Happy weekend everyone – I really hope you are all enjoying yours more than I am stuck in here.
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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)
Weekends in hospital are generally the worst. Unless there is a plan in place to go home, nothing much happens unless there is an emergency.
Stanley Stoma seems to have woken up which is good so they are pretty satisfied that the CT which showed no kinks or blockages along my small intestine was correct. They are hoping the manipulation of the structure behind my stoma will continue to ensure things can pass which seems to be the case at the moment, although my output is still only water and mucus. I’m now awaiting gastro back to talk about my stomach and where we go from here with the awful pain, nausea and vomiting which has been pretty hellish all weekend. Pain meds are helping take the edge off but once I eat anything it makes it a million times worse. I’m so hungry though and obviously need something inside me to function!
Both phosphates and potassium are low so I’m having a horrible phosphate drink. Luckily, the potassium has gone into my drip bag… Could not stomach that drink, especially already being nauseous!
When the surgeon came and saw that my stoma was working better in Saturday he’s upgraded my food thank goodness! I still can’t eat much but it’s nice to have a little more than chicken soup, ice-cream, jelly and yoghurt! Being able to have a biscuit and a cup of tea in the evening is like a dream! The low residue menu diet still isn’t great here but as I can’t eat a full meal anyway I am able to pick off the safe foods to eat.
Cannula Count – 4 and 2
This one has continued to work for the weekend well which is good. I have had a couple of subcutaneous cannulas in for my morphine pain relief to save me getting stabbed every time they do it. Turning into a pin cushion between those, daily blood tests and blood clotting injections!
Normality is a funny old concept really isn’t it – everyone’s perception is different but we don’t always think like that. As someone with a chronic illness (or few) my reality will be very different to many though. I have different abilities, expectations, goals and needs. This weekend I’ve missed MY normality. Being able to go make myself available cup of tea, put some washing on, do the ironing, have a nap on the sofa. I don’t want to get out and do anything extraordinary at this point… I just want to be home!
Have had Mum and Dad visit both days over the weekend and on Saturday they bought me some new PJs, underwear and fluffy socks which was lovely. My mum is an absolute diamond and I don’t know what I would do without her to be honest! She has cut my toenails and washed my hair for me this weekend. Two jobs I couldn’t manage myself and she did them. I’m so lucky to have parents who really help and care. While we pamper, my dad goes and fetches the Costas so is also very much appreciated too! My Aunty and Uncle also came in yesterday with some more puzzle books yesterday to keep my brain busy and made me laugh which was definitely needed! My stoma is a great source of hilarity in my family but I wouldn’t have it any other way. Everyone is so supportive and if you don’t laugh you cry, right?
I’m hoping that Monday will bring round some more plans and see what we can get sorted so I can get out of here! Will keep you updated as always,