Possible surgery/stoma

Hi Ian

Welcome to the stoma support group, I am sorry to read that treatment on your anal cancer looks not to be successful and you have been advised that surgery maybe necessary with the fitting of colostomy bag.

You probably will have a procedure called Abdominal-perineal resection (APR)

As you rightly say this is a major operation to remove the anus, rectum and part of the large bowel (colon). 

Because an APR involves removing the anus and rectum, it means having a permanent colostomy. The surgeon moves the open end of the bowel to the surface of the tummy (abdomen). The opening is called a stoma. Your bowel motions (stools) then pass out of the body into a colostomy bag.

This can be upsetting and take time to adjust to.

Before your surgery you will be introduced to a stoma care nurse and she with your surgeon will talk it over carefully with you. Before and after the surgery your stoma care nurse will become your new best friend and will be available to help and support you at all times

After the APR operation, you usually have two wounds. You have a tummy wound and a wound where the anus has been closed.

The anus may be closed using muscle, fat and skin from another part of the body. This is called a flap.

Sometimes an APR may be done using keyhole surgery (laparoscopic surgery). The surgeon does the operation using only four or five small cuts (about 1cm each) in your abdomen. They use specially designed instruments that can be put through these small cuts. There will still be a wound where the anus has been closed.

As this is major surgery your recovery will take some time and your activities will be restricted for quite a few weeks but you will be encouraged to start to take gentle exercise as soon as you feel able to undertake it.

The goods news is the operation is doable and we have many members both in this group and the Bowel (colon and rectal) cancer forum group who have gone through this type of surgery and they do lead a normal life.

Having a colostomy and having to wear a bag to collect your poo takes time to get used to but it should not affect the way you lead your life and everything that you are able to do now sport, work, holidays and many other things you should be able to enjoy afterwards. One thing I can assure you, no one will be able to look at you and tell that you have a colostomy bag attached we look from the outside just the same as everyone else. 

In this group we are very supportive towards each other and will help you through any problems you may have and find a solution

I am sure that many of fellow members will follow me and share their positive experiences with you.

I am always about to give you help, support and advice at anytime you need some, just give The BODACH a shout out and I'll be there for you.

I have put together some reading material for you which I hope will make things clearer for you.

Macmillans - Anal cancer surgery

Cancer Research - Anal Cancer Surgery

Cancer Research - Colostomy after Anal Surgery

If after reading the above you need to ask more questions please come back and ask, in this group we believe that no question is trivial, stupid or daft except the one never asked, if you've got something on your mind come on in and ask, get it answered and give yourself piece of mind.

Hope this helps

Ian

By clicking on any of the green text above will open up new pages for you.

Hi Ian,

I can fully understand how you must be feeling right now. I had my APR surgery in September 2012 (it seems a lifetime ago now!!). I was working full-time in an office up until two days before the surgery. I had done my research and prepared everything at home as I knew that I wouldn't be allowed to do a lot of things for a wee while. The surgery does take a lot out of you - it is a major operation. My op was around 8 hours. You have a team working for you while you're in the hospital - you'll have the surgeon's team, the ward nurses and staff, the colorectal nurse team, the stoma nurse team and the physiotherapists. They are all there to help you make the best recovery that you can - and there's a lot of reassurance in that. 

In the early days and weeks, you are limited to what you can do - but gentle exercise will be a help. As the days go by and your body recovers, you will slowly but surely get back to almost where you were before. As I said, I had my surgery in September, and I was able to enjoy my Christmas dinner with all the trimmings, and back to work in the January. I had a phased return, and after 2 weeks was back full time. I was also on chemo when I went back to work. Remember, you will have rights at work because of your cancer.

The stoma can be a bit challenging in the early days but that's because it's new and you have to find your feet on what suits you, and you find your own way of dealing with everything stoma-related. Remember, too, that if you have a permanent colostomy, there is a procedure called irrigation where you wash the bowels out and that gives you a lot of control back and is well worth the time and effort if you can get into that. I started irrigating 3 years ago and have never looked back.

I'm sure that you will have lots of questions, but take your time and think it all through and ask those questions. You're not alone! 

Your surgery is doable, and you will get through it and lead your life probably as you do right now. 

Hope this is a wee bit of help to you.

Linda :-)

Thanks Linda. 

I'm a bit crushed by my scan results atm after getting through the last 6 months I thought I might be putting this behind me for a while. 

Your advice is both reassuring and terrifying in equal doses. Lol.

It's the recovery time that concerns me most if I'm honest. 

The idea of being effectively paralysed for a while is not attractive. How is the pain management during the healing process? That's a huge concern too.

Ian 

Hi Ian,

I know how you must be feeling after your scan results. But please don't be too worried about pain management - I had an epidural for the op and the few days afterwards. After that I was put on to other medication and there is a specialist nurse who will visit you regularly during your stay in hospital to make sure that you're not in pain - no-one should be in pain. Maybe a bit of discomfort! But you will be well-managed. I left hospital on tramadol and only later found out that you need to be weaned off those, so I would suggest that you don't take that long-term. I came off them and was on paracetamol. The pain/discomfort was more around the abdomen area, but it is definitely manageable.

You will not be effectively paralysed! You just have to take things easier for a while, but you improve all the time. You learn to listen to your body. I was very tired after the operation, and that went on for a while, but a power nap sorts things out! You can't drive for several weeks, but that's only until you can perform an emergency stop, so it's not forever! After my op I found that I had a short attention span and found it difficult to concentrate on things, but that soon goes and you do get back to where you were. When I got home from hospital I made myself get up and dressed every day in the morning as I felt that by staying in my jammies in bed wouldn't help me to get back to normal. You'll have a lot of adjusting to do with your stoma, so that will occupy you. I had the district nurses coming in every day for several weeks and they looked after the wounds, changing dressings as required. 

It's a big operation but if you're prepared for it, that can only be a good thing.

You'll be fine.. you can do this!

Linda :-)

When you say epidural for the op, you mean a local?  That's seems unthinkable. 

Are you able to move immediately after the op? 

Ive too many questions sorry. 

Ian

Hi Ian,

No need to apologise... ask away, that's what we're here for!

An epidural is NOT a local! It numbs your abdomen area. Immediately after the op you can move, albeit with a bit of difficulty, but that's due to all the drips and the wires for the monitors that you get linked up to. The nurses will get you up on your feet if not the very next day after the op, the day after that. You will be encouraged to get up out of your bed. The nurses will support you when you move about. I was also able to do some exercises to keep my circulation moving whilst lying on the bed. During your stay in hospital, after a few days the drips etc all start to get removed one by one and that's a sense of achievement in itself! 

I was in hospital for 10 nights, and was able to walk out of hospital. But you really do have to be careful in what you do because of the wounds. Did you know that if your rectum is removed and they sew up the bum, you then have a Barbie Bum???

Linda

Thanks for your patience Linda

I would have thought that a general is an absolute must in a big op like this? Your weren't awake were you? 

Thanks for the info, it has made it seem more doable than I first imagined. 

Ian.

To use the words of the anesthetist the epidural ( not like birth ones) numb you from nipples to your toes....this effect lasts after..and is implimented by pain relief

big op but do-able and you have pain relief too

I was out in 6 days after my stoma at 73...so you'll  be fine honestly x

one tip and its a BIGGIE

during recovery its difficult to sit and watch the dust settle!!!

but ts important that you do just that

Tiny walks 

new to this replying thing 

But your conscious throughout? That's unthinkable for me.

Ian