# Golf with a Stoma (no banter please)



## spongebob59 (Apr 6, 2019)

Had some bad news yesterday so going in for some major surgery.

Just wonder if anyone else has been through this type of Op and what recovery is like and ability to play again.

Happy to correspond by PM as I know this is quite a personal thing to go through and discuss.

Still trying to get my head around it at the mo . .


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## Robin Hood (Apr 6, 2019)

What a shock that must have been. 
I have worked in healthcare all my life, and can say the support you will be given will be excellent. Stoma nurses are fabulous and will guide you through your journey.
My sister in law had a stoma at the age of 60 (ish) and carries on life as normal, doing TaiChi and yoga.
Good luck buddy.


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## Tashyboy (Apr 6, 2019)

SB59, am not gonna pm you because there is a certain sigma attached to people with stomas, and there should not be. Being open helps to tear down misconceptions.
I would hope that you will be pleasantly surprised by the improved lifestyle you may have. Missis T worked in urology outreach ( in essence a district nurse that specialised in waterworks). At her hospital there was Stoma care nurses that did exactly the same as Missis T. They were fantastic. They were able to offer advice re the individuals needs and the equipment you will need to carry out your day to day living. It is paramount to the individual to lead as normal a life as possible. My first advice would be to see if they have such nurses at your local hospital.
Don't know your circumstances, but an ex PP had an op to have the Stoma bag fitted, but a year later he had the reversal. He was down about it initially but a few months later he could not understand why he had got depressed about it. He said the Unknown was maybe the problem, the initial shock, but he just could not work out why he beat himself up.
Missis T has buggered off to Austria for five days, she is back tomorrow. Will have a natter with her me man to see if she can offer advice.
All the best SB.


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## spongebob59 (Apr 6, 2019)

I was diagnosed with bowel cancer 5 years back but minor surgery was able to remove it and was given the all clear.Been on yearly monitoring and this year was meant to be the big all clear but one of the scans has shown a shadow. Had some more diagnotic scans and it is back but localised so they intend to do a resection and I'll have a bag but with be reversible. May have to have chemo depending on histology.
All a bit daunting but the consultant says his stoma team are excellent and I will meet them prior to op.
Just want to start looking for the positives at the mo, was a bit low yesterday.


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## Liverpoolphil (Apr 6, 2019)

No idea about a stoma but just wanted to say fingers crossed and thoughts with you during such a horrible terrifying time in your life - many of us on here only know each other via posts and avaters but we are always here for some light relief or advice or even just to let some steam off when you feel down or need a cheer up 

Good luck to you and never ever feel that you need to hide anything in regards an illness that needs more and more work - never feel ashamed


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## bluewolf (Apr 6, 2019)

Just echoing what Phil wrote. I hope everything goes well. I wouldn't worry about the stoma. Just concentrate on kicking cancer's arse again and know that we'll all be sending positive vibes your way ðŸ‘


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## Slime (Apr 6, 2019)

Liverpoolphil said:



			No idea about a stoma but just wanted to say fingers crossed and thoughts with you during such a horrible terrifying time in your life - many of us on here only know each other via posts and avaters but we are always here for some light relief or advice or even just to let some steam off when you feel down or need a cheer up

Good luck to you and never ever feel that you need to hide anything in regards an illness that needs more and more work - never feel ashamed
		
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Exactly what Phil said.
Chin up, fella.


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## Hobbit (Apr 6, 2019)

Mate of mine had it done about 15 years back. He played golf ok afterwards, and the reversal went well too. Mind you, it didn't cure his slice.

Good luck.


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## Deleted member 16999 (Apr 6, 2019)

Good luck matey, hopefully youâ€™ll be back on the course soon.


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## Wabinez (Apr 6, 2019)

Although I have no experience of it, a female YouTuber I follow had a Stoma just over a year ago and she documented everything after surgery etc. Sheâ€™s a young 20-something so recovery times may have been a bit quicker potentially...but it does take work, patience etc.

If you want to look her up, her YouTube account is HannahWitton.


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## HomerJSimpson (Apr 6, 2019)

spongebob59 said:



			I was diagnosed with bowel cancer 5 years back but minor surgery was able to remove it and was given the all clear.Been on yearly monitoring and this year was meant to be the big all clear but one of the scans has shown a shadow. Had some more diagnotic scans and it is back but localised so they intend to do a resection and I'll have a bag but with be reversible. May have to have chemo depending on histology.
All a bit daunting but the consultant says his stoma team are excellent and I will meet them prior to op.
Just want to start looking for the positives at the mo, was a bit low yesterday.
		
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Good luck with it all and I can only reiterate what Robin Hood and Tashyboy have said about the quality of the stoma nursing staff and the work they do.


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## Bunkermagnet (Apr 6, 2019)

My youngest had a stoma after emergency surgery due to a major flare up with her Crohns desease. She was 23 I think when she had the bag fitted, although had a reversal 8 months later.
She hated it initially, but got very used to it and when she was told she could have it reversed, she actually considered keeping it.
As she said, better the bag than dead.
The only thing is remember what you can and cant eat. Also, the bag contents smells nothing like when it normally naturally leaves you
Ask me or pm me if you want to ask anything m8.


