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!
Oh my gosh, I’m now 27! Mentally I don’t feel so old, physically I feel much older (ha ha.) However it’s my first birthday as a mum and although I’m not all too eager to celebrate as it’s super cold, from having a rough time recently and due to not being so well, It’s something sort of special. A milestone, if you like.
Its almost 8am and Odin’s first nappy change and feed of the day is done so I’m taking the time I have now to post for my birthday and to also wish everyone a belated Happy New Year! Hogmanay was really lovely and we had a lovely time bringing in the bells with family and watching fireworks on the TV! Today, we plan to get a little foodshop, my dad is coming over to see me and then we are having Chinese.. yum! I also noticed there are quite a few things off of my wishlist, some that have arrived and others that I am so, so excited for them to arrive! I am so very grateful to friends and family for this. Although it is my birthday, I have gifted one of my friends over in America something for her little girl, off of her wishlist and I cannot wait for it to arrive! I also donated to a family over in America who have been struggling with their medical bills, more information is down below.
So, as it is my birthday, I’m asking anyone and everyone to donate to the families GoFundMe. Their little twin boys were born at 32 weeks, one with his bowels formed outside of his body and has undergone lots of surgeries and medical interventions as he has been so poorly.. I’ve followed their journey for a while now and the family have spent so much time in hospital at a time thats meant to be filled with joy, met with the fear of the unknown and watching their baby be so sick. You can follow them on tiktok for updates and the dad does do a live stream when he can, to let everyone see the babies and update everyone who also follows their journey.
I know its difficult times so if you can please do by clicking here, if not please share. I know they will appreciate any help given especially as the Dad is a retired Veteran.
Here’s to 27 and hopefully this year brings more happy memories, easing of Covid and to watching Odin grow more each day!
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!
Danni is one of my best friends whom I met through the Colostomy UK support group via Facebook. We have been eachother’s rocks through our pregnancies and everything that she has been through, we have gone through together! *please note any triggers before you read about trauma, surgery and birth*
About 2:30am on the 11th November 2021 I finally had enough of feeling unwell and my gut was telling me something was badly wrong. (For those of you who know I’m a Type 1 Diabetic and have been for 16 years now) I checked my ketones and they were extremely high which is VERY dangerous for a Diabetic let alone a PREGNANT Diabetic.
Josh (Danni’s husband) immediately called for an Ambulance who said that because I was still breathing, it would be a 6 HOUR wait and that I wasn’t classed as a priority. I then rang my family who rushed me straight into A&E and even though I explained my situation to the Receptionist, I was told it would be a long wait. Knowing full well I was in something called DKA by then, which again is VERY dangerous and life threatening.
I eventually got seen by Triage about 15-20 minutes later who understood my situation and quickly got me onto a bed in the main A&E bit of the Hospital. I had NOTHING done other than bloods and my health started quickly deteriorating (throwing up black stuff with blood in it) which I mentioned SEVERAL times to the nurses. Maternity didn’t even come down to do a check on Jackson even when I told them I hadn’t felt him move AT ALL for hours.
By about 9am my amazing Diabetes Team came to see me and noticed how ill I was, they then rushed me into Resus and proceeded to work on me trying to get me stable. Maternity came down and I will never forget my Midwife’s face when she put me on the baby monitor. Jackson was in severe tachycardia and I was also in pre term labour.
DKA (Diabetic Ketoacidosis) masks the normal symptoms of everything especially in Pregnancy. I was also in severe tachycardia so the Surgeons came down and decided to get me straight up to the operating theatre and do a Cat 1 C-Section which means a threat to life unless intervention can be done.
I had to have a spinal (where local anesthetic is injected into the spine) because it was too risky to put me under general anaesthetic, which I was kinda glad about because that meant I could have Josh by my side in theatre while they saved both mine and Jackson’s lives! Myself, Josh and our families will be forever grateful that me and Jackson are now safe and healthy.
The reason why a full investigation is being done by the NHS and PALS is because the A&E staff should have done so much more, being busy is no excuse before someone comments that. The nurses were talking to eachother quite a lot so I know they weren’t rushed off their feet and when I was being violently sick they just stood there looking at me. I also wasn’t allowed Josh with me even when I was in critical condition.
