Anything I should know for ileostomy surgery day?

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supernova
Regular Member


Date Joined Jul 2006
Total Posts : 69
   Posted 2/22/2011 10:13 AM (GMT -6)   
Thanks everyone for the posts on my surgery date topic (March 1st)! They were very helpful and insightful! Okay, so I was wondering what I need to know about the surgery day. Is there anything that you wish you would have known ahead of time? What sort of things would be good to have with me during my hospital stay? Also, with the first few weeks being home; anything that you can tell me to help me to be better prepared? Any tips are welcome! I am trying to get prepared for next Tuesday.. that's me, the organizer! hehe! I am bringing fragrance diffusers (hate the smell of hospitals), books, word searches, lotion (making my hubby rub my feet:), music, and clothes. I don't know, maybe I will be in too much pain or drugged up to want to read a book, thought I'd bring it in case. Thanks a bunch! :-)
29 year old female
Ulcerative colitis- 13 years
Current meds- sulfasalzine
Meds tried- suppositories, enemas, asacol, prednisone, lialda, immuran, sulfa, remicade
End ileostomy surgery- March 1st

Post Edited (supernova) : 2/22/2011 8:16:58 AM (GMT-7)


Christine1946
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Date Joined Aug 2008
Total Posts : 5968
   Posted 2/22/2011 10:52 AM (GMT -6)   
     Wow, you really are organized tongue !  I brought some reading material to the hospital but didn't read much the first few days.  I had really nice roommates (ever so grateful for that) and we chatted quite a bit.  I had a tv too.  I was in Pennsylvania Hospital in Philly and they supplied ear phones for the tv so not to disturb your roommate.  I thought that was neat.
     I asked my surgeon what to bring and he said..."your toothbrush"...lol.  They actually supplied those too!  I had so many tubes attached to me after surgery, all I wore was a hospital gown...not even undies!!!  My hubby brought up my robe because they have you up and walking the day after surgery.
     To be honest, I don't remember much about the day of the surgery OR the day after.  I know I wasn't in much pain.
     Where is your surgery being performed?  I keep you in my prayers!!

supernova
Regular Member


Date Joined Jul 2006
Total Posts : 69
   Posted 2/22/2011 12:23 PM (GMT -6)   
Christine- My surgery is being done by Dr. Page at the methodist hospital in Des Moines, IA. I kinda figured I wouldn't need reading material the day of the surgery :) But I was told that I would be there at least five days. Since I have been hospitalized a couple of other times, I know that hospitals can be very boring! I like watching tv, but not all day.. hehe. The last time I was hospitalized for my UC I watched the food channel a lot, dreaming of all that yummy food that I couldn't eat (hadn't eaten in ten days). During my hospital stay I asked for a shaver to shave my legs.. they didn't have one! I couldn't believe it! A lot of hairy ladies in that hospital, hehe. I just can't stand to be bored and I really hate wearing the hospital gowns. Good idea with the robe, I didn't even think about that! Don't want to be showing my rear off to everyone in the hall! :)
29 year old female
Ulcerative colitis- 13 years
Current meds- sulfasalzine
Meds tried- suppositories, enemas, asacol, prednisone, lialda, immuran, sulfa, remicade
End ileostomy surgery- March 1st

Collicat
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Date Joined May 2009
Total Posts : 827
   Posted 2/22/2011 1:42 PM (GMT -6)   
The best $16 we have ever spent was on a fan that we brought to the hospital. They are usually very warm and just to move the air made all the difference in the world. Dillon was allergic to demerol so a back scratcher also came in very handy. This allergy is very common so it might be something to think about. I think you will find that reading actually takes a lot of concentration and you will probably not be up to it for a while. Robe and slippers are great....to be in your own clothes really is a lift.
Mom to Dillon (age 19) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 2/22/2011 1:56 PM (GMT -6)   
You won't do much the day of surgery, but I felt like doing some things the four days after (I was in for 5 days too). I brought my Ipod, laptop (the hospital had wireless), a book, and my journal (which I wish now I had wrote in more... I did a few entries but not enough). Slip on shoes or slippers are nice too. I hate walking around hospital floors in my socks:( I did bring some toiletry items too since I was never very happy with the ones the hospital provided during my UC stays. Oh yes... earplugs. They come in handy.

You will be sleepy though too. I can remember trying to email my friends and falling asleep typing mid-sentence. I would also fall asleep when my husband tried to read emails to me. It was pretty funny. I also had friends wanting to visit, but after a while I would have to say no because I was just too tired and talking would even exhaust me.