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## spongebob59 (Apr 6, 2019)

Bunkermagnet said:



			My youngest had a stoma after emergency surgery due to a major flare up with her Crohns desease. She was 23 I think when she had the bag fitted, although had a reversal 8 months later.
She hated it initially, but got very used to it and when she was told she could have it reversed, she actually considered keeping it.
As she said, better the bag than dead.
The only thing is remember what you can and cant eat. Also, the bag contents smells nothing like when it normally naturally leaves you
Ask me or pm me if you want to ask anything m8.
		
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Thanks mate .ðŸ‘


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## srixon 1 (Apr 7, 2019)

Hope everything goes well for you. Keep a positive mind set and you will soon be out on the course again.


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## Rooter (Apr 8, 2019)

I don't have one yet, but once the drugs i am on finally stop working its highly likely i will have one. I am not playing golf these days, but do a lot of running and triathlon, a few groups i am part of, loads of the guys and girls have Stomas and still continue to run marathons, do ironman triathlons etc etc. I am sure you will be fine once you have it! Fingers crossed for your op.

And as Tashyboy says, there should be no stigma these days! There was a chap who flashed his and got his picture picked up at the end of a parkrun this week, has been great for awareness! News story here:

https://www.walesonline.co.uk/news/wales-news/people-furious-mans-parkrun-picture-16084090


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## IanM (Apr 8, 2019)

Mum has one... she has to watch what she eats and sometimes it needs a "pit-stop" at unplanned times.... but it is the difference between here being alive and not!  In truth, she has good days and bad days... 

So fight the fight... and afterwards do whatever you can do.. run marathons, jump out of aeeoplanes, play golf, or sit on a bench and look at to sea and just feel the wind on your face! 

Al the best!


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## Rooter (Apr 8, 2019)

Oh and get used to liking marshmallows! From what i hear they are very good at helping! Seriously!


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## Bunkermagnet (Apr 8, 2019)

Rooter said:



			Oh and get used to liking marshmallows! From what i hear they are very good at helping! Seriously!
		
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Defo......and nothing too hot or spicey, or anything with too much fibre or with shells (peas, sweetcorn etc)
That applied to my duaghter anyway, who had her bag on her right for the small bowel.


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## spongebob59 (Apr 8, 2019)

surgery pencilled in for end April 
I'm sh****g myself but at least not into a bag atm.


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## Bunkermagnet (Apr 8, 2019)

spongebob59 said:



			surgery pencilled in for end April 
I'm sh****g myself but at least not into a bag atm. 

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Good luck m8, I'm sure it will be fine.


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## spongebob59 (Apr 24, 2019)

Quick update.

Booked in for this Sunday, 28th, but still waiting for the paperwork/confirmation.
In for up to 8 days.
Will be out for 3-5 months, may need chemo depending on histology.
Tablet loaded with 4 box sets and a few films, maybe I'll get to watch the last few series of the wire.
So last game today.


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## Tashyboy (Apr 24, 2019)

spongebob59 said:



			Quick update.

Booked in for this Sunday, 28th, but still waiting for the paperwork/confirmation.
In for up to 8 days.
Will be out for 3-5 months, may need chemo depending on histology.
Tablet loaded with 4 box sets and a few films, maybe I'll get to watch the last few series of the wire.
So last game today.
		
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Smash it me man. ðŸ‘


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## Robin Hood (Apr 24, 2019)

We will all be rooting for you.
Very best wishes ðŸ‘


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## Slime (Apr 24, 2019)

Robin Hood said:



			We will all be rooting for you.
Very best wishes ðŸ‘
		
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What he â–² said.


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## bladeplayer (Apr 24, 2019)

Best wishes mate. Dont know ur religious beliefs or dont care  but il b saying a prayer for u . 
Stay strong


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## spongebob59 (Apr 24, 2019)

spongebob59 said:



			Quick update.

Booked in for this Sunday, 28th, but still waiting for the paperwork/confirmation.
In for up to 8 days.
Will be out for 3-5 months, may need chemo depending on histology.
Tablet loaded with 4 box sets and a few films, maybe I'll get to watch the last few series of the wire.
So last game today.
		
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First part went ok, 21 out,17 back.
Should be a nice little cut there to go with the big cut Sunday.


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## Leftie (Apr 24, 2019)

Hope all goes well Spongey.  My brother went through it all last year at Margate Hospital and you couldn't fault the care and commitment from the team there and subsequent chemo at Canterbury.

Was back doing his Park Runs in (seemingly) no time at all.

You will be back gracing the fairways before you know it


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## Crow (Apr 25, 2019)

Good luck chap.


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## Hobbit (Apr 25, 2019)

Good luck.Give them nurses 'ell.


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## spongebob59 (May 4, 2019)

Back ho me today, all went well in the end.
But daunting at first when you are the scar and bag.I
Was delayed release yesterday when I had reaction to tramadol so spend all day being sick the on a drip, but happy to release me todag.I don't understand why anyone would want to take these for pleasure ðŸ˜¯
Long recovery starts here.
Thanks to all for you r thoughts.


