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 :(