The time is quickly approaching...any last minute advice?!

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praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/25/2008 2:34 PM (GMT -6)   
Ok as you guys know i'll be going in tuesday for my ileostomy sad . I was just wondering if there was any advice or anything that i should be ready for during this hospital stay. Any pain outside of incision pain that i should expect? Any questions I should ask the doc's after surgery? Ostomy nurse? Anything I should take with me? Any setbacks I should be prepared for? I'm getting more and more nervous....I don't know... confused
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 1/25/2008 3:15 PM (GMT -6)   

My doctor asked me what kind of pain management I wanted - Did you already do that? I had a choice between an epidural, and Morphine. I choose the epidural, and loved it. I felt GREAT for the first three days after the surgery. Then they took the epidural out and left me with morphine. Boo. I no longer felt so good. LOL. But it is a personal preference, and if you haven't thought about it already, it might be something to be prepared for.

Ummmm....I was really happy I had my ipod with me...I put on headphones and zoned out during the day. Bring something comfy to wear home. In the beginning, the incision site can be painful. I wore loose pants with a waist line that I could pull way up - over the incision.

And good luck - you'll do fine!! Make sure to check back in and let us know what's going on when you can! I'll think good thoughts for you on Tuesday.

:-) :-) :-) :-) :-)
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


Gillcom
Regular Member


Date Joined Nov 2007
Total Posts : 272
   Posted 1/25/2008 3:53 PM (GMT -6)   

Hi,

I just want to wish you well and let you know that i'll be thinking off you on tuesday.

I don't think i can add any more hints or tips to Ash's post, just don't be afraid to ask the doc or nurses anything.

Gillian x

 

 


Ileostomy - Feb 05, Hernia on site.
Fluoxetine - 20mg March 05 - july 06
Citalipram - 20mg July 06 - upped to 40mg now.


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 1/25/2008 4:24 PM (GMT -6)   
Wow - Ash and SF covered pretty much everything I can think of except that I was really glad I had a little pad and pen next to me to write down questions to ask the dr., ET nurse, etc., when they came by the room. I also kept some notes on what was happening and what to expect. A little OCD I guess, but I never would've remembered everything with all the pain meds and so many new things happening.  I wish you all the luck and will keep you in my thoughts on Tuesday. I think you're as prepared as anybody could be and remember you have everyone here on the forum for support.  Good luck!!!

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/25/2008 4:54 PM (GMT -6)   
A pad and pen is a really good idea -- to write down notes you think about.  It is also good to have someone else there with you IF you know when the doc/ostomy nurse will be making rounds to help you remember what all they say.
 
An IPOD is also a good idea.  You may not have the thought process to handle crosswords!  But listening to music can be really soothing and can help ease the pain and get your mind off of it.
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Pin Cushion
Regular Member


Date Joined Feb 2003
Total Posts : 442
   Posted 1/25/2008 6:45 PM (GMT -6)   
Me, I won't go without my laptop, They make me sign a waver itcase of theft, But I can listen to music, watch movies, play games.
The notepad is a great idea I never thought of thanks. I will add that to my "bring this in to me after I get settled in room bag"
The biggest thing I can suggest is try not to stress out this weekend! You will be a much happier and more comfortable person after all is said and done.
I Will be keeping you in my thoughts and prayers
Moderator for the Diabetes forum
 
Sigmoid Colostomy / Crohns / Type 1 Diabetic / Ostioarthritus / Fibromyalgia / Asthma / High Blood Pressure / High Colesterol / Migraines. Ain't life a joy?



* I think it may be time for a colorful metaphor*


EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 1/25/2008 7:31 PM (GMT -6)   
Evansvill Ostomy Association has the best book...I printed a copy and had it bound at Kinko's. It was written by people who have ostomies for people with ostomies. It's 80 pages thick and it covers everything!

http://www.ostomy.evansville.net/ostomyhandbook.htm

Erica
Erica
Crohn's and Ostomy in 2004


EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 1/25/2008 7:37 PM (GMT -6)   
Also bring air freshner...Oust or Lysal works best....for the first 2 days I emptied from my bed and air freshner came in handy. Also I brought and eye mask because at my hospital they drew blood at 3 am and would flip on the light....yikes.
Erica
Crohn's and Ostomy in 2004


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 1/25/2008 8:06 PM (GMT -6)   
Ash covered nearly everything...

Here are a few things I always take to the hospital...ear plugs, eye mask, books, journal, MP3 player, blow dryer, conditioner (they do not have this!), body wash, waterless antibaterial soap, sudoku, list of phone numbers of people to be called after your surgery, extra clothes (I cannot wear that hospital gown... it makes me feel like I am wearing a germ infected dress), hard candies (you cann't eat but you may be able to suck on a jolly rancher), and walking shoes/socks.

Thanks it. Remember, all you really need is a sheet, pillow, and a soft place to rest your head. Get LOTS of sleep!