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## Slime (May 4, 2019)

Good luck going forward.


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## Leftie (May 4, 2019)

Good news Spongey.  Glad you're back with us already.

As they say, every journey starts with the first step.  I would guess you are a few miles into it already.

Some days will be good and (hopefully) only a few will be not so good. Take care, take each day as it comes.


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## Robin Hood (May 5, 2019)

Very best wishes. 
ðŸ‘


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## Tashyboy (May 5, 2019)

Good luck on your recovery, take it nice and easy me man.


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## HomerJSimpson (May 5, 2019)

spongebob59 said:



			Back ho me today, all went well in the end.
But daunting at first when you are the scar and bag.I
Was delayed release yesterday when I had reaction to tramadol so spend all day being sick the on a drip, but happy to release me todag.I don't understand why anyone would want to take these for pleasure ðŸ˜¯
Long recovery starts here.
Thanks to all for you r thoughts.
		
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Good luck. Take it nice and easy and get well soon


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## chrisd (May 5, 2019)

Really sorry that I missed the early posts. I wish you a speedy and full recovery ðŸ‘ðŸ‘


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## spongebob59 (May 25, 2019)

Quick update, surgery went well, he was happy that he's got everything out, however the margin between the layer he cleared was less than 1mm, so he's referring me to an oncologist. Reading between the lines I'll probably have to go through chemotherapy just to kill any residual cancer. He said if he'd have taken anymore out it would have meant no reconstruction was possible so  not reversible. Round 1 o er onto the next bout.

On the upside after a few leaky nights we've sorted the bags out and I've got appetite back so on 4 small meals a  day and I'm up to 2x 30 minute walk s a day. Golf  still seems a long way off but been told can't drive for 6 week  so plenty of time to work on fitness.


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## Tashyboy (May 25, 2019)

Small Steps spongy. Small steps. Right time
Of the year to be out doing your exercises. Dont over do it.


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## Slime (May 25, 2019)

Keep going, fella, you're obviously heading in the right direction.
Just focus on that.


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## Foxholer (May 25, 2019)

spongebob59 said:



			Quick update, surgery went well, he was happy that he's got everything out, however the margin between the layer he cleared was less than 1mm, so he's referring me to an oncologist. Reading between the lines I'll probably have to go through chemotherapy just to kill any residual cancer. He said if he'd have taken anymore out it would have meant no reconstruction was possible so  not reversible. Round 1 o er onto the next bout.

On the upside after a few leaky nights we've sorted the bags out and I've got appetite back so on 4 small meals a  day and I'm up to 2x 30 minute walk s a day. Golf  still seems a long way off but been told can't drive for 6 week  so plenty of time to work on fitness.
		
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Great to hear you are recovering well.

Maybe not always the best role-model but to quote another 'sportsman' who has 'taken advantage' of medical science...Stay Strong!


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## Robin Hood (May 25, 2019)

You are sounding very positive.
Smile as much as you can, and never worry about asking for advice or help.
ðŸ‘


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## spongebob59 (Jun 11, 2019)

Quick update, started driving yesterday so am thinking  a putting green beckons.
got appointment with the oncologist on Thursday to discuss chemical warfare.
round 2, Ding .


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## Slime (Jun 11, 2019)

spongebob59 said:



			Quick update, started driving yesterday so am thinking  a putting green beckons.
got appointment with the oncologist on Thursday to discuss chemical warfare.
round 2, Ding .
		
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You're heading in the right direction ............................................................ just keep going.


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## Robin Hood (Jun 11, 2019)

Well done SB
You've come a long way in such a short time.
Stay positive, and enjoy the putting.
ðŸ‘


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## Tashyboy (Jun 11, 2019)

Spoke to Missis T, can knock you for six yet others are fine. As Robin Hood says Stay strong ðŸ‘ And it won't be long before the frustrations of three putting are your biggest problem ðŸ˜


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## user2010 (Jun 11, 2019)

Sounds like a song Morrissey/The Smiths would do.


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## HomerJSimpson (Jun 12, 2019)

spongebob59 said:



			Quick update, started driving yesterday so am thinking  a putting green beckons.
got appointment with the oncologist on Thursday to discuss chemical warfare.
round 2, Ding .
		
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Good news. Take it easy but I am sure putting will be therapeuitc/infuriating in equal measures


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## spongebob59 (Jul 29, 2019)

Chemo started today, hopefully side effects will be minimal, have to moisturise my hands and feet to stop skin cracking.

On the up side I've been fitted for a support belt and when it arrives I can try some gentle pitching etc and work my way back to  playing if I feel up to it.


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## Leftie (Jul 30, 2019)

Sounds like it's going well mate.  From what my brother tells me, there are a lot of different types of chemo.  They will have assessed what's best for you and you will probably by now have been told of possible side effects.  Some will cause hair loss (so what - it will come back), another will cause fingers and toes to feel cold, will make breathing difficult in cold air, etc, etc.  Most will probably make you feel lethargic.  Fwiw, my brother is back to the times for his weekly 5K runs that he had some months before feeling unwell.

