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!

Feeling rundown

This week I've been feeling pretty run down. I've not had any major pain or problems, but aches and weird sensations have plagued me (and my much-cherished sleep), and made me feel generally tired and out-of-control of my own body, which isn't nice.

The most uncomfortable thing is that I've been feeling like I need to go to the bathroom the "old way", especially so whenever I sit down for a prolonged period of time. This morning, I had minor pain in that area as well, but fortunately that improved with painkillers and I was just left feeling really odd. Now, I've had this before, but it doesn't usually last as long as this, as it's normally sorted by sitting on the toilet for a bit and passing some mucus (lovely, I know). The mucus is perfectly normal - the remaining part of my colon, which is still living tissue, produces it and, every now and again, it has to go somewhere - so that isn't anything to worry about, but the sensation itself is just weird and jolly uncomfortable. Hopefully it'll pass soon, and preferably before the bank holiday weekend starts!

How I change my bag

I have absolutely no idea of whether this is of any use to anyone, but it crossed my mind today, whilst reading some IA Support forum posts that everyone must have slight differences in the way that they were taught and the way that they've learned themselves to change their bag. So here is my current procedure:

Everything set out for a bag change!

1. I get everything ready. I always change my bag (a Dansac Novalife one-piece) standing up, next to the sink. I get everything that I'll need for the change out and arrange it around the sink. I also half-fill the sink with warm water.
2. I cut out my bag's template and fold up and secure the neck. I put one squirt of Ostomist odour eliminator spray into the bag, and set it aside until I need it.
3. I quickly check that my current bag's empty and then tuck it into my disposal bag. I use Pelican adhesive remover spray to remove the bag's flange, and fold it up into the disposal bag.
4. Since I use flange extenders, the skin around my stoma can sometimes get quite a build up of adhesive, so the first thing I normally do once my bag's off is spray the adhesive remover around the stoma and wipe away any remaining adhesive.
5. Now I wash my stoma and the skin around it, making sure to bathe the skin to ensure that all adhesive remover, paste/powder and output have been washed away. This can be very easy or very difficult, depending on how active my stoma is (the former if I've got up early, the latter if I've been naughty and stayed in bed, or avoided changing my bag until an hour or two after breakfast!). My stoma's quite long at the moment and so hangs down onto my stomach; I have to lift it up and check that the underside is clean using a small mirror.
6. Dry the skin around my stoma, especially underneath.
7. I wipe the skin with a LBF skin barrier wipe and leave it to dry; this protects the skin from any adhesive and output.
8. The next step depends on whether or not I've got any red or sore sections around my stoma. If so, I sprinkle some Orahesive protective powder onto a dry wipe and then apply it to the sore spot and lightly dust away any excess. If it's easier, I use Orahesive protective paste instead, but I've generally found that the powder helps things to heal faster.
9. Next, I take a Salts SecuPlast slim mouldable seal and tear it in half (I only use half per change). I roll it between my palms - like plasticine - until it forms a sausage-like shape, about 0.5cm wide and 6cm long. I stick this close around my stoma, join it at the top, and flatten the outer edges as best I can.
10. I warm my bag's flange between my palms for half a minute or so, then peel off the backing and  guide my stoma through the hole. I normally have to lean forward slightly to manage this, as my stoma droops over, but I'm getting better at managing it in one go! I press my palms against the flange to both warm the adhesive and smooth out any creases and help it stick. Because it's closed, some air is always trapped, making it like a little pillow, full of air. I release the air by unrolling and then resealing the neck.
11. Finally, I secure the left-hand side of my flange with a CliniMed HydroFrame flange extender. This stops that side from coming away from my skin after 24 hours.

All I then have to do is tidy up! 

Hair loss, pt. 3

My hair finally seems to have stopped falling out (especially in the shower), which is somewhat of a relief, given that it was starting to look like I wouldn't have much left for much longer. I can now wash my hair without pulling out handfuls, and - better still - I've noticed a distinctive, thicker layer of hair underneath my thinner, longer layer.  It's particularly noticeable near my ears where, if I lift up the thin, straggly ends that remain, you can see a load of hairs that are about 5 or 6cm shorter.

This has made my feel a lot better over the past week or so. So much so, that I've stopped wearing hair bands and scarves every day, even though the thin patches on top haven't disappeared; it's amazing what hope can do, eh?

My GP initially told me that my hair should grow back within a month or two, but it's taken about 2.5 months to get to this stage, so I don't imagine it'll be back to normal before 5 or 6 months post-op (my hair only started falling out 2 months post-op.). I just want to reassure anyone going through this at the moment that it does get better - just hang in there!