Good luck! I am so glad you found this forum before your surgery. You are so wise to do all of this research and prepare your mind for the experience. Keep us posted on your progress.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/25/2008 9:37 PM (GMT -6)   
yeah defintely takes some of your own clothes! i went and bought some of those nightgowns like grandmas wear, and i bought them in like 1x (i wear a medium) so that way they wouldnt' touch my tummy, and i wore those for the first few days. And I also took some PJ pants, that i also bought a few sizes too big.
If you have one, take a game boy, that was a great thing to have! i took my ipod, but never listened to it. Lotion is a good thing to take, cause they have icky lotion at the hospital.
Ask your Dr to write you a standing order for gas-x, for some reason that is hard to get at short notice and you will probably get a few cases of bad gas. If you get the choice, choose the epidural. Morphine is your friend (i miss my friend, lol) and also see about getting some phenogren or zofran (sp?) those are anti nausea drugs, and will help especially after you start taking the pain killers by mouth.
good luck!

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 1/25/2008 11:40 PM (GMT -6)   
Make a list of those things you can't do because of your illness. Be creative; anything from rock climbing to hot air ballooning. Give yourself a few months to heal, take out the list, and JUST DO IT!!!!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/26/2008 10:13 AM (GMT -6)   
Praying,
Your "worst year ever" from UC is finally going to come to an end. The only pain I had after surgery was trapped gas, so I would either ask your doctor in advance to write a script for Gas-X or bring your own chewable tablets. Those worked faster for me than the pills.

In case they haven't told you yet, your intestines can take up to two weeks to wake up and start working, so try to stay on a liquid diet as long as you can until your stoma starts working. They allowed me to start eating solid food too soon, and I ended up throwing everything up.

I also wouldn't let them remove the IV fluids before your stoma starts working. When mine started working 10 days after surgery, it was filling up a bag full of liquid every hour! That's not how it's going to be normally. My system was just really backed up. They had taken me off the IV fluids and I was still vomiting, so I became very dehydrated quickly and ended up having to stay in the hospital an extra week just to get hydrated again.

I definitely recommend bringing eye shades and would also bring a cell phone with a charger, so you can call family and friends long distance. I spent a lot of time sleeping, watching TV, and talking on the phone.

Everything is going to be fine. Please don't worry. I'll be thinking of you and praying for you on Tuesday.
Cecilia
 
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/26/2008 10:38 AM (GMT -6)   
u guys are so awesome! i never thought of the eye mask! and i always hate when they wake me up to take blood, and i have no veins so i end up being a pin cushion while they poke and prod.

ASH (or anyone who can answer ) whats a tach episode?

the air freshner and hand sanitizers are great ideas too. I'm glad i found this site before my surgery as well...i would have never thought of these things.

I'm going out today to get some sweat suits and books and magazinne, and othe necessities
Also, how do u know when ur stoma is working? won't the iv fluids cause liquid output from the start?

Amey i hate those gowns too! but i usually stay in them due to all the wires im usually hooked up to!
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


Dancerpeg
Regular Member


Date Joined Dec 2007
Total Posts : 43
   Posted 1/26/2008 2:17 PM (GMT -6)   
Praying4healing,
I don't know if you have read my update on my husband but he will be going in for surgery in February to remove more small bowel. The doctor said he could have short bowel syndrome. Thanks for letting my get my fustration out here and praying for us during our time, now it our turn to pray for you on Tuesday. What time to you go in? You will be fine and everyone gave you wonderful info on what to take with you.
I will be with him durning his stay. Because he will be in Seattle and I live 60 miles from there.
Keep us posted. Dancerpeg

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/26/2008 7:38 PM (GMT -6)   
Praying,
They'll give you a clear plastic pouch to start off with, so you'll be able to see when it starts working. The Ostomy Nurse will give you free supplies and will walk you through changing your wafer the first time. She'll probably give you pouches with cloth covers, so you don't have to see your stoma and the output once it starts working.
 
I just thought of something else... before surgery, you'll want to shave the little blonde hairs on your belly where your stoma and wafer will be. I didn't know to do that, and it hurt so much the first time I removed the wafer, because the adhesive pulled out each little hair one by one! sad Ouch! If you shave first, you won't have to learn that the hard way.
 
Also ask the Ostomy Nurse for some adhesive remover wipes to help get the wafer off. The appliance they give you in surgery is not like the one you'll be using once you're on your own. Also, the output will be watery and frequent in the beginning, but it will slow down and thicken up as your body adjusts.
 
