Chronic Illness Blogs, Life With A Stoma, Mental Health Blogs, Personal Blogs

A Letter To My Son

Once you have a son, life is never the same and you find it hard to imagine what your life was like before he made his appearance into this world.  It is the most wonderful feeling to be a mum! I wanted to write a letter to my son so when he is older, he can read this. Many other mums may also be able to relate to my pregnancy and fertility journey!

I carried you through the hardest months I’ve had in my life so far. Pregnancy was hard and with chronic illness, a stoma, PGP, and mental illness added into the mix, it was quite the mocktail without the cherry on top! As you began to grow in my tummy, I felt butterflies rumbling as you moved in your sleep, when I played music, and when I lay in the bath (I knew from that first wriggle in the bath and every time I was in there, that you were going to be a water baby!) If I hadn’t of announced I was pregnant with you, everyone would have been none the wiser, due to having such a small bump, which didn’t appear until you were around 26 weeks old and boy, didn’t I know about it when I did! I felt every kick and hiccup which was super painful but rewarding at the same most precious time. Your favourite place to kick was under my ribs and my bum! It’s a sensation I can never really explain to anyone when they have asked how it feels, all I can say is it’s super sore and weird but also funny at the same time.

I remember the very first outfit I ever got you, it was just after my gender scan and I had found out we were having a little boy. Now the gender scan did not go to plan at all! When I think back, I laugh! I had taken a Chinese gender scan online and, with the symptoms I had whilst pregnant with you, it appeared to me, that I was having a girl! When the person doing my scan said I was having a boy, I was so emotional and I cried. Half of those tears were due to hormones and the other half was down to being so annoyed at myself for thinking you were a girl and also due to grief. You see, before I was pregnant with you, I had a previous pregnancy but she had to leave too soon with the doctors help as I was too poorly. It would have been her 3rd birthday this year and she is never forgotten even though she was so little ( I say she because [some may not believe in this] I saw a pshyic medium who seen her with your great, great granny). Now, your outfit was this gorgeous blue and white winnie the pooh shorts romper, you’ll see this picture below.

SO cute!! At just 5 months, you have the greatest lanky legs like a dandy long legs! Which you love to kick around and swing left, right and centre whilst wriggling and rolling in mid nappy/clothes changes, cheeky! You might notice when you’re older, a little cut on your hair line. This is because I had to have my tummy cut open to give birth to you, ouch! I’ve had lots of many different surgeries and by the time we read this and you’re old enough to understand, I know I will have had lots more! Never worry, I’m always looked after by very nice doctors and nurses and I had many surgeries before I had you so I’ve learnt a thing or two on how to be a tough cookie! Same as for your daddy, which is how we met, and is a story for another time.

Being your mummy is hard some days because when I am sore, I become very tired and some things that wouldn’t really bother me most days, bothers me and I get grumpy. Like not being able to take you out for walks in your pram or having the house clean and tidy. Every time you laugh on those hard days or when you smile or say “dada” it helps me feel better and it makes them so worth it! When I see you splashing in the bath and having so much fun soaking my face, all I can do is laugh. When I hurt and feel pain, your cuddles are the best medicine I could ever need. You are six months old and growing so quickly, slow down! I haven’t had enough of my little baby just yet, and maybe you will always be my baby boy. When you are old enough to understand, I can explain in more detail just how much of a special little rainbow baby you are.

A little miracle. A blessing. Pure joy.

Your big brother Biggie knew when I was pregnant with you before we had announced it to all our family and friends, and has loved you from the minute he knew. He loved to lay his head on my belly and listen to you inside! When I brought you home, he slept by you in your moses basket and bouncer chair and still now, loves to be by your side. You have just started to see him as a dog with fur and his big flappy ears! You explore his face and body with your tiny little hands and fingers, feeling his soft smooth and jabby fur as he naps next to you before you too drift off into a nap. You are trying to say “dog” too! What a clever little man you are. As you grow older, Biggie will too, and he will always be your bestest friend and remember that Biggie is part of the family, more than just a dog!

