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!
We are so very happy to announce that my beautiful little boy was born on Wednesday the 13th of October at 12:48pm weighing in at over 8 pounds! We have named him Odin George Edward Laughton and he is just gorgeous!
I was in hospital for 2 weeks prior to my c section as I had gotten really unwell. I also had contractions for a whole week which took my breath away when contracting! Luckily, I never dilated nor did my waters break – both of which is good in my circumstances of not being allowed to go into natural labor. My C Section wasn’t near as bad as I had thought it out in my head to be and being put under General Anesthetic wasn’t traumatising for me at all. The staff were so amazing and really went above and beyond to make it comfortable for me. Waking up afterwards was really rough, I was vomiting really hard because of the mucous stuck in my throat and being so tender, I couldn’t cought it up. I stayed in recovery over night and they were so great in helping me look after Odin with feeds, nappy changed and burping him. The day after the surgery was the worst pain wise due to my womb contracting back and shedding the thick lining that forms during pregnancy! It didn’t take them long to get my pain under control though and yesterday (16th of October) we got home!!
It is so surreal, I keep thinking I’m dreaming! Being a mummy is the most amazing thing in the world and nothing beats it! Being a mummy is something I have wanted for so long that we didn’t think would ever happen for us. Now, I have such a healthy baby boy despite being so ill during my pregnancy! It’s such a blessing as well as a miracle and having a rainbow baby (baby after loss) makes him so special to us. The late nights/early mornings and nappy changes are all such a blessing even if I am tired, just being a mum and caring for my baby makes everything so worth it!
I am so thankful to all staff at Aberdeen Maternity Unit for the amazing care Odin and I had! From the domestics, kitchen staff, cleaners, nurses, auxiliaries, midwifes, doctors, surgical team and everyone there! I also met three great new friends during my admission who I still keep in contact with. Jaimie was also able to stay for three nights at a hotel very close by thanks to the NHS Aberdeen and NHS at Dr Grays in Elgin and we are so grateful!
I had my midwife come round today to check on us and the same tomorrow. I also have family coming over today to help us put things away and clean the house. Jaimie had major surgery just over 3 weeks ago to move his Ileostomy from the right side to the left and so he is still quite tender. My c section wound is a little sore but mostly it is my back that hurts which a hot water bottle really helps! The bleeding after my section has also not been too bad at all which is a huge relief as I was so worried about that prior!
Over all, it’s been the hardest but most amazing experience in my life. ❤
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!
My name is Abbie Louise Crystal, I’m 26 and I live in South Wales. I’m a model influencer and blogger. I live at home with my mum and dad and we have a beautiful little blue staffy called Nico, he is 5 almost 6 and I wouldn’t be without him! He’s been there through thick and thin with me and is my little baby! It’s mad how something so special can change your life for the better. I studied at the University of Cambridge for professional dance and my favourite food is Chinese. Dancing is my passion especially choreographing, I also love to chill out by having a pamper with face masks, tanning and skin care. My hobbies are mainly reading ,running and working out when I’m well enough to! Here is my journey with Inflammatory Bowel disease;
I was diagnosed Crohns Disease and Ulcerative Colitis two years ago, I also have Depression and Anxiety, Vitamin b12 Deficiency and bouts of really low blood pressure which is making me faint often. Being a dancer, I was active multiple times a day and so that’s when I knew something was wrong with me because my body started lacking energy and although I would eat, I still would pass out! My dance teacher was terrified along with the dance girls in my team. In 2019, I was training for the world championships in Blackpool when I started experiencing stabbing pains in the bottom half of my stomach and my back. I thought it was just a stomach bug and so I told my mum not to worry and continued doing my dancing and carried on as normal as I could. It wasn’t causing me any problems until I ate and that’s when it would get really bad for me. I couldn’t hold anything in, it was just going right through me and when I went to the loo, I was bleeding a lot from my back passage. This is when I started to worry especially one night when it started to get worse, so I got rushed in to hospital. Little did I know it was really serious and I was about to enter the most terrifying months of my life.. Months went on where they did so many tests including cameras to look inside me ( Endscocopy, Colonoscopy and Laparoscopy) I had so many biopsies that I wasn’t able to get out of bed for over four weeks at a time. It came August 2019 and I was admitted to hospital for the first time to have an emergency camera and that’s when they found out that my colon was so inflamed and had lesions the size of a 50p coin! My bowel was also covered in thousands of little ulcers. It was a week later that I was diagnosed with Ulcerative Colitis after the result came back. I thought all was well and took the medications I was prescribed and got on with it! Something started to feel not right again and then found out that I wasn’t quite out of the woods just yet. 2020 was just around the corner and I started getting weaker and weaker, the weight started to come off rapidly and quickly and a lot of my family and friends were noticing. My parents got so worried as I was hardly keeping anything down and I was passing out all the time so I rang my doctor. They came did some more tests to see what was going on and to figure out what was causing the bleeding and decided to start me on steroid enemas 6 times a day to control my bleeding and 11 oral steroids to control the inflammation in my bowel.
