Wednesday 23 November 2011

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.

Sunday 20 November 2011

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?


Thursday 17 November 2011

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.

Saturday 12 November 2011

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!

Saturday 29 October 2011

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.

Sunday 18 September 2011

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? :)

Monday 12 September 2011

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!

Friday 2 September 2011

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.

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.

Friday 22 July 2011

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.

Sunday 17 July 2011

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.

Tuesday 12 July 2011

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!


Sunday 10 July 2011

The day that alcohol was not my friend

I am seriously ashamed. The other day, I was drunk. Very drunk. So drunk that I was ill, which has only ever happened once before (when I was much younger and more naive), and it was completely my own fault.

I've mentioned before that my husband & I go to some gin events. My favourite tipple is scotch whisky. We enjoy alcohol and probably drink more of it than lots of people we know, but it's very rare that we drink excessively. When I had recovered from my operation to the point where I felt strong enough to try a drink, I did. And I was fine. No problems whatsoever. So the next time we were out, I tried two drinks, and - again - I was okay. The other day, I was not okay.

I know why I wasn't okay: I didn't drink enough water. I was ridiculously stupid. There was one pitiful moment where I went to the bathroom, only to be shocked at seeing my bag. I had genuinely forgotten that it was there and - more seriously - that I now dehydrate even more quickly than I used to. Subconsciously, I think I wanted to forget about it and just "be normal" again for the evening. I think this is covered in my occupational health report by the comment that I "haven't yet come to terms with the long-term effects of [my] illness". <sigh>

The main reason I'm posting this is to encourage anyone with a new ileostomy to keep on top of their hydration, especially when drinking alcohol and in the warmer weather. From various forum threads that I've read, alcohol seems to effect different ileostomates differently (some people find themselves less likely to get drunk than beforehand, whereas others have given alcohol up completely), but the lesson that I've learned - the hard way - is two-fold:

  1. Take it slow. So slow that there's absolutely no danger of your "forgetting" to take it slow. Basically, ensure that you stay self-aware.
  2. Keep yourself well-hydrated.
I'm going back to only having two (alcoholic) drinks on an evening out and we'll see where things go from there.

Thursday 7 July 2011

A good bag-changing experience, yey!

I had a really good bag-changing experience today. This was a surprise, because I had been getting a slight pain around my stoma that normally suggests red-raw skin. When I took the old bag off, my stoma immediately shrank to the touch, which gave it the appearance of feeling rather sorry for itself (!). Despite this, the skin around the edge wasn't too bad, with just a few millimeters of redness that should disappear in a couple of days with some protective powder giving it a chance to heal.

What I was really pleased about was that I tried a smaller cut-out today. Given the redness around the sides, I decided to try making the hole in my bag a bit less wide. The last time I tried this, my stoma decided to rebel and expand as much as it could to avoid fitting through this smaller hole, which meant a hasty re-cutting, which obviously provided an excellent opportunity for said stoma to start playing up and spouting stuff everywhere. Grr. That was a not so great bag-changing experience, but it's only happened the once.

I've found that if I'm not lazy and get up at a reasonable hour, shower, and change my bag all before 10am, then my stoma is calm and easy to care for. It's also smaller (narrower, at least), because it's not passing anything, and so is easier to put a bag onto.

I suppose it's worth noting here as well that my stoma is quite long. Not seriously prolapsed or anything, but varies in length from about 1 to 2 inches and always points downwards (the "top" side is longer than the "bottom" side). At first, I was a little upset by this, as my stoma didn't look anything like the neat, circular bobbles in all of the leaflets I was given, but now I am grateful for this, as it means that all output goes immediately downwards, into the bag, and doesn't hang around near the stoma (or, more importantly, the sensitive skin surrounding it). One day, no doubt, I'll muster enough courage to put a photo on here to show people what I mean and show that not all stomas are textbook in appearance.

Now... time for a cup of tea, I think!

