World Ostomy Day! AMA Watch

Hazzabear
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Hiya!

Yesterday on the 5th of September, it was world ostomy day for anyone with a Colostomy, ileostomy or urostomy. If you're wondering what an ostomy is it is a pouching system that collects waste (either urine or faeces) from a stoma. Here's a cool video about Ostomies! I'd advise everyone to watch it if you have time

https://www.youtube.com/watch?v=NKllYMua_24

So, what's the point of an ostomy awareness day?

Well because living with an ostomy means you have an invisible disability/illness. Nobody can see it! (unless you have the confidence to show yours of course) And many people receive negative feedback about their ostomy, even though it's a pretty niche thing to have if you require it in your lifetime. - at least ostomates don't need to use the portaloos at a festival! The picture below is the logo for the charity Colostomy Uk. They offer a widespread amount of support for new ostomates or for anyone that needs advice.
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However, there are complications with living with an ostomy. You have to be strict on meals at times, for example, stoma nurses may tell you to restrict some foods such as rice, and for myself, I've found that Beef is a huge problem as it will cause an internal blockage that requires a hospital admission.

Today I am here to raise awareness because people shouldn't be ashamed to have their own ostomy. I myself have a permeant colostomy due to having a rare condition known as anorectal malformation and additional spinal issues. Mine is only recent, in fact, I'm coming up to my stoma's three month birthday shortly and it's still challenging at times, but so much more manageable than beforehand!

Please do ask me a question below, no question is silly or stupid! I'm open to any Q's you may have! I hope I'll be able to help in some way
Last edited by Hazzabear; 6 days ago
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Obolinda
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Wow, very interesting! I think it's very important to raise awareness about hidden disabilities

Hannah Witton is an example of a Youtuber that talks about her stoma
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CoolCavy
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Great AMA
I admit i would be quite scared of having one i think its the fact the skin around it is so red and moist looking (from what i have seen) rather than looking like a normal kind of surgical hole? Were you a bit scared of it when you first got it? How have you adapted to having one?

:hugs:
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Hazzabear
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(Original post by Obolinda)
Wow, very interesting! I think it's very important to raise awareness about hidden disabilities

Hannah Witton is an example of a Youtuber that talks about her stoma
Thank you!

I definitely agree with you we need more awareness for sure. Hannah Witton is amazing on youtube, i watch her videos regularly for tips
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Hazzabear
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(Original post by CoolCavy)
Great AMA
I admit i would be quite scared of having one i think its the fact the skin around it is so red and moist looking (from what i have seen) rather than looking like a normal kind of surgical hole? Were you a bit scared of it when you first got it? How have you adapted to having one?

:hugs:
I was honestly terrified to have my surgery, I had to go in a day beforehand so I had time to talk to the stoma nurses and they were amazing, I was going to a specialist hospital so it took about four hours to get there. I was told i needed the surgery in May (just before my GCSEs started!) and then had the surgery about three weeks after GCSEs - which was exhausting.

And yes, the stoma is quite strange to look at once the bag itself is off. After my surgery, it took me about ten days to actually have a peek at the stoma as I was so nervous of what it may look like as I was told i had defects to the bowel. When I was in the hospital the bag required daily changes to clean the wound around it, I would just hand the kit to the nurse nicely as I wasn't ready yet! To be honest, I'm not fully ready to deal with the management procedure yet. I require a carer to help me to manage the colostomy, but it's baby steps after all.

Thank you for asking those amazing questions!
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Hazzabear
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If anyone feels embarrassed to ask here, you’re welcome to private message me as well

Open for all questions to raise awareness.
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Pathway
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How are you being supported in your mental health? How are you?
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Hazzabear
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(Original post by Pathway)
How are you being supported in your mental health? How are you?
There hasn't been a lot of support for myself at the moment. I do feel like I'm struggling with trying to comprehend the surgery and there's a lot of barriers psychologically and it's quite an isolating feeling. I was meant to be having counselling, however, the waiting lists are massive and private is too expensive. Although, I am seeing my stoma nurse weekly for about forty-five minutes at a time which can help. Every day is different at the moment in terms of how I feel, some mornings you'll love the bag as it gives you more freedom compared to beforehand, but then other days you literally want to rip the bag off because it can get in the way (even with clothing!)
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Pathway
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(Original post by Hazzabear)
There hasn't been a lot of support for myself at the moment. I do feel like I'm struggling with trying to comprehend the surgery and there's a lot of barriers psychologically and it's quite an isolating feeling. I was meant to be having counselling, however, the waiting lists are massive and private is too expensive. Although, I am seeing my stoma nurse weekly for about forty-five minutes at a time which can help. Every day is different at the moment in terms of how I feel, some mornings you'll love the bag as it gives you more freedom compared to beforehand, but then other days you literally want to rip the bag off because it can get in the way (even with clothing!)
:console: I'm sorry to hear you've been almost entirely left to your own devices. you're more than welcome to message me if you ever need someone to talk to.
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Hazzabear
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(Original post by Pathway)
:console: I'm sorry to hear you've been almost entirely left to your own devices. you're more than welcome to message me if you ever need someone to talk to.
Thank you for the support, means a lot! :hugs:The idea of having the ostomy was quite sudden which made things a bit harder, I was expecting to be waiting for at least six months before getting it.

