyway so that was a lot for him). I would recommend the nutrisip (or similar) shakes post surgery as they are high in calories and protein but relatively easy to manage. The nutritionist suggested them but we had to specifically ask for them once he was on the ward. He also found peppermint water helpful. 

Since he has been home he has been managing fine with the stomas. He is able to manage the stairs and go for short walks but gets tired very quickly and sleeps most of the day. He has found a recliner chair and having the mattress propped up (we have a bean bag underneath it) essential to being comfortable at home.

Anyway thought I would share my experience as I know I found reading others stories helpful before the op. Wishing you all the best with your husband’s surgery. And please reach out if you have any questions that I might be able to help with.

Thank you for sharing and pleased your husband is home now and doing relatively well!

We’ve been told the surgery will be 15+ hours as the main tricky area is the left pelvic wall which will be really intricate to remove the tumour without damaging the main nerves and vessels. Because we live over 2 hours from the hospital he’ll be in hospital for 3-4 weeks as it will be hard for him to go back in if anything happens when he’s at home, so hoping he will be starting to get more comfortable when he’s home.

I did ask about not being able to sit comfortably but we’ve been told that as they’re not removing the entire rectum (from about 7cm up) that shouldn’t be too much of an issue. This was before they spoke about removing the bladder as well so not sure if that makes a difference. Good to know about the  peppermint water and shakes! He’s been heading to the gym every day to try to build up muscle and fitness ahead of the surgery so trying to balance that with not losing too much weight as he’s also naturally fairly slim. 

its hard isn’t it! And definitely didn’t expect it to happen so young (husband is 46). I’ll keep everything crossed that the results come back positive for you and then you can just focus on him recovering and enjoying life again without the worry. My husbands already researching skydiving with a stoma

Thank you so much for sharing this. This has been extremely helpful. Hubby has just had CT & MRI this week. Fingers crossed these are just a formality. still a wait to go.  I wish he would stop smoking, though he has cut down a lot, I do worry this will impact on his recovery and healing. I shall make notes on nourishment drinks and peppermint water.  Thank you and best wishes to your husband 

Hubby also had to have new scans before surgery as his ones from post-chemo were too long ago. They just like to have the most up to date information going into the op. I don’t think it is anything to worry about.

If he needs them you should be able to get nicotine patches in the hospital. They did that for one of the other patients we met on the ward.

The waiting is the worst. As much as I was scared of him going into surgery and it was good to have time to research and prepare for what was to come, by the time the date came around I really just wanted it done.

In other practical advice hubby found it useful in hospital to have long charger cables for phone and iPad so they easily reached the bed and could be tied around the bar on his bed to keep them in easy reach. 

Hi scientist44, I was thinking of you this morning so wanted to message to say I hope your husbands recovery’s going well and he’s starting to feel a bit more comfortable. 

i also hope you’re holding up ok?

xx