Friday 1 July 2011

Hair loss, Part 2

Something else that this process has taught me... your hair grows in cycles. At any one time, a proportion of your hair stops growing and is ready to fall out (whilst the rest continues to grow). If you undergo major surgery, are ill, underweight, or very stressed, these cycles can be interrupted. This doesn't have an immediate effect, but 1-3 months later, a much higher proportion of your hair is ready to fall out, and does. More details can be read here.

This is what my GP said at my appointment. She also mentioned that it was to be expected and that there wasn't anything that could be done to stop it, but that it shouldn't result in bald patches or anything (no matter how much seems to fall out every time I wash my hair!), but more a more-or-less overall thinning of my hair. Good news, although I'm still wary about washing it... Oh, if only a cool shower didn't feel so good during this horrid warm spell!

I have a wedding to attend at the end of July, so my current plan is to do absolutely minimal styling until then and then either curl or blow-dry it for the wedding to try and hide the lack of volume, maybe wear a thick hair band/big accessory or something (to hide my parting, rather than draw attention to my head).

Now, I've got to decide whether or not to try keeping this bag on for another day. It's been on for three so far and looks okay - not great, a bit dry around the edges, but nothing's pealing away - and I'm tempted to try it for four. Then again, we're planning on going on a walk to the coast later and I'm not sure I want to have an accident on the way. Hmm. Decisions, decisions. I think I'll have a cup to tea whilst I decide!

Wednesday 29 June 2011

A very good day

Today has been excellent! It's my rest day from work, but, what with the heat and general unchanging scenery in our flat, my husband & I decided to go on a relaxing trip out into the cool, seaside air. I don't think I can emphasise how positive an effect this has had on my spirits; I feel refreshed, healthy (for the walking) and calm.

Whilst we were out, I also passed two mini-milestones that I thought I'd note here:

  • Firstly, I ate potato skins. One of them actually turned out to have sweetcorn in the topping, too, so I chewed them very, very well, and am pleased to say that I haven't had any negative side-effects so far. My stoma was pretty noisy this evening in response, I think, but as I was home, I didn't mind. I'm so happy about this: potato skins and sweetcorn are two things I love and two that I thought I'd definitely have to avoid in the future. 
  • Secondly, I went into a lingerie shop and tried some things on. This wouldn't be hugely unusual, but it's the first time I've been into a changing room since my operation and so I had to take a few moments to get used to my reflection; both the addition of the scar and bag, and the subtraction of some of my curves (fortunately, not all of them, and thankfully I no longer look like a slightly grey, sunken-eyed school girl, like I did in hospital!). I can't quite explain it, but I get the sense that I came to terms with something whilst looking at that reflection. I'll try to explore it a little bit over the next few days, but right now, I'm going to go to bed.

It's been a very good day.

Monday 27 June 2011

Driving!

I felt a little negative when posting that last entry, so I thought I'd end the day with something a little more positive: driving. I posted a while ago, when I was pondering driving after my surgery, and had to go through the horrors of calling up my car insurance company for no real reason. Well, about a month on, and I'm driving like normal and have had no problems whatsoever - no leaks, no unexpected aches or pains, and no (apparent) memory loss regarding my actual ability to drive!

The only difference between my driving, pre- and post-colon-removal, is that I now drive with a hand towel folded up and across my tummy, to protect my stoma from my seat-belt. I sometimes forget this, but find it more comfortable when I have it. And what's really great about it is that it was easy to find, is easy to store, and, should I ever have a leak in the car, I can use it to pad it out until I can get somewhere to fix things!

Driving again has helped me to feel more independent and capable, and has meant that my husband & I have another method of transport to use when one or both of us need to just get out of our flat, which we've spent much more time in recently than we were used to! I've never been one of those people who loves driving for the sake of it - indeed, when I was learning to drive and just after I passed my test, I absolutely hated driving - but I am so happy that I simply can.

Hair loss

Today, I agreed with my husband to go and see my GP about my hair. Now, I'm not really worried or anything, but my hair started falling out a little more than normal about a month ago. I was told by the nurses that this might happen, as it often does after a sudden illness or major surgery. A couple of weeks ago, I got it cut into a short bob, in an attempt to take some of the weight out of it and generally make it less noticeable if it did fall out. The past week, however, I've noticed that it's been falling out at an increasing rate, so much so, that I find myself dreading washing or brushing it.

