Hazel's attempt at a health blog! Watch

Hazelly
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Hi, I'm Hazel as you know from the title, and I'm going to attempt a health blog to keep on track with all the chaotic things in my life. Hopefully, this goes well and welcome aboard to my first ever blog!






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About me:

I am currently in year 12 student studying a BTEC, and ironically interested in healthcare! I am volunteering in a hospital to gain further insight into various services throughout medicine.

My parent used to be in the RAF so I’ve moved around a lot, I have been to the Shetlands and if you've ever been there its basically four seasons in one day! Sadly I do not remember this but I have also lived in Fife and the scenery was amazing there. Some of the camps that I have been too were actually on the base which was slightly different and hard to get used too, it meant that school buses were regularly checked and generic security checks to get onto base.

Lastly but not least, my favourite food is mac and cheese with garlic bread on the side! I love making sweet and savoury dishes and I'll upload them below! I'm looking at making Christmas foods :candycane:, so far my plan is to make: chocolate log rolls, profiteroles, mince pies, and savoury pies. Any more suggestions?!

My interests:

I used to be a competitive swimmer for a few years before my health got a little complicated – we will get there, I promise! In 2018 I swam 100 lengths in 58 minutes for cancer research and Marie curie through ‘Swimathon’. A lot of training was needed to do this, and I was only able to swim approximately 80 lengths during training, so it was nerve-wracking, to say the least. However, I made a lot of money to support both these charities and it was great!

Last year I started to kayak around the Cornish coasts which were lovely, but, I did get freaked out a few times! I have never been the best at balancing and sitting up on a kayak was a nightmare. Every time I would always capsize the boat, much to my parent’s disgust as they were on the back of it. The best kayaking spot was around Looe beach there was so much wildlife it made every trip amazing. I’ll see if I can get some pictures uploaded of the views

I am also interested in reading but looking for new genres. If you have any suggestions, please drop them down below! I’m the worst at getting into a book so recommendations are great. Books that I have read so far include: This is going to hurt, Twilight, Harry Potter, The Fault In Our Stars, and The Great Gatsby.

Another interest is Disney, I love Lilo and Stitch and the Lion King! Aand I think I'm a tad Disney crazy by looking at the spoiler
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My health:

I have a rare condition that affects 1 in 40,000. Known as VACTERL Association, the issues with it being known as an association is that there is hardly any clinical information about it, regarding the genetics of each abnormality. It affects mostly my spine and digestive/gastrointestinal area. For me, VACTERL stands for ->

Vertebral abnormalities: my sacrum is curved to 45 degrees. I’m waiting on seeing my neurologist in January as the numbness/pains are getting worse. When I last saw them two years ago after an MRI scan, things were OK, but I’m having a lot more symptoms and I’m unable to stand up for long periods of time (i.e. after five minutes my legs become numb, so it's not that long in the grand scheme). I’ll try to track this below!

Anorectal malformation: my bowels do not like to be bowels. I’ve ended up with a permeant colostomy which was placed in July 2019. I am still trying to adapt to the new edition of my stomach. I am also waiting for mental health support as the surgery impacted my mental health a lot. Having anorectal malformation is probably the worst condition for me, I hardly have any independence due to the constant worry of something happening to my bag, and before the colostomy placement I was incontinent, therefore, I restricted myself on activities on a daily basis and still do now!

Esophagus issues: this is a new issue presently. I am going to be having an endoscopy next year; hopefully, soon-ish! I have a lot of swallowing issues and periods of where I choke on my food so we’re getting this investigated at last – I was too stubborn to mention it to my specialist.

Renal abnormalities: I have crossed fused kidneys! (Crossed renal ectopia) Both my kidneys sit on my left side and they are in a S shape; most fused kidneys sit in a horseshoe position so they like to be awkward and show off. The issues with my kidneys is that they both don’t work fully, I require an ultrasound scan every six months, although at the moment they are every three months to monitor the function of them.

Interesting facts about me!

I have been to Disney three times, and the last time I went was in 2016 - Disney just before Christmas arrives is amazing!

I used to do cheerleading during the first two years of secondary school and my team competed in the WCA summer competition for the southwest region. Admittedly, I am glad that i finished cheerleading as I am the clumsiest person ever .

