The Hospital Diaries Days 10 to 13 – Wednesday to Saturday

Happy weekend everyone – I really hope you are all enjoying yours more than I am stuck in here.

Update

Unfortunately my potassium and now also magnesium levels are still crashing into my boots so I am constantly having to be hooked up to drips as well as take supplements to keep my body functioning. The last couple of days have been a struggle with my feeling very shaky and that my muscles in my hands etc just won’t cooperate quite properly with what I want from them. The doctors think this is due to the low levels of stuff in my blood and are keeping a close eye.

Foot hook up is a pain

It looks like I will be having surgery on my stomach this week but the surgeons will be asked to comm Monday and get me on the list as long as they agree with gastro’s plan. Once I know what is going on I will share, but please excuse me for not doing so much – a lot of things are still little mysteries to me too and I need to get my head around the fact I will be having more abdominal surgery again.

Cannula Count – Hellish!

Still getting stuck left, right and centre for cannula access, including having another in my feet. My veins just are not happy! I plan on speaking to them about putting a mid line in after the weekend. Although its a higher infection risk, it should be able to stay in place for the rest of my hospital stay and I am currently having daily blood tests as well as the cannula attempts so think this will be a better option. As I am looking at going to surgery, they may be able to put one in wile I am under, and then it is one last thing to worry about following the operation too.

This lasted about two hours!

Food Diary

I am trying to eat little and often as any thing too much just makes the pain ten times worse in my stomach. I have a lot of bile green output from my stoma which is also being very sluggish. I am stuck on low residue too and the menu is very limited. It is definitely something I plan on leaving feedback on once I leave.

My Speech

As some of you know I have been invited to speak at the Ileostomy Association event in Birmingham on March 30th. I am over the moon at being asked to do this and am so very looking forward to it, so hoping i can get out of here in time! I have been posting questions on my Instagram, Twitter and Facebook pages and it would be great for any of you ileostomates out there to reply if you have something to say abut the topics I am asking.

For more information on the event check out iasupport.org/infoday

Musical Beds

I have now (up to 11pm Saturday night) been moved 5 times! I am currently back in a side room which is much better as it is quiet and I have my own bathroom. They are monitoring my stoma and urine output so it is really inconvenient and embarrassing whine having to share a bathroom. Also being on almost continuous fluids makes you go…a lot! Hopefully they give me a rest now – I think I deserve one.

Back in the sideroom

Visits from Mum, Dad and Ste are helping keep me going and I am keeping busy with reading, cross stitch and colouring. I have now read three books in here since arriving and am ploughing through four and five (one paperback, one Kindle). I was contacted by the lovely author of Brace Yourself on Twitter abut a review of her book and was so pleased she did – I loved it. I will be posting a full review this week about it so keep your eye out.

Again, I have been overwhelmed by the support and messages and can’t thank you enough. It really helps put a smile on my face when I feel so damn awful all the time!

The Hospital Diaries Day 3 – Wednesday

Today wasn’t a good day for me, my pain and nausea/vomiting certainly ramped up.

Doctors Rounds

I didn’t see my normal consultant as she isn’t on the ward this week but the doctor I saw today was lovely. He was worried as my ostomy output is extremely slow and my abdomen is very distended so he ordered an emergency CT to rule out a blockage and has bumped my MRI to urgent as the camera test was inconclusive about what’s going on in the small bowel and the biopsy results aren’t back yet.

We talked briefly about long term possible changing my biologics and he’s noted that down.

CT Scan

This was pretty easy and it’s a test I’ve had a few times before. They take a few images, then put a dye in your cannula which creates a warm sensation and makes you feel like you are going to wet yourself…but you don’t! A little strange but not painful at all.

Cannula Count – 3

The CT radiographer requested I had a second cannula put in so someone came to do it and it lasted less than 20 minutes. My veins really are hating these more and more again! Another lovely bruise to add to the collection. Luckily, CT said as long as my other one was working fine they were happy for me to go down

Food Diary

Today was a mixed bag as I had breakfast, then was spit on fluids only by the doctor. Due to my nausea and pain which gets worse when I eat, I’m not really feeling much like eating but do get so hungry still so when the stoma nurse popped up yesterday she told me to stick to low Res, liquids and purses. Limited choices but as I’m not feeling overly like eating, just occasionally it’s not so bad. Still allowed cups of tea and even though they take me a while to drink as have to take it slow, I’m happy.

