Outdoor activities with an ileostomy

It's now less than a week until I trek off to Staffordshire to spend a week volunteering at a kids activity camp! The camp is for children with illnesses and disabilities, and gives them a chance to spend a week having fun without the main focus being on their condition. I can't wait to get involved! My week at camp will be full of activities, ranging from den building to climbing, swimming to abseiling, and time spent in the outdoors.

Besides this, I've always loved outdoor pursuits. My hometown is really close to the Peak District, meaning I spent a lot of my childhood out there walking. I live in a village anyway, so the countryside is a real love of mine. Over the years (and before I was diagnosed with UC), I completed Bronze, Silver and Gold Duke of Edinburgh Awards, and even a 2 week alpine trek to Switzerland and Italy. I've always gone climbing, biking and hiking, and the outdoors is one of my greatest loves.

When I was diagnosed and had my emergency stoma surgery, I initially thought my outdoors days were up - or at least seriously limited. How was I meant to exist out on the hillside with not a toilet in sight? Would a climbing harness fit me with a stoma bag? Would swimming even be an option?

Actually, none of this has been an issue. Since my surgery, my outdoor pursuits have continued without any limits whatsoever.

Brecon Beacons 2015

At uni, I got involved with a local DofE group and have started to train as a supervisor, taking a group of Golds out on their practice expedition to the Brecons. This trip involved wild camping, with limited access to bathrooms of any kind (even on campsites!) We walked long distances of over 10km each day, for 8 hours at a time.

The good news with a stoma is that you don't need some massive facilities to change it - just bring your usual kit with you (in a waterproof, sealed bag, to keep things from becoming damp) and you can even change in a tent if you're feeling confident enough (been there, done that). Dealing with a stoma while out in the countryside revolves largely around watching what you eat - avoiding a large breakfast, for example, can mean you'll go a long while before needing the loo.

However, you've got to balance this with getting enough energy to hike safely - being starving isn't healthy for a long walk - so consider something like a banana, or cereal, which is small but pretty filling (and also slows down gut transit). Drink plenty of water and carry rehydration salts (dioralyte) just in case. Wear loose clothing, in case of 'ballooning' - if others can't see it, it doesn't really matter anyway. Take imodium plentifully! I always take a huge supply. If the situation becomes really urgent, there's always the option of a wild empty (take hand sanitisers etc in case).

I also went away several times with a certain like-minded person (also very into camping) and together we've been around both the Peak and Lake Districts. Again, camping is no issue with a stoma, the only issue I ever found being getting up at night - a lot less appealing if you're trekking in the dark to the toilet block at 3am in the rain. If you can put up with that for the sake of the beautiful countryside, then you're all good.

I've done climbing since my op, but always wear a hernia belt - I think I always will do, for the fact that my scars put me at higher risk and it's an activity involving a lot of stomach muscle. It's still perfectly possible, however, and the climbing harness is no problem at all!

Swimming (as I've covered before) is perfectly fine too. You can get extender strips of tape for extra waterproof security, but they're not even essential. Your bag is designed not to come loose under water, and there's no more chance it will in the pool than it would elsewhere.

Of course, on camp we'll be staying indoors, not camping - but there'll be lots of activities going off. On a recent holiday with a friend, we even went indoor caving - which included crawling through tunnels on my belly, squeezing through little spaces - and I still had no bother. If that doesn't cause me an issue, I don't think anything will.

Night hike 2015

Although there's some advance planning needed, outdoor pursuits with a stoma shouldn't be much different to pre-surgery, and life certainly shouldn't be put on hold. It's likely you'll feel a lot healthier after surgery than you did during the UC days, and it's great to take this opportunity with both hands. 

Because, let's be honest, for all the wild emptying/3am toilet block trips in the rain, I wouldn't give up this beautiful view!

Pouchogram - fantastic news!

Yesterday, I had my 'pouchogram', an x-ray to check my new pouch for any leaks. A good result means I'm ready to have the third and final operation: the stoma reversal!

Although I knew what I was here for, I was still slightly surprised when the nurse asked me to strip starkers and change into a surgical gown! I went into the x-ray suite and laid down on a bed with the machine lowered over me. The doc (watched by a trainee!) then stuck a tube up my bum and pumped in a clear solution that allows the pouch to be x-rayed.

