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Crohn's Disease Forum » Surgery » Stoma Subforum » One week until my Ileostomy


04-08-2010, 08:50 AM   #1
CDDad
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One week until my Ileostomy

Hi Everyone,
Well, my operation is just one week from today. I feel like I researched and learned all I could at this point. I think that was my way of coping. So now, I kind of feel like a condemmed man awaiting punishment.

All of the positive and helpful people with stomas have been great. But, I still can't quite shake that feeling of dread.

I got myself marked the other day at Mt Sinai. The stoma nurse was very nice and had one herself. That made me feel like she must really know what she is doing! My mark is about 1 inch below my navel and 2 inches to the right.

Seems likes a good place. Just above my typical belt line.
Anyway, I just felt like bitching and moaning a little this morning.
Thanks,
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Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
04-08-2010, 09:13 AM   #2
Crohn's 35
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Hey Joe we understand! I am with you not wanting one, but some people here are doing amazing and NO pain! I am sure in the future it is in my possibilities and from learning from NYX, I wish I could of done it on my second resection. Might not have been on so many meds that I have endured over the last 8 years.

Vanity goes out the window, I'd sooner be without pain. We are here for ya!! Keep us posted as much as you can! Hugs!!!
04-08-2010, 09:25 AM   #3
kello82
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aw CDD im sorry that you are still having internal turmoil about it
i can completely understand and i feel lucky that my spirit had time to come to peace with the decision before it was imminent. not everyone gets that time, and i wish they did.

can you put your finger on exactly what id causing that feeling of dread? or is just kinda the whole thing gives you a bad sense?
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little girl, you're in the middle of the ride.
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04-08-2010, 10:32 AM   #4
merrywidow
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cddad, have you read "surgery time"? its all about kellos surgery and problems. its great. if that dosent get you ready for dsurgery nothing will. hope all goes well for you.
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fred (stoma) was born on sept 10th 2003


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04-08-2010, 11:17 AM   #5
CDDad
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I did read that compelling forum. I think what is causing my feeling of dread is just the "expected" massive change of life and body image.

Ok, I got used to the 10 inch scar from two previous surgeries, but this stoma will be a living breathing (shit pumping) machine.

I'm sitting here at work trying to imagine dealing with it. Noises it might make in a small conference room with 8 people. Whether to tell my co workers or not, etc.
Oh, just everything, my wife, kids (Daddy, whats that smelly bag on your waist).

I'm just in a foul mood today. I'm usually more upbeat - it might be the lack of sleep - up a lot lately with D.
04-08-2010, 01:45 PM   #6
Jeff D.
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Good luck, I'll be praying for you. Keep us updated.
04-08-2010, 02:42 PM   #7
Nyx
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Sorry you're feeling this way! I think if I had had a choice in my surgery I might have felt the same way; but it being an emergency, I didn't get a choice, just woke up in the hospital with it! You'll see it's not that bad at all. The first night you sleep all the way through without having to go to the bathroom will be heaven (well, it was for me anyway!). And about the "smelly bag" they only smell when you open them, otherwise they don't smell at all. You'll see....it'll be just fine!! Think positive thoughts...and I'll think some for you too
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Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

04-08-2010, 03:12 PM   #8
Astra
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CDDad said:

I'm just in a foul mood today. I'm usually more upbeat - it might be the lack of sleep
There you go, Joe!
Just think how you will feel after pushing the zeds thro the roof for a full night!
Seriously, I know how you're feeling, that dreaded doubting feeling that won't go away, I felt it too before my hysterectomy, whether I was making the right decision, how it was going to effect the rest of my life etc
I made the right decision, it changed my life forever!
You're gonna be ok Joe, think about being pain free and med free! YAY! Bliss!
Good luck, lotsa luv
xxx
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Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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04-08-2010, 04:25 PM   #9
kello82
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CDD i just caught your earlier thread about pain after surg as well.

maybe you can talk to your surgeon and anesthesia team before the surgery and tell them of your previous expereinces upon waking up. maybe they just put everyone on the average dose cause it does work for some people, so no point in giving too much. but everyone is different, maybe they will adjust since you have been thru this already.

the stories in that thread are all so similar, its amazing. the same went for me. if you think about it, it isnt suprising though, when i think about surgery i think about the cutting being the most traumatic, but them having their hands in there, pushing things around, having the retractors in there....im sure that is none too fun for your insides!
i think that is what leaves us with the pain immediately after you know?

just trying to say that i think this pain is a perfectly normal response. try talking to your OR team in the pre-op area, maybe they will be able to treat you differently than the normal patient who hasnt been thru it before.

