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MsCreativity asked in the comments section what my diagnosis is being as I'm an intravenous feeder on lifetime TPN. At least, I think that's what she asked ;-)
Because most people wouldn't know what "Short Bowel Syndrome" is or why one would have it, I decided I'd write a post about it rather than explain in the comments. After all, for me and everybody else in my situation, it's a matter of the more people who understand the condition, the better.
Short Bowel Syndrome is a catch-all diagnosis for anybody who has had most or all of their bowel removed for whatever reason (or was born with very little or no bowel). In my case, a blockage in the artery that feeds the bowel caused my bowel to rot.
I'd been in pain for several months, on and off, with each bout of pain exceeding the last. Eventually the pain became so acute that regardless of what my GP had said about my health improving, Richard drove me to the out-of-hours GP at our hospital who immediately admitted me.
Once in hospital I spent the entire night screaming in pain and no amount of morphine would relieve it. Little wonder really, considering what was happening inside me.
The next morning I was taken down to theatre. The next I remember was waking up in HDU with Richard by my side and tubes coming out of every orifice, a bag on my belly and a tube stuck in my neck. I hadn't a clue what was going on but needed to know what was wrong with me. When Richard told me they'd removed my bowel, I was shocked, to say the least. Surely a person can't live without a bowel?
I now have about 14 inches of bowel left which was, luckily, enough for me to have a resection and get rid of the bag. If I'd have had to continue with that (it was attached directly to my stomach), I really don't think I would have coped. It wouldn't stay on so I spent most of my time on my back with Richard poised with a vacuum suction head, ready to suck up whatever came shooting out of the hole - mostly stomach acid which, if it didn't get sucked away immediately, would burn my skin. You don't even want to think about what my stomach looked like after a month of that! How he put up with spending so much time in hospital looking after me I really don't know, especially as we'd only been together for 6 months when it happened and he also had responsibity for running the home and taking care of a sassy 13 year old step-daughter. Talk about a real life hero!
What I didn't realise at the time—until the doctor told me later—was that I still only had a 50/50 chance of survival. It would be a month until I was told I was 'out of the woods' but those first 24 hours after surgery were crucial as most patients who suffer the same as I did don't live to tell the tale. I was also told that another day and I definately wouldn't have been here now. It's things like this that put life into perspective and is the reason why I'm not that fussed as to whether or not my manuscript is accepted. It isn't as important to me as it possibly is to most because, if they turn it down, I'll still be here. Nothing will have changed. Life will go on and there's always another story to write.
Anyway, because I don’t have a bowel, the only way I can be given nutrition is through TPN, which is a liquid feed given directly into a vein. In my case the subclavian with the line entering my body just above my right breast, travelling below the skin to the point where it enters the vein close to my arm, and then continues along the vein to the heart.
In order to be fed by TPN I hook up to a pump five nights a week (it's something like those you see in hospital when you're put on a drip) for 14 hours. As I also have to have any fluids administered in the same way, I have to be careful not to dehydrate as, unlike people with a normal bowel, I can't just drink some water - mine has to be pumped in. That's a bit of a pain in the butt because it means hooking up again which also means going through all the rigmarole of aseptic procedures. Believe me, that is one huge pain in the rear! Although not quite as painful as sticking a needle in my thigh every day! That's the only way I can adminster heparin, an anti-coagulant that helps keeps me alive. Without it a clot would form and what could happen then is anybody's guess.
Of the possible side effects of TPN, I've experienced all but one.
* My memory's shot - sorry, what was your name again and what time were we supposed to be there and what was it I was supposed to be working on today? I have to make a note of everything
* I often have trouble catching my breath although some days are worse than others.
* I have nights where I'm up and down all night because two and a half litres of fluid going in has to come out again!
* I'm easily confused so no more multi-tasking for me
* Sometimes I vomit several times a day. Not too good if you happen to be driving at the time (yes, it's happened!) but luckily I can go several weeks without vomiting so it could be worse.
* Too much walking (by that I mean a couple of hundred yards) and I'm up most of the night with leg cramps.
* My muscles are incredibly weak so just reaching up to the top shelf to get something down can sometimes leave me needing to rest. Other times I just ache.
* My hands and feet swell up so sometimes my shoes don’t fit. Again, this isn't a huge problem and doesn't happen regularly.
* My blood pressure's ridiculously low so jumping up too quickly can lead to dizziness. I've never actually passed out, though (touch wood).
* Some days I'm so weak I can hardly get out of bed. This happens about once a week on average.
* I have jumpy reflexes. No wonder I lost my popcorn when I went to see "An American Haunting".
There's a strong chance I'll develop osteoporosis and that my liver will eventually stop working as efficiently as it should. If that happens, my skin, hair and eyes will turn green.
I try to not let it get in my way too much, though. Mind you, there are times when it gets me down because ... well, my whole life's been thrown up in the air.
