10 weeks until stoma reversal

Hey all! I haven't updated in a long time, and there still isn't much new to catch up on. This blog's kinda temporarily on hold for now, until I get something particularly significant to share with you all.

My hair's still falling out (see last post) but the rate of it has slowed down a lot. I feel that it's looking quite thin, but no way near so much as after operation 1. So that's some sort of good news.

I'm now back at university in London, still with my loop stoma in tow, which mostly behaves itself these days (when it feels like it). I can't lie and say it's perfect - whereas my end ileostomy was constantly well-behaved and required minimal thought and effort, this loop is still a bit of a special case. Even after paste, convex bags and a belt it somehow manages to have days where I'll only last half a day with a bag before my skin's being burnt to pieces and I'll have to change it.

I think the biggest difference is that with my end ileostomy, I kind of forgot about it a lot of the time (as crazy as that sounds), whereas this loop is pretty much always on my mind. I do have to plan my routine around it, as sometimes it'll fill completely - unexpectedly - and I'll desperately need to find a loo! I've got more into loose fitting skirts and long jumpers, to hide the ballooning if this happens. It's often super watery and most days I'll feel dehydrated, especially when I wake up in the morning. However, it does pass food through a lot quicker than the end ileostomy, meaning I can eat later before I go to bed without having to wait up - one plus!

If you're facing a loop ileostomy - which is the only stoma you'll get if you have a 2-step surgery - and you'll still need it even if you have the 3 step - it is a bit of a pain in the rear. That said, you usually only have a loop stoma for a very short period of time before having the J-pouch connected, so it's not all bad.

It's my 21st birthday in 2 weeks and I wasn't really sure what to do to celebrate. I'm having a few friends down to London for starters, for a meal and a general night out, then later on in the month I'm going back up to Nottingham and my friend and I are going for a spa day (wooooo!) 21 is a huge milestone, but it seems even bigger knowing what I've tackled these past 2 years and the things I've experienced since being 19. A lot of time's gone by. It'd be nice to wrap this all up with my op at Christmas.

So, what am I most excited about? To name a few things - wearing low-slung jeans for the first time in 2 years, showering? Little petty things I know, but they seem like the holy grail of goals right now ;) I'm also nervous in some ways too - I've heard for years that a J-pouch isn't perfect - but I'd like to think I've heard enough good stories to keep me going.

Very soon, for those of you who receive the CCUK magazine, you'll see my piece on going to uni with a stoma! I'm really excited for it to be published. Hopefully it'll make for helpful and informative reading!! :)

How to cope with hair loss after illness and surgery

I'm now 3 months and 1 week post-pouch construction/loop stoma. I haven't had much new to update recently, and have been pretty busy with this and that.

Last week as I washed my hair, I started to notice large clumps coming away with the water. After a continuous 2 weeks of this, I remembered the hair loss I had after the first operation and realised that the same thing was happening again.

To be honest, I'm gutted. It's taken me nearly a year to grow out my hair, thicken it up and get it just back to how I like it - yet here it is, falling out in handfuls.

Results after only 10 seconds of gentle brushing

To try and jog my memory I scouted out some old photos on my phone today and came across a couple from the last time I lost a lot of hair. I'm dreading it, and it's a big blow to my confidence, but there's not a lot to do except wait for it to grow back over the coming months.

Okay, so on the grand scale of things, losing hair isn't top on the list of importance when you're seriously ill - but it does knock your self confidence, and from personal experience I know I feel a bit like, 'For ****s sake, I've been through all of this, and now I'm losing my hair as well, what a way to wreck my confidence!!' (breaks into wails)

Back in late 2013 in the run up to my emergency subtotal colectomy, I'd been extremely ill with Ulcerative Colitis, and became deficient in lots of different minerals. I'd lost a lot of weight, which resulted in my periods stopping for nearly 8 months post-surgery. I'd also been on high dose IV steroids in hospital, in a last-ditch attempt to save my colon from surgery. And, last but not least, I'd had a general anaesthetic and a major operation. I later read that all of these things, individually, can contribute to hair loss.

