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Crohn's Disease Forum » Surgery » Stoma Subforum » Ileostomy surgery tomorrow - relieved, excited and a little intrigued!!


 
01-07-2012, 06:26 AM   #1
Samboi
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Ileostomy surgery tomorrow - relieved, excited and a little intrigued!!

Quick précis -
Infliximab infusion - epic fail! But gave me a brief taste of constipation!
Constipation resulted in what was thought to be a thrombosed hemmy - that made a rather colorful explosion in my toilet bowl!
The excruciating pain drove me to hospital (actually - the driving part was horrendous! Had to get my mum to collect me!! Ouch!!)
Surgery conducted - not by my preferred CRS - who was on holidays.
Sent home .... Hmm ... Painful!!

The pain seemed to worsen. It literally felt like a burning stick had been rudely shoved up my butt. I was in agony. Endone did nothing. Neither did lignocaine, Emla, or rectogesic. Sitz baths numerous times per day, was down to one small bowl of noodles per day. The thought of having a bm put me into paroxysms of fear. When they did happen - I was traumatized. Just rolling over in bed involved so much pain I had to steel myself to do it for about five minutes prior.

My mum came over to do my errands on Thursday - and brought me back to the hospital. I had the admitting doc approach me with a sigmoidy thingy. My mum nearly punched him! I told him no way - he could look at the outside if he was gentle - but no entry without anasthetic. He then understood a little better once he had a look.
Morphine - my new friend - finally delivered relief. Finally saw the CRS the next day. He ordered pain relief and took a cautious see how we go approach. My cries of pain accompanied by grunting and various other animalistic sounds terrified my very lovely 82 year roomie who was in to get a skin cancer on her leg removed. Poor dear could Not escape!! By the end of the day - he booked me in for an EUA early this morning.
My mum came over to do my errands on
01-07-2012, 06:46 AM   #2
Samboi
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Quick Précis Part Two -
Sorry - writing this from my phone from my hospy bed and I'm a bit of a luddite - so not really sure about what I'm doing!!

Also managed to traumatise a nurse with my pain. Poor thing came in to the room - I was white faced, tense and sweaty. She asked me to describe my pain, which I did through gritted teeth (from pain) whilst gripping the bed. Morphine arrived, my usual good humor returned.

EUA - prep area - spent crying from pain. Quietly of course - didn't want to make a scene!
Couldn't wait to be put under - just so I could have some relief.
Wake up painless and groggy.
CRS visits me once I'm back in my room and awake.
He shows me a photo of what is meant to be my rectum. It's a bloody ulcerated mess. He can't believe the pain I have endured. I can't either. Without hesitation - he recommends an ileostomy. He seems to have an expectation I might resist. My answer is an unequivocal yes. It needs to heal and I endured two weeks of agony. I want it to be over. My mum tells me later that the family had already voted amongst themselves that I had to do it. I know I have made the right choice.

So I'm tucked I'm my very nice hospy room - enjoying the elevated level of pain relief and wondering about tomorrow. I'm relieved there is light at the end of the tunnel. I'm intrigued about what will be different for me from tomorrow. I kinda wish it came with scaffolding or something big and tough looking - reflecting the damn pain you have to endure to finally get one!! But I think I'll be happy with my little bag and this next phase of my life. And my poor little bum will be happy for the opportunity to have a rest and get better. Fingers crossed - it will all work out for the best!!
01-07-2012, 07:36 AM   #3
Susan2
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Hi Samboi

Sounds like my rectum, but I had a total proctocolectomy as it and my anus were too far gone to save. Apparently they were preserved in a jar as an example for students of just how bad things can get with Crohns.

It took me a while to heal completely, but I have been so much better since. (It was 12 years ago.) I don't take any drugs, except panadol from time to time; I still have to watch carefully what I eat and still have some diarrhoea - usually just as unexplained as before the ileostomy; I need to be careful that I don't get any tummy bugs as you dehydrate quickly with an ileostomy; "accidents" come with the territory of having a bag and it will probably take some experimentation to find what suits you, but there are lots of pluses.

I think that I read earlier that you like travelling. I travel a fair bit and have worked out systems of coping with the bag bit.