Sometimes, I may need to be away from home when I don’t feel well but always know, I’ll be coming back home to you and when I do, I will always be ready for your kisses and cuddles. When I am away, I go to a place called the hospital where I get looked after and helped to feel better so you mustn’t worry. Daddy and Biggie will be there with big cuddles and Biggie more than likely will make you laugh with his loud and stinky farts!! Sometimes daddy may need to go to hospital to feel better, too,but he is much more braver than I and we never need to worry. You will also become aware that both Daddy and I poop and fart differently with our pink squishy buttons on our tummies! My squishy is called Lola and she saved my life and she can be very funny! You will learn all about her from your Buttony Bear book i read to you through the years and your buttony bear!

Know this icke baby, that whatever we go through in life, know we have eachother. We got this. Strength grows with love and our family is full!

Awareness, Chronic Illness Blogs, Life With A Stoma, Mental Health Blogs, People's Stories!, Pregnancy and Baby

Chronically Ill Parenting

My new YouTube channel series!

A bit late to the party! However, my new YouTube series is now up and running after months of wanting to do it!

Once a month, I will be interviewing chronically ill parents, ostomates, those who suffer with mental health and also interviewing those who have struggled and do struggle with fertility. My first live stream was this evening at 7pm and will be edited and posted onto the channel to view at any time.

I thought it was important to highlight the struggles and achievements that chronically ill parents have throughout life! I know whilst I was pregnant, that there just wasn’t that support available and I’m hoping this can help other chronic illness sufferers and ostomates when planning to have a family, even if it is only just questions before thinking about conceiving. I also hope to help any mums out there who are pregnant and those who are already parents but just struggle with feeling alone in some aspects of their life.

I am aiming to do 10-15 interviews for this series, I will be kept busy! If you are interested in being interviewed, pop me a message on my instagram page.

I look forward to seeing how this goes and hope it helps some of you out there!

Personal Blogs, Pregnancy and Baby

Merry Christmas!

My first Christmas as a mummy!

Christmas 2021 has been amazing! Odin’s first Christmas and my first one as a mummy! We were truly spoilt from everyone.

We spent Christmas and boxing day with my in laws and the doggies, watching movies, listening to music, eating good food and opening presents, it was such a fab two days! My stomach and c section scar has been quite sore and my Fibromyalgia along side hyper mobility syndrome have been causing me to ache quite a lot which has been making me super tired from the insomnia and being a mum too. Soaking in the bath helps A LOT and I rather this approach than pain relief as it makes me so drowsy and gives me such a sore stomach. I also got an electric heat pad for Christmas so that will be lovely to use tomorrow whilst relaxing! Hopefully it helps with my pain, too.

Odin got a lovely cot for his Christmas and so we will be putting it up in the next few weeks! He won’t be going into it for a good few months yet though, I love having him sleep by my bed side. He really is growing so quickly but at the same time it is so lovely. He’s starting to smile and talk and he loves to watch baby sensory videos, it’s super cute!

In terms of my stoma, each day is different. 6 years on as an ostomate and I still find my body changing, more so after having a baby! It is still numb under my stoma and it does swell from time to time but I do what I can to be the best mum to my ability and rest as much as possible. Being a chronically ill mum, the one thing I have found and therefore that is my advice to any other chronically ill mums is to rest as much as you can. Take a bath when you are able to, to help relax and for pain.

I hope everyone had a lovely Christmas! Here’s to 2022!

Personal Blogs

My Complex Health

I’ve had chronic health conditions for just under ten years now and as time has went by, I’ve been able to sit and reflect on my experiences and journey as a patient with complex health.

My journey started in 2012 when I was diagnosed with Crohns Disease and Ulcerative Colitis. When getting a diagnosis for a chronic illness, you will have different tests done to determine the outcome of diagnosis and the usual standard practice tests will be blood tests and typically a scan of some sort. So what is the issue?

You’ve gotten the tests done so surely this good, right? Wrong. Many patients who are complex first find out this issue when they are really, really unwell and somehow bloods come back within normal ranges and tests such as an ultrasound imaging comes back clear. They have all the symptoms of something being wrong but cannot seem to get the right answers. This was very much the case for me until I had my first Colonoscopy and was diagnosed with Crohns Disease and Ulcerative colitis as well as biopsies being taken during the colonscopy and sent away to the lab for analysis. I also have had numerous MRI scans and CAT scans and they can be a hit or a miss with accurate results. This leads to extreme frustration as you know you are getting worse by the day but health professionals say “your bloods are looking good so thats very reassuring!” When in reality it isn’t!