So yeah, that’s a little bit about me and thanks for reading, huge thanks to Glaz who has helped a ton along the way of creating the blog :cheers:. I look forward to continuing my first ever blog and welcome!

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Glaz
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PRSOM :cube:
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Glaz :woo:
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woah i didn't know you had to deal with so much :eek:
posting to subscribe :lovehug:
this is going to hurt is so good :awesome:
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woah i didn't know you had to deal with so much :eek:
posting to subscribe :lovehug:
this is going to hurt is so good :awesome:
Hiya!

Thanks for subscribing, I will add you to the tag list!
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:candycane:23/12/19 - Christmas week! :candycane:

Hi everyone, welcome back to Hazels attempt at a health blog! It’s been five days since I uploaded the blog and I cannot wait to give an update on all the latest things – especially the allergy testing on Friday which was nerve wracking for me.

Thursday – 19/12/19

Today I saw my stoma nurse! Every week I see her, I’ve been trying to do a whole colostomy bag change when I’m with her. For me there’s a lot of psychological barriers of touching the stoma, because it’s kind of gross (right?). Anyway, the appointment usually goes on for about an hour as we go through the different leaks I’ve had in the week and so on. Annoyingly I experienced a leak whilst at college, it was a big kick in the teeth for me as it knocks my confidence a hell of a lot. I wish that the bag could essentially ‘behave’, if that’s even possible – I wish! My colostomy can fill up so quickly, I mean in less than five minutes I could be changing my bag for the second time which causes a lot of skin irritation and general discomfort for me. I have support at my college, so generally I phone for help when I need assistance with the bag change and somebody will deal with the gross side of it for me, which is super helpful to say the least. The support I receive at college is great thankfully.

Anyway, I got distracted with the worlds most annoying bag. Back to talking about the stoma appointment At the appointment I finally TOUCHED the stoma AND fully cleaned it! (disclaimer: with a ton of gauzes behind my gloved fingers though, shush) It’s a big move for me as I’ve never been able to do this beforehand so I’m super elated with myself, I just wish I could do this every day. It seems such a simple task for some especially as its “just a stoma”, however, I’ve had my stoma for approximately six months, and this is a new achievement I suppose? Its time to celebrate! :banana2:

After the appointment I went to pizza hut with a few friends during my college break – which is meant to be a study period, woops! I was quite stupid with what I ate; I decided to eat most of the salad options. Although, I am now experiencing the hardships of having a messed-up GI tract and suffering with a bowel blockage and on a ton of medications to try get it sorted to minimise a hospital trip! (fingers crossed) I am meant to be careful with fruits and vegetables with skins on them as my body cannot digest them like somebody else could, my GI tract is way too sensitive as well. This means that if I eat ‘too much’ of one thing my GI goes into an overload motion. Its an odd one. I did have to awkwardly peel of the cucumber skin whilst everyone was walking past as it’s a big no no for me, or anyone with an ostomy (it can differ from person to person though 😊 )

Friday – 20/12/19 One big stressful day for 1.

I had my allergy testing’s done and god it was hectic! I have severe allergies to cats and dogs, as well as having an autoimmune disorder! This means that I could have a spontaneous anaphylaxis episode at any time for NO reason. It’s because of my immune system being too hyperactive and releasing too many mast cells and histamines when it thinks I’m having a severe allergic reaction (I’m still trying to understand it myself!) Hopefully once my letter comes through from the immunologist it will make more sense to me, I do regret not asking more questions at the appointment. God dammit. I must carry around epi pens 24/7 and antihistamines to take daily. Its quite scary from my perspective as it could suddenly happen and catch me off guard, there’s also a few triggers that I need to be aware of, these include: heat, stress, alcohol and misuse of drugs as you would expect. But I can still have a flareup spontaneously with no actual trigger.

Saturday & Sunday – 21-22/12/19

Surprisingly nothing much happened over the weekend! I slept a lot as I’ve been exhausted, and fatigue likes to catch up on you when you least expect it! I went to a garden centre on Sunday to try get into the festive feeling, however, we had to cut that short as I ended up having a allergic reaction, which is quite frustrating again. Thankfully, I was able to get it under control by taking a hefty amount of histamines and steroid inhalers which I rely on a lot during these sorts of reactions. After the reaction I was pretty much zonked for the rest of the day, I’m feeling more human like today luckily!