You are obviously a positive person so will take it all in your stride.  It may be difficult at times but you will get through it and come out the other side.  Heck.  Your golf might even improve


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## Bunkermagnet (Jul 30, 2019)

Slow and steady, thatâ€™s the way m8.
Glad to hear your progressing well


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## Tashyboy (Jul 30, 2019)

spongebob59 said:



			Chemo started today, hopefully side effects will be minimal, have to moisturise my hands and feet to stop skin cracking.

On the up side I've been fitted for a support belt and when it arrives I can try some gentle pitching etc and work my way back to  playing if I feel up to it.
		
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Nice to hear spongy. Hope some of the posts on this forum make you smile. ðŸ˜
Little steps Bob. Little steps. ðŸ‘


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## spongebob59 (Nov 9, 2019)

Thought I'd post a little update:

After a rocky 3 months getting the chemo dose right (including a month off treatment to let things get back to normal) I've been given the go ahead to resume, so 2 cycles before xmas, a break for xmas and new year the the 2 final cycles in Jan.
If bloods etc fine after I'll be signed off back to my surgeon and await reversal.
So should be looking for some spring golf once I've got the fitness back.
Nothing holding me back from a bit of practice in the meantime . .


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## Rooter (Nov 9, 2019)

Good news SB! best of luck matey!


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## Slime (Nov 9, 2019)

spongebob59 said:



			Thought I'd post a little update:

After a rocky 3 months getting the chemo dose right (including a month off treatment to let things get back to normal) I've been given the go ahead to resume, so 2 cycles before xmas, a break for xmas and new year the the 2 final cycles in Jan.
If bloods etc fine after I'll be signed off back to my surgeon and await reversal.
So should be looking for some spring golf once I've got the fitness back.
Nothing holding me back from a bit of practice in the meantime . .
		
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That's awesome news, I just wish I could have liked it more than once!


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## DCB (Nov 9, 2019)

Good news. Hope all continues to go well. It's a great feeling when you eventually make it back onto the golf course believe me.


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## Leftie (Nov 9, 2019)

Sounds good Bob.  Keep taking the tablets  

Work hard on getting your fitness back and we'll get that game in in the new year


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## spongebob59 (Nov 9, 2019)

Leftie said:



			Sounds good Bob.  Keep taking the tablets  

Work hard on getting your fitness back and we'll get that game in in the new year 

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Leftie said:



			Sounds good Bob.  Keep taking the tablets  

Work hard on getting your fitness back and we'll get that game in in the new year 

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I taken so many tablets now you'll have to put up with me rattling down the fairway


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## HomerJSimpson (Nov 9, 2019)

spongebob59 said:



			Thought I'd post a little update:

After a rocky 3 months getting the chemo dose right (including a month off treatment to let things get back to normal) I've been given the go ahead to resume, so 2 cycles before xmas, a break for xmas and new year the the 2 final cycles in Jan.
If bloods etc fine after I'll be signed off back to my surgeon and await reversal.
So should be looking for some spring golf once I've got the fitness back.
Nothing holding me back from a bit of practice in the meantime . .
		
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Good news but take it easy, listen to the advice you're given and look forward to seeing you on a fairway soon


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## spongebob59 (Feb 9, 2020)

Well after  somewhat bumpy 7 month , I've just completed my last chemo cycle.
Got to go for bloods in a month's time and hopefully will be signed back to the surgeon.
been told it takes 4-6 weeks to clear so looking at trying to get back on the course March ti me.
hope to see some of you back in a course soon.


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## Tashyboy (Feb 9, 2020)

spongebob59 said:



			Well after  somewhat bumpy 7 month , I've just completed my last chemo cycle.
Got to go for bloods in a month's time and hopefully will be signed back to the surgeon.
been told it takes 4-6 weeks to clear so looking at trying to get back on the course March ti me.
hope to see some of you back in a course soon.
		
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excellent news. You have certainly not missed a lot of golf weather wise.


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## Leftie (Feb 9, 2020)

Sounds good Bob.  Take it easy and we'll get that game in when you are ready


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## spongebob59 (Feb 9, 2020)

Yeah a good winter to miss, shame i missed the summer.Last game was 24th April.


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## IanM (Feb 9, 2020)

Get back soon!


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## spongebob59 (Mar 6, 2020)

Blood results back today, CEA (cancer) markers back to normal


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## Robin Hood (Mar 6, 2020)

That's great news 😀👍
Very best wishes from me and the merry men 😃


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## DannyOT (Mar 6, 2020)

spongebob59 said:



			Blood results back today, CEA (cancer) markers back to normal 

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Great news! Must be a massive relief. 

Can I ask, have you still got the stoma and did you manage to play any golf with it? I had a permanent stoma 8 weeks ago due to ulcerative colitis and I'd love to play golf again at some point in the future.


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## spongebob59 (Mar 6, 2020)

DannyOT said:



			Great news! Must be a massive relief.