I was told to lie in several different positions. It was slightly uncomfortable (a stretching sort of feeling, and some mild gas pain) but otherwise painless. No dye came out into the stoma bag. I could see the x-Ray of my pouch on the screen above my head - pretty interesting! I saw it fill with dye, empty, and could even see tiny lines around the pouch outline where he edges had been sutured together.

All the time the doc was telling me to clench (lol) to stop the dye leaking back out - and not a drop of it leaked, giving me hope for future continence post-reversal!

From what the radiologist could see (although a consultant needs to confirm it), my pouch is 'very secure' and has no leaks whatsoever! This is such a fantastic result and puts me in a great position for the reversal.

I see the surgeon again on October 4th - but for now I'm really delighted! :)!

2 days until my 'pouchogram' - well that escalated quickly!

Last Friday, I saw my surgeon to discuss my third and final operation, which is booked for December 15th. He mentioned I'd need one more appointment plus a pre-op, but I'd also need a 'pouchogram', an X-ray type procedure which checks whether the pouch is completely healed (with no 'holes'!)

Well, he said it would be sometime in August, and he wasn't kidding! This morning I already got the phone call asking me to come in on WEDNESDAY for the procedure!

From what I've heard, I'll have something stuck up my bum to inflate the pouch, pump it full with dye and then x-rayed for leaks. Sounds really pleasant (not), but it needs to be done to make sure my pouch is all ready for connection.

It's pretty exciting too, because this will be the proof whether or not operation 2 really went successfully. Once this procedure is complete, my pouch is all ready to be connected - and it would be happening sooner if it wasn't for going back to uni.

I'll be posting more as this develops! :)

It's official! 4 months til I'm bagless

So yesterday I was back at the hospital seeing my consultant, who gave me a date for the third and (hopefully) final operation I'll ever have for IBD - the reversal of my loop stoma and connection of the J-pouch. After this operation, I'll be using the loo 'regularly' again and will no longer have a bag.

It's 15th December this year, meaning that all my surgery should be done in time for 2016!

I have to admit, I'm really excited. Coincidentally, 15th December marks almost exactly 2 years since my IBD journey began - as it was 16th December 2013 when I was rushed into hospital and first diagnosed. It seems pretty fitting that the journey will be ending almost the same day that it began!

Although the pouch inside me isn't functional or connected, my experience with it so far has been promising. A lot of people worry about the potential for leakage with a J-pouch, but even though the pouch is already producing mucus (about as liquid as things get) I've not had even one occasion of leaking or urgency. I'm taking this as a good sign. I've also started doing cautious 'kegel' exercises again, though not too many.

So, what am I most looking forward to? As positive and as upbeat I am about my stoma bag, and as much as it doesn't limit my lifestyle, I won't be sorry to wave it goodbye. When I was first told in late 2013 that I'd need a stoma bag, the potential for reversal in the future was like the light at the end of the tunnel that I desperately clung onto. As time went on, I realised the stoma wasn't so bad, but I still looked forward to my reversal. Having the second operation was 'the point of no return' for me - when I've got a pouch already made inside my body, why not try having it connected?

I'm looking forward to not having to wear support underwear every time I want to wear a straight skirt, being able to wear a bikini, crop tops and low-rise jeans (it's funny how most of the things I look forward to most are related to clothing!). I look forward to not having to carry around stoma supplies, or ordering them every month.

Other than these pretty superficial reasons, I think I'm most looking forward to closure. Having my stoma reversed will be like the end of a journey - one that's gone on for nearly two years.

And what am I nervous of? The uncertainty, the potential for leakage, pouchitis, frequent toilet trips or even further surgeries. The fact that one day I may struggle to conceive a baby, or give birth naturally. I knew these were the risks when I had the operation done, yet I still wanted it. At 20, I weighed up the positives and negatives and decided that the pouch was the better option for me at this stage of my life. So whenever I have a doubting moment (and yes, there have been a few, particularly after op 2 went all wrong!) I try and focus on why I had this done in the first place.

