New here and very worried about Elape surgery

Hi Kevbo I didn’t have this sort of surgery myself but hopefully some of the links on this post will help? You could also try typing elape in the search box at the top of the screen to see previous threads?

 RE: ELAPE - lived experience 

Take care

Karen x

Hi Kevbo, I've been lurking around this forum for some time, but not contributing. Your post caught my eye and struck a cord. My wife had ELAPE surgery at the beginning of August, the diagnosis was shocking enough, but we found patient experience a bit thin on the ground. We knew it was a big surgery, but didn't really know what to expect.

My wife was 60, fit and in good health generally.

Some things will will of course depend on the individual, but there are a couple of surgical factors that affect out comes. Firstly, most operations start laproscopically (keyhole) for the top half of the procedure. This is less invasive and assists recovery. However, sometimes they may revert to open surgery to complete this stage, as happened to my wife. So an additional abdominal incision to heal.

Surgery from the bottom end is always open, a significant amount of tissue is removed. There's a void to make good and this can be tackled in different ways. For my wife, this was repaired with dissolvable mesh and stitched. Some hospitals/surgeons repair with plastic surgery, which can make recovery a little different. I'd suggest finding out what the plan is for you.

My wife was in hospital for 10 days after surgery.

The pain was quite bad, enough to make it impossible to alter position to get comfortable. However, it can be managed reasonably. My key take away, would be don't be brave or worry about making a fuss. Things can be done for pain, discomfort, nausea etc. Just keep ahead of the curve, early intervention makes all the difference. Remember this too for when your home. If the medication plan isn't working, say so. We struggled with our home plan, it left some times of the day with inadequate pain relief. Prescribing extra pain meds made all the difference. If you're comfortable and managing pain adequately, you will recover quicker.

You'll be on an Enhanced Recovery After Surgery (ERAS) program. One broad aim is to get you sitting out of bed for long periods. Make sure your ERAS nurse knows what surgery you've had. Sitting is excruciating, my wife could barely manage a few minutes. Some surgeons instruct patients not to sit at all. Opinions seem to differ. You have a massive wound, sitting puts pressure on this and can lead to complications. Going forward get a 'valley cushion" (hospital may provide this), it keeps pressure off the wound. Avoid doughnut ring style cushions, these actually focus pressure to the wound. Don't be bullied in hospital. Try to walk by all means, but listen to your butt when it comes to sitting.

At home, be kind to yourself. This isn't a race, watch out for pain and fatigue they can catch you out after doing very little. Accept all help and support, it helps you focus on what's enjoyable or important. Slow and steady wins the race, ask too much of your body and it will complain. My wife healed remarkably well, with no complications. Fatigue remains an issue, but she was back to doing a little of everything she wanted within 3 months of surgery. I'm convinced most of this success was due to taking extra care early on and pressing forward with a little and often attitude.

Finally, dont worry too much about the stoma. It takes some getting used too, but sòn becomes second nature.

Wishing you well, hope this has helped.

Neville

Hi Neville,

Thanks very much for getting back.

 I’ve heard it’s a big op and needs plenty of rest.

Thanks for the heads up regarding the pain meds and keeping on top of things.

my Surgeon has told me there no sitting for a while & I have a special Roho cusion now so that’s good.

How much was your wife walking when she got home from hospital then? 
Also how many weeks until she could take longer walks etc? 

It’s great to hear she’s doing a lot better just after 3 months.

Thanks again for your post it’s made me feel a lot better.

Kind regards 

Kev 

To a large degree, I'd say fatigue rather than pain/discomfort was the issue with walking.

Straight home from hospital, she wasn't very mobile due to bowl discomfort and cramps. Turned out there was a blockage in the stoma from scar tissue restricting flow. This was resolved easily, but involved a couple more days in hospital.

Walking and gentle movement is great relief for pain, also helps prevent adhesions as you heal. Basically, keeps all your internals free and flexible.

For the first couple of weeks, it would be little and often. A walk down the garden, up and down stairs or just up and on her feet. She'd do this many times a day, actually clocking up quite a lot of steps. The fear or caution, was never being far from safety. Fatigue could overwhelm in a split second, it was as if energy flow was only 'on' or 'off', there would be no forewarning to when the batteries would run out.

So longer walks were about energy levels and learning her capabilities. I guess it was probably 4-5 weeks before she was confident to stray further. The work up to this would be steadily increasing activity levels, but remain within striking distance of home. By 3 month she'd manage a whole afternoon wandering around town, providing she didn't carry anything.

Things have slowed now, she's been on chemo since mid October and side effects have been hard, but from a surgical point of view she is doing amazingly well.

Neville

Hi, thank you so much for your encouragement regarding ELAPE. My husband has been told this is the procedure he will need as the rectal tumour is so low. We see the surgeon on 6th to go through the finer details, until then, my husband won't discuss the situation and I'm left to worry alone. 

It was really helpful to me to hear from the partner of someone that has already gone through it. Wishing you and your wife a happy & healthy New Year. 

Hi frankie2010, glad this has helped you too. 

You sound in a similar position to me and I guess one that's common for many partners. My wife's coping mechanism was closing down discussion, almost in denial. Like you, I felt that all the worry was left to me. I needed to understand, research, prepare and talk openly....just as we would for any other crisis.

But for this journey we're in it together, but also alone. This is NOT a complaint, but an observation of different coping strategies. Take care for both of your needs, otherwise the differences can be a source of tension.

This where forums, family and friends can step in. My wife's networks support her with love, kindness and by rarely mentioning cancer. My support comes as a listening ear and a sounding board for my questions and fears. Both ways of coping are managed, without compromising the other partner.