Now, I have no doubt that this is a very temporary thing and that it'll all grow back in due course, but - right now - it's not a great thing to have to worry about (!). I am grateful, at least, that it appears to be falling out at the same rate all over! I'll let you know if my GP recommends anything.

Update following my appointment with my GP: http://teaandjellybabies.blogspot.com/2011/07/hair-loss-part-ii.html

Saturday 18 June 2011

Stoma Nurses

I would like to dedicate this post (whatever that may count for) to all of the wonderful, encouraging stoma nurses out there, who make living with and learning about a stoma so much easier. I don't think I can emphasise enough how supportive and helpful these people are. 

A stoma nurse was the first person to change my bag, post-operation, and I remember his patient, encouraging smile and words as I helplessly looked at my stomach for the first time in horror (I had never had an operation before this and so the primary focus of this horror was the central, stitched-up wound down my tummy). He cleaned the stoma slowly, but masterfully, whilst I sleepily wondered how on earth I would manage this task myself.

A couple of days later, when I was out of high care, the same nurse helped me clean the stoma myself and watched on with the same calm, understanding patience as before, talking me through everything and giving encouraging words.

The first time I changed by bag completely by myself, I was convinced that I wasn't ready, and it was only his patient insistence that he had confidence in my bag-changing ability that meant that I tried. Sure enough, I changed it without problems and my self-confidence went up a much-needed point.

I won't deny that every time I knew that I had to change my bag, I felt like asking my stoma nurse to do it for me, whether it be because I was tired, worried that I'd do myself some crazy harm, or wanting to remove myself a little from the practicalities presented to me by my stoma. But my stoma nurse understood this and, every time, offered me just the right level of encouragement to make me think that maybe I could or should do it myself, until eventually it didn't worry me any more. I believe it took a very special person to do this without coming across as condescending or mean, and that's why I'm so immensely grateful.


Stoma care problem-solving!

Now that I'm out of hospital and changing my bag every two or three days, there are still things that I worry about. Is that red patch of skin okay? Why's that bit of my stoma bleeding? Why does the left-hand side of my bag always start to lift after a day?

My stoma nurse still saves the day with all of these issues! There are skin barrier wipes to protect any red patches. The slight bleeding is normal, don't worry. The lifting is because my stomach - like many people's, I imagine - isn't perfectly flat and so the left-hand side is under more pressure to pull away from the skin. My stoma nurse recommended I try the Clinimed Hydro Frame strips, which are extension strips of sticky stuff that give just that extra bit of support to the left-hand side and now means I can generally keep a bag on for three, rather than two, days.


Essentially, I just wanted to use this post to say a huge thank you to all of the stoma nurses out there and to make a note of what a marvellous source of support and information they are. I certainly wouldn't be where I am along the journey of recovery without them.

Monday 6 June 2011

10 things this process has taught me (so far)

Here are ten things, in no particular order, that having my sub-total colectomy (removal of part - most - of my colon) and ileostomy have taught me (some of which I definitely should have realised already!):
  1. You don't need your colon/large intestine.
  2. Doctors and nurses are amazing people and both need and deserve more resources.
  3. Recovery can be very tiring and requires patience (of a kind even stronger than that acquired through learning to knit).
  4. Needles aren't that scary and are actually quite useful (IV pain relief!).
  5. Your appendix is attached to your colon, so if you have your colon removed, you can't ever get appendicitis!
  6. I love sleep. Coincidentally, I've also learned how to nap in a beneficial manner.
  7. I love food.
  8. Jelly babies and marshmallows thicken your ouput. Also, Bassett's Jelly Babies taste the best.
  9. Don't be afraid to ask medical staff questions - it really helps to understand, as best you can, what's happening to your body and why you might feel a particular way. If it helps, write your questions/thoughts down somewhere whilst you remember so that you don't forget anything as it might be while before you see the doctor or nurse again.
  10. Don't be afraid of poop. It's nothing to be embarrassed about (after all, everyone has it!) and, in my experience at least, if you work yourself up over it, it just makes things worse. Stay calm and keep going - the poop is manageable.

