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.