APR Resection Barbie Bum

Hi George and welcome. You've come a long way now, and it's good to hear you are doing so well. We all take our own time to get over the aches and pains, but they do disappear. I had my surgery mid-September and was able to sit properly by Christmas, and back to work (office work) the following January. I did still have some discomfort for several months, but it really does go! Good to hear you're coping with your stoma too as that's a major change to deal with. What I would say is that some people's wound at the Barbie bum seems to heal, whilst for others it can take years, if it does heal. I'm almost 6 years on and my wound hasn't healed properly yet - I had chemoradiotherapy before surgery and then a few months later told I had diabetes. 

Hope this answers your question!

Linda :-)

Hi Linda 

Just wondering if you did radiotherapy etc first before surgery - can this give more room for saving sphincter ? Also they keep saying you could have a complete response to EBRT radiotherapy and maybe no surgery , has anyone heard of this ? 

Best Annie x

Hi Annie,

I had radiotherapy and chemotherapy for 5 weeks prior to surgery, and then had chemotherapy after surgery. I knew from the day that I was diagnosed that there was no option for me but for a permanent colostomy due to two tumours - one high up in the sigmoid, and one very low down. The surgeon said that for the best quality of life for me, a permanent colostomy was the best option. Whilst I didn't even know what that was at the time, looking back and also reading of others' experiences, I'm glad of my permanent colostomy - would rather that than having to worry all the time if I could make it to the toilet in time. I was diagnosed in 2012, so I'd be surprised if treatments haven't improved, so perhaps others here can help you with their more recent treatments?

Linda :-) x

Hi,

At week 6 I was a lot more mobile, I even managed a local 5k run, but it still hurt to sit down.

At 2 months things really started to return to normal and I could sit without any problems.

It's 3 months for me now and I can sit as normal, although occasionally I feel just a small ache depending if I move or stay in the same position when seated at a desk.

I still have my wound, my perineum would re-opened, so I have that packed every couple of days.

The pain will stop, just keep moving a little, but you don't need to go crazy because soon things will return to normal and you will feel like doing more.

Hi Linda 

Thanks for replying. How was chemo and radiation and did you have to wait a few weeks to start it after diagnosis ? Or straight away ? 

Thanks so much 

Annie 

Hi Annie,

I went for a sigmoidoscopy in April 2012, but ended up with a full colonoscopy that day and also told after the colonoscopy of my diagnosis. The following week I had an appointment with the consultant and he gave me the general treatment plan and timescales. I was to have 5 weeks chemoradiotherapy, followed by recovery. (That was to start in June). Surgery would take place in mid-September, with recovery which took me to the December. I didn't really have to wait that long for treatment to start - I needed a CT and MRI scan first, then met the oncologogist. So everything pretty much ran to plan according to the original timescale. 

My chemo was in tablet form, and I got that on the first day that I went to the Beatson in Glasgow for the start of the radiotherapy. The nurses went through the chemo and possible side-effects and gave me lotions and potions to deal with any side-effects. (I should have taken a shopping bag with me for the amount of things that were given to me!!). To be honest, my hair thinned a wee bit, and I had no real side-effects other than diarrhoea, but that was quite mild. My sister gave me a great piece of advice for attending the radiotherapy... she said treat that as your job. You travel, get the job done, and travel home. I managed fine, but did get a bit tired as time went on. But that could be down to the travelling. 

Hope this helps, but if there's anything else.. ask away!

Linda x

Linds 

you are a superstar. so it was a few weeks until it started after meeting oncologist ? Because I saw him this week and then he said it will be another 2 weeks or so to plan it - physics etc and then start around 20 July ! I was quite surprised as thought treatment would be quicker starting but he said lots of planning to be accurate with radiotherapy? It sounds like you coped really well with both radiotherapy she chemo tablets. Good to hear you don't lose all hair? Did you have much  burning from radiotherapy ? Did your tumour reduce through it ? Thanks so much for your help . Annie xxxx

Hi Annie,

There is a team working for you, some of whom you might never meet, but they are all doing their bit to make sure that you get the treatment that's right for you. If you're starting around 20th July, I reckon you could be well on the road to recovery by Christmas.. and what a Christmas gift that would be! There is a lot of planning - scans, meetings, going to get your tattoos (you get tattoos to help the radiographers when your radiotherapy starts. When I say tattoos... it's wee dots - I had one above my bum, and one on each side of my hip). Before you start your chemoradiotherapy if you get your hair coloured, you should get it done - once you start chemo you can't get your hair coloured. I didn't have burning from the radiotherapy, maybe slight discomfort. But, whatever symptoms you might have, you really must mention to the radiographers - they will help you get the help you need to combat side-effects/discomfort etc. I actually don't know if my tumours reduced - for me, that wasn't important because whatever happened with the radiotherapy would not alter my outcome. 

Linda x

Hi Linda 

thanks that's a really good tip about the hair. I wouldn't have known that so I will book in. How are you finding the stoma ? As I'm dreading it although I probably shouldn't .. as if it's necessary. ? They said to me that the radiation chemo it might have a complete response - about 20% ? So maybe no surgery but 80% that means do. Good timing as you say I could be ok for Xmas . so nervous ? Annie Xxxx

Hi Annie,

I had no choice on a stoma, and mine is permanent. I didn't know what a stoma was until I was told that I would have one! It's a bit daunting at first, but you soon get used to it. I'm only now starting to have a bit of a problem as I have developed a hernia around the stoma area, but I'm hoping to see my consultant soon and hopefully have surgery to get that sorted out. You'll find that there's nothing that you can't do now, or can't eat what you eat now, when you have your stoma. You might have to tweak a few things, but it's manageable. My stoma nurses encouraged me to try irrigation and that has been a huge positive impact on my stoma management. I irrigate first thing every morning and have taken back some control of my bowel, and it means that I can go most of the day without breakthrough. 

You should keep a blog of your journey through your treatment and later on, look back at what you've written and you'll see just how well you will have done. But you never know... your chemoradiotherapy might just be enough to deal with your tumour! Take each day a day at a time, and face everything head on. You can do this ... you really can! Have your goals, and keep focussed. For me, I broke it down into chunks... chemoradiotherapy first, then recovery. I recovered so well that I actually got back to work for about 5 weeks before my surgery. Then it was the surgery, followed by recovery. Then it was getting on with life, and life has been good so far!

Linda x