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!

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.

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!

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!

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.

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

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.

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.

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.

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.

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).