Do you know if you'll be able to bring a laptop with you and if you'll have internet access in the hospital? If not, is there someone who can give us updates on how you're doing? BTW, what's your name? It's good to know, so when I pray, I don't say, "Lord, I'm praying for Praying..."  :-)   
 


Cecilia
 
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/26/2008 9:17 PM (GMT -6)   
you may also want to shave your girly areas too, cause they will cut down into the hair, and if they shave it, they don't use shaving cream, lol.
You could also take anitbacterial handwipes, or alchol hand wipes, for the particulary icky times! Those are really cheap and i like them better than the hand santizer, cause they actually get the stuff off your hands, i keep them at work. You can get them really cheap at walmart or somewhere like that.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/27/2008 9:56 AM (GMT -6)   
thanks u guys, i'll probably shave my belly the night b4, i didnt want to mess up the marking i have and the ostomy nurse but this clear plastic thingie over it. I'll get the hand wipes too!I dont have a laptop :O( that was supposed to be my christmas gift to myself b4 i had to leave work on disability. But i'm going today to get a little game that can keep my mind occupied lol. And I'll have my sidekick which is what i usually use to check up on the site when i cant sit at my pc. So as soon as i'm able i'll update u guys. If i'm not too depressed. Do u guys know if i'll have to go thru the stages of grief/loss all over again. I've already gone thru them since i decided to go thru with the surgery, and it was hard. I dont want to have to start from scratch again.

Churchlady, is there a way i can email u my name or something? I have told others about the site and i wouldnt want them to be able to find me. Does that make sense? This is the only place where i can share my thoughts and feelings without being embarassed. I'd probably feel less comfortable if I thought someone i knew could identify me. I know that sounds petty, but I don't really get to talk to others who understand and i feel at home here.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 1/27/2008 11:07 AM (GMT -6)   

Praying:

Good luck with your surgery. Don't forget it is a process. It all doesn't happen right away but day by day.  I am sure you will improve and begin to heal physically and emotionally. You are so fortunate to have found this forum prior to surgery. Many of us groped around in the "wilderness" until we found our wonderful ostomates.

You will be in our prayers and thoughts.

Richard


Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 8 months in ICU at Westchester County M.C. (I think that's a record). Second surgery for resection due to fistulas in January 2007. Been slowly recovering since then. Possible reconnection candidate.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/27/2008 10:05 PM (GMT -6)   
praying-be sure that you snake the waterproof pad tehy put under you at the hospital! those are useful when you get home
Also, i may have already said this, or someone else may have. When I first woke up i looked down at the bag and I was like, Dear God what have I done, this thing is nasty! But once i realized i felt better, i got over it. But they will put a clear bag on you, and the stuff that comes out will probably be this nasty really stinky green stuff. But don't worry, once you start eating it won't stay like that! Nobody told me that it wasn't going to stay like that and i was so freaked out!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/27/2008 10:12 PM (GMT -6)   
Praying,
I completely understand you wanting to remain anonymous. When I'm praying for you, God knows your name, so it's okay.  :-) When it comes to the grieving process, everyone is different. I cried a lot while deciding whether or not to have surgery, but once I made up my mind to do it, I never cried again. It's been wonderful to be rid of that dreadful disease, and I just can't be sad about it. The only thing I lost was Crohn's, but what I gained was a healthy new life. You're in my thoughts and prayers for a successful surgery.
Cecilia
 
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 1/28/2008 10:44 AM (GMT -6)   
Praying - I was just thinking about you. Today is probably harder than tomorrow will be while you're making your last minute preparations and thinking about things. You're more prepared to have this surgery than most people are to have a baby after waiting 9 months! We'll be thinking about you tomorrow and praying for you.  Good luck, best wishes and good luck again! We will be anxiously awaiting your post-op posts. :)    -Laura

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 1/28/2008 1:31 PM (GMT -6)   
Praying,
Just wanted to wish you luck tomorrow, will be thinking and praying for you. I am 2 weeks out from my step 2 surgery and dealing with a new ostomy. The first day I just slept and by the 2nd day I was up walking. Ask for ice chips or sometimes they will give you these foam sticks soaked in water and it felt so good to suck on it for a little bit as I was sooo thirsty. Try to get up and walk as much as you can to avoid gas pains, (ask for help) and use the pump! Let us know how you are doing when you can, you have a lot of people on this site that will be praying for you!

Theresa
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
J-pouch surgery to be scheduled in 08


Gillcom
Regular Member


Date Joined Nov 2007
Total Posts : 272
   Posted 1/28/2008 3:46 PM (GMT -6)   
Good luck, i will be thinking about you over the next few days, keep strong.
Gillian x
Ileostomy - Feb 05, Hernia on site.
Fluoxetine - 20mg March 05 - july 06
Citalipram - 20mg July 06 - upped to 40mg now.


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/28/2008 6:43 PM (GMT -6)   
thanks u guys! i'm a little worried, was feeling a little down today when i wasnt keeping busy with buying tic tacs and stomach pillows and everything else you guys suggested. Taking the prep now (totally gross). Surgery's scheduled for 1130, gotta b there by 930. As time approaches i find myself getting sad again, knowing that my body wont be the same...Please keep me in prayer. I will be in touch as soon as possible.

Thank you all so much
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/28/2008 6:48 PM (GMT -6)   
Praying,
 
I will be thinking of you and hoping to hear from you real soon.  Keep your chin up and keep a postive attitude.  You have so much knowledge going into this surgery and a great support group right herel.   That was very nice of Ash to offer to visit you...  You'll nevery know, maybe that would be a nice way to meet.  After all, of anyone, she knows just exactly what you are going through.
 
Will someone be posting on your behalf to keep us updated?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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