Golf with a Stoma (no banter please)

Rooter

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@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.
 

DannyOT

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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
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

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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 .
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

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DannyOT

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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

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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
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

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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 .
Most are private groups but that's entirely your decision.
 

DannyOT

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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.
 

Bunkermagnet

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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

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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)
There's a charity that accept s unused supplies, I can let.you have an address.if you like ?
 
Thread starter #96

spongebob59

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

Leftie

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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.
 
Thread starter #98

spongebob59

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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.
And we 'll finally get that game.!
 

Kellfire

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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.
All the best, mate. Looks like you’ve had a great attitude all the way.
 
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