Geeky & kind of gross

But whenever people are listing the "pros" of having a stoma, I find it difficult not to suggest:

"Who else can watch and touch their intestines?"

:D

Managing sleep

I haven't posted in a while, but this is largely due to the fact that very little has changed with either my stoma or my lifestyle. Generally, things have been great: I'm back at work full-time, I don't have much trouble with food, and my stoma is now thoroughly normal for me. I couldn't pin-point exactly when it was, but at some point I stopped thinking about it so much and my affection for and appreciation of it has grown.

Unfortunately, one thing that hasn't gotten back to normal is my sleeping pattern. I just can't consistently sleep for more than five hours straight, which is a problem for me - someone who generally needs at least seven hours.

The result? I'm grumpy more often. I sleep on my commute, to try and make up the hours, but only end up being bitter at having to give up my valuable knitting or reading time just because my stoma decided to continue to be active well into the early hours. I've been having to work at home more at short notice, just to try and stay awake and get some work done. Not ideal.

A lot of the forums and websites that I looked at seemed to say that it was just something that you learn to cope with or work around. Well, I've tried that for a while and I honestly don't feel like I'm being the best that I be. I'm sure that this problem can be solved! And so I asked around, gathered various suggestions, and set about trying them out.

1.  Not eating after 7pm

I've noted before that this helps and it does. Ideally, I'd eat my main meal of the day at lunchtime, but that would mean having it away from my husband, which isn't great (or cost-effective). Unfortunately, it's not a guarantee that my digestive system is going to be done before bedtime. Since I've started eating more healthily (more vegetables, finally!), I've found that food can take anything between two and twelve hours to go through. Doesn't make planning bedtime easy!

2.  Eating a less adventurous diet

Mashed potato (not chips), bread and cheese go through my system in a very standard, easy fashion. They're predictable. Unfortunately, they're also not that great for feeling healthy; especially not if that's all you're eating. I - somehow! - managed to mainly eat this stuff for the past 18 months, but now I'm starting to crave vegetables and salad, and notice how much energy I have if I eat better (always chewing properly, of course!).

3. Loperamide/Imodium

My Occupational Health doctor and stoma nurse both suggested that I try taking loperamide or codeine to try and slow my digestive system down during the night. I avoid codeine, because I took lots of it during my big flare and don't like how it masked so many problems.

So, loperamide. Results were inconsistent and I found it difficult to match a dosage to whatever I'd eaten for dinner. One day I ended up with what felt like constipation after just taking two tablets, which was rather painful and - ha! - kept me awake!

4.  Changing to a 2-piece bag

This is my latest attempt and, so far, I'm pretty impressed. My stoma nurse originally suggested that I change to a 2-piece because I was having trouble fitting my bag to my stoma when it's longer, but then I realised that another benefit of having a 2-piece is that I can change the bag before I go to bed, thereby starting my night with a new filter and avoiding a build up of gas in my bag. 

Wow. I'm liking this system! Up until last night, when I had to wake up for other reasons, I had my first three consecutive nights of uninterrupted sleep (that's right - over six hours each!) in over a year. I really hope that this works long-term. If it does, it's just going to be a matter of finding the 2-piece that lasts the longest (my stoma nurse gave me the Dansac system; I'm currently trying one from Coloplast), because I'm aware that they're more expensive than 1-piece systems. Of course, another option is to try and find a pouch with a superior filter that could last for more than a day, which I'll also try.

Well, there we go - my quest for more sleep! Ongoing, but I feel like I'm making progress...

Last-minute bag change!

I thought I could manage to get four days out of my Dansac Novalife, but apparently not. Should have changed this morning, but instead am having to crack out the jelly babies... :)

I'll wait half-an-hour or so and hopefully that'll thicken up my output enough to not make this change a nightmare one!

Hair Loss - A Summary of Recovery

The other day, I came across a couple of posts from the summer of last year on the blog that I write with my husband. I was somewhat shocked to realise just how bad of a condition my hair was in; evidence below (the subject matter of our blog explains the glass of whisky in my hand in both pictures).

