My IBD Life

Please do this for Meranda! #IBDAwareness

My IBD Life

Hi , I am making an awareness video on Youtube for IBD and I need as many people to send me videos of you just saying “I have Cronh’s Disease or I have Ulcerative colitis” and a separate video of you saying “We have IBD”
I need people of all ages and races to send videos to show how diverse the IBD community is !

Let us  push for a May 19th release date because, May 19th is world IBD day so that would be the best time to get it out there,( if possible ),so if we could get all videos sent by May 14th the latest that would be awesome!
You can send them viva email to meranda-roben@live.ca
or you could use SendSpace here https://www.sendspace.com/Image

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Introducing my first IBD/Ostomy Video!

Hi readers!

As requested, I have now produced and uploaded my first IBD/Ostomy video. I have also created a YouTube channel for my videos so if you wish to view my channel or subscribe to it, you can do so here: http://www.youtube.com/user/ostomismnotpessimism.

With it being my first video, obviously there are areas for improvement, but I gave it a good go as my main aim is to just provide help and support/information to others.

I will aim to do at least one video a week on different IBD/Ostomy related topics as well, as covered on my last blog post.

Please feel free to view my video & subscribe, or even leave me a link to your YouTube if you share your own IBD experiences and I will check them out. Also, you can leave comments if you wish at the end of this blog post or on my channel, but please be constructive as this is something I have put a lot of effort and care into in order to hopefully spread Ostomy Awareness and make others feel less alone.

I hope you enjoy watching!

Until next time,

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Exploring concepts of life with an ileostomy.

Hi readers,

For a while now I have wanted to have a go at making some videos covering IBD/ostomy topics. Until now, I haven’t felt ready to but I have asked around on various support groups and have had some good responses and interest shown in me actually doing the videos and talking about my experiences. Obviously, I will be recording them on my phone or with a video camera, so they won’t be of the best quality, but I think what is of most importance is to help people or provide them with information in the right manner, so this is what I aim to do. I have a few issues actually editing the videos as my laptop tends to revolt against me when I want to use sound in Windows Movie Maker, but hopefully so long as the content is okay, I can add a title and captions and voila! It hopefully will be as simple as that! (Although sitting talking about something without messing up isn’t as easy as it may seem! :D)

I actually created a 13 minute video the other day on quite a few elements to do with how I got my ileostomy and tips for ostomy life, but on review and having discussed my ideas with others, I feel it would be best to maybe produce shorter videos covering one topic or a few instead of information overload.

Elements I have had suggested for me to cover include:

  • My Crohn’s Colitis background & how I got my ileostomy
  • What is an ileostomy? (Differences between temporary and permanent as well)
  • Preparation tips pre-surgery
  • Anaesthetic options for the operation
  • What is the operation you had?
  • How long did the surgery take?
  • How did you feel after?
  • Post-surgery tips and words of encouragement
  • How long did recovery take?
  • Did you want to eat straight away after surgery?
  • Forming an eating routine after surgery
  • What foods do you have to avoid?
  • Can you drink alcohol?
  • If I could have given myself one piece of advice back then that I know now having come through it all, what would it be?
  • Does the stoma hurt?
  • How does the stoma stay in place?
  • Do you have to constantly wear an ostomy bag?
  • Do you have control over when your stoma outputs?
  • Are there options for which ostomy bag you can have?
  • What are the types of bags available and what do I use?
  • Can you still wear the clothes you want to or do you have to wear certain things only?

These are just some of the things to cover, so as you can see the list can pretty much be endless. This is why I thought doing shorter videos that tackle certain topics would be better as I know how overwhelming having to take in so much information can be before such a major operation. However, if anybody at all is quite close to having surgery and/or they would like me to answer a number of questions, I will always try my best to do this if you want to drop me an e-mail at: ostomismnotpessimism@outlook.com .

I am aiming to plan and do the first video in the next few days and get it uploaded, so all being well (if technology works on my side!) I will post the link to that in the near future.

Obviously I am not a medical professional, so the views I express and topics in the video will be from my own perspective from the experiences I have had with my ileostomy. It is a good idea if you stay in touch with a medical professional e.g. your stoma nurse, and also consult them before going ahead with new bags for example – what might work for me may not work for you and so on. Everyone is different.

