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Crohn's Disease Forum » Surgery » Stoma Subforum » Will I ever feel normal again


 
11-30-2012, 04:00 PM   #31
Hobbes650
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So what should I be doing over the next 18 days to prepare myself?

Go the spa! Seriously, taking your mind off eveything is the best thing. Or perhps make a grocery list of things you don't eat now but would LOVE to start eating again in a few weeks. I could recommend some care products and cut-to-fit pouches, but the hospital will probably give you supplies to take home and that's a good starting point. I do like to use 2-inch paper tape to provide some reinformcement and you can get that at any drugstore (although, it's much cheaper to buy it online from the vendor you choose to buy your pouches at). Hang in there, almost done!
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Hobbes650

Ulcerative Colitis 1986
Complete Proctocolectomy with j-pouch 1987
Permanent Ileostomy 1991
Crohn's Disease (just inside stoma) 2012
No meds post 1987 surgery to 2012

Current Meds:
Pentasa 3000mg daily
Imuran (Azathioprine) 100mg daily
Folic Acid supplement: 1mg daily
Mulit Vitamin/Fish Oil or Flaxseed Oil daily
Tumeric and Boswelia occasionally.
11-30-2012, 04:14 PM   #32
Terriernut
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The best thing to do is ask to be seen by the stoma nurse that will be helping you. You can also see if they will give you a 'fake' stoma to practice with.

Can you tell me if it will be open or lapro? Colostomy or Ileostomy? Read up on everything. And get to the beauty therapist and the hairdresser! Wax, manicure, hair cut, etc. Dont laugh! You will not want to do these things and you will feel like a Yeti.
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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!
4gm Pentasa
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11-30-2012, 05:05 PM   #33
Jaano711
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Hi maimme
At least you now know when. I recomend going to this page http://www.crohnsforum.com/showthrea...t=22958&page=2
There are some great ladies pre surgery tips. It was great, all the jobs took my mind off the surgery

As a bonus, I ran into an old friend 2 days before the op and she couldn't believe how fabulous I looked.
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11-30-2012, 05:10 PM   #34
Hobbes650
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Hi maimme
At least you now know when. I recomend going to this page http://www.crohnsforum.com/showthrea...t=22958&page=2
There are some great ladies pre surgery tips. It was great, all the jobs took my mind off the surgery

As a bonus, I ran into an old friend 2 days before the op and she couldn't believe how fabulous I looked.

Wow. I was real curious to see what's inside that link and being a male, got the door slammed in my face. Must be a lot of talking about shoes.
11-30-2012, 05:13 PM   #35
Terriernut
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Thank you!! I just moved the thread to the surgery subforum. So now the 'guys' can read it and be jealous (not)
11-30-2012, 06:03 PM   #36
Susan2
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On a note about more serious things - get yourself as fit as you can. Lots of sleep, moderate exercise, nutritious food. The healthier you are when you are operated on, the more chance there is that you will heal better and quicker.

But I always have my eyelashes tinted before I go ito hospital!
11-30-2012, 06:11 PM   #37
2thFairy
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I made a ton of applesauce before surgery and froze it in single serving size freezer cups. It was heavenly after I got home from the hospital and is one of the top allowed foods after stoma surgery.
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Ulcerative colitis

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"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
12-04-2012, 11:06 AM   #38
maimmie
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Ugh 2 weeks until surgery. I'm so nervous. I keep forgetting why this is a good idea and questioning everything.
My bum is so painful these days and I feel like i'm using too many pain killers. I keep thinking I may need to try to get into surgery sooner because of how much it hurts but then a get all scared and think nope I'm not ready anyway.
How do you ever mentally prepare yourself? is it normal that I'm going into surgery still not sure its the best choice?
12-04-2012, 11:10 AM   #39
2thFairy
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Oh my goodness, I flip flopped in my decision about surgery about 20 times a day up until the night before surgery during the prep. Somehow, I was in a calm state at that point, with only flutters of "ohmygod ohmygod ohmygod" every now and then.
12-04-2012, 11:13 AM   #40
maimmie
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I seriously feel like I could throw up and I'm sure its only going to get worse as it gets closer. ugh and what was I thinking adding the stress of this to the stress of getting ready for Christmas!? I will never get everything done!
12-04-2012, 03:28 PM   #41
Nyx
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Don't worry about Christmas! Your family and friends will be so happy that you're out of surgery and doing well that Christmas will take care of itself...just do what you can and don't worry about the rest.
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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)!!

12-04-2012, 03:35 PM   #42
maimmie
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I got my appointment to meet with my stoma nurse today. They don't come out to my area so I have to drive a half hour to them on the 14th.
Everyday this gets a little more real and I get a little more freaked out. The waiting is the worst! well maybe not the worst but its definitely no fun.
12-11-2012, 08:42 AM   #43
maimmie
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One week!
Just wondering for those of you that had fistulas and abscesses, when did those stop bothering you?
mine are so painful right now and bleeding and draining a ton! Its a good reminder as to why I'm having surgery anyway.
12-11-2012, 08:54 AM   #44
Susan2
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Only a few more days until your appointment with the stoma nurse. Have you written a list of the questions that you want to ask?
12-11-2012, 02:18 PM   #45
maimmie
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No, I know I need to do that. I'm sure if I don't I'll draw a complete blank when I'm there.
12-11-2012, 02:45 PM   #46
Nyx
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One week!
Just wondering for those of you that had fistulas and abscesses, when did those stop bothering you?
mine are so painful right now and bleeding and draining a ton! Its a good reminder as to why I'm having surgery anyway.
Mine felt better almost immediately (right after surgery was a write off and the drugs were so good that I didn't really care what I had going on...lol). Since I have a recto-vaginal fistula, it felt better right away since there was nothing feeding it after my plumbing was disconnected so to speak. I still have it, but it's dormant and doesn't bother me at all.
12-14-2012, 03:26 PM   #47
maimmie
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I had my meeting with my stoma nurse today and of course though I had a list of questions all ready to go, I forgot it at home.
Oh well I really feel most of my questions have been answered on this site anyway.
She did give me a couple different bags to practice/play with. and she marked my stomach where the stoma will most likely be.
It definitely makes it extremely real!
Afterward we stopped for lunch and as I was eating slowly and thinking I should pack the rest up to go home another thought crossed my mind. Its going to be so nice to eat my food and not worry about how its going to effect me. How nice will it be not to think about how long I have to get home before my food comes back out.
I may be beginning to see how this could be my liberation.
I'm still completely terrified of the unknown though.
4 more sleeps!
12-14-2012, 03:36 PM   #48
Terriernut
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It's gonna be ok! Now I will warn you....you might gain weight! You might be able to enjoy food and life!