Breakfast

Ste came to visit this afternoon and bought me in some bits. He has been such an amazing support, mentally he is keeping me really strong and I can’t thank him enough for that. As well as keeping my house ticking over and taking care of the doggies bless him.

My mum and dad didn’t visit tonight as he has a ‘Bake Off’ competition at work for Thyroid UK which is a charity close to our hearts as both my mum and Aunty have underactive thyroids. He’s tested his cake out and I got to try some on Monday and it was delicious. Tonight he made his final one for the competition so please cross your fingers for him! It’s a chocolate orange cake and I think he has gone fab.

Mary Berry would be proud!

Looking forward to hopefully a brighter day tomorrow and getting some results and an idea of what’s going on with my insides. Thanks for your continued support,

The Hospital Diaries Day 2 – Tuesday

I managed a pretty decent night’s sleep last night to be fair, which is good for me in hospital!

Food Diary

Breakfast was the only meal I photographed today as I then had to go nil by mouth for my camera tests and then only had a sandwich for tea so not very interesting! I opted for porridge and a slice of jam on toast and I couldn’t complain!

Breakfast fit for a queen!

After this I couldn’t eat anything till after the Flexible Sigmoidoscopy and Ileoscope which were booked for that afternoon. I was allowed clear fluids till 11am and braved a black tea which actually wasn’t as bad as I thought! Too much milk doesn’t tend to agree with me when things are playing up so think that helped!

Not too shabby!

Flexible Sigmoidoscopy and Ileoscope

I was due to be taken down to have the cameras done at 1pm but it was closer to 3pm in the end and in the meantime I was moved to the gastro ward. I’m in a side room again which is nice and private with my own bathroom. When you have a stoma it really is such a blessing to have your own bathroom in here.

I was taken down to endoscopy just before 3pm and my vitals were all checked and then I waited about half an hour before being taken in. The staff down there were all lovely.

I had the Flexible Sigmoidoscopy first after some sedation. Due to strictures they know are down there already they also use a pediatric scope to try and make it a little easier. It was still quite painful but not as bad as the one I had about 10 months ago. He said there was inflammation and has taken biopsies to confirm whether it’s diversion colitis or avtive Crohn’s. My previous post – A Day In The Life – Flexible Sigmoidoscopy – explains more about this procedure and the prep I had to follow from home.

I wasn’t looking forward to the Ileoscope as have never had one before but it really wasn’t as bad as I imagined. The first part was sore as we discovered that there is a rather large stricture right behind my stoma which may be causing alot of my issues! The doctor used his little finger to find this and then the scope to get in for a closer look. There was a lot of backed up output behind my stoma which is obviously struggling to get out past the structure. The doctor did his best to clear this but then there was an awful lot and it was becoming uncomfortable with the amount of air he was having to use. He said the bowel he could see looked pretty healthy but he couldn’t be sure from the view he got so took some biopsies to check for inflammation. He is hoping the dilation with his finger/the camera will help open the stoma up now so fingers crossed!

Cannula Count

No new cannulas needed today as the one on the back of my arm is working beautifully. The one that tissued yesterday has left my arm a right mess though! You can see the thick line at the right hand side of the bruise is where my vein has completely collapsed – that one will never be good for anything again! Luckily it’s not too sore which is good, even with how horrific it looks!

Ouch!

Had Ste, my mum and dad come to visit again today which was lovely. Ste hasn’t been feeling well at all today so it was good to see his face tonight and a big thank you to my mum and dad for bringing him in. My mum bought me a book and Ste got me my slippers and some snacks. I also got to phone the boys which was lovely. I had to fill them in on being back in here but said I was getting some medicine and tests done so they could get me better and they were happy about that. Told them about the camera test in the stoma and their faces were epic! They’d both done their karate lesson and Riley was very happy to tell me he wasn’t told off at all! He also showed me the vegetables they had planted have started to grow and that they had polished off the rest of the Brownie we made at the weekend!