The picture on the left was from August 2011, so four months after my operation. The thinning had slowed, but it there wasn't too much left. I generally either let it be, like in the picture, or wrapped a scarf/hair-band around it to try and mask the gaps in my parting.

The picture on the right was from November 2011 (seven months post-op). Most of the hair had started to grow back, but those strands were only 3 or 4 inches long at the longest. As a result, I felt like a bit of a muppet, with tufts of hair along my parting giving everything a weird shape. At this stage, I'm sorry to say that I couldn't find anything in particular to hide this (other than wear a hat!), but I was encouraged by the regrowth and crossed my fingers that it wouldn't last too long.

By April 2012 (one year post-op), my hair was very nearly back to normal. Only the slowest-growing hairs (most at the centre of my parting) weren't yet long enough to sit flat. 

The above picture is from June 2012 (please ignore the messy do - it's finally about time for another haircut! My hairdresser recommended leaving it until those last few short hairs had grown long enough to lie flat). Interestingly, my hair's gone rather curly - drying naturally into ringlets if I let it - which is a nice surprise and seems like a hidden blessing after a year's worth of waiting. 

P.S. Please forgive the number of photographs (and bad hairstyles) in this post!

Insufficient vocabulary

My Inflammatory Bowel Disease has led to my learning lots of new vocabulary - mostly medical terminology - but this morning, I found myself in the awkward position of trying to work out how to tell my boss that, "I haven't called in yet, because my rectal stump is causing me problems." 

Words failed me.

In the end, I ended up giving a little too much information, but I was anxious about calling in to work from home without a clear and valid reason. Fortunately, my boss is great and very understanding and we just laughed it off, but, for just a moment, I was so embarrassed, I wanted to cry.

Instead, however, I watched a few wonderful videos from http://www.girls-with-guts.com/ and had a good chuckle. Those girls are great!

Today I need to change my bag...

but I really don't want to. It sounds like such a stupid, teenage frame of mind to have, but I just can't be bothered! But I know I have to. After all, I'm a grown-up; surely it shouldn't be so difficult?

Deary me... I'm such a big kid sometimes!

*heads off to the bathroom*

P.S. I apologise for this pointless post. :)

Note to self, re: sleeping through the night

Finish eating before 7pm. Seriously. No biscuits, chocolates or sneaky apples. Trust me, you'll thank me tomorrow morning.

10 more things this process has taught me

1. The human body is amazing and so, so resilient.
2. The online IBD support community is also amazing and resilient.
3. Keeping hydrated is so very important to feeling strong, alert and energetic. Before my ileostomy, I must have spent countless days feeling "blah" and just putting it down to a virus or something when all I needed to do was drink some water.
4. Food takes 4-6 hours to go through the remainder of my insides.
5. If I don't want to have to get up in the night, I shouldn't eat at all after 7pm.
6. Banana + Doritos + No drink to wash it all down with = Pain
7. My stoma appears to have a sense of both humour and timing.
8. It might take a while (11 months!), but your hair can definitely grow back.
9. The person most likely to notice your stoma bag is you.
10. Coming to terms with having a stoma can take a little while and one of the best ways to help this process along is to speak to someone who has experienced, or is experiencing, the same feelings and to talk about them. Share your thoughts and try your best to offer a helping hand where you know it's needed most.

One year on

One year ago today, I had the operation where my stoma was created, and I feel really quite calm about it. The past year's been a bit of a rollercoaster ride, but the ups definitely outweigh the negatives; namely, I'm not on any medication, my disease is in remission, and my stoma is healthy. I am blessed to still be here and to be living a normal - if a slightly different "normal" to before - life.

This morning, I tidied out the box that I keep my ostomy supplies in and - rather appropriately - stumbled across my hospital discharge note, which detailed what happened this time last year. I thought I'd post it, just so that I don't lose sight of how poorly I was and how grateful I should be for my health.