Thank you to those who gave me suggestions and ideas.

Until next time,

sig

 

 

 

I’ve found a bag! (Fingers crossed)

Hi readers,

Hope you all had a good Easter weekend and aren’t feeling too rough this morning after last night’s bank holiday! I am feeling fresh myself so I can’t complain. Hopefully the infection I had last week is finally clearing off too.

So I tried the Coloplast Sensura Convex Light One-Piece for a few days and I got on really well with it. I cut the bags myself to about 24mm to give my stoma a bit of extra room as it tends to swell when it’s active. The adhesive on that particular type of bag itself is the best I’ve ever used in all fairness and even seems to be a little stronger than the flat Coloplast Sensura One-Piece.

imageThis is the last sample of the lot I got (pictured left). You can see from that photo that I haven’t cut that one yet, and you can also quite clearly see the convexity.

Pictured right, at the bottom is the front of the bag. As you can see it has a split cover and is clear not opaque underneath the split cover so you can see the stoma (through the ‘inspection window’).

As far as I’m aware they don’t do the bag in opaque with a split cover, which is the only  drawback I see in my opinion as I’ve always felt more comfortable not being able to see into  the bag. The bag also has belt loops for those who use stoma belts and the baseplate is really strong and comfortable against my skin. The emptying outlet is also really good and easy to empty from and clean after properly.  The only other thing I’ve found to be different when wearing the bag itself is it’s a tiny bit bulkier, which is understandable because of the convex baseplate. I was out for the day on Saturday and the bag material itself I had no problems with against my skin like the previous, so that’s a definite bonus having that comfort. image (1)

I’ve ordered some more of the Coloplast Sensura Convex Light on my next prescription.

Hopefully I will continue to use these. I am also thinking about changing delivery companies so if anyone has any recommendations about which to use, please drop me a comment!

Until next time,

sig

Trying new bags: An update.

Hello again readers 🙂

As I explained in my last post, I’ve been trying out new bags recently to try stop leaks. I tried the Pelican Select Convex and initially got on with these really well besides the few sticking issues round the edges. However, I had a full day out away from home yesterday and found a few issues with them; the material and the emptying outlet. Even at the start of the day shortly after I had put the bag on, I was worrying I had leaks as the material became damp against my skin quite easily and was making my skin sore down near the outlet as it rubbed against my skin. Also, I found it wasn’t that good to empty in my opinion – it was quite fiddly and messy. The way the outlet has two sides and isn’t so much a flap that you can just drop down on top of that made it really hard to clean output from around it properly, especially in the creases at the sides and I found that each time I emptied it output had been seeping out because of this between empties. I had reached the end of my tether with it towards the end of the day and changed it. If the material was softer against my skin (admittedly my skin is quite sensitive) and the outlet was different, then it would be okay, but all in all this bag doesn’t work for me. That’s not to say it won’t work for others though! What works for one person doesn’t work for another so it’s always good to try these things out.

My Coloplast Convex Light Sensura One-Piece samples arrived today. I’ve got on really well with these so far and I’m glad as the Coloplast adhesive has always worked the best for me. I’ve also cut the hole size a bit bigger on the bag (around 24mm) to accommodate my stoma when it moves about more and becomes more swollen when it’s active. These samples have a clear film on underneath the cloth cover though so it’s quite novel being able to see my stoma peeking through when I lift the split cover up as I usually have and will be ordering the opaque version.

Been to the doctors today and got a viral infection he thinks in my throat and altogether, so keeping on top of the ibuprofen and getting rest whenever I can. However, I’m not letting feeling poorly stop my plans for the Easter weekend! Got to keep smiling 🙂

I hope you all have a good Easter Bank Holiday weekend if I don’t post before then & thanks for reading.

Please feel free to follow me if you have a WordPress blog yourself (I would love to follow back & read yours) or subscribe my e-mail which you can do in the sidebar, if you wish 🙂

Thank you in advance.

Until next time,

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Bag leaks… Don’t you just ‘love’ them?

Hi everyone,

I’ve been experiencing increasing bag leaks the last few weeks, which as fellow ostomates will know, can be quite inconvenient. More than anything, I find that they knock my confidence a little and are a messy annoyance.