Other interesting news for the week

It’s finally Christmas eve eve! Does anyone else call this day that? Or just me oops. I’m looking forward to Christmas and hoping the blockage will ease before Christmas day, fingers crossed.
I’m off to watch Star Wars tomorrow so its an early set off in the morning to head off to try get a good seat haha. First task is to make sure I wake up early enough, good luck to me.

Attempted goals for the week

To purchase a Medi-Alert bracelet before I start college and volunteering at the hospital – this is a must-buy!

Secondly, I’m going to attempt another bag change on my own or with very little assistance from my carer. I’m hoping I can start getting into the swing of dealing with an ostomy, I need some more independence!

Last but not least as it’s a little different, I’m going to try to create a revision timetable as I have my BTEC exams in January! I have done a lot of studies around both my units already, but its mainly consolidation at this stage.

That’s all for today, thanks again to everyone subscribing and following along with my blog!

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Pathway
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:candycane:23/12/19 - Christmas week! :candycane:

Hi everyone, welcome back to Hazels attempt at a health blog! It’s been five days since I uploaded the blog and I cannot wait to give an update on all the latest things – especially the allergy testing on Friday which was nerve wracking for me.

Thursday – 19/12/19

Today I saw my stoma nurse! Every week I see her, I’ve been trying to do a whole colostomy bag change when I’m with her. For me there’s a lot of psychological barriers of touching the stoma, because it’s kind of gross (right?). Anyway, the appointment usually goes on for about an hour as we go through the different leaks I’ve had in the week and so on. Annoyingly I experienced a leak whilst at college, it was a big kick in the teeth for me as it knocks my confidence a hell of a lot. I wish that the bag could essentially ‘behave’, if that’s even possible – I wish! My colostomy can fill up so quickly, I mean in less than five minutes I could be changing my bag for the second time which causes a lot of skin irritation and general discomfort for me. I have support at my college, so generally I phone for help when I need assistance with the bag change and somebody will deal with the gross side of it for me, which is super helpful to say the least. The support I receive at college is great thankfully.

Anyway, I got distracted with the worlds most annoying bag. Back to talking about the stoma appointment At the appointment I finally TOUCHED the stoma AND fully cleaned it! (disclaimer: with a ton of gauzes behind my gloved fingers though, shush) It’s a big move for me as I’ve never been able to do this beforehand so I’m super elated with myself, I just wish I could do this every day. It seems such a simple task for some especially as its “just a stoma”, however, I’ve had my stoma for approximately six months, and this is a new achievement I suppose? Its time to celebrate! :banana2:

After the appointment I went to pizza hut with a few friends during my college break – which is meant to be a study period, woops! I was quite stupid with what I ate; I decided to eat most of the salad options. Although, I am now experiencing the hardships of having a messed-up GI tract and suffering with a bowel blockage and on a ton of medications to try get it sorted to minimise a hospital trip! (fingers crossed) I am meant to be careful with fruits and vegetables with skins on them as my body cannot digest them like somebody else could, my GI tract is way too sensitive as well. This means that if I eat ‘too much’ of one thing my GI goes into an overload motion. Its an odd one. I did have to awkwardly peel of the cucumber skin whilst everyone was walking past as it’s a big no no for me, or anyone with an ostomy (it can differ from person to person though 😊 )

Friday – 20/12/19 One big stressful day for 1.

I had my allergy testing’s done and god it was hectic! I have severe allergies to cats and dogs, as well as having an autoimmune disorder! This means that I could have a spontaneous anaphylaxis episode at any time for NO reason. It’s because of my immune system being too hyperactive and releasing too many mast cells and histamines when it thinks I’m having a severe allergic reaction (I’m still trying to understand it myself!) Hopefully once my letter comes through from the immunologist it will make more sense to me, I do regret not asking more questions at the appointment. God dammit. I must carry around epi pens 24/7 and antihistamines to take daily. Its quite scary from my perspective as it could suddenly happen and catch me off guard, there’s also a few triggers that I need to be aware of, these include: heat, stress, alcohol and misuse of drugs as you would expect. But I can still have a flareup spontaneously with no actual trigger.