Date of Admission: 08/04/2011
Date of Discharge: 19/04/2011

Reason for admission: 
Diarrhoea, Abdominal pain

Treatment and management:
IVI, Analgesia (pain relief)
Fentanyl PCA (like morphine)
Epidural
IV Hydrocortisone (steroids)
IV AbX - Cefuroxime & Metronidazole 4/7 (antibiotics)

Operation/investigation:
Bloods
Laparotomy, subtotal colectomy & ileostomy formation with epidural (large incision in my abdomen to explore what was going on with my colon, followed by a near-complete removal of it and the creation of my stoma)

Diagnosis:

1. Inflammatory Bowel Disease with toxic dilatation 
2. PCOS (completely separate from my IBD, but something that I'd had a - painful - ultrasound to investigate a day prior to my hospitalisation...!)
3. Congenital Hearing Loss (also completely separate from my IBD)

Drug regimen on discharge:

1. Cloxane (to prevent against blood clots)
2. Paracetamol 
3. Fresubin (Banana) (meal replacement drinks, to replace nutrients)
4. Ibuprofen
5. Tramadol (painkillers)
6. Buscapan (I don't think I ever got this, actually! But it's to help with spasms, abdominal pain and nausea; I could have done with some when I had an adhesion-related, vomiting and pain-fest not long after being discharged)
7. Loperamide

It's been a long year, with lots of changes and learning, but life is good. Here's to many more years like it.

Full of cold

Today, I'm full of cold: stuffed up, slowed down, and not hungry, which always frustrates me, because I usually look forward to every meal. My meals, even more so now that I have been through bowel rest (being told not to eat, to give your digestive system a break), help me to structure my day and make me feel comfortable. Thus, not feeling hungry makes me feel a bit alien in my own skin.

I have to admit, it also seems a bit odd to feel so ill without being really ill. By which I mean, not hospital-bound or life-threateningly ill, but still feeling downright awful. This is the first time I've been properly ill since my surgery in April and it took a good hour's of strained thought this morning (whilst I lay half-awake because I couldn't breathe regularly enough to sleep) before I convinced myself that it was okay to have the day off of work. I didn't want to, because we're really busy at the moment and I feel a little like I keep letting people down, but, you know what, it might be "just a cold", but it can still mean that you're too sick to go to work (let alone expose everyone else in the train, bus and office to it). That's okay. Just because I have inflammatory bowel disease doesn't mean that I have to "save up" my sick days in case I need them to cope with that.

So today, I'm sitting at home, wrapped up in multiple blankets and my favourite pyjamas, and looking forward to regaining my appetite before our planned Thanksgiving dinner on Friday (being in the UK, we've never had a Thanksgiving dinner before, but thought we'd give it a go).

I tell you something, though, nothing has prepared me for the bizarre sensation of sneezing with an ileostomy! Maybe it's just me, but I have to put one hand/tissue to my nose and the other across my stoma to support it. Nothing worse than a twinge of pain has resulted when I don't, but it feels more comfortable.

Birthday treats

Today, I am twenty-six (I won't say how old that seems!). I've been through quite a bit in my twenty-sixth year, so decided to take it easy this weekend. I'd planned to drive and visit my parents and see my best friend & lovely Godson, but, two days ago, I started getting bad pains in my lower abdomen and my appetite disappeared. By Saturday morning, the pains had worsened, output was watery and my stomach had become painful and tender, so I couldn't drive. This left us on our own at home; an even more quiet birthday than planned.

I'm pleased to say that my pains have eased today, so we've been celebrating with a bit of champagne, chocolates, a few slices of pizza and lots of horror movies (most starring Peter Cushing, Christopher Lee and Vincent Price). Not the birthday I'd planned, but a very pleasant one nonetheless. I'm looking forward to seeing family this time next week, when hopefully these random symptoms will have disappeared for good.

This little chap, a birthday present from a good friend, has been sitting beside me throughout the weekend; isn't he great?