Can I ask, have you still got the stoma and did you manage to play any golf with it? I had a permanent stoma 8 weeks ago due to ulcerative colitis and I'd love to play golf again at some point in the future.
		
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I have and yes I have been on the range with no issues but have to wear a support belt. If the course is open tomorrow I'm going up for a few holes. PM me if you want to chat.


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## chrisd (Mar 6, 2020)

spongebob59 said:



			Blood results back today, CEA (cancer) markers back to normal 

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Fantastic !


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## Leftie (Mar 6, 2020)

No excuses now Bob (other than waterlogged courses of course).  Will will get that game in when you are ready


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## Slime (Mar 7, 2020)

spongebob59 said:



			Blood results back today, CEA (cancer) markers back to normal 

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Awesome news, onwards and upwards from now on.
To infinity and beyond!


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## DannyOT (Mar 7, 2020)

spongebob59 said:



			I have and yes I have been on the range with no issues but have to wear a support belt. If the course is open tomorrow I'm going up for a few holes. PM me if you want to chat.
		
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In terms of stoma life I'm doing pretty well. It was almost expected at some point due to my ulcerative colitis so I don't have the sort of drastic life change that a lot of people have. I had plenty of time to prepare. 

I was just wondering what support belt you wear? I've got a hernia belt on its way thati was fitted for by the stome nurse and I'm hoping it's enough. 

Did you have to adjust much in your swing? I've always relied on speed with my swing and I imagine I'll have to slow things right down. I'm just terrified of getting a hernia.


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## spongebob59 (Mar 7, 2020)

which ostomy have you got ?
I've got a supportx belt, you should get 3 free on prescriptio n.

I'll pm you some groups you should join .


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## spongebob59 (Aug 6, 2020)

Back in today for a minor op, check up in 2 weeks and if ok will schedule my reversal .😁


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## DannyOT (Aug 7, 2020)

spongebob59 said:



			Back in today for a minor op, check up in 2 weeks and if ok will schedule my reversal .😁
		
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Great to hear. If you've still got plenty of colon left, reversal should be pretty straightforward for you once the initial swelling from surgery dies down. I bet you never thought you'd miss going the conventional way so much.


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## spongebob59 (Oct 26, 2020)

Jubilee said:



			New member here
A question to to spongebob59
Is it a. Ileostomy or a colostomy you have and how many months after surgery was advisable to play golf ?
I hope if you’ve had your reversal surgery that it went well !
		
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Ileotomy. Probably about 4 months before I was hitting balls on the range but then I had chemo so didnt actually get on the course for a year and then we went into lockdown 😥.
I'd say just take it easy and get support wear, I've ended up with a hernia which is being fixed in 2 weeks time along with my reversal.
feel free.to PM me any time.


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## spongebob59 (Oct 26, 2020)

Still early days but don't worry you will.get.there.
There's a Facebook group worth joining, colostomy UK, if you haven't already.


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## spongebob59 (Oct 26, 2020)

https://www.facebook.com/groups/colostomyassociation2011/?ref=share


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## Kellfire (Oct 26, 2020)

Sadly any strenuous efforts that exerts the abdominal muscles brings a risk of parastomal hernia. You need to allow yourself a lot of time to build the muscles up that have been damaged through surgery, as well as allowing the stoma itself time to become healed and secured in position. Make sure you don’t press ahead, thinking it’s a matter of mind over matter when it comes to physio and attempting to play golf. Play the long game and you’ll have a much better chance of coming back fully able to play again.


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## spongebob59 (Oct 27, 2020)

I'll pm you.


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## Kellfire (Oct 27, 2020)

Jubilee said:



			Yes I feel it’s going to be a long process. Walking I suppose will help build up stamina
I also feel it’s going to take some time before I gain the weight lost due to the high output of the stoma or does that settle? I can’t take the jelly babies and Marsh mallows to slow it down because I am diabetic  
I’m hearing & reading such good & positive feedback about taking turmeric paste for healing and inflammation and other benefits for the colon and many other ailments so think I’ll consider using this paste in the coming weeks , any thoughts on that ?
		
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My partner was very high output at first, but she was also having chemotherapy which played havoc with her digestion. Since she stopped chemo, it settled right down and she’s very good at coping with the output. 

You may be different depending on your underlying health conditions. 

What I would say is this - if you’re embarrassed or squeamish about your stoma, I promise that will pass. I’ll be sat on the sofa with my lass and she’ll be squeezing the bigger lumps in her stoma bag to break them down and move more easily into the bag without a care in the world. Obviously I tell her she’s gross but she just laughs it off. She’ll also sit at stare as she passes stuff because “it’s fascinating”.


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## Rooter (Oct 27, 2020)

@Jubilee not sure if you are in this situation from Crohn's or colitis, but as its a common reason for the surgery, if you want details I am part of a FB group for running with C&C. So many stoma stories, I am one of the lucky ones on drugs only still. But many of the Stoma bods swear by running and being fitter helps with symptoms.