After my surgery, I was started on the Dansac bags which material wise have been my favourite; the bag covers are nice and soft and look the best in my opinion. The adhesive didn’t work for me though, mainly at night. This was because I tend to get quite a lot of wind at night causing the bag to balloon and subsequently with the Dansac bags come away from my skin. Since then, I have been mainly using the Coloplast Sensura One-Piece Drainable bags; I find that these are the best for adhering to the skin, especially when experiencing ballooning on a night. I have given a few others a try but haven’t found them to be suitable for me due to the decreased adherence to my skin compared to the Coloplast, such as the Salts Aloe Vera range, although I loved the bag itself.

The last few weeks I have been getting leaks which up until now I have not really had that many of, so I have been lucky in that sense. One of them was driving back from a gig and hotel stay in Manchester with my Mum when we were literally passing the sign that told us that the next services were not for 20 miles! My initial reaction to that was panic, but I quickly told myself that I’d just have to make the best I could of the situation, especially as I was driving and pray that Stacey didn’t do much else until we reached there. Still, it’s not over pleasant feeling your output seeping its way out under the bag and onto the skin, waistband and leggings! Then other leaks have been when I’ve been out and about or at home in the daytime. I had one when I was out shopping with my Mum the other day and changed my bag and sorted the mess in my Mum’s car in the car park; all in all it was about a minute bag change, which considering the mess and annoyance I can’t really complain at.

I always carry a little kit around in my handbag for such events and I have done since right after my surgery. I prefer to be prepared for the eventuality and carry something around rather than risk it. In this kit I have:

  • Dry wipes (4/5)
  • Skin barrier wipes (4/5)
  • 4/5 bags (I’ve had a few occasions where I’ve had a few leaks one after the other)
  • Wet wipes (You’re not really meant to use these on the skin near the stoma as a regular thing, but in the case of leaks it’s sometimes a case of whatever you can grab to make the job easier, so long as it isn’t considerably harmful)
  • A few disposable bags
  • A spare pair of knickers (having output seep down your knickers really isn’t pleasant to put up with all day!)

I carry my kit in a little make up bag, although a lot of ostomy companies provide kits as part of their delivery service for taking out and about.

Just like with having Crohn’s before my surgery, having accidents or bag leaks either way is never convenient or pleasant but I’ve found that if I try to stay as calm as possible and just tell myself that accidents do happen and I will be able to sort it that I’m not as panicky. Even people without bowel problems have accidents from time to time, and it’s just something we all have to deal with when the eventuality arises. Even 2 and a half years after surgery, I still find I do get a little upset by it, especially because it reminds me of Crohn’s experiences before surgery, but now I am thankful that I am actually able to have a life and go places which wasn’t possible for many years before surgery.

I have recently tried the Pelican Select Convex One-Piece drainable bags, which I have found a lot better for the daytime. I still wear the Coloplast Sensura of a night because of the strong adhesive and find my leaks usually occur in the daytime away from home. The Convex design means that instead of the baseplate being flat, it is curved and in a sense pushes the skin around the stoma properly down and the stoma more outwards to ensure that output goes down into the bag properly. I also find that I’m more confident now about wearing my tighter clothes and leggings etc, as I always have worn since surgery, and am less worried that a leak is going to occur. This is because I feel that the Convex bag gives me that little bit more room and leeway to ensure that output actually goes into the bag and not underneath the baseplate. I sometimes get a lot of output build up behind my stoma and it suddenly all rush out at once, as I get muscle spasms behind it that can stop output coming through as well so its vital for me that the output has the best chance of getting down into the bag as possible. I love the fact that the skin protector around the bag also has a foam backing for that added bit of comfort and security. The only thing I have found that bothers me a tiny bit about the bag is that there are two places at either side at the top that don’t stick down to my skin properly just around the outside of the adhesive, but this isn’t a huge problem to me as I wear a waistband over it anyway usually and it’s only a tiny bit of the outer adhesive. I find that my skin appeared sore the first day I tried the Pelican bags but it has been okay since and I put that down to the skin having a change in bag adhesive to get used to.