Back to normal

I don't mean to jinx anything (*touches wood*), but the past couple of days, I've honestly felt that I'm back to normal. Well, the new version of normal-with-an-ileostomy.

For some reason, this seems to have been reinforced by the fact that I'm sitting in my favourite chair after a lovely cup of tea, about to start some knitting (cunningly ignoring my ironing pile), and listening to my amazing husband decide which are his top five introductions to Beatles songs. :) It's good to be back.

My first major leak

I haven't written in a while, because things have generally been going really well: I haven't had any further symptoms, my scar's faded from the vibrant pink that it was a couple of months ago, and my stoma has been behaving itself. I've also learned a lot about how my body digests food and thought that I knew, at least roughly, when I would need to empty my bag, so the need to do so had started to seem like less of an inconvenience and more of something that just happened.

Yesterday, though, I had my first major leak. I posted ages ago on once waking up in the morning to find half of my bag coming loose in the night, but I now realise that even calling that a "near-leak" was wholly inappropriate. Nothing about that experience can compare to the horror and embarrassment that I felt when I reached the bathroom, went to lift my ostomy belt and realised that there was output everywhere between my bag and my skirt. 

Fortunately, I was both at home by the time that I realised this and had loads of layers on (handy, output-catching layers). We'd just returned from a meal out at Pizza Hut and a brief trip to Tesco, so all I can think now is thank goodness I didn't go to the bathroom and find it out there. 

Argh. I'm not going to let this get me down too much, but it's frustrated me more than I'd anticipated. I had a little cry after I'd cleaned myself up and my wonderful husband gave me a hug and I felt better, but I can't help but still find it worrying that I'd effectively soiled myself without realising. I literally had no idea about it until I went to empty my bag.

After taking some time to reflect, I realised that there had been a couple of signs. Firstly, just before we went to the restaurant, the skin underneath my bag was pretty itchy. Also, yesterday morning, the side of my bag that eventually leaked looked odd after I had showered, like the water had effected it more than usual; I assumed it would dry out and all would be okay. On top of this, I had had such a wonderful - and distracting - meal with my husband that I didn't empty my bag at all whilst we were out, which wasn't a great plan. 

Ah well, at least it's happened now and I know that I coped with it, even if there were a few tears. None of this is worse than the symptoms of inflammatory bowel disease and I'm still alive thanks to my ileostomy, so I'm taking it as another baby step - albeit a slightly more messy one - on the road back to normality. And I'm so close!

Fertility & IBD

This won't be a long and elaborate post, but I wanted to post a link to the Crohn's and Colitis UK information sheet on fertility. My ileostomy surgery was emergency and all happened so quickly that I was left without a good idea of whether or not my fertility has been affected.

After my post-op. meeting with my surgeon, I got even more confused. It was only after reading the above information sheet that I felt that I had a good handle on what was and wasn't affected, and why, so I'd highly recommend it if you're after a clear explanation.

Keeping hydrated

I've never been overly good at drinking as much water as I should, but now that I don't have a colon, this has become a more significant issue. As far as I know, the main job of the colon or large intestine is to slowly absorb water and salts from food as it passes through. If you don't have a colon, you don't get the benefit of this additional water and salt and, therefore, you both need to generally intake more through drinking and keep an eye on your hydration levels, because you can dehydrate very quickly (e.g. if you are sick) and this can be very dangerous indeed.

So... I've been trying to find good ways to remind and/or encourage myself to keep drinking. If anyone has any recommendations, I'd greatly appreciate them, as I'm genuinely finding this tricky; I simply don't think to drink and, as a result, am finding myself getting tired easily and having an increasing number of dehydration headaches.