Obviously, there are things I can't do anymore but one thing I've learned is that it's always better to concentrate on the things you can do rather than those you can't. Last night we went to a gig at our local rock club and I even danced! Just to one song, but I did it! It hurt and this morning I'm suffering leg cramps because of it, but sod it - it was fun!
Why did this happen to me? Because I smoked. By the time I became ill I was up to 50 a day but really it doesn’t matter whether you smoke 5 or 50, if your body is susceptible, it'll build up fatty deposits and eventually a blockage will form. I was lucky - if the blockage had formed elsewhere, I could have had a massive heart attack or stroke. As it was, it's just the artery to my bowel and three of the four arteries in my legs that were affected. The blockages in my legs make it uncomfortable to walk, but I do try to push myself as much as I can. Sometimes it's just too painful, though.
Needless to say, I gave up the fags. So did Richard. Sadly, my daughter, Lise, still smokes. More than anything in this world (yes, more than wanting to be published), I want her to give up. I wouldn't wish what happened to me on anybody, and I certainly don't want to see my daughter go through anything even remotely similar. But she's been to the doctor to check whether she has 'sticky blood' (I do) and because she hasn't, she thinks she's safe. But she isn't. 'Sticky Blood' just makes you more susceptible but the lack of it doesn't make you immune.
I'm not going to preach to you, but if you do smoke, please at least think about what you're doing to your body. This isn't a dress rehearsal - we have one shot at life and it isn't until you've almost lost it that you really realise just how damned precious it is. A minute is all it takes to lose it.
LINK
No link today. Sorry.
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Technorati Tags: Total Parenteral Nutrition, Short Bowel Syndrome, Smoking |
I'm feeling a bit numb, m'dear. You'd told me most of this before but seeing it written down like this ... did it help to write it all out?
You were the first person to draw me into the blogosphere by posting comments on mine 'til I got the message and checked out yours, followed your links ... and the rest as they say is (recent) history.
I know you for your humour, your stoicism, your generosity, your care, your talent, your clarity ... and so much more.
I just wanted you to know how lucky I feel to have you (virtually) in my life, Sharon J!
2:30 PM
Sharon! I had no idea. You are an inspiration, woman! Your attitude is wonderful! Thanks for sharing this information.
My husband smokes. He gave up back in Nov and had been doing so good for six months. He recently picked them back up cos of stress at work. I hate it. I wish he would quit. I'm gonna share your story.
:)
4:04 PM
Sharon
Thank you for being brave enough to post this. I've learned a lot through your post and I'm full of admiration for the strong, matter of fact way you have talked about and coped with your condition.
Most people would think that this was enough to cope with and life itself but it is so obvious from your blog that you don't just sit at home and feel sorry for yourself. Your strength and determination is an inspiration - and like debi, I'm honoured to have connected with you through the world of blogging.
Keep well - and I wish you every success in your life and in your writing. I'll be thinking of you - often
Kate
4:21 PM
(((Sharon))). I'm so sorry for everything you've been through, and what you still have to cope with. Words are never enough sometimes, are they?
It's not easy when your life suddenly turns upside down and you're no longer the person you were. I still struggle with acceptance on my 'down' days. If you ever need to rant on your 'down' days don't hesitate to email me.
You are so right, you never realise how precious something is until you lose it.
Sharon, you are a survivor, and an inspiration to us all.
Loads of love and hugs,
Sue :-)
P.S. I'm in limbo-land for the next 8-10 days (without a phone connection and between houses).
Look after yourself, and I'll catch up again soon.
7:50 PM
I've known Sharon for two years and had some idea about all this, but really didn't appreciate what a huge amount she's been through (and continues to go through), because, well, she never really mentions it.
I say this as I've had a wicked sore throat for the last couple of days. And EVERYBODY in my family/children's school/street/phone book knows ALL about it....
Sharon, you're an inspiration... And an example to self-absorbed whingers like me. (hangs head in shame)
8:27 PM
No words, just admiration.
9:38 PM
I'm speechless, Sharon. I sensed you were a real trooper but didn't realize the half of it.
1:25 AM
Echoing what Kate said. That kind of courage and determination is a real inspiration. And it also puts a lot of other things into perspective.
4:48 PM
Sharon, you said you couldn't walk very far and that it was unlikely you'd ever be able to do so again. Something to do with a clot, I think you said. I had absolutely no idea what you'd been through. You truly are a marvel. It's a pleasure to know you.
11:23 PM
Blimey! I don't quite know what to say! I'm quiet for a couple of days and come back to these lovely comments!
I hope you lot don't think I'm some kind of angel, though. I'm not, y'know. I can be really horrid at times. Just ask Richard - he'll tell you.
There's absolutely nothing heroic about any of what I've done. After all, what choice did I have? You have to get on with things because the alternative is just too miserable to even contemplate.
But thanks for the comments, anyway. You've all been really lovely :)
5:03 PM
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