Thursday 2 June 2011

Seeing my surgeon, first time post-hospital-discharge

On Tuesday, I saw my surgeon for the first time since I left hospital and it was an interesting meeting. I'd been eagerly looking forward to it, mostly because I had a few questions about what had happened (I think that says something about how quickly everything took place back in April!), as well as being eager to hear the results of analysis on the portion of my colon that was removed. I may have been revealing my eagerness a little too much by turning up a good 40 minutes early for my appointment, but I simply took some knitting along with me and reminded myself that at least I wouldn't be late.

Unfortunately, my surgeon was late. An hour late, to be precise, although I couldn't find myself being frustrated with it; after all, there's nothing that could be done about it.


Diagnosis

Somewhat frustratingly, the diagnosis following analysis of my colon is that I currently have Indeterminate Colitis, which means that there are signs of both types of Inflammatory Bowel Disease: Crohn's Disease and Ulcerative Colitis. This came as something of a surprise, as most of the doctors that we spoke to in the hospital were saying UC, but then - given how much I can remember - maybe they were just saying "Colitis" and I was reading too much into it?

Interestingly, Crohn's Disease currently seems like the more likely candidate, given that the lower portion of my colon didn't appear to be affected at all (as it should be if UC is the cause). Of course, the fact that it wasn't affected in April doesn't mean that it never will be, and so the mystery continues.


Reversal

Anyway, the implications of the continued mystery are mainly focused around the options for a reversal operation. If I have Crohn's Disease, then the lower part of my colon may never become inflamed, in which case a simpler operation, merely connecting it to the end of my small intestine, could be performed. However, if I have Ulcerative Colitis, then that part is very likely to become inflamed at some point and may need to be removed, in which case it would be best to remove everything and try an internal pouch, formed from the end of my small intestine.

Of course, the longer I wait for either option, the more chance there is that there may be some sign that will decide one way or the other. I've also been told that it would be best to have any children before either reversal operation, as both are major pelvic surgery and, thus, increase the risk of complications and infertility.

In all honesty, at the moment, I'm quite happy to just wait and see. I know that some people find the thought of having the ileostomy for even more than six months difficult, but at the moment, I just want everything to go back to something vaguely resembling "normal" before I consider any more surgery.

One of my questions for my surgeon was whether or not they'd tried any other treatments before operating, as I - in all honesty - couldn't remember. It turns out that they had tried me on IV steroids for two days, but that my colon continued to dilate at a rate where they had considered the operation as the only option. A - rather cool, in my opinion - medical term for this is toxic megacolon, which I'd read about since coming out of hospital, but not known for certain if that was what I had had.

I'm sure some people would think that all of this is awfully grotesque, but, as you can probably tell, I'm actually very intrigued by all of it, partially because I'm an analyst and so have a great desire to understand the logic and causes behind everything that I can, and partially because some part of me hopes that, by understanding the science of it, it'll all start to settle in a little more.

Wednesday 1 June 2011

An evening out & another near-leak

This morning, I experienced a near-leak half a step closer to disaster than my previous experience: this time, I was - again - lying half-awake, trying to sneak as many extra minutes in bed before getting up to empty my bag as possible, when I caught a whiff of something rather unpleasant. Horrified, I sat up, only to discover my bag hanging off of my stomach in a similar fashion to before, only my stoma was showing through the side where the adhesive had failed. I hopped the two metres (thank goodness!) to the bathroom, emptied, tucked a wad of toilet roll in the gap and went to find my appliance bag: time for another 6am bag change. Lovely.

It's surprised me how much this has affected me today, actually. I mean, I still haven't experienced a leak, as such, but the closeness of the situation has both put me on edge and lowered my spirits. Neither are probably helped by the fact that I didn't get back to sleep properly after the change and so I had, in total, around 4.5 hours sleep last night.