So far, my attempts have included:

• having a refillable bottle at work, which I refill whenever I get a cup of tea (strangely enough, I don't have an issue with reminding myself to drink tea!) and endeavour to finish before I allow myself another cuppa;
• drinking fruit squash rather than water (squash should be added to my list of things for a hospital stay - they like you to drink loads in hospital, but water at room-temperature is hugely unappetizing; nearly everyone else on my ward had already learned this from experience and had a wide range of different flavours with which to improve their water);
• having a large glass beside me at home. I get frustrated having to constantly get refills, so having a large glass helps. I think I'm going to expand on this at work and get a jug so that I don't have to keep going to the water point.

Any other ideas? :)

Chilli fries!

Today, I ate chilli fries, one of my favourite foods. Chips, chilli con carne and cheese. Mmm, lovely!

I'd been putting this off for a good while due to the obvious concerns, but have had no problems so far and they were absolutely delicious. I'm feeling more "back to normal" every day, and this has definitely helped!

Wriggling around

Tonight, I'm feeling pretty uncomfortable. No cramps, no pain, no diarrhea, just a jolly irritating feeling in my behind, like I will shortly need to go to the toilet. I won't, of course, because everything comes out via my stoma now (with very rare exceptions), but it really feels like it and I'm finding it hard to keep still and seated!

I've been amused over the past few months at how relieved I am when I do actually have to pass stuff, because it reminds me of how things "used to work" (!) - who'd ever thought that anyone could miss sitting on the toilet, eh? - but this is just frustrating. Argh!

Can't. Sit. Still.

The rest of my life

Today, I had a realisation. What with everyone being seemingly concerned about how I'm coping with the "long-term implications" of having either Crohn's Disease or Ulcerative Colitis, I've found my inner-introspective anticipating a continuous, downwards spiral. Worse than that, I felt oddly alone (oddly, because I've never felt so cared for as I have over the past five months) and scared at what the future holds; all the more, because my symptoms have completely disappeared since having my operation: my disease seems to be a silent stalker, ready to pounce unexpectedly and cause all manner of chaos. Even though I know that most people who get IBD first get symptoms between the ages of 15 and 30, I just couldn't shake the feeling that I was alone in my experience.

Then, this afternoon, whilst I was walking home from work, I was mid-prayer, mid-contemplation, when a mental image of my parents came into my head. They were definitely my parents, but they were younger than I've ever seen them, and I was focusing on my dad.

Then it came to me and all made sense: I'm so silly for feeling lost and alone. When my father was younger, before either me or my brother were born, he had cancer. I often forget this, because I didn't know about it for ages. It's not the sort of thing that just comes up in conversation between parents and children, not if it happened before they were born, but today was the day that I really appreciated that my parents went through similar and undoubtedly more difficult times just after they were married than me & my husband have been through this past six months. Times of worry, hospitals, crazy terminology and treatments. Times when they had to lean on one another and times when they had to fight. After the cancer, they were told that they probably wouldn't be able to have children (obviously proven wrong shortly after, when I was born!); another hurdle that I'm already dreading having to face.

More than all of this, I realised that although those hard times obviously shaped my parents' lives, they still had the rest of their lives ahead of them; they didn't just give up, give in to worry about what if the disease returned, what about complications, what if...? They kept living their lives, being strong, being who they were.

I mentioned only the other day to my husband that one of the most important lessons that my parents have taught me is to be happy and content. Not unambitious, but content with who you are and where you are on your journey today. By all means, plan where you're going to go tomorrow, but don't waste time being upset with things that you cannot change today.

For now, I think I've done enough reading on UC and CD for this week. Now I'm going to stop worrying about flare-ups and my bag, and start thinking about the rest of my life.

Thank you so much, Mum & Dad; I love you xx

Making for easy bag-opening

I missed something out of my recent bag-changing post, which is just a quick little thing that a nurse taught me in hospital to make opening the neck of my bag much easier. I just push the outer edges together, as shown in the below pictures, creating a crease in the centre of the opening.

Just a little trick, but it helps!

Google Reader

I've just discovered Google Reader, which is a fantastic way to keep track of all of the different blogs that I read from all different websites: Blogspot, Wordpress, and others. I can't believe I haven't tried it before!