So, where do you go or what do you do? That’s the next part of your journey and certainly what I have had with mine. You go back to basics by writing down your symptoms, some doctors may trial you on medications to see if your symptoms lessen, worse or stay the same or organise a scope to look inside your bowel. Of course it isn’t always so simple with many complex patients getting doctors who plain blank refuse to take any illnesses into consideration and send you on your way. I havent had that often but I have had some doctors be this way with me, especially old GP’s in the past.

The only advice I can give is to request to see another GP or consultant – as a patient you are entitled and within your rights to do so! Dont give up trying for help for a diagnosis or help with your disease after a diagnosis because of normal results. My other advice would be that when you are an in patient or seeing someone at an appointment, to make them aware that you are complex and that you are unfortunately, not easy to care for.

Today I seen a consultant I have not seen in years since he had discharged me with good bloods 8 years ago. Its important that when health professionals say your bloods don’t show anything that you let them know that this is actually very normal for you due to being a complex patient and you must advocate for yourself. This helps them, help you. That’s exactly what happened today and he was so lovely and understanding. As I have dealt with normal test results for years, I have always made it my priority to try and remember my own health in ways that many of us would not. This means trying to remember what tests show best results, what medications I respond well to, what tests I have had done and the results of them and in what year they took place. Trying to remember what my levels of blood tests usually come back with and also to remember the cut off number for my iron to hit to be able to have an iron infusion. This is particularly handy when you are in A&E or with out of hours services.

I also have problems with my veins and so have fought plenty with people in hospitals who try to take my bloods in places I know will not give them blood due to scar tissue from a condition that I suffer from known as Bechets Disease. This means I also need particular colours of butterflies (the colours reflect what size they are) and cannula’s due to how small my veins are. Many health professionals become very cocky thinking I am giving them a challenge that they will take on and win when in reality it is to actually make it easier for them and also less painful and traumatising for me!

There are many people out there just like me who go through this, some even worse and don’t have any care at all. Support groups has been the number 1 place for me to connect with others just like me who go through this! Over the years I’ve been able to chat and relate to them but also pick up great advice and know I am not alone. It also helps when I do get difficult doctors from time to time, letting them know that this does happen to many people.

I would love to hear more from people with this same issue and so please feel free to get in touch if this has affected you!

Life With A Stoma, Product Reviews

ModaVi Bag Review

This week I was sent samples of the new ModaVi bags to try from Pelican Healthcare! As promised, I would try them and write my review on my blog as well as sending feedback through the feedback link.

How do they feel?

Honestly the fabric feels amazing and soft, like suede! The flange is also super nice on the skin and very comfortable. They feel very light on the stomach when the bag is full too and the adhesive caused no issues and in fact, felt so lovely to wear around my stoma and on my paristomal skin. They are also fantastic to look at and definitely gives you a lot more confidence!

Flaws?

So for me, I found a few flaws with this bag (this is personal opinion and not the same for everyone!) I really do not like how the opening for drainage is at the bottom. Its really messy and fiddly because in order to clean it fully you have to open it at the bottom then stick tissue all inside a good few times before you can roll it back up again, a similar opening design as the Salts bags. When unrolled to go and empty, there was poo everywhere and leaking out the sides so my fingers got covered every time. I also didn’t like the flappy part at the top of the bag which is used to view the stoma underneath as it dangled around a lot. Super handy though, I admit, for being able to get a good clear look at your stoma and it also folds up for when wearing a Bikini or something similar! I also found that after showering, it peeled away but that could purely be because I am pregnant and have a lot more curve on my paristomal skin and may not be due to the actual flange itself so do bare that in mind when you have read this!

Over all the aesthetic of the bag is perfect and I couldnt fault that at all but practically it just didn’t work for me. The flange is the best part, due to how healthy it made my skin and it just felt so good whilst on!

I still definitely prefer the opening draining design on the sensura mio bags by Coloplast as they have an extra part where the poo runs down and its so easily wipeable and takes a lot less time, toilet roll and no fiddling about what so ever. As always, different bags work differently on every ostomate so please do not be put off from trying them!

Thankyou so much Pelican Healthcare for sending me them and so quickly too! The bags I have left over will be donated to The Jacobs Well Appeal.