We got back late last night from a trip into London. My dear husband & I frequently attend a bar where they do a lot of gin events, and last night was my first such trip since my operation. It was great to see our London friends and get back into wider company, although I won't deny that I was quite anxious about pretty much everything (from emptying in a public bathroom stall to what to say to people as to why I've been absent for two months). It went well, though; I emptied without any problems, had no leaks and only a couple of awkward silences where people were obviously wanting to say, "How are you?" without implying that they wanted the whole story on my absence. I enjoyed myself and it was wonderful to see my husband back in another of his "natural environments", full of energy and enthusiasm and smiles.

In other good news, the alcohol that I tried on our trip gave me no ill effects, and I chose what I wanted in the pizza restaurant and, also, received no "punishment" for doing so (although I'm amused to note that spinach - even well-chewed spinach - doesn't digest completely in the small intestine, despite being a mere leaf). I made sure to drink lots of soft drinks throughout the evening, too, and - fortunately, given the impromptu bag change requirement - awoke with no hint of a headache, nor any other signs of dehydration, for which I'm very grateful.

It was wonderful to get back to normal, for those brief moments when I forgot what has happened over the past two months and just be myself. I can see why getting back into these kinds of things are good for you, even if you do have the occasional accident. Leaks will happen, but they're nothing to be ashamed of. Just keep smiling, deal with the physical implications, and remember that that operation saved your life.

Thursday 19 May 2011

Things to pack for a hospital stay

My own hospital admission was an emergency and therefore wholly unexpected, but whilst posting on the IA Support Group forum (which, by the way, is marvellous and full of wonderful, friendly and very helpful people!) today, I had a little think of what sort of things I would have wanted to pack in my overnight bag, for future reference.
  • ear plugs - sleeping is tricky in hospital (sometimes through no fault of anyone, there are just lots of people around at night, some working, some sleeping, and they can make noise) and whilst I managed okay by using my mp3 player and headphones to "zone out", ear plugs would have been a big help.
  • multiple nighties & dressing gowns - I was sick twice over my stuff from home and had to wrap myself up in a blanket until my husband could take it home to wash.
  • comfy slippers - my feet were swollen both before and after surgery and so I had to buy new ones anyway, but some comfortable slippers are a must. 
  • pretty pyjamas - as the rest of me was pretty swollen, too, and because of various tubes, I stayed in hospital gowns for a while, but it was so good to get into some pretty pyjamas instead; I even had what I called my "dress pyjamas" for when guests came to visit!
  • notebook - I kept a food diary once I could scribble legibly and this was somewhere where I could note down any questions that I had for my doctors when they visited every morning.
  • dry shampoo - I coped surprisingly well with dirty hair, given that I normally feel horribly grubby if I don't wash it every day, but a couple of friends bought me some of this and it was a big help, as I was able to do it by myself in my bed and it made me feel clean and relaxed.
  • hairbrush & hair-ties - one of the main reasons why I was able to cope with my hair being dirty for so long was that my mum put it into plaits for me (I became known as "Dorothy" by some of the nurses!).
  • various toiletries wipes - easy-to-use and quick-to-hand; lots of family & friends bought me a variety of these and they were great for when I was still finding it painful to get all the way to the bathroom to wash. 
  • toothbrush & toothpaste - self-explanatory (and this was something me & my dear husband managed to remember!).
  • tweezers - no-one should have seen the state of my eyebrows after 2 weeks of illness and another 2 of post-surgery recovery. Fortunately, after three of those weeks, my wonderful mother-in-law bought me some in. It's a silly thing to worry about, on the grand scale of things, but I found that it was sorting little things like this out that really improved my spirits.
  • magazines - I packed my Kindle, thinking hospital would provide a great opportunity to catch up on my reading (I also hoped to knit a few jumpers, learn to crochet and do some cross-stitch), but quickly discovered that, post-surgery, I had nowhere near the required concentration or attention span to read a book. I could just about manage snippets from magazines and so was glad when my parents brought some along with them (they gave me a break from ileostomy leaflets!).
  • enough money to buy a television card... - given my lack of concentration, I was so grateful for daytime television! Even when I wasn't allowed to eat and all there seemed to be on were cookery programmes, it was something to pass the time. There were also some times where I had found it difficult to talk and so, rather than force my poor husband to carry the conversation for multiple hours, we would sit and watch the television together (with subtitles) and make little comments, like we do at home. It made me feel so much better! 
  • phone charger - self-explanatory. I could use my phone on the ward and did so, a lot. I emailed, texted, and occasionally called friends and family, who helped me feel more like myself.
  • a blanket - we have a few cheap, fleecy blankets at home for snuggling under in the winter and, with hindsight, I would have appreciated having one of these. The hospital bedding, whilst adequate, was heavy and decidedly non-cosy (generally being cold unless being in immediate contact with a warm part of your body for longer than five minutes). 