A trip to the Isle of Wight

My husband & I returned today from a trip to Cowes Week, where we had a marvellous time at an event hosted by Talisker whisky. We had a lovely whisky tasting - that I'll be writing up on SummerFruitCup.com this week - ate fish & chips not more than 10m from the sea, and finally set sail (figuratively speaking) aboard a catamaran to watch Master and Commander at the world's first "sail-in cinema". That's like a drive-in cinema, but on water!

The screen looks tiny, but I thought that the sail-in cinema worked well.

I'll admit that I was worried at the prospect of going on a boat (having experienced some less-than-ideal toilet facilities on some smaller boats), but I took three loperamide tablets when we were having the fish 'n' chips and that seemed to slow my output down enough so that I only had to empty twice during the evening.

A simple, but helpful tip from the IA Support forums gave that I took advantage of was putting a couple of sheets of toilet paper into the toilet bowl before emptying. This meant that, when flushing, - and I apologise if this is too much information for some - everything gets swept away in one neat flush. I use a similar method when I have to empty in toilets on trains, which are much worse than the ones on this boat. Sailing is just one more little milestone to add to my post-ileostomy list!

I'm also pleased to announce that I successfully managed my alcohol intake on this trip, which is something that I'm very happy about. We tried four different whiskies and I had them all, but I also drank a litre of water at the same time and both felt fine after and had no watery output. During the evening, I had a couple of long cocktails and another whisky, but all spread out over a few hours and accompanied by another litre of water.

My final challenge was when we got back to the hotel where we were staying and we decided to have a nightcap with some friends we'd met during the day. I thought about it and went for a pint of coke. As a result, no hangover, no disorientation, and no diarrhea. Excellent! No doubt I'll have a few more bad experiences as I continue to practice finding this new balance of hydration, but I'm pleased to have found it this once.

Being Nicole

Today, I ordered this 1940's style wig from Annabelle's Wigs. My husband's writing a murder mystery set in 1940's Casablanca and I'm due to be the French mayor's daughter, Nicole. I shall have to practice my accent, as I'm terrible at them, but I thought I'd boost my confidence and throw myself into character by covering my still-thin hair with a wig. Who knows, maybe I'll like the black? :)

Diva wig from Annabelle's Wigs

Found: 1 bellybutton

I've been away on a trip to my family recently, so haven't posted as much as I would have liked, but wanted to just post a little note on how things seem to be coming along quite nicely. Having my stoma and ileostomy bag are starting to become normal, helped massively by the fact that I'm now very nearly back up to full strength and my incision scars have healed to the point whereby they don't bother me at all.

The latter has made such a difference; one of the main reasons being that sleeping is now easy and natural. Despite the heat that we've had recently, I've found myself being more comfortable when I sleep: I can roll over, sleep on my side, and even sometimes for short periods on my stomach without feeling uneasy. I've also learned that my body is good at waking me when my bag is full, so I don't worry so much about leakages in bed. Depending on when I eat during the day, I usually have to get up once (sometimes twice) in the night to empty, which is a pain, but not painful (like the colitis was).

Anyway, the other thing I wanted to note was that, today, I found my bellybutton! This may seem ridiculously un-noteworthy to those of you with obvious bellybuttons, but I had seriously thought that the surgeons had sewn mine up, to be lost forever beneath a bumpy scar (as I had an emergency operation, I couldn't have key-hole surgery, so have a big scar down my tummy). But... no! Whilst in the shower this morning, I went to scratch my scar and there it was, a tiny, 1cm-long bellybutton. It's not the same, obviously, but it's there, and that made me feel oddly happy.

The confidence-boost from a bit of red

When I was younger, I never had much of a courtship (or even acquaintance) with make-up and, now that I'm an adult, I only wear it maybe once or twice a week. When I do, it's usually just a bit of mascara and - if I'm feeling adventurous - some lipliner and lipstick. If I've got my compact on me, I'll add a bit of translucent powder.

My husband & I are members of the wonderful New Sheridan Club, a vintage-inspired social club, so it's no great surprise that my chosen lipstick is red (my favourite at the moment is Revlon's Matte lipstick and I'm always amused by the fact that my current shade is number 007), and I even occasionally attempt vintage hairstyles, thanks to encouragement and reassurance that they're not impossible given in videos on YouTube by beautiful people like Fleur and Lisa.

Since my hair has started to thin, though, and especially since I've been unable to do practically anything with it (bar wrap it up with a nice scarf), I've been scared of putting my usual hot sticks in and even pincurls seem out-of-bounds, as brushing out a set would probably leave me with hardly any hair at all...! Oddly, however, this limitation of my "beauty regime" to my face seems to have made me more enthusiastic about make-up. It makes sense, really: anything to both distract people from the top of my head and make me feel a little more self-confident.