But even though I won't be sad to see it go, these past two years have shown me that a stoma is by no means a bad option. I mean, my reasons for getting rid of it are pretty superficial, right? I don't think a stoma is what anyone dreams of, but it hasn't stopped me living my dreams (ugh, too much cheese?) No, but seriously. I've done so much when I've had a stoma, and lived life so fully that I probably couldn't have done the same if I'd been suffering with severe UC.

Quite a lot of the time, I've even forgotten that it's there. I don't wake up every day and think 'oh here we go again, having to change this bag' any more than I wake up saying 'oh - brushing my teeth - not AGAIN'. It's literally one small part of my life and routine. No big deal. Yes, it took me a long time to see it this way, but I got there, and it was amazing when I did. I am so much more than how I use the loo. And so are you, lovely readers. Don't let any condition cloud who you are.

So over the next few months, I'll be documenting the exciting things happening up to the final surgery, including my pouchogram (inflating my pouch and x-raying it for leaks) among other check ups. As with the second op, I'm writing literally as it happens, and documenting the most honest account that I'm able to. Thank you for all your continual support!

Less than 8 weeks after surgery, life's not all about my ostomy!

Hey all! As you've maybe noticed if you've been following the blog, I've been away for longer than usual since my last post. Life's really back to normal now in every way, and I've been so busy that I've barely touched my computer. To think that less than 8 weeks ago I was in theatre having surgery, I'm proud of how far I've come!

Big things that have happened since I last posted:
- I've returned to my old part time job, and also started a new day time job, so I'm now working both!
- I've started driving again
- I've been on several nights out, include staying away from home in different cities not easily in reach of my own house
- I'm now eating everything again, including all the stoma 'danger' foods e.g. sweetcorn, popcorn and nuts
- Writing an article for the Crohn's and Colitis UK members' magazine. Watch this space!

Nearly 8 weeks ago!

And now (back in the driving seat - but not actually driving taking this!!)

When you're seriously ill, it's sometimes almost impossible to imagine a day when you'll be able to get back to normal. In the early weeks after surgery, I felt weak, tired and wasn't comfortable leaving the house because of my stoma issues. Even though I'd been through this all before with operation 1, operation 2 was a lot tougher than I imagined and really set me back.

But when you start to feel better, you'll progress in leaps and bounds. Getting yourself out and about and achieving little things each day all helps to build your confidence with a new stoma. Over these past few weeks, that's exactly what I've been doing - and most of the time, being ill is at the back of my mind.

It obviously helped having an end ileostomy for 17 months before, but I'm now very comfortable with the loop ileostomy and often forget it's even there. When you first have a stoma made, it seems laughable to suggest that you'll ever be able to forget about it, but you really, really do. After enough time goes by, caring for a stoma is just another part of your daily routine, as easy and quick as brushing your teeth or having a shower. One day, you'll realise that you haven't actually thought about your ostomy for hours at a time, and that's a brilliant day for your confidence.

Leeds Pride 2015!

On the topic of living life without thinking of your illness, I want to talk about something amazing that I've been lucky to get involved in this month. Earlier this year, I applied for a place to volunteer at an Over The Wall summer camp. (www.otw.org.uk) Over The Wall is a charity that runs summer camps for children with severe illnesses and disabilities. In a week at camp, the kids can meet friends, take part in activities but most importantly have fun without thinking about their condition. When I heard about it, I thought it was an absolutely lovely idea and couldn't wait to get involved. After completing an online application, an interview and extensive criminal record check, I was thrilled to hear that I've got a place at a camp based in Staffordshire at the end of August.

What attracted me most was the idea of living besides your illness. All through my IBD journey, I've tried to keep life as normal as possible - going back to university, going out with my friends, doing everything any other 20 year old would do. For the kids at the camp, I think it's amazing that they're given an opportunity to spend a week having fun and getting away from hospital appointments and discussions about their health - doctors are on hand at the camp, but they only step in where necessary - the rest of the time is devoted entirely to having fun. 

I go away to camp on the last week of August, and I absolutely can't wait! I'll be in a team of kids and volunteers and we'll have a really brilliant time!

Oh! And on Friday, I also find out the date of my final operation, which will probably be in December. Exciting stuff!