Tea time!

Talking of hunger pangs... stomach says it's time for elevenses! :)

Fighting grouchiness

This morning I am fighting grouchiness, as I was awoken just before 6am by a bag ballooned with gas. I fidgeted for a few minutes, hoping that this might - somehow - settle things, before deciding that I would just have to get up and empty it. I was lucky that I did: when I got to the bathroom, this is what I found:


That is a picture of yesterday's bag seriously coming away from my stomach. I have to admit, I was impressed that my bag didn't leak, despite 95% of the adhesive on the left-hand side having completely failed. It was actually pretty snug by the stoma itself, I just seem to be having a bit of trouble with the adhesive on the outer edge of the left-hand side. I guess this is probably due to sweat or something? The bag doesn't seem to have stuck well there for about a week now; I'll have to speak to my stoma nurse about it.

Hunger pangs

Anyway, I changed my bag (slowly and very sleepily) and got into bed, only to find that my stomach had woken up and was - quietly at first - demanding food. In addition to the alterations in my sleeping pattern, my post-operation hunger pangs have to be another thing that I find rather strange.

My stomach has always known, and had no qualms about telling me and the rest of the room, when it feels it is meal-time (I once had to excuse myself with a very red face from a tutorial at university, because my stomach was threatening to dominate the discussion); however, none of these pangs have ever been painful. Now, they are. This is probably just because I'm recovering from major bowel surgery (and slight malnutrition), but I'm finding it difficult to appreciate the manner in which my body keeps demanding that I do things (like wake up, when I want to lie in, or that I eat when I feel like my last main meal was ten minutes ago!).

Every time I think things along these lines, I think I should shut up and be incredibly grateful that I didn't have to live with severe symptoms of ulcertive colitis for longer than two weeks prior to my operation, and that tends to calm me down, but all of this is still so alien... So is my feeling grouchy so often. I've found myself apologising to family (especially my dear husband) for unreasonable grouchiness or snappiness more regularly than ever before, and that shocks me, too, because I've never had too much of a temper to ever worry about controlling (!). So many new things to learn! The doctors never told me that one of those things would be how to fight grouchiness!

Wednesday 18 May 2011

Struggles with sleep

I apologise for jumping around a little bit (from my operation to the present day, some six weeks afterwards), but I really don't feel like I have enough energy today to write the second half of my hospital experience. The reason for this is sleep, or rather, a lack of it.

Now, I am extremely grateful that, due to the skill of my surgeons and a lot of luck, my wounds have now fully healed on the outside and my pain is now restricted to when my curiosity overrules me and I prod my scar, or when I sneeze or cough. As a result, I'm able to sleep relatively well, even on my side, with suitable support from some cushions, but some nights, things just don't go right, for one reason or another, and I feel it a lot more at the  moment as I'm generally so tired anyway.