I then got admitted again (the 7th time in a couple of months) to have another emergency camera where more biopsy’s were taken which involved more cutting, more prodding and more emergency incisions. This is when they found Crohns Disease on the left upper side of my colon and so now I was dealing with not one but two forms of Inflammatory Bowel Disease. Hospital was my second home for a long time and still is from time to time when I am unable to keep things stable at home. I cannot thank my doctors enough for being there at my time of need especially through the covid restrictions due to the pandemic that we were all in! To this day, I experience many many flares and different injections, medications and enemas every single day of my life but that’s part of my life now and I’ve learnt to accept it is part of me! Illnesses do not define you as a person, they only make you stronger. I am constantly in pain 24/7 and it can be draining. This disease has affected my social life in a big way because I can’t eat out without needing to go to the loo. My family have been so supportive with the whole diagnosis and I’m so lucky to not had major surgeries just yet but I do know that it is part of my future. It has also knocked my confidence and my ability to deal with being Chronically Ill and has also been hard adapting to a new life as before, I was such an active girl and it’s so hard for me not to do what I’m used to like my fitness and dancing. The most annoying part for me at the moment is that I can’t lead a normal life like I used to, due to being ill with no energy and not going out of the house due to the affect it has had. I now lack the ability to socialise with people at events and have found that people attitudes are sometimes not the best as they don’t really know about the illness and what it entails.
The positives that I have found out of having Crohns Disease and Ulcerative Colitis is how it’s learnt me how to love myself again, to look after my self and do self care. I am also overwhelmed by the support I have had on this journey and my biggest lesson I have learnt is to not abuse your body and to look after it! You never know what’s around the corner. I’ve now started my new injections called adalimumab and have only been on them for a month, the side effects are mental but hoping it will keep me in remission longer than I have been previously!
Thankyou so much for reading my story and continuing to support me. Please always check the signs of bad tummy’s and bleeding as it could be something really serious, if left and it’s not tested and treated it can be fatal. You can follow Abbie’s journey through her instagram here.
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.
Lately, I’ve had some negative comments about my pregnancy and it has been really hurtful. I wanted to be open about how many pregnant woman can often come across these situations and how to cope and deal with them as best as possible and to put yourself first.
Sometimes when people don’t know you, they often judge without knowing your struggles and the journey it has taken for you to get you to where you are. I am always very open and honest about my journey and the struggles I’ve faced but it is apparent that many don’t take the time to read that and make assumptions. They also forget that it doesn’t only just affect myself, but it also affects my family and my partner.
Just some of the things I’ve had is “she only got pregnant to get attention” “she is a pitty party” “she always goes woe is me” “she just did it to get likes on social media”. I’ve also seen comments about other woman, too such as “she doesn’t deserve a baby” etc. Some women get pregnant easily, some dont. It is not for others to decide how or why we got pregnant!
I have struggled with fertility since the age of 17 and in 2017 was told I would never have children. Fast forward to now after 5 misscarries and a surgical termination, I am 6 months pregnant that is an absolute miracle and blessing to my partner and I! We have had amazing support from family and friends even through these awful comments and this is where I am healing.
If you are struggling through hard times with hateful comments, find your healing in the supportive calls and messages from friends and family. It can be hard to see through it but never loose focus on what is to come – a beautiful baby completing your family. Don’t loose sight of what obstacles you got through and the journey you have faced! You are stronger than you know and we have all got this!!
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.