Just wanted to share my story, I’m VERY grateful we now have our little family, I do have PTSD from the Trauma but hopefully that goes away in time.
Very proud of Danni to raise awareness of such a traumatic event in aid of helping others!
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!
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.
Pregnancy is one of those experiences that unless you experience it, you don’t REALLY understand it. The good and bad thing is that it is different for so many!
Many women find that falling pregnant doesn’t ‘just happen’ and it can take a few tries and losses to finally get far along enough to feel that “safe zone”. If you are high risk and have lost before, you will find that each milestone feels like a huge achievement. As each day, week and month goes by you still feel anxious, scared, nervous, excited and have a sense of wonder for what the future holds for you as a first time mum.
For me, the first milestone was 12 weeks because I have never, ever gotten that far before. Then came 20 weeks where we also found out the gender of our baby and had the babies weight and organs checked, all of which came back 100%!! It was a huge shock for us due to us both being chronically ill, we worried something would happen or be passed onto the baby so we were super chuffed to hear all is well and a VERY strong heartbeat! Now, at 21 weeks my next milestone is going to be 24 weeks and I feel that at that one I can fully breathe and relax a little bit better without so much worry.
So what have the highs and lows been for me? There has been so many, just to list a few:
Losing friends – it is true what they say that when you become pregnant, you realise who is really there for you. One of my friends of years completely blocked and removed me over night. It still hurts to this day but you do learn to come to terms with losses of friendships over time!
Feeling the baby kick – it feels bizarre! But it is SO lovely to wake up in the morning by little baby kicking away letting me know they are awake!
The hot flushes – oh. my. goodness. They come out of nowhere and can last upto a few hours!! The room can be freezing due to windows open and the fan on the highest setting and I will still feel too hot! Eventually it does settle with some paracetamol and an ice pack.
The hunger – this is a funny one! You eat and eat and EAT and you still don’t feel full, only when you feel the indigestion pain starting and the sick burps from your body letting you know that “girl you have to stop!!”
The amazing support – you connect with your friends and family in a much different way than before. Especially those who have had children of their own as its nice to have something in common. For friends who haven’t had kids yet, its nice to be able to share this experience with them!
The fatigue – this part is probably the worst. As I have said previously, 10 years of chronic illnesses has not prepared me for how tired you become when pregnant. Before I would laugh it off when people would tell me how tired you get when carrying! Naps have become my daily routine and really do help.
Looking at baby clothes/items!! – looking at all the cute items and clothing you can get for your baby is the best feeling ever! Everything is so dinky and cute! It makes you that more excited for the arrival of your baby.
Blockages/constipation – this has been super difficult! Just a few days ago, I had a really bad blockage and was vomiting real hard. I was super close to going to hospital but eventually after sipping on diluted laxatives from 6am, it eventually did clear. The constipation makes my stoma quite swollen so sometimes it can be painful however having an Ileostomy means there are now nerve endings so you really don’t feel much apart from pressure and swelling which is like a tightness.
Lastly (this one is very dependant on you and your pregnancy) the pain – luckily my crohns hasn’t been too bad but everything else has not been so kind on my body! I was diagnosed with PGP (pelvic girdle pain) which is super painful along side having Hyper Mobility Syndrome – my joints dislocate and pop back into place almost daily, sometimes multiple times per day. So I have to rest quite a lot! All it takes is a sneeze or cough and my hip clicks and pops.
It’s been really lovely to document my pregnancy journey not only here, but over at Trio Healthcare too where I talk about how pregnancy has been with a stoma. When I first became an ostomate, there was no blogs or information available about pregnancy with an ostomy and so, I never knew what to expect or any advice on how to cope with things! I hope by sharing my experiences, that it helps anyone out there with an ostomy feel reassured and have some advice on becoming an ostomy mum! To start with, I was so worried about how it would affects my stoma and my chronic illnesses but in time like with most things, you learn to adapt and cope with what your body throws at you. You learn to grow through your pain and bad experiences and turn them into something good! My number 1 advice would be is to listen to your body, so often we push ourselves to do that bit of housework or go for a walk when our body feels ready to collapse with tiredness! Rest is so important.