Last night was one of those nights. I half-woke up a couple of times, feeling feverish and sticky, but was so exhausted, I just tried to roll over and find a cooler section of the mattress. Having never previously had much trouble with sleeping, I have to admit that I've found this to be something that I've struggled with since my initial illness last month, and something that I hadn't considered being affected in the long-term. Hopefully, as with most things, this will settle down as things heal and I get used to my stoma, but so far here are the variety of issues currently affecting my slumber:
  • going hot/cold;
  • pain (recently, only due to blockages or indigestion, thankfully);
  • pressure on my stoma/needing to empty my bag;
  • needing to urinate (due to increased water intake); and
  • being uncomfortable sleeping on my back (or, generally, not being able to easily roll onto my stomach, which I regularly did before my surgery).
I tell you something, though: at least I don't have a tube down my nose or out of my stoma bag (and taped to my leg) any more! I'm sleeping so much better at home than in the hospital ward, I really shouldn't grumble at all!

Tuesday 17 May 2011

Whilst waiting to drive...

Today, I finally mustered enough energy and enthusiasm (only six weeks after my operation!) to delve within my collection of driving-related paperwork and find my insurance documentation and telephone them to make them aware - as my nurse suggested - of the fact that I had major bowel surgery.

My "mustering" of enthusiasm took six weeks, because I have a general dread of calling up car insurance companies, having experienced many previous phone calls where I rang with a clear question and found myself putting down the receiver at the end of the conversation with only a vague answer and the bitter realisation that I hadn't been persistent enough in my questioning and therefore would have to call again for clarification.

Despite this dread, it appears I haven't learned my lesson and, sure enough, today I had to call twice. When I was discharged from hospital, the nurse who finalised my paperwork said that most people wait 6-8 weeks before driving and that I should contact my insurance company, just in case they have any special rules or waiting periods. In addition, I should only drive again when I can manage an emergency stop in my car without any trouble or pain.

The first person I spoke to seemed a little off-guard at my question and told me that I should be phoning the DVLA rather than them, as they are people who set the restrictions. They also said that the company couldn't accept my or even my doctor's opinion on my readiness to drive, only the DVLA's.

Half a minute after I put the phone down, I realised I should have questioned further. Instead, I did a Google and found this useful snippet of information hidden within the 'At a glance guide to the current medical standards of fitness to drive':
Driving after surgery
Drivers do not need to notify DVLA unless the medical conditions likely to affect safe driving persist for longer than 3 months after the date of surgery (but please see Neurological and Cardiovascular Disorders Sections for exceptions). 
Therefore, licence holders wishing to drive after surgery should establish with their own doctors when it is safe to do so. 
Any decision regarding returning to driving must take into account several issues. These include recovery from the surgical procedure, recovery from anaesthesia the, distracting effect of pain, impairment due to analgesia (sedation and cognitive impairment), as well as any physical restrictions due to the surgery, underlying condition, or other co-morbid conditions. 
It is the responsibility of the driver to ensure that he/she is in control of the vehicle at all times and to be able to demonstrate that is so, if stopped by the police. Drivers should check their insurance policy before returning to drive after surgery.
So I called my insurance company again, armed with this information. The second gentleman that I spoke to acknowledged this and said that that was all fine and that there weren't any special rules set by them - if the DVLA haven't stopped me from driving, then they're satisfied that I'm safe to drive. I also specifically asked, "Does my surgery affect my policy?", to which he said it didn't. Well, I'm happy enough with that. I might not be driving for another couple of weeks (mainly due to tiredness and a lack of concentration now, more than any pain), but it's good to have finally checked the box against the "Inform car insurance" item on my to-do list!

Wednesday 11 May 2011

Getting a stoma, part I

So how did all of this start? If the question was why did all of this start, I honestly don't know yet. The diagnosis made by the doctors in hospital was ulcerative colitis, which is a type of Inflammatory Bowel Disease (IBD) and causes ulcers to form in the large intestine (colon) and rectum. This results in inflammation and, therefore, pain and diarrhea. There are various other symptoms, but as I'm not an expert (certainly not yet), if you want to read more, I'd suggest reading the NHS Choices page.

Most people with IBD (of which Crohn's Disease is another type), from what I've read so far, tend to experience a range of severity of symptoms in bouts or "flare ups". These can be managed with medication and adaptations to diet and the disease can go into remission. Surgery to remove the diseased colon (or ileum/small intestine, depending on where the inflammation is) is usually considered only in emergencies or if the disease is causing lots of problems.