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## DannyOT (Oct 30, 2020)

Jubilee said:



			Thank you very much for your reply
I’m just a recent ileostomy still in hospital so worried about the various problems that could occur .
But as a keen golfer just want to know that I can eventually get my fitness back to previous level again for spring
Thinking ahead to golf of course and the problem at the moment is loose output and being a diabetic I can take the usual jellies and marshmallows to firm it up
Thanks for offer to PM I may do that for tips on coping
Many thanks
		
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Just to add, I'm 10 months post op with my ileostomy and I've been pretty much back to normal since June / July. It's tough as hell at first but I started seeing a big improvement about 6-7 weeks after surgery. 

There's nothing I've found so far that I can't do with an ileostomy. If you need any help / advice, feel free to message me


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## spongebob59 (Nov 1, 2020)

Jubilee said:



			Is weight gain a very slow process with an ileostomy ?
Some of the diets recommend eating cakes biscuits etc which can slow output but much of those suggestions a diabetic has to avoid .
		
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Yes,.I lost around 12 kg, was a struggle.to put it back on, get.a.referral for a dietician.
I could make some suggestions but Id imagine you need specialist advice.

Have you joined the facebook group yet, you'll get better more targeted advice there.


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## spongebob59 (Nov 2, 2020)

I went to see a dietician and was given a tailored plan, which is what I'm guessing you need.
You're far more likely to get advice on the FB pages than in here. Colostomy Uk  also has a website and some numbers where you can phone for advice.

https://www.colostomyuk.org/information/a-z-list/


https://www.colostomyuk.org/support/
https://iasupport.org/


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## DannyOT (Nov 2, 2020)

I didn't have any issues with weight gain once I started eating properly again (around a week after surgery). I lost a lot before surgery due to ulcerative colitis but I went from 58kg back to my usual 75kg in 6 weeks. A lot of it depends on the underlying issue that caused the stoma and the condition of your remaining gastro intestinal tract. 

Do you know if it is a loop ileostomy or an end ileostomy that you had? Loop ileostomies tend to have much higher output and less ability to absorb as they tend to be done much higher up the GI tract and therefore less time for food to absorb. 

The Facebook groups I use mainly for information and advice are:

- The real ostomy support group
- Stoma & ostomy support group
- Ostomy lifestyle athletes

If I'm making a sweeping generalisation, the stoma world seems to be broadly split into 2 groups. Those who had ostomy surgery due to underlying intestinal issues (ulcerative colitis, crohns, diverticulitis etc) and those who had surgery but never had previous bowel issues (cancer, accidents, surgical complications etc). 

Understandably, those who didn't have previous intestinal issues tend to struggle much more at first with coping as they had never had the previous problems and suddenly ****ing into a bag is a massive shock and has no upside. The underlying issues groups tend to have a much more positive attitude purely because surgery has alleviated a lot of their daily struggles and has given them their life back. 

The reason I mention that is there can be a lot of negativity on the Facebook groups as people are going through a lot. Don't take everything as gospel, especially when it comes to what you can and can't eat! There is some great advice out there but also a lot of pseudo science and opinions based on what someone has read online.


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## spongebob59 (Nov 2, 2020)

Jubilee said:



			Despite visits from Hospital dietician and a booklet to help with suggested meals I didn’t didn’t really glean anything that would help with weight gain
Yes your right now that I’m home I’ll contact the local NHS dietetics dept .
Your right I’m more likely to get advice on FB pages than here , I’m really sorry for having filled your thread with questions . I’ll check appropriate sites and FB accounts when I join
Many thanks
		
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You should be able to get a telephone consulatation at the very least, I'm lactose intolerant so not sure if any of my diet sheet would be much use, I pretty much made my own smoothies to ge the calories in.
I didnt know about the other groups Danny listed but Ive signed up for a couple for a look, will still need some advice post reversal, and its worth checking the Colostomy UK for local support groups, even if they are not active for face to face meetings they might have a local facebook page like mine do.
Feel free to PM whenever at .

I actually found some golfers at my club who were ostomates through the facebook pages rather than golf sites, so its worth asking on there too.


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## spongebob59 (Nov 2, 2020)

Jubilee said:



			I’m sure telephone consultations are available .
I was jumping the gun so to speak asking Ostomates own experiences & in confidence which FB is not 
Thanks for replies .
		
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Most are private groups but that's entirely your decision.


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## DannyOT (Nov 2, 2020)

Yep all the groups on Facebook that I'm a member of are private and only other members can see your posts. You could also create an anonymous profile to join if you want even more privacy. 

One thing I've found and is certainly echoed by others... surgeons / gps and even most stoma nurses have little to no idea about the day to day life of an ostomate. I've got so much more useful advice from social media groups than I ever would have from anybody in the medical profession. 

One of the biggest pieces of advice I would give anyone with a stoma is find the right bag! The ones they give you straight out of surgery are awful and are the most unflattering things ever. Speak to your stoma nurse to get some samples ordered and try out different ones. The two top ones in the UK are 'coloplast sensura mio' and 'salts confidence be'. 

If you want any advice from me, please feel free to pm me. I've got an end ileostomy too so can appreciate how tough it is at first.


