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.

Personal Blogs

The Highs And Lows In Pregnancy

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.

Personal Blogs

Pregnancy At 19 Weeks

I can’t believe I have reached 19 weeks already! Time whizzes by! Only feels like yesterday that we announced our rainbow baby.

Firstly, pregnancy is HARD guys! Not even 10 years of chronic illness, surgeries etc has prepared me for this whirlwind. Having said that, I am getting really excited! Last week, I started to feels kicks after having felt butterflies from around 16 weeks. Let me tell you – it’s a bizarre feeling! The baby likes to kick right where my butt used to be! (Not even outside my belly and it’s causing trouble already!) We have started to gather baby items too which makes it that even bit more exciting to see everything in the babies room.

Yesterday, we went to Cullen Beach with my in-laws and their dog Zak, it was SO lovely! There was a fab wind so even though it was warm, the wind kept me cool enough to enjoy a walk on the beach – watching the dogs play and paddle in the water. Biggie took a plunge and even went for a little swim!! We also enjoyed a lovely ice cream and then went back to my in-laws place where a big box of baby stuff was waiting for me!! I could have cried as it was such a lovely gesture and jaimie’s mum got me the most beautiful Disney baby changing bag, pictured down below! I am obsessed with Disney!

Last week I went past to visit my mum who got me these gorgeous aristo cat pyjamas that I had spyed in primark just 2 weeks prior when I had my Blood Pressure attacks in Primark and had to leave as I could barely walk from passing out! The baby also got a little comfort blanket attached to a cute little sheep! I have had some lovely gifts from other people too, which I will be doing a video on at my virtual baby shower, to thank everyone on.

We have our gender scan on the 15th of June and so, have been asking what people think it may be! To my surprise, it’s totally 50/50 on the votes! So we will just have to wait and see. My Pelvic Girdle Pain is beginning to get worse as the physiotherapists had said would happen however I am relying less on antisickness some days and my migraines aren’t as severe but I do unfortunately get them daily. My blood pressure drops are also beginning to happen almost every day but I am not letting any of these things stop me from trying to continue my daily life, some days I am bed bound but totally make up for it on the days I am able, like yesterday.

A few things I have noticed so far are ; increase in thirst, heart palpitations, restless and sometimes very little sleep, fatigue, feeling of a small dog being carried on my stomach!, breathlessness, dizziness and increased hunger. My hair also seems to be in better condition and my nails grow like no tomorrow! My skin is also doing really great and my weight hasn’t done too bad either as I try to keep a balanced diet and my cravings are mostly healthy stuff too! (Weird.)

So at this point, I am 50/50 of enjoying pregnancy but also still finding it super tough! So hopefully it keeps going on up from here and next time I update you all will be after my 20 week/gender scan! Lots of love from bump and I x

Personal Blogs

We Are Expecting!

Proud Big Brother To Be! Mr.Biggles!

Super late in updating my blog on all the news and changes we have had the past few months! As you can see in the picture of our proud boy Biggie, we are expecting our rainbow baby in October this year! This week I am 16 weeks (12/05) and I’m not going to lie, pregnancy has been REALLY tough for my body. The morning sickness that doesn’t just occur in the mornings (weird, right?) has been all day every day, relying on antisickness meds just so I am able to keep water down and be able to eat. Prior to us finding out at 6 weeks, life was really tough and my mental health wasn’t doing so well with a lot of stress around where we were and that in turn was making me super unwell. Just a few weeks before taking my first pregnancy test, we had went to view a house out in the country and had been accepted for it! It was SO meant to be! Thanks to family and friends, we got moved in a couple of hours about a month ago. We still have to paint our bedroom, the babies room and hallway but we have plenty time!

So for my pregnancy, I have a consultant and midwife with a planned C Section under General Aesthetic for my birth plan at approx 39 weeks, all being well. I know on my social medias I answer everyone’s questions there but just on the off chance that you didn’t see the posts, here are some questions I have been asked quite a few times:

  • “What advice do you have for other ostomates or chronically ill people who want to have a family?” – My first most encouraging advice is DON’T have the stress of trying, don’t try. Now this may seem a weird thing to say but continue reading and you’ll see what I mean! My partner Jaimie also has a permanent stoma and ken butt so you would think our odds would have been made very difficult! We had been trying for a while but I had a miscarry last November and I lost all hope and we stopped trying. The one advice I’ve always been given is not to try, it will happen when it is meant to – and that’s exactly what happened. I always found that saying so cliché but it proved me wrong! PLEASE note that this does NOT apply to those with fertility issues. If you are concerned about this being an issue I really do advise to see your GP or specialists for the appropriate referral to have a consultation and tests done to determine this.
  • ” How did you meet our partner and is he excited to be a dad?!” – Jaimie and I met actually when I was just 17 after I was newly diagnosed with Crohn’s Disease via Facebook when I had made a group for those local here with IBD because I knew nobody with it and felt very alone. We spoke for a little while then lost contact as I was in a very toxic and abusive relationship. Then at the end of 2017, we met again on Instagram and Jaimie had not long had surgery for his permanent stoma and needed advice and just someone to talk to who could relate! He was in a relationship at the time so I thought nothing more of it as helping someone who was new to stoma life, as did he! After a while, the relationship came to an end and we were both gamers, now at this time my laptop was away being repaired AGAIN (lol) and so he offered for me to borrow his! So sweet! After that, we have been inseparable. This year in November will mark our 4 years together. Has it been easy? No! We have had many obstacles to pass, a miscarry, failing to become pregnant, past people, current people, normal daily stresses, hospital stays, surgeries, moving house twice, mental health, pain and grief. But we got through it! It helps that we both have permanent stomas because we understand each other. Jaimie is super excited to be a dad but we are both absolutely shitting it too! life is by far perfect but we make the most of what we have and tackle what comes our way as a team.
  • “Why can you not have a natural labour for the birth of the baby?” – I have a permanent stoma with a barbie butt that has not healed, I had the operation 6 years ago (no nothing you advise me will work as I’ve probably already tried it!) Because of this being one of my complications from Crohn’s Disease, the wound area is full of blood vessels which if too much pressure was to be had there it wouldn’t be pretty and exposes me to some real dangers. Due to having my permanent stoma, fistulas and abscesses and the surgeries for those, I have a build up of scar tissue. I am a high risk pregnancy which means that they have decided a C Section at 39 weeks is best to avoid any complications that may occur during labour and avoid any danger to myself and/or the baby. I have severe PTSD when in hospital environments or busy and panic provoking environments which leaves me frantic, spewing, shaking, unable to stand from shaking, dizzy and sets of my asthma and I have a panic attack and asthma attack at the same time. I have nerve damage in my back as a result from my stoma and barbie butt surgeries meaning an epidural is not an option and would make my long term chronic back pain and sciatica much more worse. I have a rare type of Crohn’s Disease which is all below my belly button so inside my pelvis, my vagina and inside the perineal wound where my butt used to be. This means I have SO much fistulas all inside my pelvis going from here to there so they in themselves cause a few complications. I also have a fluid collection where my rectum used to be, this drains through my sinuses and main large fistula. As far as I know these can be prone to infection etc however I’m not 100% on what would happen with this in a natural labour but I can imagine nothing good!

Many people CAN have a natural birth with a permanent ostomy so don’t let this put you off if you are an ostomy mum to be or plan on having kids and you have an ostomy. This is the result of my birth plan that has been made for me and my baby by a consultant and 2 midwifes! Always some positives with the less positive!

The plan until the C Section is regular growth scans, monthly appointments with my consultant, check ups with my Midwife and remaining on antisickness unless that changes and the sickness goes away, which I am REALLY hoping for! I had my physio appointment this week so I have some light exercises to do which includes pelvic floor muscles, try to go for walks when I can (which isn’t often due to being so sick and in pain) and resting as much as possible. We have our gender scan booked for next month too which will be nice! I have my first face to face appointment with my midwife this week too. I am really nervous but excited too! I’ve also joined some Facebook groups that are for mums with IBD and an Ostomy which has helped me massively – there are other women there that I can relate to that has not enjoyed pregnancy either and been really unwell during. The only downside I have found is sadly that a lot of my family haven’t bothered to congratulate me, message me to see how I am or interact with me or just to see if I need anything or any help. It was stressing me out and upsetting me so much seeing them all interact with each others posts, going out together etc and I couldn’t even get one message or a congratulations so for my own mental wellbeing and eliminating stress, I deleted them out of my life. The very close family that we do have, have been amazing!! Friends too! Always messaging to check up on me, video calls, phone calls and supporting me really well. Super grateful for those that have stuck by me and continue to join me on the journey to parenthood!

Please feel free to message me on my social media for a chat if you are going through the same, need advice on pregnancy or if you have any questions that I haven’t already answered! ❤