Saturday & Sunday – 21-22/12/19

Surprisingly nothing much happened over the weekend! I slept a lot as I’ve been exhausted, and fatigue likes to catch up on you when you least expect it! I went to a garden centre on Sunday to try get into the festive feeling, however, we had to cut that short as I ended up having a allergic reaction, which is quite frustrating again. Thankfully, I was able to get it under control by taking a hefty amount of histamines and steroid inhalers which I rely on a lot during these sorts of reactions. After the reaction I was pretty much zonked for the rest of the day, I’m feeling more human like today luckily!

Other interesting news for the week

It’s finally Christmas eve eve! Does anyone else call this day that? Or just me oops. I’m looking forward to Christmas and hoping the blockage will ease before Christmas day, fingers crossed.
I’m off to watch Star Wars tomorrow so its an early set off in the morning to head off to try get a good seat haha. First task is to make sure I wake up early enough, good luck to me.

Attempted goals for the week

To purchase a Medi-Alert bracelet before I start college and volunteering at the hospital – this is a must-buy!

Secondly, I’m going to attempt another bag change on my own or with very little assistance from my carer. I’m hoping I can start getting into the swing of dealing with an ostomy, I need some more independence!

Last but not least as it’s a little different, I’m going to try to create a revision timetable as I have my BTEC exams in January! I have done a lot of studies around both my units already, but its mainly consolidation at this stage.

That’s all for today, thanks again to everyone subscribing and following along with my blog!

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:jumphug:

Well done for starting this blog!

And a HUGE congratulations with touching your stoma!! That's a huge step. :yep:

Also...how odd, re: mast cells! Will you be having your care transferred to St. Thomas'? That's where I go for my mast cell activation syndrome. If you have questions, btw, feel free to ask.

Hope youre doing okay.
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:jumphug:

Well done for starting this blog!

And a HUGE congratulations with touching your stoma!! That's a huge step. :yep:

Also...how odd, re: mast cells! Will you be having your care transferred to St. Thomas'? That's where I go for my mast cell activation syndrome. If you have questions, btw, feel free to ask.

Hope youre doing okay.
Thank you so much!!:hugs:

There were no talks of a transferal, it's all a bit of a blur at the moment and quite confusing!
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Thank you so much!!:hugs:

There were no talks of a transferal, it's all a bit of a blur at the moment and quite confusing!
I don't doubt that. Haha. It might be worth asking about perhaps, they treat all mast cell disorders, afaik! It's under the specialist urticaria clinic, and from my experience they're great, especially when I've been needing help with things outside of appointments.

Will reply to your PM asap, btw.
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I don't doubt that. Haha. It might be worth asking about perhaps, they treat all mast cell disorders, afaik! It's under the specialist urticaria clinic, and from my experience they're great, especially when I've been needing help with things outside of appointments.

Will reply to your PM asap, btw.
No rush with replying back, it’s okay

I’ve just re read my blog update and realised I forgot to mention about the diagnosis part as well as this! They diagnosed me with “Chronic spontaneous urticaria and Angioedema”, this can then trigger an anaphylaxis due to the mast cells over reacting(I’m probably wording this completely wrong). I’ve mainly been given new medications, and different leaflets to essentially look through as well as my action plan for anaphylaxis, it’s quite scary.

Is this referred to as part of MCAS? (You’re welcome to answer in PM if preferred)
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glad to hear your college are really supportive :hugs:
so many allergies!! not surprised you're tired
enjoy star wars tomorrow :awesome:
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Star Wars is great, in depth discussion coming up when you've seen it

Now that you've updated I can finally log out

See you in a couple weeks Haze :hugs:
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(Original post by Hazelly)
It’s finally Christmas eve eve! Does anyone else call this day that? Or just me oops. I’m looking forward to Christmas and hoping the blockage will ease before Christmas day, fingers crossed.
I’m off to watch Star Wars tomorrow so its an early set off in the morning to head off to try get a good seat haha. First task is to make sure I wake up early enough, good luck to me.
i call it Christmas Eve eve also, the real question is, who doesn’t? 😂
honestly i’m just too excited for christmas 🎄🎄
hope you enjoy star wars & have a great Christmas! 🥰
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glad to hear your college are really supportive :hugs:
so many allergies!! not surprised you're tired
enjoy star wars tomorrow :awesome:
It's like a full-time job at times ironically, especially when everything medically clumps together to make it even more chaotic :rolleyes:

Will do! Have you seen Star Wars yet? Or are you planning on not seeing it?
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It's like a full-time job at times ironically, especially when everything medically clumps together to make it even more chaotic :rolleyes:

Will do! Have you seen Star Wars yet? Or are you planning on not seeing it?
am planning on seeing it, not sure when yet though :yep:
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:woo:
Star Wars is great, in depth discussion coming up when you've seen it

Now that you've updated I can finally log out

See you in a couple weeks Haze :hugs:
Looking forward to the discussion, although, you may be more knowledge on Star Wars in comparison to me

Cyaa later! :cry:
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i call it Christmas Eve eve also, the real question is, who doesn’t? 😂
honestly i’m just too excited for christmas 🎄🎄
hope you enjoy star wars & have a great Christmas! 🥰
That's very true!

I'm looking forward to Christmas. It should be good this year, nice and quiet for a change
Thank you, hope you have a good Christmas too :holly:
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Happy new to everyone!


What another hectic year, I am happy to say that its finally over. However, a lot has changed! In 2019, I took my GCSEs whilst everything medically was going on in the background, I also had a colostomy which was life-changing and I’m still learning to adapt to it.. it’s taking time. I also had orthodontic braces fitted on the 14th of January in 2019 and will be wearing them for another two years!

Now it’s 2020, I’m feeling paranoid psychologically. I don’t know what this year is going to bring and it's scary when I'm constantly back and forth from the hospital. I already have an endoscopy booked for this year at some point – it’s a waiting game. I also have my BTEC exams this month so I’m extremely busy with studying. On a positive note, I’m also starting volunteering at the hospital again. Unfortunately, it had to be postponed as there was a ton of issues with needing a risk assessment and a care plan. It's hopefully sorted which I’m thankful for. Anyway, time for the weekly update!

Christmas period

The blockage that I had mentioned last week is finally ‘fixed’, so I narrowly escaped the idea of a hospital admission . But, Christmas day was tiresome, I was struggling to maintain hydration levels since the blockage had resolved itself through medications. My parent was continually dealing with my colostomy/stoma because I’m still not at the stage of fully dealing with it. I'm getting better at doing the changes myself. I do feel like a burden, as there were times during the day where we were dealing with the leaks for over an hour nonstop and my parent had to be there to support and help. It’s a difficult one. Thankfully I should be starting some new medications at some point to see if I can manage my ‘output’ in a more of an effective way.
Surprisingly, I was able to keep down Christmas dinner and it was pretty good – just a reduced amount of the Brussel sprouts compared to other years before having the colostomy. Disregarding my medical issues, Christmas was quite calm this year, rather than having lots of families around; which is quite overwhelming!

As a family, we were meant to be going to my aunties house on boxing day. Since having the allergy testings, I’m certainly allergic to cats aaand they have cats. I was paranoid about going there as I'm finding it difficult to change my colostomy bag and deal with everything else in someone else's house. It just doesn’t feel right and can be quite awkward; especially as they don’t truly understand. The rest of the festive period was fairly calm and relaxing, until New Year’s Eve.


New Year’s Eve – 31.12.19 -Goodbye 2019!
Today I had my ultrasound scan! To give a rundown of what has been going on, after every abdominal surgery I have this odd complication of gaining this build-up of fluid in the abdominal area which is surrounding my bladder and kidneys. It is ascites but the causes are not the causes – if that even makes sense to anyone? The symptoms range from me needing to pee five minutes after going, spasm and pressure pains, swelling and a ton of discomfort. This led to me having a drain inserted near my stoma bag three times in the last two years. Two of these procedures were done in the OR awake which was quite scary and daunting. When I had the first drain, I also had a biopsy, I was thankfully asleep as they decided on doing a biopsy as they originally did not know what was causing this and set out a whole board of testing’s including MRI scans to different procedures. Nor do they exactly know why I'm unable to absorb this fluid.