I also have the Coloplast Convex Light Sensura samples on order so I shall be giving those a try.

Until next time,

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Choosing what to wear with an ostomy.

Hi everyone!

Personally, I love fashion & clothes and always have done even before my surgery.

Before I had my surgery, I was always worried that it would restrict what I wear but I have not really had to change anything to accommodate having a stoma. I’ve found that the only thing I have had to change is to not wear really tight fitting things like skintight bodycon dresses as it doesn’t leave my stoma enough room to work and increases the chances of leaks greatly. I find that I can still wear close fitting things though, and wear a stoma waistband or a stoma vest underneath tighter fitting garments to help minimise my bag being recognisable through the garment.

Some clothing tips I find work for me having an ostomy are:

  • Wearing ‘stomawear’ such as a stoma waistband or a stoma vest. I wear the Comfizz waistband most days as a lot of the things I wear are quite close fit, such as skinny jeans/jeggings and tighter tops. (Just type ‘Comfizz’ into google for these). Vanilla Blush also do great stoma underwear (I love the pretty high-waisted knickers!). Also, a lot of ostomates in the UK should be able to claim a certain number of ‘stomawear’ garments free a year on prescription (please check the websites of the stomawear companies for more details).
  • Choosing tops with heavier patterns to wear give me a bit more confidence that attention won’t be drawn towards any outlines of my bag, especially if they are tighter fit tops. Floral designs and striped designs are my personal favourites! (See below).
  • If I wear a tighter, plain vest and want a bit more confidence, choosing a patterned or lighter colour shirt to wear loosely over the top to add to the outfit and keep attention away from the stomach area (as seen below).

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  • Picking leggings that aren’t too tight but are a snug fit (usually higher waisted) mean that sometimes I feel I’m confident enough to not wear a waistband underneath them too, unless the top of my leggings are on show (e.g. if wearing a crop top with high-waisted leggings). (See below).
  • Wearing high-waisted garments such as shorts or skater skirts; personally I love both of these and skater skirts are a favourite of mine. (See below).

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  • Choosing Peplum designs! I have a few pretty peplum tops which I wear with a waistband underneath. I find that the waistband stops the bag at the top becoming visible if it protrudes a little under the top. (Pictured above, second on the left).
  • Floaty tops/dresses that are more gathered just under the bust; this way you still get a bit of the top that hugs your figure but the floaty bottom gives you a bit more leeway if, for example, you have an ostomy bag with high output. (See below).
  • Also, baseball design t-shirts as they are baggy and comfortable. (See below).

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Those are just a few ideas that I find work best for me.

If I go on nights out or occasions, I can take Loperamide (Immodium) capsules to slow the rate of my output rate down also, which helps to keep my ostomy bag more minimal and flat under my outfit, with a stoma waistband, especially if I have tighter fit dresses on such as these below:

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Most importantly, having an ostomy does not stop me wearing the things I love and having my own style. For most things I have found there is always a way to wear the things that I like without having to worry about my bag being noticeable through my clothes and the centre of attention. Those close to me always reassure me if I ever overthink things that from the outside you cannot tell I have a bag and that when they think of me, they don’t think of ‘Amy with a bag’, they just think of me as Amy, my own person in my own right. My Mum has been fab when my bag has been noticeable or got tucked under my waistband wrong and been a bit lumpy and has always told me to avoid me feeling uncomfortable or embarrassed at a later time. I find that this is great as that support makes me feel more comfortable as well.

Finally, I run an ‘Osto-MY Fashion’ Facebook group with three other lovely lady ostomates as well if any ladies would like to join. Due to the nature of the photos and concerns spread on the group (underwear garments etc) the group at the moment is restricted to females only, however, we have all agreed that if there becomes a bigger demand for a unisex group for example, we will do our best to arrange this. The link is: https://www.facebook.com/groups/442535202429992/

Hope you enjoyed reading this post & if you want me to do any similar posts or you have any topics you’d like to see me cover about living with an ostomy, please do not hesitate to comment on this or e-mail me at: ostomismnotpessimism@outlook.com. Also, if you would like a one-to-one chat or have any ostomy-related questions to ask or questions about living with IBD, please either comment or e-mail.

Until next time,

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