@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.
Golf with a Stoma (no banter please)
- Thread starter spongebob59
- Start date
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
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
Thread starter
#83
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.
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.
Thread starter
#84
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/
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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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.
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.
Thread starter
#86
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.
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.
Thread starter
#87
Most are private groups but that's entirely your decision.
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.
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.
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)
Thread starter
#90
There's a charity that accept s unused supplies, I can let.you have an address.if you like ?
Yes please m8
Thread starter
#92
Reversal surgery went well, spaced out on oxycodeine,there's a strange pleasure about being able to fart again.
Great to hear! Must be such a weird feeling going the 'normal' way again.
Thread starter
#95
Not done that yet, been in fluids, soup later n
Hope to be discharged. Wednesday or Thursday.
Hope to be discharged. Wednesday or Thursday.
Thread starter
#96
Just seen physio, no golf for 2 months,.can lift anything more than a full kettle due to internal stitching.
Thread starter
#98
And we 'll finally get that game.!
Thread starter
#99
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.