Unfortunately have been struggling with heavy nausea since trying to eat some tea and also lots of pain in my large bowel area (probably following the camera test) so going to try and get an early night. Thank you all again for your continued support. I’m going to write a more in depth post on the Ileoscope procedure once I’m out for those who want to know more but feel free to ask any questions in the comments below.

January Challenge

Good morning and happy new year! Who else is so ready for 2019? I am definitely hoping for lots more positive and happy experiences this year and am ready to get working for them.

December Challenge

I am pleased to say I completed my Instagram photo challenge last month and am rather pleased with my little self! The prompts were great and definitely got me thinking about everything around Christmas. I also was pleased to discover a couple of other great parent bloggers over on Instagram through the challenge. Thanks for hosting The Granthams!

January Challenge

It sounds cliche, but this year I am starting with a fitness challenge. I was definitely wanting to lose some weight prior to Christmas, but thought waiting till after the festivities were over was the best idea!

I have tried not to over indulge too much and have not been a total pig, but after the years of steroids taking their toll, I am heavier than I am happy with and ready to get down to a version of me that I am more content with.

I know many will look at me and say you aren’t overweight, and I understand that, but I am happier when I weigh a little less than I am now and am looking to get back down to 56/57 kilos.

My Weight Journey

For most of my adult life my weight has been pretty consistent at around 50-52 kilos. A Crohn’s flare in December 2013 saw my weight plummet by a stone in just 6 days over Christmas, but at the time I just battled through it as it wasn’t long after my diagnosis and I thought I just had to crack on, as you do! Prior to my ostomy surgery in 2016 I was down to 40kg and severely ill. As I had been poorly for around six months, I didn’t quite realise how poorly I looked during this time. Now I look back at photos and the skeleton shape staring back horrifies me.

The photo on the right is me in April 2016 weighing just 40 kilos and severely ill

Following my hemicolectomy and ostomy surgery, I began putting back on the weight my body had lost and was feeling much healthier. After being used to such a skinny appearance for so long, I struggled with this though too. I remember sharing a photo of me holding my cousins newborn baby and everybody saying that I looked so healthy and so much happier – I felt huge. The constant yo-yoing of weight caused by my Crohn’s Disease had caused me to suffer with BDD.

I HATED this photo for so long and thought I looked massive

What Is BDD?

Body Dysmorphic Disorder is a mental health condition which causes you to worry about flaws in your appearance. These flaws are often minor, or not even noticeable to others. Because I had been poorly for so long and had become used to how skinny and underweight I was, the weight gain I experienced post surgery affected me badly at first, making me think I was hugely overweight. In fact, I was around 56/57 kilos which, although heavier than my usual body weight, was actually very healthy and I now look back on that photo and love it!

Find out more about BDD, symptoms and what to do if you think you have it on the NHS Website

The Goal

Since having a couple of bad flares and rounds of IV steroids, I have developed the ‘moonface’ people often struggle with, as well as an increase in appetite which has caused me to gain a lot more weight. My goal is now to get back down to around 56/57 kilos which was my weight post surgery and where I felt most confident and happy.

Diet

To do this I will be ‘dieting’ to an extent. I eat pretty healthy meals anyway but I would like to stick to a healthier schedule of eating and make sure my snacks are healthier. Having a stoma and Crohn’s Disease won’t make this ease, as I struggle with fibre and have to stick to lower residue foods but I am ready for the challenge and also looking into low FODMAP as a potential thing to try.

Exercise

I have really been falling down on my exercise this last year and this is where I am going to make a concerted effort to improve. I used to walk the children to and from school every day and now don’t have that to do, so I have cut out a huge chunk of my normal daily activity.

I found this on Pinterest and loved the fact it was quite relaxed and you could choose different styles of workouts to fit the theme each day. As I have arthritis many of the workout plans posted are entirely unsuitable, or have certain chucks of them that I have to miss out. I will be swapping the yoga sections fop Pilates as this is very similar and something I already do and enjoy.

