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 8 & 9 – Monday & Tuesday

I’m at the point of losing track of days and it seems to be suddenly flying by. Each day sort of mingles into one as it gets so repetitive and a mixture of tests, medication, pain and sleep.

Gastroscopy Test

On Monday I had my first ever gastroscopy test – where the camera goes down your throat to check out your stomach. It certainly wasn’t pleasant but the doctor kept me well topped up with sedation which meant I was pretty woozy and ok. I will write more information about the actual test and procedure once I’m out for people who want to know more or may be going for one themselves as you might find it useful to read a patient perspective.

The scan went ok and they rules out any ulcers etc on the inside of my stomach which is good. I was diagnosed with GERD and have a ‘lax scphincter valve’ but I already know I suffer acid reflux so this wasn’t surprising.

My stomach is still pretty distended and painful so the doctor is still on the case and may still want to bring the surgeons in for a look.

Humiliation

Nothing like a stay in hospital for that. On Tuesday I’ve had to go onto a fluid balance and now have to wee and collect my output in pots and then get the nurses to measure it. One saving grace is I’m back in a side room with a private bathroom so no communal toilet. It’s mortifying having to call them and watch them collect it though. They are so good about it but it must be an awful side of their job.

Cannula Count – lost count

What a day Tuesday was! My cannula had expired and was starting to show resistance when used as well as becoming a bit sore so they took it out. A phlebotomist came and gave an attempt at a new one but didn’t have any luck so called a doctor. He also tried a couple of spots but was unsuccessful so I’m now the owner of a horrible foot cannula. Although it’s a nightmare for moving and things, stuff is flushing through it well so I don’t want to moan.

Low Levels

My phosphates are still low so having to down that lovely drink every tablet round but my potassium now keeps doing the same. I had some put in my fluid bag Sunday but on Tuesday they said it was still very low and I had to have both the drip and a drink of the stuff. Disgusting! Good job we get used to having to swallow these awful prep type drinks a bit really, I think I’ve become desensitized to the whole thing.

Depending on where your Crohn’s is active can also alter levels in your body like this. Where I had the problem prior to my surgery in April 2016 I was suffering from low protein – as the area responsible for the major absorption of that was all inflamed and not working properly. Malabsorption is common in people with IBD so it’s always handy to ask your GP to check these types of thing if you aren’t feeling right. Supplements may be prescribed or things may just need to be adjusted in your diet if possible.

Food Diary

I wish I was more excited about this segment but food has become a bit of a chore to me. Anyone who knows me.knoes how much of a foodie I am but when I eat at the moment it causes more uncomfortable swelling, pain and nausea/sickness. I’m back on straight low residue so no longer have to stick to smooth or runny foods only which is a bit of a blessing.

My mum came to visit while I had my gastroscopy Monday which was a shame as it meant I didn’t get to see her. Both her and Ste stopped by yesterday though – Ste came straight over from the train looking shattered but it was so good to see him. My mum bought me in the pancakes my Dad got for me and they even sent in lemon juice, sugar and white chocolate dipping sauce! They really are the best parents but I’m definitely going to be redoing Pancake Day once I’m out of here! What did you have on yours? Let me know your favourite toppings in the comments below.

Really hoping for home soon so need to get a good plan in place now. I’m very homesick and feeling very meh! Apologies if that comes across as rambling and moaning in this post, my next one will be better (at least I hope so)

The Hospital Diaries Day 4 & 5 – Thursday/Friday

So apologies for not having caught you all up yesterday but it’s not been a great couple of days and I’m sure you understand. The pain and nausea/vomiting have become pretty relentless and even the medication isn’t relieving my symptoms to the point of comfortable at the moment for the most part.

Update

So far there have been no more tests except blood tests. It looks like this weekend I will be having a barium scan to check for motility through the bowel and any possible kinks and narrowings that the CT may have not picked up. There’s a chance I may need some stomach biopsies done next week, but they are trying to follow the least invasive routes first which I appreciate. I’m not going to go into what if’s and possibilities as they don’t do any good, so will just let you know if something comes up and I’m ready to share. I hope you appreciate that at the moment!

Cannula Count – 4

Another one bites the dust! Luckily nothing terrible happened to it this time but as it had been in since Monday evening, I needed a fresh one. New one is in the back of my right forearm and seems to be holding up well so that’s good!

Cannula 4

Food Diary

I’ve been asked to stick to low residue, runny foods so basically on a diet of soup, custard, yoghurt, jelly and ice-cream. Sounds heavenly, and it is, for a few hours! Eating is very painful, even getting a cup of tea down kills my stomach but I’m also so bloody hungry!

Lunch (Friday)

They do have me on pretty much constant IV fluids now to keep my hydration up. Stanley seems to be waking up slowly but it’s difficult to know whether it’s just because I haven’t eaten properly or not. Am measuring input/output so we will see how he goes over the weekend.

Room Change

The dreaded announcement – we need to move you to a bay came Friday afternoon. Luckily my mum was visiting which helped so she could keep me sane. I’m not adverse to sharing (depending on who with I suppose lol) but with a stoma and measuring output etc, it can be very intimidating and embarrassing to share a bathroom. It’s pretty quiet in here though and the nurses did find me a fan as I’m not near the window!

Keeping Busy

I’ve bought a puzzle book and a Take A Break magazine (which I used to sometimes help my Grandma do, happy memories) and have my cross stitch, notepad and books. I’m currently reading the new C. L. Taylor thriller I was kindly sent to review and (spoiler alert) – it’s great! Cross stitch has been good to concentrate on as it really helps take my mind off the pain and nausea. I’m thinking of sharing some of my designs soon so keep your eye out on my social media channels as pictures will probably go up on those first!

Today I’ve had my mum and brother Adam to visit. Ste is back in Halifax now so we have chatted on the phone. It’s hard and I miss him being so far away but it’s just one of those things we have to deal with!

I also have a couple of pieces of good news to share here with you. I’ve been featured in this month’s Ileostomy Association magazine talking about the Salts Healthcare Confidence BE bags which have been a game changer for my ostomy care routine. I will also be doing my first speech at an IA event at the end of the month. There is a full day of activities and talks planned for Saturday 30th March in Birmingham and anyone interested in joining us, it would be lovely to have you! The event is ticketed and costs £10 which includes refreshments and lunch. Please feel free to ask any questions or comments and I will endeavour to let you know or find out the answer if you are interested in coming. Be so good to see lots of you there!

Going to leave this on a positive note which is good, will catch up very soon!

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.