At about three months post-op, when I'd actually started to feel a bit better, I noticed that my hair had started to thin. It didn't seem much at first, but it got worse and worse. I'd go into the shower and wash my hair, run my hands through it, and it would come away in clumps. Every time I brushed my hair, the brush would be so full of loose hairs that I'd have to scrape it off into the bin. And this happened day, after day, after day - just as it's been doing this time.

My hair became noticeably thin and straw-like (early 2014)

Combined with the fact that I'd never had super-thick hair anyway, the difference became really quite noticeable. I never went 'bald' or anything close to that, but my hair was so sparse that in places you could see scalp, and so thin that you could see through it. No style worked - tying it up made it look like a rat's tail, but leaving it down meant its thin appearance was stark and obvious.

I searched online and found my symptoms to be consistent with 'telogen effluvium', but never had this confirmed by a doctor. It's a term to describe hair loss post serious illness or trauma. Here's a link for more information: http://patient.info/health/telogen-effluvium

It might be a small thing, but the loss of my hair really started to mine away at my confidence. I remember that once I'd got the hang of a stoma bag, I was wearing normal clothes and from the outside, looked pretty normal. But when my hair fell out, it made me look ill, and reduced me back to feeling low and self-conscious.

Unfortunately, if this happens, the only real thing that solves the problem is time. Hair doesn't grow back overnight. But in the meantime, there's lots of things you can do to make your hair appear thicker, and so boost your confidence (which is what we're aiming for here!)

1) Choose the right products. Treat yourself to more expensive thickening shampoos, conditioners and sprays - you deserve it! I bought a combination of shampoo, conditioner and spray from my salon, which was specifically designed to thicken hair. At £10 per bottle (each!), it felt a bit like I was pouring some precious elixir on my head, but it really did work. Using the products together gave my hair a thicker appearance, and their low level of chemicals meant minimal damage to my already thinning mop.

2) 'Hair volume powder' is your friend! I got really into using volumising powder - which comes in small bottles and looks like talc - and this really made my hair look and feel thicker. Lots of different brands make their own version, and some are better than others. Be inclined to go for slightly more expensive than the cheapest, as these will last longer throughout the day.

3) Shorter works better. Not what you probably want to hear if, like me, you love your long hair, but shorter styles really do add to thickness. Sick of my wispy and thinning ends, I had a load cut off and immediately my hair appeared thicker.

Shorter worked better!

4) Vitamins - PLEASE CONSULT YOUR DOCTOR FIRST. Hair loss can be slowed by taking certain vitamins and supplements, particularly biotin. The best ones that I found were Boots Own 'Skin Hair and Nails', which were a decent price and after a month or so, actually began to make a noticeable difference. I put a lot down to these tablets and found them to be brilliant - but particularly if you have Crohn's disease, please consult your doctor before taking any supplements.

5) A bit of fakery? Before this illness and surgery, I was really anti-hair extensions. The whole idea of it seemed gross to me. But by this stage I felt so down about my appearance that I would have tried anything to make myself feel better. I went and bought some clip in hair extensions (temporary, removable and cause minimal damage to hair if used correctly). Seriously, they were the best money I could have spent. They weren't even that pricey, yet they made me feel a million dollars.

Before extensions

After!

6) Find a hairstyle that works. I eventually took to wrapping my hair on top of my head and fastening it with a 'biting' clip. This meant that no tail was hanging down to look thin, and I could arrange the hair to cover thinner areas that showed scalp. I actually grew to really like this hairstyle, and still use it now!

The hairstyle that in the end became my signature up-do!

It took about 6-8 months for my hair to fully grow back, but when it did, it was actually thicker than it had ever been before! Now, I'm crossing my fingers that it'll work the same, and trying to keep my chin up, although I can't help but feel quite glum that I'm losing my hair :(

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!