I've always been amazed at the confidence automatically installed by the wearing of red lipstick. At first, of course, I was absolutely terrified and thought that everyone was looking at me and thinking that I looked like a two-year-old playing with her mum's make-up kit, but now I feel comfortable when I have it on and, more than that, when I do wear it, it lifts my spirits, makes me smile more and makes me feel better about myself.

I always try to be self-aware when it comes to make-up, because I wouldn't like to think that I would ever not be able to not wear make-up, but right now I really appreciate the little brightening effect that that splash of red gives me.

Cramps & sleeping upright

The past few days, I've been feeling a bit under the weather, especially in the general stomach area. I've been getting a cramp or stitch-like pain that comes and goes, but is worse after eating, and my stomach is bloated and tender.

This all started two nights ago. We were watching a film and, at about 7pm, I had a banana. Two or three hours later, I was starting to feel peckish again and was getting strong urges for something salty, so I had a few crisps. About ten or fifteen minutes later, I started to get a cramping sensation just below my ribcage. I've had this once before and was not enthusiastic about the prospect of reliving my previous experience...

Previously, I had tried to simply ignore the pain and go to sleep, but the pain gradually got worse. It came and went, a bit like contractions, and no position seemed to ease them (staying perfectly still, regardless of position, seemed to be the most helpful). I thought that it must be something like indigestion, so got up and walked around for a bit. Then I was violently sick, repeatedly. I spent the following seven hours in a vicious, painful cycle: stay still, be sick, move, worsen pain, desperately try to stay still again...

Yes, so I was a little wary when I started to feel the twinges of pain at the top of my abdomen. I slept sitting up in a chair in the living room, since lying down made it worse before, but, fortunately, it didn't get much worse and I wasn't sick. Unlike last time, though, the cramping has continued for two days now. I'm going to call my GP tomorrow and see what she says.

I can't deny that a part of me is worried that this might be something more sinister than indigestion. Namely, Crohn's Disease. What if something has started up in my small intestine? What if it worsens and they need to operate on that, too? What if they have to remove some of it? How much could they remove? Surely you can't survive without any intestines?!

Argh. I'm being ridiculous, I know. I'm not noticing any major changes in output, so no diarrhea. If anything has started, it's not as bad as it was before, so they would try different medications first. Of course, it could just be something that I've eaten or some kind of reaction to my previous surgery. It could be a bug or something. I really have no idea, so I'm officially going to stop worrying (before I get an ulcer!).

In good news, my sleep is - generally - back to normal now, which is something that I've forgotten to mention previously. I sleep on my side most of the time now, which is perfectly comfortable, and I don't greatly miss sleeping on my stomach. If I eat at the right times before I go to bed, I don't even have to get up for up to six hours to empty my bag, something that I couldn't even imagine as a possibility a few months ago.

Waiting out the hair loss

So... my hair's still falling out, but it's also still falling out pretty evenly all over, so I continue to be grateful for that. I've undertaken a number of steps to battle/slow down/cover up this, which I thought I'd list here.

• I'm taking vitamin B supplements in addition to my daily chewy multivitamin, as recommended by a pharmacist (if you've got an ileostomy, best to check with a pharmacist about which ones are best for you - I've read that some coated tablets sometimes don't completely digest within the small intestine and so will just pop out into your bag without helping in the slightest).
• I'm also eating various foods that are supposed to be good for your hair, including liver, which I've really never eaten before. It's not that bad, honest.
• When I do wash my hair, I'm using a 2-in-1 children's shampoo & conditioner, which - as well as being gentle and no-tears - smells lovely, of strawberries. It also means that I only have to put one product on in the shower, thus reducing the amount of hair that I - unintentionally - pull out every time I touch my head.
• I normally wash my hair every day, but am currently trying to only do so every other day. On my "off" days, I use the Batiste dry shampoo that was so brilliant when I was in hospital, which freshens my hair up when I brush it (without any extra hair-pulling).
• My mother-in-law bought me a new hair brush that's supposed to encourage healthy hair growth by stimulating the scalp. A very good friend who's also going through a similar experience following surgery has bought a Tangle Teezer, which she said was v. good at brushing hair and detangling at the same time, which results in fewer hairs falling out. I might look to getting one of these, too.
• Finally, I'm experimenting with hair scarves and bands to try and cover up the increasingly noticeable skin beneath my parting (as seen below). I sometimes curl my hair in an attempt at a vintage style, so the picture with the scarf was following a tutoral by Antje from the Fedora Lounge. Another great thing about this style was that the scarf "boosted" my thinning hair from underneath, making it appear like it had more volume (although it doesn't look like it in this phone-camera pic, unfortunately). It made me feel a lot better about my appearance, not having to see my increasingly-bald patch at the front (even if no-one else notices it, I do!). Definitely worth the £2 for the scarf!