Anyway, the results came back showing the fluid has come back but not enough to be drained! However, my radiologist has noticed that my bladder was distended in size and after peeing I still had 240mls left, whereas it should have been less than 20mls. It was a bit of a shock even though I have already been diagnosed with a neuropathic/genic bladder and crossed fused renal ectopia. They mentioned that the treatment can be challenging in terms of whether medication is needed or if I will need to begin self-catheterising– which I’m honestly terrified about. Has anyone had to self cath before? Is it an “okay” procedure to do? I’m currently in a limbo state as I desperately need to see a urologist, but I will be transferred to adult care in the next year or so. Although, one of my hospitals/teams want me to transfer already! Compared to my tertiary team who aren’t ready for the transfer; nor am I ready. My paediatrician should hopefully refer me to a urologist to get these issues sorted. I hope! :rofl3:




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The rest of New Year's Eve went well, had a lovely hot chocolate and another evening in as an attempt to distract. Did anybody else have a relaxing night? Or was yours full of chaos and going out? :banana2:

Happy new year! It’s 2020 at last.

Heck, it sounds odd to say 2020, am I the only one? For the next five days, not much else happened apart from continual studies and getting back into the mood for college, if that’s possible as college isn’t the greatest. Hey ho.

Finally, some good news! At the beginning of January, I went shopping with a few friends! This is the first time I have done this since having my colostomy surgery. I couldn’t get the train as it’s an hour-long and most people are made to stand for the journey, this would well and truly knacker my back. Another thing was that I still need help with bag changes and I mostly rely on my parents to help me. Therefore, I got dropped in town and had a great time. Until my stoma also known as “homer” decided to be super active and create a bloody leak. Once finding this out I was basically homer Simpson shouting D’oh! (in case you’ve never seen the Simpsons, which is very shocking :lol: : https://www.youtube.com/watch?v=6hyOLydRFfU)

Here comes a mini-rant; I was waiting in the disabled toilet after phoning for my parent. I had people kicking and banging on the door even though when they first knocked, I had said someone is in here please wait as I'm a tad busy. I understand there are urgencies, but I was having one as well! I may have been in there for around thirty-five minutes, but nobody can help that?

It does knock my confidence when people are constantly banging on the doors to get in. There was no way I could have been able to walk out in a few minutes, after every leak I need to put creams on etc as my skin is way too sensitive. But with the continual use of these creams, it should get better in time

3/1/2020- Hospital appointment!
I received my medical alert bracelet today! It took me quite a while to find one as there’s so many to look at and a lot of them involve subscribing which is a tad pricey. Thank you to Pathway & black tea who helped to advise on what to buy :hugs:.I’ve got one just in time for college and my placement to start and all the information is hidden at the back as I also included my colostomy for a side note kind of thing (supposedly needed).
In the afternoon, I had an appointment with my stoma nurse, it went well, we’ve decided on trying out some other bags to try reduce the number of leaks I’m having. The issues are that my skin does not like to try out other bags, I have had so many reactions to different adhesives, so god knows what we’re actually going to do over the fact that I’m always leaking!


Positives from this blog:
I bought my medical alert bracelet at last so I can continue my placement at the hospital.

I have finally been able to unlock my iPad, as I had stupidly forgotten my password, somehow?! But it’s all sorted and panic over, phew.

Lastly, I had my braces changed in the week and been able to change the coloured bands as I may have had a Christmassy colour . We also purchased some lidocaine gel to help soothe my irritated gums as my teeth are moving quickly, it's helped a lot.

Sadly this is the end of the blog! Thanks for reading and I hope you all have a good week. I will be updating this as a week behind because I’m terrible at keeping up with these sorts of things. I’m certainly going to update this blog though 😊



Have a good weekend everyone :grin:

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you've been busy!! i'd hate it if someone was banging on the toilet door too, would make me so panicky and self conscious :sadnod:
glad to hear you finally got a medical bracelet:woo:
does the bag leak a lot?
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Hazelly
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#20
Report Thread starter 1 month ago
#20
(Original post by entertainmyfaith)
you've been busy!! i'd hate it if someone was banging on the toilet door too, would make me so panicky and self conscious :sadnod:
glad to hear you finally got a medical bracelet:woo:
does the bag leak a lot?
So busy! Next week is going to be even worse! How has your week been?

It’s so frustrating as you’d expect that someone else with a disability or medical condition would understand that somebody needs to use this facility? I have so many leaks with my bags and we have no idea why. Some leaks happen and I have no clue until it’s picked up on by somebody else, usually parents, but it does lower my confidence levels quite a bit.
Last edited by Hazelly; 1 month ago
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