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## Bunkermagnet (Nov 2, 2020)

When my youngest daughter had her bag after emergency surgery (shes a Crohns victim) she was sent loads of supplies, many of which were wrong and some of which she never used. I have an almost new box of black poo bags and an almost new box of lint free clothes I presume they are for cleaning up. If anyone wants them, PM me and I will have them delivered to you. It's no good me trying to return them, a) the box has been opened, and b) they've been in our house and are considered soiled. ( I won't tell you how many boxes of new bag's we got rid of because they kept sending the wrong ones and wouldnt take them back)


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## spongebob59 (Nov 2, 2020)

Bunkermagnet said:



			When my youngest daughter had her bag after emergency surgery (shes a Crohns victim) she was sent loads of supplies, many of which were wrong and some of which she never used. I have an almost new box of black poo bags and an almost new box of lint free clothes I presume they are for cleaning up. If anyone wants them, PM me and I will have them delivered to you. It's no good me trying to return them, a) the box has been opened, and b) they've been in our house and are considered soiled. ( I won't tell you how many boxes of new bag's we got rid of because they kept sending the wrong ones and wouldnt take them back)
		
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There's a charity that accept s unused supplies, I can let.you have an address.if you like ?


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## Bunkermagnet (Nov 3, 2020)

spongebob59 said:



			There's a charity that accept s unused supplies, I can let.you have an address.if you like ?
		
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Yes please m8


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## spongebob59 (Nov 8, 2020)

Reversal surgery went well, spaced out on oxycodeine,there's a strange pleasure about being able to fart again.


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## Leftie (Nov 8, 2020)

Good news Bob.  Speedy recovery 

That's one activity where you definitely don't want a good follow through.


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## DannyOT (Nov 9, 2020)

Great to hear! Must be such a weird feeling going the 'normal' way again.


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## spongebob59 (Nov 9, 2020)

DannyOT said:



			Great to hear! Must be such a weird feeling going the 'normal' way again.
		
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Not done that yet, been in fluids, soup later n
Hope to be discharged. Wednesday or Thursday.


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## spongebob59 (Nov 9, 2020)

Just seen physio, no golf for 2 months,.can lift anything more than a full kettle due to internal stitching.


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## Leftie (Nov 9, 2020)

Well, you're not missing much Bob.  Courses shut for Nov and who wants to play in December?  Just take it easy, follow physio's orders, get yourself back to reasonable fitness and hit those fairways in the new year.


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## spongebob59 (Nov 10, 2020)

Leftie said:



			Well, you're not missing much Bob.  Courses shut for Nov and who wants to play in December?  Just take it easy, follow physio's orders, get yourself back to reasonable fitness and hit those fairways in the new year.
		
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And we 'll finally get that game.!


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## spongebob59 (Jan 7, 2021)

Sitting up in recovery after what I hope is my final bit of surgery, if I can get back to some golf in April, it will bring to the end of this two year battle and then I just have the yearly surveillance procedures for the next 4 years.


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## Kellfire (Jan 7, 2021)

spongebob59 said:



			Sitting up in recovery after what I hope is my final bit of surgery, if I can get back to some golf in April, it will bring to the end of this two year battle and then I just have the yearly surveillance procedures for the next 4 years.
		
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All the best, mate. Looks like you’ve had a great attitude all the way.


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## spongebob59 (Aug 14, 2021)

I was hoping that my thread had ended but due to various complications I will be having further surgery later this year and will be getting a permanent (end) colostomy.

It's been difficult to watch a year that started with such hope slide by and although physically fit   I've been unable to play the sport I love and miss out on events such as the Open which was on my doorstep.

This really is the last roll of the dice but there are a few players at the club who have permanent stomas and I have coped well with a temporary one for 18 months.

So wish me luck as I wait for my surgery and hopeful to be back on the course next year 👍


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## DannyOT (Aug 14, 2021)

spongebob59 said:



			I was hoping that my thread had ended but due to various complications I will be having further surgery later this year and will be getting a permanent (end) colostomy.

It's been difficult to watch a year that started with such hope slide by and although physically fit   I've been unable to play the sport I love and miss out on events such as the Open which was on my doorstep.

This really is the last roll of the dice but there are a few players at the club who have permanent stomas and I have coped well with a temporary one for 18 months.

So wish me luck as I wait for my surgery and hopeful to be back on the course next year 👍
		
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Sorry to hear about the complications spongebob. 

It seems more common than I originally thought for people to have trouble after reversal for various reasons unfortunately. 

I hope the surgery gives you the ability to enjoy a round again. 

I've had my end ileostomy for 18 months now and I can manage a full 18 holes if I eat a little less for the 12 hours before. I'd imagine a colostomy may be a little less 'constant' and you will be able to get out and play once you've recovered.


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## IanM (Aug 14, 2021)

My mum lived with an ileostomy for 14 years.  She was very self conscious about it until she accepted that it was the difference between seeing her grandchildren grow up ot not. 

She was very careful about what she ate and got into a management routine. 

I think the mantra was "find what works best for you " and carry on.