04-08-2010, 04:50 PM   #10
suzielouwhoo
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sometimes you just need to wallow for a bit and then take a look at it from a new perspective. we all go through so many different emotions in the time leading up to surgery. don't make yourself feel bad for not wanting it, in a perfect world we wouldn't poop out our bellies. it does suck sometimes but you know what it sucks a whole lot less then the pain and cramping and constant search for a bathroom.

you will adjust, so will your family. my boyfriend is great about it and his two children don't even know that i have a colostomy. no one needs to know unless you tell them. you can mask sounds and you get to know your stoma. sometimes you can tell if it is about to become active.

eventually you will get to the point where you can even joke about it like so many people on this forum do. i wish you all the best. keep smiling (when you can), keep breathing and most of all stay happy.

susan
04-08-2010, 08:07 PM   #11
My Butt Hurts
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CDD - I'm glad you were able to vent, and hopefully you're feeling a bit better about it. Just think how great you might feel when you are all healed up!
As for the kids, they are so resiliant. If you treat it as gross, they will think it is gross. If you treat it as total coolness, they will think it's cool.
I personally would tell my coworkers and take a joking stance on it - that's just my personality though. MANY of my coworkers know that they can make poop jokes with me. I don't even mind being known as the air freshener supply girl for our hallway.
I wish you the best with your surgery!
04-08-2010, 08:54 PM   #12
CDDad
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Thanks EVERYONE. You guys are great.

I flew down to Florida today to help my Mother drive back to NJ. That's always fun, 2 Crohnies in the car together for 12 hours 1st day, 8 the next.
She's had Crohns for 45 years with a couple of surgeries too.

Actually it will be a nice way to take my mind off things, get some different surroundings for a couple of days.

Thanks again. It was so nice to come back here and read all the messages of support.
04-09-2010, 02:48 AM   #13
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i'm jealous - none of my stoma nurses have ever had one themselves, and my first one (straight after my surgery) was completely unaware of what it's like to live with a stoma.... all she did was give me textbook and exaggerated advice. the ones i see now are brilliant, but again they don't have a stoma - you're lucky you already have this support system in place, from someone who really knows what they're talking about!

i completely understand your dread... the prospect of any surgery is scary, no matter what it is, and this is an unknown quantity to you - you're going to have a change to live with and attend to on a daily basis.... but it's really not that bad, and when you look back & compare looking after a stoma with the pain and illness of Crohn's pre-surgery, you will totally get why those of us with stomas are so positive, and ok about having one.

stoma noises can be sorted out with little tricks of the trade, odour shouldn't ever be a problem unless you're emptying/changing the appliance, and that you do in private, and can use various deodorizing products.

you'll be fine
04-09-2010, 04:56 AM   #14
Hedgehog
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Hey Joe,
I haven't had any surgery for Crohn's but I had a hysterectomy 15 years ago and I know pre-op is a worrying time even though it's for the best. My op was the best thing for me...glad I had it done. We are all thinking of you and looking forward to the benefits it's going to bring you.
Gail
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04-13-2010, 12:57 PM   #15
Sue-2009
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Hey there CDDad! Hope your feelign a big better...I had an ostomy for a few months before I got the pouch..and I actually never felt better in my life. It is just terrible the waiting game. I know its hard emotionally to deal with, but I think once you get it done you will feel better. I have a jpouch right now, and they are having a hard time getting my crohns under control...so the ostomy may be in my future....and if it helps me to get off the toilet and back to life...I will be looking to you to lean on So, I'll send a hug through the computer and hopes that you will feel better about it. Peace, Sue
04-14-2010, 12:37 AM   #16
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i felt better after mine, course my alternative was death since i'd gotten 10.5 pints of blood in 5 days. you learn to cope, and adapt, i've got huge self esteem issues with mine, but when i take my son to the zoo, and take on a new AA sponsee it all comes into perspective. In many ways my life was forced to change in ways that were very enriching. I was a very shallow person before this ordeal, so i guess my actual quality of life is greatly improved.
04-14-2010, 08:51 PM   #17
ameslouise
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Based on your original post .... your surgery is tomorrow! Good luck!

Come back soon and let us know how it went. I am sure you'll be feeling so much better in no time!

- Amy
04-15-2010, 04:20 PM   #18
Nyx
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I hope your surgery went well today! Let us know how you're getting on...we'll be thinking about you!
04-17-2010, 01:35 PM   #19
acg101
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Thinking of you and hoping you are recovering from your surgery yesterday. Looking forward to hear how it went, How were Dr Bauer and Marion?
Best and quick recovery wishes!!!!!
04-17-2010, 04:55 PM   #20
dreamintwilight
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I'm a little late in reading this thread, but hope your surgery went well and pain was manageable when you woke up Can't wait to hear how you're feeling!
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Marisa
February 2010 - diagnosed with Crohn's disease.
January 2011 - Inflammation downgraded from moderate-severe to mild with no symptoms!
January 2014 - adopted a mostly Paleo diet
May 2015 - still in remission!


Currently Taking
Humira - 40mg/week
Imuran - 125 mg/day
Calcium magnesium citrate
Fermented cod liver oil/butter blend
Culturelle probiotics
Vitamin D
Vitamin C
Biotin
Allegra
04-25-2010, 02:41 PM   #21
Jer's Girl
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Hi CDDad! Hope your surgery went as well as mine. I am looking forward to comparing notes when you come back to the forum.
04-25-2010, 02:47 PM   #22
NatalieMT
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Hope the surgery went well, would like to hear how you got on when you'll able to get back online. Until then take good care of yourself!
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05-03-2010, 11:08 AM   #23
CDDad
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Hey Everyone,
I continued my story in the Treatment forum.

over here:
http://www.crohnsforum.com/showthread.php?t=10188
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