Summer

I’ve been meaning to write for a while but I’ve found it hard to find the words.  I’ve missed writing though, so here is a little update on what’s been going on.

As summer approached I decided to bite the bullet and begin running again.  I’d mooted the idea for a while but it took me a little longer to get going than I’d planned.  My first idea was to run/walk round the park a few times,  and then do some body weight exercises in between.  I soon realised that this wasn’t as easy as it sounded.  Over the next few days, my body felt like it had done a few rounds with Mike Tyson and I had a series bout of DOMS!

I also felt really tired after my thyroid operation.  However, buoyed by some encouragement, from people on Twitter, I decided to embark on the couch to 5K app. I needed some structure to my training.  As soon as I began the programme, it began to bring me joy.  Exercise has always been such a big part of my life, but for so long I’d had to put it on the back burner. Sure I’d been out on lovely walks with friends, but I realised that I’d missed the simple pleasure of being able to put a pair of trainers on and go out for a run.

Initially you only run for short bursts in between bouts of walking but I loved being outside again, saying hello to fellow runners or people walking their dogs.  I remembered how much my mental health is connected to being active.  Those endorphins running through my veins.

It takes a tiny bit more organisation to go running now.  Because of my stomas, I need to take on food before I drink any fluids in the morning.  This is because there is nothing to stop the liquid running straight through me if I don’t line it with some food, first.  This means breakfast is a must.  I enjoy exercising first thing anyway,  but I find it better now, because it’s when my stomas are at their least active.  I don’t have to dress any differently apart from wearing stronger and tighter underwear to keep the stomas in check, but once I’m out and about and running, I don’t think about them at all.  I can then come home, shower and change my stoma bags for the day ahead.

Ironically, It would, of course, turn out to be the hottest summer on record for a number of years.  This brought its own unique challenge for me.  Because my ileostomy is high output, I have to be particularly careful that I take on enough fluid every day.  However I also have to balance this up with drinking the right type of fluid.  If my ileostomy output is high then it will directly impact on my hydration levels.

Add in to this equation, the levels of humidity we were having, plus the exercise I was doing,  I was naturally dehydrating myself too.  Normally of course, we would just drink lots of water.  Except in my case, the more water, I drink in this situation, then the more it can actually dehydrate me.  Instead I have to drink more of my St Marks drink… a drink made up of glucose powder, salt and bicarbonate of soda in a litre of water, flavoured with some squash.  The glucose aids the absorption of the salt which my body needs to balance the levels of water in my body.  Water would simply go through me.

I think this is why I felt particularly proud of myself when I began to run some more.  Here I was with two stomas, one being a very active one,  running in this heat.  I looked the same as everyone else, but I knew what an effort it was to keep going.  The old me, would never have run in this heat,  but I’ve always enjoyed a challenge.

I had to take a break for a couple of weeks, just as I reached my final week.  This was because I had my radioactive iodine treatment for my thyroid booked in.  This all went very smoothly.  I was fortunate because I only had to be given a low dose, so I was only in hospital for 24 hours.  There were another two patients who were in for 3 days.  Probably, the worst part of the treatment is being placed in isolation for the duration of your stay, but it really wasn’t too bad as I had my upper hatch of the door (just like a stable door!) open, and I had a really good book to keep me company.

I also made a new friend in hospital too.  During the two days before treatment began, I had to go up to the Fulham Marsden for some pre treatment injections where I met my new friend and her husband.  We ended up having rooms opposite each other and would stand and put the world to rights over a cuppa.  We’ve stayed in touch, as she lives locally, and have already met up for another catch up.

My follow up treatment a week or so ago went really well.  There was no real uptake in my thyroid which is positive as there looks to be no cancer left.  For the next two years, I have to return hospital every three months so my bloods can be taken and my thyroxine levels measured.

A couple of weeks after my treatment, I completed my couch to 5k programme and have since run two park runs.  I’m hoping that at some point I can hit 30 minutes for a 5k run.  I’m around the 32 minute mark right now.  But there is no real pressure, it’s just lovely to run again.  I’m now concentrating on a strength and conditioning programme which my fantastic PT has given me.

I’ve had an amazing summer.  I’ve been able to holiday in France for a few days with friends, where I went swimming for the first time.. no issues,  and to Edinburgh for a few days to see family and to enjoy some of the festival.  I’ve been to Wimbledon and up to Yorkshire for a lovely catch up with old school friends. It’s been action packed and fun filled.  I feel a little more like my old self, the more time goes on.

However I’d be lying if I didn’t admit it’s not all been easy.  The dietitian had warned me that I’d feel the difference once the summer came, and of course, she wasn’t wrong.  I’ve really had to watch my fluid intake, making sure I drink the right kind of drinks and as the heat increased,  been even more careful not to drink too much squash or tea ( everyone who knows me well, will realise how difficult this is for me).

There are ways around not having to limit your normal drinks as much, such as upping my loperamide, which I also take to slow my bowel down, but it’s sometimes difficult to manage, and I miss the spontaneity of being able to drink what I want, when I want. I’m sure my feelings of anxiety about becoming dehydrated will lesson as time goes on, but having experienced at first hand how awful dehydration is,  I’m determined not to go back there again.

The levels of thirst I’ve sometimes experienced is off the scale.  Despite knowing it’s not really how I should be behaving, I’ve found myself becoming addicted to a daily ice lolly or eating fibrous fruit rather than drinking yet more St Marks.  Sometimes you just have to act out!

I also began to experience issues with my urostomy bag leaking.  This was quite a shock, because this hadn’t happened since I had begun using my current bag.  Why was this suddenly happening again?  Leaking bags is a time when I feel particularly lonely.   It’s as hard for friends to identify with, as it is for me to explain why it’s upset me so much.  Personally, it’s not the practicality of changing the bag that concerns me, it’s the fear of it happening again, and the unpredictability.

I find it more difficult to sleep because my body is primed for another leak and I find it hard to settle.  One particular difficult time was when my bag leaked during an unexpected stay in a Toulouse hotel, when our flight home was cancelled.  Fortunately the leak took place in my hotel room and there was no real drama,  but I then had to navigate a flight across to Paris and a Eurostar train home.  Mentally, that was quite challenging.  I managed it though and made it home with no further leak.

Fortunately,  I have two fantastic stoma nurses.  Tracy has been a stoma nurse for 20 years.  She was able to advise that it was probably the heat that was affecting my bag.  That and the fact that our urine is stronger in the summer.  She told me that whilst my bag was very good, the absorption levels could be affected in warmer weather.   As always her words helped reassure me, and as the weather has cooled, so I can feel the difference again which is a huge relief.   So perhaps, going forward,  I may need to use slightly different bags in the summer.  But at least I have a rationale for the leaks and that helps me a lot.

Although there have been challenging times,  I really feel my summer has been a positive one.  I’ve got my regular scans due next week but apart from that I have no more treatment ment planned or needed.   It seems amazing that 2 and a half years on,  I can look forward to a new life.   I’m excited for the future and have lots of plans to help me move on.  But I’ll save that for another day.