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## Tashyboy (Aug 14, 2021)

spongebob59 said:



			I was hoping that my thread had ended but due to various complications I will be having further surgery later this year and will be getting a permanent (end) colostomy.

It's been difficult to watch a year that started with such hope slide by and although physically fit   I've been unable to play the sport I love and miss out on events such as the Open which was on my doorstep.

This really is the last roll of the dice but there are a few players at the club who have permanent stomas and I have coped well with a temporary one for 18 months.

So wish me luck as I wait for my surgery and hopeful to be back on the course next year 👍
		
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A couple of the lads I knew at work that had stomas ( after they had finished) were worried about the “stigma” that was attached. They worried about the impact it would have on there lives. I was fortunate that as Missis T worked in urology outreach, she knew and worked alongside the stoma care nurses that went out to people’s homes. They were very good. As it transpired, a vast majority those that had Stomas fitted went on to have better lives. They were not so confined to there homes.
SB, for me the priority is getting yourself well with a goal of slowly getting back to playing golf. It’s the golf that may well help you mentally as well as physically. Good luck me man.


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## spongebob59 (Aug 14, 2021)

DannyOT said:



			Sorry to hear about the complications spongebob. 

It seems more common than I originally thought for people to have trouble after reversal for various reasons unfortunately.
		
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I get the impression that the surgeons count the success in terms of surgery rather than how it is afterwards.
Certainly from my research there are more cases than you think.
If you have a lower resection there is more chance of running into problems and something called LARS where there is very little understanding of it and why it occurs in some and not others.


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## toyboy54 (Aug 14, 2021)

spongebob59 said:



			I was hoping that my thread had ended but due to various complications I will be having further surgery later this year and will be getting a permanent (end) colostomy.

It's been difficult to watch a year that started with such hope slide by and although physically fit   I've been unable to play the sport I love and miss out on events such as the Open which was on my doorstep.

This really is the last roll of the dice but there are a few players at the club who have permanent stomas and I have coped well with a temporary one for 18 months.

So wish me luck as I wait for my surgery and hopeful to be back on the course next year 👍
		
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Spongebob59....Think that you can see/ guess that we're all with you in this
Let's face it though, some of us seem to be succumbing the curse of the body letting us down...no matter what we do to stay fit/ diet/yoga etc
Had my own case of TIA last week- which has buggered me up for a few weeks--BUT I WILL BE BACK ( just not carrying )
So my thoughts ( like ALL the others ) are with you in this fight-and it is a fight!
Be good, be careful-BE STRONG!!


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## DannyOT (Aug 14, 2021)

spongebob59 said:



			I get the impression that the surgeons count the success in terms of surgery rather than how it is afterwards.
Certainly from my research there are more cases than you think.
If you have a lower resection there is more chance of running into problems and something called LARS where there is very little understanding of it and why it occurs in some and not others.
		
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I'm inclined to agree. It was predominantly LARS that I was thinking of regarding complications. As you say, it seems random as to who suffers from it. 

I don't think quality of life 1, 2, 3+ is really in most surgeon's thoughts. I imagine 2 identical looking surgical results may end up in 2 completely different quality of life results, as there seems to be so many factors that determine the outcome. I never realised there are so many sensitive nerves and muscles near the rectum / sigmoid colon that can lead to numerous issues.


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## spongebob59 (Sep 10, 2021)

Had the call yesterday, pre op and surgery booked in for the end of October 😱


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## Rooter (Sep 10, 2021)

spongebob59 said:



			Had the call yesterday, pre op and surgery booked in for the end of October 😱
		
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Best of luck matey!


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## DannyOT (Sep 10, 2021)

spongebob59 said:



			Had the call yesterday, pre op and surgery booked in for the end of October 😱
		
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I hope it gives you some relief and you get your freedom back. Best wishes.


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## spongebob59 (Oct 25, 2021)

Had my surgery Sunday, all went ok, all a littl bit sore today and theyre easing down on the pain killers ☹️🤕


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## srixon 1 (Oct 26, 2021)

Spongebob, heres hoping that you have a good recovery. Take it easy and don’t try doing too much too soon.


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## IanM (Oct 26, 2021)

Good luck mate…speedy recovery


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## DannyOT (Oct 27, 2021)

spongebob59 said:



			Had my surgery Sunday, all went ok, all a littl bit sore today and theyre easing down on the pain killers ☹️🤕
		
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Wishing you a speedy recovery Spongebob. 

Hopefully you're noticing relief from the other issues already!


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## spongebob59 (Oct 28, 2021)

Everything working again, being discharged today .
Feet up for a few months 🤕😋


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## Pants (Oct 28, 2021)

spongebob59 said:



			Everything working again, being discharged today .
		
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Wasn't quite sure what you meant at first  

Glad it's all going well.  Take care


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## spongebob59 (Oct 28, 2021)

Pants said:



			Wasn't quite sure what you meant at first  

Glad it's all going well.  Take care 

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Once you get home you suddenly realise how good those painkillers were, paracetamol not quite doing it now 🤕


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## Bunkermagnet (Oct 28, 2021)

Good luck healing up m8.


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