Here's hoping that things go well for you tomorrow and that it will be the start of a new and more positive phase of your life.
01-07-2012, 07:48 AM   #4
Samboi
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Thanks for your kind words and encouragement Susan.
They are helping me to think of this as a new opportunity rather than a further affliction.
In fact - all the Osty peeps sell the option really well.
So thank you to all of you as well.
01-07-2012, 07:57 AM   #5
Samboi
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*Stomy's
Damn phone autocorrect.
At least it didn't come out totally weird and more baffling!!
01-07-2012, 10:58 AM   #6
Nyx
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Good luck with your surgery! My rectum was a mess too, and just like you going to the washroom was agony! I have a permanent colostomy and I don't regret it one bit. I hope your ileostomy gives you your life back Keep us posted on your progress when you can. Welcome to our little club
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01-07-2012, 12:08 PM   #7
glum chump
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Hey Samboi

Wishing you a really successful surgery and healing. I have an ileostomy, too, and was the single wisest decision I ever made in my life. Given your story, I'm sure the relief on your body will be most welcome.

Take good care, and when you can, let us know how it all unfolds...

Thinking of you,

Kismet
01-07-2012, 01:00 PM   #8
Terriernut
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Samboi, good luck with tomorrow!!! You sound like you are doing the right thing! When the morphine allows, have a good nose around this sub forum for insights and wicked humour.

Can you keep us updated on your progress?
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
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01-07-2012, 01:10 PM   #9
Samboi
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Thanks Misty. It's 5am here and I'm awake and ready for my shower. Just waiting for my shot of morphine so I can endure my last excruciating bm.
There also happened to be a pretty awesome storm passing through - so got to watch that too!
Doing my last bit of research and a bit of light reading. Had a few quick pangs of anxiety - but then felt reassured. Already thinking of getting a new pair of cargo pants to accommodate my emergency kit!
01-07-2012, 01:14 PM   #10
Terriernut
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You must be in Hawaii? Or where are you luv?

Normal to be a bit nervous mate! Its going in that is the scary bit. Enjoy that shower! It might be a few days before you are up for another one.
01-07-2012, 01:23 PM   #11
Samboi
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I'm in Australia. Melbourne.
Thanks for the tip about the shower.
I will now be sure to savor it!
I forget about those kind of practical things. Like I'm having some serious surgery and might actually be immobile for awhile. I'm hopeless at being sick!!
01-07-2012, 01:28 PM   #12
Terriernut
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I'm in Australia. Melbourne.
Thanks for the tip about the shower.
I will now be sure to savor it!
I forget about those kind of practical things. Like I'm having some serious surgery and might actually be immobile for awhile. I'm hopeless at being sick!!
Its ok, thats what us girls are here for...the practical matters!! LOL. You will be immobile for less long than you WANT to be! They will want you up and walking fairly quickly! And your stoma to be working. And you wont want a shower cause you will be knackered for a bit.
01-07-2012, 01:35 PM   #13
Samboi
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Lol. In my mind - ridiculous deluded thing it is - I'd be up and about - mucking around with my new poop shute, practically running a marathon by close of business Monday!!
I forget my body is so worn down by the repeated hospy visits in the past two months, the lack of nutrition, no vitamin and mineral retention .... no energy ... Toxic drugs ... Etc.
I just have to take it slowly and let myself heal.

And thanks for holding my hand just before I go in - it's very kind of you and I really appreciate it.
01-07-2012, 01:38 PM   #14
Terriernut
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Thats what we're here for mate.

How long now?
01-07-2012, 01:56 PM   #15
Samboi
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It's scheduled for 9am. So a bit to go.
The morphine has kicked in. I've had my last excruciating bm.
Had a lovely long hot shower, washed my hair and I smell all clean and fresh.
Every shower - I realize how weakened I've become. Shower time is my peppy time of the day - thinking about all the stuff I'll do in my day, get excited about all my plans and get my day underway. I'm very particular about my routine and love leaving the bathroom feeling refreshed, smelling nice and ready to take on the world!!

The last two weeks - I can barely dry myself and don't even have the energy to roll on deoderant. Just roll back in to bed. It's pathetic.