I grabbed this from He & She Eat Clean and they do have some workouts for the cardio and strength training days if you would like to have a look!

Would love some exercise buddies, so if you want to join in please pop a comment below – we could maybe start a little chat group where we can keep an eye on how we are all doing and motivate one another. I am really looking forward to this challenge, although we will see if that mentality continues to the end of the month… wish me luck!

Ordering Stoma Supplies

I recently saw a post on Facebook with a lady saying she had finally got around to sorting and organising her stoma supplies.  Unfortunately, it wasn’t the  tidiness that caught my eye – but the sheer amount of products she had stockpiled.  Me and Ste both have ostomies and have nowhere near that amount and I thought I would address why and how we manage our supplies in this post.

My Delivery Company – Bullen

I get my stoma supplies delivered from Bullen.  I have previously written a review on them so won’t go on too much, but find them fantastic!  You can check out my review here

Bullen call me every month so I can place an order.  Sometimes I ask for an extra 2-4 weeks till I order if I have plenty of stock.  They are brilliant and don’t ever forget to call which means I don’t run out.  This definitely takes the pressure off me trying to remember, which is good as I have a memory like a sieve!

How Often and What I Order

So I place an order roughly every 1-2 months.  I normally get two boxes of bags – I use Salts Confidence BE bags and order whichever two colours I am short of.  I change my bag almost every day and get thirty in a box.  I will then order three packs of wet and three packs of dry wipes which are supplied by Bullen.  I get two or three (depending on my stock) each of adhesive remover spray and barrier spray.  I use the Salts adhesive remover and the Trio barrier spray.  I also order a box of the Trio adhesive remover wipes as find this is good to remove any sticky residue when I take off my bag,.  I will also order two or three packs of the Trio baseplate extenders.  There are twenty in a packet so there are ten uses in each as you use two.  I don’t use these every day and so order as and when needed.  I also occasionally use the Brava ostomy powder but I literally only need to get one every siz months roughly as they last ages!  That was one of the things that stood out to me in the Facebook post I mentioned at the start of this post – the lady had about 15 bottles of this which would take years to use, even if you use it every day!  I also get a pack of disposable rubbish bags from Bullens.

I am very grateful for the NHS who supply my ostomy products and feel this system should not be abused.  Over ordering happens so often in the ostomy community and it is something ostomates need to be aware of.  With so many cuts happening we need to ensuyre that this can stay in place, so ordering just the items we need is very important.  I always suggest having a little spare stock, just in case your delivery is delayed for a little while which could be due to a number of reasons (holiday, snowy weather, prescription issues etc).  But please don’t be stockpiling years worth of products – so much can change including the products we use and I hate to see things going to waste.

OstoBuddy App

The OstoBuddy app is an app designed for ostomates to help them monitor their ostomy and supplies.

Check out the OstoBuddy website for links to download on Apple App Store and Google Play

There are sections in the app to document your supplies so you can keep track of the stock you have.  You can enter when you have used products so it is easy to see when you need to re-order and what you need to re-order.  You can also track your output and remind yourself of when you last did a bag change.

It’s so good and helps remind me when I need to change my bag and how many I’ve left.  You can add photos to it to track your skin if it is sore.  You can write down little notes on it too.  The new version that is out now lets you track your output, it’s consistency and the amount.  My memory is awful and this app is amazing and helps me remember when it is time to change my bag, how many bags I have left and when it’s time to order.

Lisa

This is definitely worth a try if you struggle to keep track of your stock and it is free to download.  

Christmas Order Date

Last but not least I wanted to share the final dates to order your stoma supplies to guarantee delivery before Christmas.

Trio Ostomy Care – Wednesday 19th December (UK only)

Coloplast Charter – Friday 7th December

CliniMed & SecuriCare – Friday 14th December

Medilink – Friday 14th December

Bullen – Wednesday 12th December (stoma producst/medication orders) and Monday 17th December (stoma products only)

Respond – Monday 17th December

Pelican – – Wednesday 19th December

I hope this has been helpful and gives you an idea of how to go about ordering your supplies. Please feel free to message or comment if you would like help with anything I have mentioned above and don’t forget to get your Christmas orders in ASAP!