It is a tough surgery, and we understand this isn't easy. But, you aren't going through it alone.

I hope this surgery does give you every chance to feel well again!
12-14-2012, 04:50 PM   #49
gmm
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from someone facing the same dilemna, best of luck, could be the best christmas pressie youll get
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right hemicolectomy, gallbladder removed,and a few perianal abscesses operated on, currently at stalemate with the surgeons over options,2013 took a gamble on surgery and lost, ended up with an ileostomy in september
12-15-2012, 04:27 AM   #50
Jaano711
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It is perfectly normal to be terrified of the unknown. If you weren't I would probably be really worried.

Hold onto the liberation and all the good changes that this operation will bring you. I know that my positive hopes for the future where what got me through. It may not be easy at times but I believe it is the best crohns op I have had in terms of what I have gained. Yep the gaining weight part is a bit of a worry. But food is so much tester when it's not associated with pain.

Wishing you the best possible outcome. As GMM said it may well be the best Christmas pressie, but might be in the new year when you realise this.

Thinking of you
Jano
12-15-2012, 09:24 AM   #51
bigtruck
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Keep your chin up and good luck, it will all be worth it.
12-15-2012, 09:30 AM   #52
2thFairy
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Hey bigtruck!!! Long time no see!

Maimmie, you should make a list of all of the food you are going to eat when you are fully recovered....all of the food you have been denying yourself. There will be some restriction for the first couple of months while your stoma shrinks down and settles, but no more restrictions due to "where is the nearest toilet"!
12-15-2012, 09:33 AM   #53
2thFairy
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Oh, and in case no one mentioned it before, CHEESECAKE is good for thickening up your output. Yes....CHEESECAKE!!! wooHOO!!
12-15-2012, 09:52 AM   #54
maimmie
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That works for me! Cheese cake is my favorite! It will be nice to have a good excuse to eat it!
12-15-2012, 12:04 PM   #55
bigtruck
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Hi there miss fairy how is it all going? I've not been about in a while.
12-15-2012, 11:43 PM   #56
Jaano711
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Hi Bigtruck
Good to see you back. Hope everything is going ok with your health.
Merry Christmas
Jano
12-15-2012, 11:44 PM   #57
Jaano711
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Hi Maine
Yep I've been experimenting with cheese cake recipes. Also baked rice is also excellent to thicken output, and really easy to make.
12-17-2012, 11:17 AM   #58
maimmie
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Okay so tomorrow is the big day. I'm quite nervous. I don't feel ready at all right now! My bag is mostly packed and so is my son's all ready to go to grandma's house for a few days. I've got my computer loaded with movies and tv shows to keep me busy. My hubby surprised me with a new blackberry playbook last night and has downloaded books for me to read. I'm feeling very lucky to have him. He is so supportive and assures me he doesn't care about me having a bag. He just wants me to get healthy. I wish I could be as ok with it as he is. Why is it everyone else is so sure this is going to work out and I can't stop expecting the worst. I'm so sure I'll be one of the ones who has complications, dehydration, infection, leaks, rashes. I'm convinced I'll get them all! I guess I'd rather think the worst and be pleasantly surprised if it's better then that.
Ugh anyway, just venting.
I'm so glad this Site exists!
My nerves are making me crazy today.
Will I have a minute to talk to my surgeon before they put me out. I'm not sure if they are doing a loop or end ileostomy and I'd like to ask. I think I'd prefer an end. I don't know if I have any say. I'd also like to tell him which abscesses are bothering me and see if he can drain them. He said he might drain the one by my tailbone while I'm out but that's not the one that's bothering me most anymore.
I just have so much going through my mind today. Sorry for the long winded ramdomness of this post.
Oh and my real name is Amy. It's easier to type then my screen name! LOL ok I'm gonna stop now.
12-17-2012, 11:23 AM   #59
2thFairy
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Amy, even if all of those bad things happen, you are already ahead of the game by being informed. I only had a few complications while in the hospital, but as each one came up, both my husband and I reminded ourselves that it could happen and were able to stay calm and just deal with it. If it hadn't been for the books I read, I wouldn't have known what COULD happen, and if it hadn't been for this forum, there is no way I would have been as calm about them when they did happen. You should request by every hospital staff member you see, if needed, that you would like to speak to your surgeon before things start. Surely someone can make it happen. It's too important not to. You might even call their office today and make a request that the surgeon call you back today.
12-17-2012, 02:36 PM   #60
Terriernut
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Oh Amy! I can imagine how worried you must be! I was scared too.

The odds are good that you wont have any problems whatsoever. So....do what you can to relax. I know, impossible!

But you are clearly supported at home, you are supported here. So one way or another, it will be ok!

Hope you get a chance to speak to the surgeon first as well. If all else fails, put a post it note on your bum!
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