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Having surgery in a couple of days...

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Posted 3/3/2013 11:22 PM (GMT 0)
Oh yeah, I knew I got paranoid about something pre-surgery: this was it... >_>

Thank you, folks. And just in case any of you missed my later posts, I have had the surgery. Subtotal colectomy with an end ileostomy. Nearly all of the colon went, but the surgeon said as the sigmoid part didn't look too bad, she left half of that. I knew I would never end up with a j-pouch because of the Crohn's; both my surgeon and GI made that plain to me. (In my case I also have Crohn's of the terminal ileum, so it was quadruply ruled out, if you like.)

It all went smoothly. Spent 8 days in hospital. Couldn't get out fast enough. Home now and doing well :p
Posted 3/6/2013 6:08 PM (GMT 0)
Happy to hear that everything went smoothly! It's a sigh of relief.

If you don't mind me asking, your sigmoid wasn't affected, I also assume your rectum....so is this end ileo temporary? You will have then your small joined to your sigmoid? If so, that's great! I too have an end, and a rectal stump to be joined later....been 2 1/2 years. I also had a ATypical disease, made everything difficult.

This is the only forum I can belong to. I can't relate to almost all the folks here. But my compassion is big and my heart bigger. They were there for me, and will be for you. I actually thought the opposite, that this forum, because of it's nature, is not medically opinionated thus unbiased. As you toggle back and forth between forums, understand this is online and things may be perceived differently as to their intention. Our words can become misconstrued when we write personally. I remember someone writing "we are more serious here." Since we are post op, recovery takes time and so do 'bag' jokes! I told some butt jokes (my surgeon told me them) the other day, helps to have humor, shining the light at the end of that tunnel.

Again, happy to hear your home doing well. Take it slow. How is your diet? How is the appliance? Let us know how we can help! Best wishes!
Posted 3/6/2013 9:37 PM (GMT 0)
Thanks, windy city :p

I don't think the sigmoid and rectum have ever been badly affected; at least not in comparison to the ascending and transverse parts of the colon, which have always been bad. Can't remember the surgeon's exact words, but she said she left half of the sigmoid behind because that didn't 'look too bad' - or something... :-/

I asked the surgeon the same question about the end ileostomy being temporary and she said no >_>. I think by that she meant it wasn't a loop ileostomy, which usually is only a temporary one. Whereas an end ileo can be either permanent or temporary. Assuming everything stays well, I can have my ileo joined to my sigmoid later on. That is not something which I have definitely decided to have done, though: I might just choose to live with a bag for the remainder of my days.

Tbh, I wasn't really thinking rationally when I made this thread. Whatever I said about this forum, I am sorry :-/ Pre-surgery nerves, and so on, made me a bit nuts.

I am a lot calmer now, although last night I went through my lowest patch since the operation yet. Luckily today was a brighter kettle of fish. I'm just taking each day as it comes. I don't like analysing my feelings too much, especially when I am low and tired. That is because it can trigger off more serious feelings of anxiety, dread and depression, which, when I am exhausted, are too hard to fight off with thinking. But for the most part, I have been in normal to good spirits and not depressed, so that's good. (I'm tired right now, rather than depressed - pain meds are kicking in! <_<)

My diet is going fine, apart from occasional moments of panic that abdominal post-op pain is Crohn's pain! Does feel like it at times. But aside from that I have a decent appetite and and am eating a wide range of foods. Sticking to a relatively bland diet, but not entirely; eating some fruit and veg, but carefully.

The appliance is all right! Doesn't leak and is comfortable 99% of the time. (Occasionally the end of it chafes against my thigh, especially when walking, but that hasn't happened for a while now.) That said, I've only used one brand and would like to try a few others. Seeing the stoma nurse tomorrow, so will ask about that.

I know I've got a few questions, but right now my pain-medicated brain can't summon them up ¬_¬. I'll ask here as stuff occurs to me. Cheers :p
Posted 3/6/2013 10:43 PM (GMT 0)
NCOT, maybe try some ostomy underpants. I love them, they are very Bridget Jones and keep everything tucked in. I've got some from comfizz and some from vanilla blush, both are UK companies. The comfizz ones are great after surgery and for the gym, as they give you great support around your abdomen. The vanilla blush have an internal pocket and a great in the summer. Great thing is in the UK you can get them on prescription, check out their website and they also get the prescription from your GP. Also don't forget to request your prescription exemption certificate which you are now entitled to with a permanent ostomy. Then you won't have to pay anything for your underpants. turn
Posted 3/6/2013 10:58 PM (GMT 0)
Nice one, Lovetoski. Thanks for the underwear and prescription tips! :p

The stoma is a bit... protruding at the moment, shall we say <_<. I know it's meant to shrink in size over the next few weeks and months, but even so... Luckily it's winter and not summer. For the moment I'm just concerning myself with wearing what's comfortable, but sooner or later I'm gonna want to make sure there is no bulge at all!
Posted 3/6/2013 11:56 PM (GMT 0)
Or for a cheaper underwear solution, just wear two pairs, or wear the really strechy kind! Holds them in great. I can't stand to have the bag touch my leg, that's the only time I dislike having it, is when it touches my leg!
Make sure you get the underwear that comes down your leg a little. Like boyshorts for girls or boxer briefs for boys.
Posted 3/7/2013 12:07 AM (GMT 0)
I find as long as my underwear is snug I can get away with just folding the bottom of the bag over by an inch or two so it fits into the front of my undies and doesn't hang down onto my leg.

Be happy that your stoma sticks out!!! Some people have flush stomas and it makes pouching so much harder. My stoma sticks out quite a bit and when I'm changing the appliance I can just hang a garbage bag off my waistband and any stray output will drip into it without getting on my skin.

Are you using a one piece or two piece system? One pieces will lay a bit flatter.
Posted 3/7/2013 1:21 AM (GMT 0)
try midi size bags. They won't reach long enough to chafe your thighs. To the best of my knowledge.. coloplast is the only manufacturer that makes midi size bags.
If you use those with boyshort style underwear... you won'te need all those other fancy ostomy underwear.
Posted 3/7/2013 2:56 AM (GMT 0)
Well so far I'm just wearing my usual underwear. Sometimes have the bag tucked in or out, depending on where I am. Haven't thought about special underwear yet; this is going to require some thought... ¬_¬

(Have been more worried about trousers and tops, tbh. Jeans are too tight/inflexible for comfort at the moment and the stoma bulges through most of my tops. But my underwear still fits at least!)

@Pluot - Oh yeah, I know it's better to have a stoma which sticks out. First learnt that on the internet, then I asked my stoma nurse about it and she agreed. I asked her if the surgeon also knew that; she said yes, they (her and the other stoma nurse) had taught the surgeon how to make a good stoma <_<.

So, yeah, although the stoma is physically in the way at times, I'd far rather deal with that than with leaks.

One piece system. I'm still barely aware of what a two piece system is >_>. That's one of the things I'll ask the nurse about tomorrow.

@ddd45 - Thanks. I'd like to try the smaller bags, so am gonna ask about them.

Nodding off; off to bed... goodnight folks :p
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