Tuesday 30 August 2011

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

Saturday 27 August 2011

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!

Thursday 25 August 2011

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!

Thursday 18 August 2011

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!

Monday 15 August 2011

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.

Saturday 6 August 2011

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.