My body, however, decided not to do things by halves (as amusingly put by a friend in a get well soon card!), and instead launched one huge flare up with no warning. Two months ago, I started feeling feverish, before starting to suffer from bad diarrhea, vomiting, and pain in my abdomen. This continued for a week, during which I ate hardly anything.

My doctor, thinking it was a stomach infection, gave me antibiotics and suggested that I attempt to starve it, so I continued not eating for another few days, during which my pain worsened to the point where I was forced to sleep upright in a chair, because I was finding it difficult to lie down and get up again in the time required to make it to the bathroom. I was weak, tired, and in pain, and so when my stomach and legs began to swell up, I asked the doctor to make a home visit. He hospitalised me that day, and I remember being glad that I would be going somewhere where they could, at least, give me more powerful painkillers, sleeping medication and food through a drip. A few days, and hopefully I would be out and about again and eating. Oh, eating! I missed eating almost as much as I missed sleeping longer than two hours straight.

When I got to the hospital, they immediately put me into a side room, as I had unexplained (and bad) diarrhea. I was also put onto an IV drip, which was a new experience for me (I'd never been into a hospital for anything more intrusive than a blood test or x-ray), and - now that I think about it - I can't even remember when they put that in. My main memories from the first couple of days were going to the bathroom, trying to convince the CT scan doctor that I wasn't pregnant (because the ward nurse had misplaced my urine sample and therefore not done a pregnancy test), and having to change out of my own clothes because I was so swollen that they didn't fit.

Two days later, following multiple x-rays, my CT scan, and many blood tests, a doctor came to see me to say that they thought I had IBD and that they were concerned that my colon might perforate (or tear), so they wanted to operate and remove it.

My first thought was: "Hang on, don't I need my colon?", but I kept my mouth closed and the doctor proceeded to explain that they would form a stoma from the end of my small intestine and I would have to wear a pouch or bag over it.

My second thought was: "Are there any other options?", but, again, the doctor answered before I could speak and said that they were recommending this as emergency surgery, to take place as soon as possible, because otherwise I might die.

I was in mild shock at this point. At no point in the previous two weeks had I considered the possibility that what was happening to me was anything that antibiotics and rest couldn't fix, let alone that I would need surgery, that my body would noticeably change, or that my life would be in danger. I cried a little bit, hugged my wonderful husband, and took some deep breaths. I was going to have an ileostomy.

An Introduction

Welcome to 'Tea & Jelly Babies'! I apologise for the slightly cryptic blog title, but I'm not especially good at coming up with them and really wanted to get straight onto actual post content. There is, however, some logic to it:

  • tea, because that is my favourite drink and has been for years; and 
  • jelly babies, because they have, relatively recently, become my snack of choice.
I never used to eat jelly babies, but on 11th April 2011, I had emergency surgery to remove my colon, or large intestine, and now have an ileostomy, which is where they take the end of your small intestine and sew it through a hole a few inches from your belly button. The small piece of intestine that is outside of the body is like a little, red, moist "nobble" and is called a stoma. Bodily waste (or stool, or poo, or poop, or whatever you want to call it; I frequently find myself using the oddly impersonal term "output"!) then comes out of the stoma, to be captured in a bag or pouch that is stuck over the top.

As the colon is where a lot of water is removed from your output, I have been coming to terms with, amongst many other things, having very watery output. Jelly babies are one of the many foods recommended to people with ileostomies to help thicken things up, along with marshmallows, mashed potato, apple sauce, bananas, and smooth peanut butter. I'm a fan of all of these except peanut butter, but jelly babies are my favourite.

And hence, we have "Tea & Jelly Babies".

I hope, within the posts of this blog, to chronicle my thoughts and feelings as I continue to recovery from my surgery and learn to live in harmony with my stoma. So much has already happened so far, but I didn't have much concentration and so didn't think of keeping an electronic diary; instead, I have some scribbles in a notebook that I may attempt to write up in the hope that they are useful to someone (!).