But I can hear the cavalry!!
01-07-2012, 01:58 PM   #16
Terriernut
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Good luck sweetheart,the first few days are the worst! After that, you'll be on the mend!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
01-07-2012, 02:02 PM   #17
Samboi
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Thanks Misty!
01-07-2012, 03:47 PM   #18
2thFairy
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Good luck, Samboi! So happy for you that relief is in sight. I am going to have proctocolectomy surgery on January 17, so I'll be watching your experience and learning from it. Keep us posted!
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01-07-2012, 04:03 PM   #19
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Just poppin in to wish you all the luck in the World luv!
xxx
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01-07-2012, 06:05 PM   #20
SallyO
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Lots and lots of luck, you've a wonderful sense of humour despite the horrendous time you've had, I also have just popped in and couldnt help but send you a post!
Hugs xxx
01-07-2012, 06:26 PM   #21
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Hello Samboi! Thumbs up for a successful surgery and uneventful recovery---once you are healed you will feel sooooo much better. I had surgery (severe Crohns Dz) about 3 1/2 weeks ago (colon and rectum excision with ileostomy)---and it no longer hurts to eat--I do not have the big D---and there isn't copious amounts of blood coming from my bum! Yes! Obviously, I am still healing, and am trying hard to be patient with that! Keep us updated--rest! Dana
01-07-2012, 09:11 PM   #22
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Big Hugs to you. you have been through so much, you're right- there is light at the end of the tunnel! you're coping so well.
i got my ileostomy in july 2011, the removed my colon, rectum&anus.
i can't believe the difference- actually have a life now, with no pain
hopefully you will feel the same try and walk the next day but don't push it, you'll make a little improvement everyday..

good luck!!!!! keep us posted!
hannah.x
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01-07-2012, 10:20 PM   #23
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Best of Luck Samboi, sometimes the road less traveled turns out to be the best road of all. I had mine done in 06 and have never looked back. In spite of all the pain and trauma you have endured these last few months, you seem remarkably sane. I'll be praying for you and your new friend. Don't forget to name it, most of us have. I just call mine "my Porta Potty"; it works... Take care ok. Bob from the foothills of Maine
01-08-2012, 06:37 PM   #24
Samboi
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OMG. This is the fourth time I am writing this. How clumsy are my chubby little fingers!! Lol.
Surgery went great. My new little friend gurgles like a little baby, and tickles my tummy!! That was a funny little unexpected surprise!!
Still too scared to eat solid food - tackling that at lunch today.
Had my last excruciating bm. It was the worst one ever. How did I manage that pain for so long. Now my poor little bum can recover - already feels more relaxed. I know I have made the best decision. I wonder how people coped in days of past? How did they do it?

I'm feeling good and ready for the physio to come and collect me for a lap of the ward.
Stoma nurse is coming tomorrow to fit me for my first bag - excited much!!
My parents are thrilled.
Thank you all for your support. So far - so good!! Stoma rating - super awesome!!!
01-08-2012, 06:42 PM   #25
Misty-Eyed
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Wow Samboi, I'm very impressed! I could just about read my texts, there was no way I could text anyone back for a good day or two after my op!

I had all of my colon, rectum and anus removed in October and I think you'll love your ileostomy. I love mine! It's so nice going to the toilet when you like and not feeling like you really need to go! I hope everything goes ok. You sound positive anyway which is always the best attitude to have!
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01-08-2012, 07:04 PM   #26
Samboi
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I feel liberated already.
No more fear about going to the bathroom and the unendurable pain that involved makes me feel like I have already had a massive leap forward in my recovery. I feel so much more relaxed. And I'm excited about being able to walk - not hobble!!

My biggest problem - the brain wants to run, whilst the body is still learning to walk. I get a taste of the freedom and go crazy - which sometimes makes things worse. I just have to remember to pace myself. No marathons just yet!! Lol
01-08-2012, 07:11 PM   #27
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Yea!!! So happy for you!! wooHOO!
01-08-2012, 07:36 PM   #28
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HI Samboi and welcome to the club!!

Try to take it easy and relax. Get plenty of rest. You'll have time to run and jump later!!

Hope your recovery goes well and easy. If you're anything like the rest of us, you'll love your stoma and the new life it will give you!!

- Amy
01-08-2012, 08:12 PM   #29
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Wow!! You're doing amazing! I couldn't have even seen my phone let alone text anything on the first day after my surgery...lol I was out to lunch! But try and take it easy...you don't want to do too much too fast and risk complications with your surgery. Glad it went so well
01-08-2012, 08:22 PM   #30
Samboi
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Good advice thank you.
Just had my first proper meal since my mum's Xmas Lunch. It's been a long time between meals!!
Beautiful steamed fish in a lovely sauce with some mash. Fingers crossed it goes down well and exits at the right place. I'm still a bit scared about the exit bit - but excited to see how it comes out in my little baggy. I'm half expecting to look down and find a little goldfish splashing about in there!! Also wondering if I'll get some exit gurgles and tummy tickles from my new friend.

And heeding the advice of the forum experts - focusing on some rest and recovery time. Thank you all for helping me keep my enthusiasm in check!!
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