This was a couple of minutes after standing, walking about five slow steps and sitting back down again.

To answer @bendywarrior ’s questions, it is much lower when I’m laid down (between 70 and 90) but this is normal for me if I’m standing or sitting down. It does slow slightly if I go from standing to sitting sometimes too.

I don’t remember if I’ve already mentioned this but I’ve had an abnormally high resting heart rate since leaving the hospital at the beginning of April. (And by high, I mean consistently higher than 110bpm).
I have since spoken to my GP and had a blood test to check my potassium levels, which came back fine, as well as an ECG. The ECG showed a regular but high heart rate of around 90-100 so they’ve referred me to the hospital out-patient cardio clinic to have another type of ECG (the proper name of which escapes me) where they put goop on your chest and use a scanner to watch your heart beating. Fingers crossed they’ll figure out what’s causing it. I’m still on prednisolone, which I know can cause a rise in heart rate, but it’s never been this high before. I’m hoping it’s nothing serious. Someone from IBDSuperheroes has suggested it could be the beginnings of POTS so I’ll talk to the doctor when I go for the ECG.

Travelling with an ostomy

So, I recently had my first overnight trip since having a stoma and I thought I’d share a couple of things that I learnt on the way about travelling with an ostomy.

First things first; Packing. I’m always worried when I have to stay overnight somewhere in case I don’t pack enough of something or completely forget to pack the thing altogether, so I tend to make a list of things I’ll need. The list consisted of the usual “underwear, socks, toothbrush” ect. but this time, I had to consider how many times I’d need to change my bag whilst away from home. I change my bag every other day and, thankfully, it worked out that I’d only need to change my bag once while away. However, me being me, I didn’t just pack one bag. No, I packed three; one to change into and the other two were spares. I realise this was a little excessive but the last thing I wanted was for my current bag to leak or get damaged and be unable to do anything about it. So, my advise on this is always bring spares. Even if you’re only staying one night, bring spare bags and cleaning supplies. I’d say for a longer stay, pack twice the amount of supplies you expect to need. That way, if something goes wrong (you’re flights delayed, you missed the last train ect) and you have to stay longer, you know you won’t run out.

Second is emptying your bag before you set out. We travelled by train for this trip and the journey was around three to four hours each way with one change. Knowing that on-board toilets are usually small, cramped and, a lot of the time, unclean, I didn’t really want to have to empty my bag in one. So, I made a point of emptying my bag before we left to go the train station. Obviously, I couldn’t avoid emptying my bag at least once during this trip so I made sure to check we’d have enough time between trains for me to go the toilets at the station. Thankfully, we had about half an hour until our connecting train arrived. If you can, this is probably the best time to empty your bag because then you won’t have to worry about it during the next stretch of your journey.

Something to point out; some UK train station will charge you something like 20p to use the toilets but the disabled ones are accessible with a Radar Key. It is also worth noting that the disabled toilets may not be as clean as you’d expect. I found this out the hard way; someone had had an accident and no one had got around to cleaning it up yet. So, the moral of this story is if you can use a normal cubicle to empty your bag, it’s probably worth the 20p to not risk getting someone elses accident on your shoes. 

Thirdly, take an emergency kit with you wherever you go. I have found I feel a lot more confident when I go out because I know I’ve got my emergency kit with me. It’s not a big kit, consisting of a bag, cleaning supplies and a compact mirror. All of this goes neatly into a make-up bag that, in turn, fits nicely into my handbag. It’s discreet and gives you peace of mind, if nothing else. I’ll be sure to make another post about exactly what I’ve got in mine.

Lastly, travelling abroad. I have yet to travel abroad with my ostomy so I can’t really give advise on this one. However, there are loads of articles and tips available online. If in doubt, ask your Stoma nurse or GP before booking anything. Happy travelling!

We’re on our way to Milton Keynes for a friends wedding.
This is the first time I’ll be staying elsewhere with my ostomy bag so I’ve made sure to pack extra bags and stuff, just in case. I’m looking forward to the next couple of days even though I know I’ll be worn out by the end of it.

1st day out on my own

I made it out to town on my own today! I needed to run a few errands so I figured I see how much I could do without pushing it. I’m taking a break in Costa at the moment because my hips started aching but I’ll be heading home soon anyway.

I went out with my stick, of course, and I thought I’d be more self-conscious with it but actually I’ve been ok. I’ve gotten a few stares from the odd passer-by but no ones commented or anything which I’m very grateful for; I’d rather not have to explain my situation to complete strangers.

My first day trip… sorta

So, I finally left the flat and went to a public place today for the first time in over a month! The only places I’ve been to since getting out of the hospital were back to the hospital to collect my meds and to my doctors to have stitches removed. It felt good to go outside and be somewhere that wasn’t medical, and where I could feel more normal.

I had a really nice Eggs Benedict (pouched eggs and bacon on an breakfast muffin) with tea, followed by a chocolate muffin. I am so happy to say that I could eat all that! A couple of months ago I wouldn’t have been able to eat any of it for fear of it causing me major pain and several dashes to the bathroom.

Although this whole stoma/surgery thing has been pretty scary and a bit of a steep learning curve (and still is), I am glad I had it done. I’m no longer in pain after eating, I don’t have to dash to the bathroom (making sure to take my phone because I know I’ll be in there for a long time), and I can eat most foods that I couldn’t before. There are, of course, some restrictions on what I can and can’t eat with my stoma, but nowhere near as many as before. 

It’s odd, but this surgery really has given me a new lease on life. I know I’m still recovering and need to take it slow to ensure I don’t overdo it, but I can feel myself improving, if only a little, each day.

Went for a little walk today and was wished “Good luck” by a complete stranger when he stopped and asked if I was alright because I was walking slowly and holding my tummy. Small amount of faith in humanity restored.