I was unsure if there were any other ostomates around on TSR so thought I'd make this thread up for that as well
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Pathway
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(Original post by Hazzabear)
Thank you for the support, means a lot! :hugs:The idea of having the ostomy was quite sudden which made things a bit harder, I was expecting to be waiting for at least six months before getting it.

I was unsure if there were any other ostomates around on TSR so thought I'd make this thread up for that as well
I can imagine it must've been quite jarring?

I don't have an ostomy but I do know of people with my main genetic condition that have complications that require an ostomy (or feeding tubes, central lines, etc.). I think it's good to have peer support for difficult things like this!
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Hazzabear
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(Original post by Pathway)
I can imagine it must've been quite jarring?

I don't have an ostomy but I do know of people with my main genetic condition that have complications that require an ostomy (or feeding tubes, central lines, etc.). I think it's good to have peer support for difficult things like this!
Very much so, yes. It took a while for the realization to come down and think that I'm going to be having an ostomy in x amount of time. But on the other hand, I also had to focus on my first GCSE which was three days after finding out the news.

I totally agree with you, peer support can be amazing for both people in the chat.
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Pathway
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(Original post by Hazzabear)
Very much so, yes. It took a while for the realization to come down and think that I'm going to be having an ostomy in x amount of time. But on the other hand, I also had to focus on my first GCSE which was three days after finding out the news.

I totally agree with you, peer support can be amazing for both people in the chat.
How did your GCSEs go? :console: You sound like you are managing well all things considered, I do hope you can have some professional support soon in terms of MH because it is important too!

Yeah, do you have any friends with the same/similar condition at all? Like is there a peer support group elsewhere? What can people without ostomies do to best support you?
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Hazzabear
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(Original post by Pathway)
How did your GCSEs go? :console: You sound like you are managing well all things considered, I do hope you can have some professional support soon in terms of MH because it is important too!

Yeah, do you have any friends with the same/similar condition at all? Like is there a peer support group elsewhere? What can people without ostomies do to best support you?
The GCSEs went okay but it was quite bumpy along the way. I had to go in a wheelchair to collect my results though so it felt a little odd as I was still recovering but nobody could see what else was wrong. I'm hoping to receive a referral to the MH team at some point, fingers crossed!

I don't really have any other friends with the same condition, nor does anybody really understood how one condition can lead to requiring a colostomy in my friend group. There's a facebook group called "colostomy UK" however it's mainly full of older adults with colostomies or ileostomies but nobody to really relate to in that sense. I'm still looking to see whether there is a peer support group or not.

In terms of support, just being there and lending a shoulder so the friend can vent is the best thing to do. (is that the right saying? lol) One thing that can be quite irritating is although they mean well is that they say "oh my cousin has that condition, I know how you exactly feel!" - nobody has the same symptoms and everyone manages their condition differently as you can imagine. But just being there as a friend is good
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Pathway
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(Original post by Hazzabear)
The GCSEs went okay but it was quite bumpy along the way. I had to go in a wheelchair to collect my results though so it felt a little odd as I was still recovering but nobody could see what else was wrong. I'm hoping to receive a referral to the MH team at some point, fingers crossed!

I don't really have any other friends with the same condition, nor does anybody really understood how one condition can lead to requiring a colostomy in my friend group. There's a facebook group called "colostomy UK" however it's mainly full of older adults with colostomies or ileostomies but nobody to really relate to in that sense. I'm still looking to see whether there is a peer support group or not.

In terms of support, just being there and lending a shoulder so the friend can vent is the best thing to do. (is that the right saying? lol) One thing that can be quite irritating is although they mean well is that they say "oh my cousin has that condition, I know how you exactly feel!" - nobody has the same symptoms and everyone manages their condition differently as you can imagine. But just being there as a friend is good
:hugs:

I can't say I know what you're going through (I don't) but I'd always be willing to listen. Just drop me a message whenever. You're not alone. I hope the referral goes through soon for the MH team. :console:
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Hazzabear
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(Original post by Pathway)
:hugs:

I can't say I know what you're going through (I don't) but I'd always be willing to listen. Just drop me a message whenever. You're not alone. I hope the referral goes through soon for the MH team. :console:
Thanks a lot, I appreciate it! And I’ll keep that in mind.

I hope you’re doing well? I’m also here if you need to talk!
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Pathway
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(Original post by Hazzabear)
Thanks a lot, I appreciate it! And I’ll keep that in mind.

I hope you’re doing well? I’m also here if you need to talk!
You're welcome. I'm not great, but there's a lot going on with my physical health and my mental health which is (admittedly) stressing me out. It's hard to juggle everything (emotions, symptoms, seeing my specialists, etc.) and it gets me down. Thank you though, it means a lot!
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Hazzabear
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(Original post by Pathway)
You're welcome. I'm not great, but there's a lot going on with my physical health and my mental health which is (admittedly) stressing me out. It's hard to juggle everything (emotions, symptoms, seeing my specialists, etc.) and it gets me down. Thank you though, it means a lot!
Sorry to hear that things have been difficult. Do you have anyone to support you at home emotionally or physically?

Do you find that the specialists like to throw all the appointments at you once, making it really chaotic and clustered? :hugs:
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