Good luck with your surgery. You will find that you learn a lot about yourself through this process and you will discover strengths you didn't realize you had. The whole thing has been a very profound experience for me. I just smile everyday knowing I made the right decision and feel so good. You will too!
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Disneynut66
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Date Joined Apr 2009
Total Posts : 587
   Posted 2/22/2011 3:09 PM (GMT -6)   
Robe, toiletries and maybe a pillow. Scrap Girl told me to bring one and I did, but when my husband left to go back with my daughter (my parents stayed with me) to Indy, he took it with him. The pillows were so uncomfortable. I loved having my ITouch with me. I was able to email, listen to music and even watch movies on Netflix.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 2/22/2011 3:18 PM (GMT -6)   
The best thing I liked that I took to the hospital was my ipod with some stories recorded on it.

I could shut my eyes lie there quietly and be entertained! Didn't even have to use my eyes (which were blurry anyway)

Did have slippers to walk around AS SOON AS ABLE.

Hope everything goes well. There is a recovery and learning period but time helps heal.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 2/22/2011 3:31 PM (GMT -6)   
Hubby was in the hospital for 7 days and we stayed at the hotel attached to the hospital for another 4 days since we were a good 3 hr drive from home.

Funny about the backscratcher....I ran out to a Dollar Tree to get him one and it was the best $1 I ever spent!

I also brought pillows from home and 2 smaller ones that were a big help helping him get in the right position in the car when I was driving him home. Even a short drive could be a bit uncomfortable and pillows can help.

Hospitals usually have the fleecy slippers with the treading on the bottom and I would be careful with personal slippers when walking.

A robe as suggested for a woman,,,,,definitely. Hubby wore the hospital gown and they put a 2nd one on the normal way when he walked so he would not have to worry about his backside being exposed.

He didn't have the desire to do much reading but I brought stuff if he wanted to.

I brought my cell phone and his cell phone. Put a label on it with his name and room # if it gets misplaced...this way when I wasn't there in the room if he needed to speak with me he could call me. Remember a phone charger.

I kept a journal from the moment he left me and was brought into surgery and kept detailed notes all during his stay and afterwards. Not sure how good your hubby would be at that but after he got home and read my notes there was a lot of stuff and info in there he didn't realize or forgot about.

I brought a laptop and it was so much easier to send out e-mail updates to family and friends instead of trying to speak with people on the phone. Plus as people e-mailed back I could read them to hubby. I only called my sister and 2 close girlfriends for a little moral support when I needed it but was happy not to have to speak to too many people. I also e-mailed myself the e-mails and printed them off after we were home and made that part of a booklet I made for him.
We were there at Christmas time - I brought a digital camera - wasn't sure if I would use it...I did....quite a bit.

If you have a room with only one bed in it and if you have cards or anything you might want to tape to the door of the bathroom in your room bring scotch tape. Hubby got some cards and since it was Christmas I had things to decorate the door with to make it festive.

The day before discharge it was amazing the amount of stuff I had in his room. That night before I took as much stuff as I could back to the room so when he was discharged I didn't have a ton of stuff to carry when he was wheeled out of there.

Have some extra address labels or plain labels you can write your name and room # on if there are any items you wish to personalize if it somehow gets separated from you.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

Christine1946
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Date Joined Aug 2008
Total Posts : 5968
   Posted 2/22/2011 6:18 PM (GMT -6)   
     Holy cow you people are organized shocked !  I wouldn't know how to use an Ipod if my life depended on it.  We don't have a lap top computer.  My daughter posted in the UC forum under my name because I was in the hospital 11 days and didn't want anyone to think I croaked.
     They gave me two hospital gowns too when I went for my walks...one open in the front and the other in the back but I felt like a contortionist because of the IV's, JP tube and other paraphenalia kept getting in the way.
     Collicat...I am allergic to Demerol too.  How I first found out....during my very first colonoscopy while hospitalized back in 1998, they gave me Demerol and my blood pressure shot up to 220/110.  I never saw doctors scramble around so fast in my life.  I thought my head was going to blow off it hurt so bad.  They gave me something in an IV and stuck me out in the hall way.  Six hours later they returned me to my room.  That was in one of the local hospitals here in south Jersey.  Another reason I chose to go to Philly.

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 2/22/2011 6:47 PM (GMT -6)   
Collicat, I don't know where you found a warm hospital! I've always spent my time FREEZING in the hospital, since they have to keep it that way so diseases won't spread.

I'd second what everyone else said to bring, but be careful about expensive things. My laptop got stolen last time I was in the hospital, from my bedside, while I was sleeping. I'm pretty sure it was someone who worked there overnight. Great.

Two things I couldn't live without are chapstick and my phone. A book is good too.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/22/2011 9:52 PM (GMT -6)   
things to take- GAS-X, chapstick, lotion, very loose clothing (i bought like 1x, i wore a medium) that you don't care about getting ruined.

Things to know-If you don't shave your girlie area anyway, shave it before you go, they will want to shave it with a dry razor, they came at me with one of those cheap disposable ones and no shaving cream, that would have been awful if they had had to do that, razor burn ontop of surgery pain, not fun, lol
When you first wake up, you will have on a clear bag, and your original output will probably be this bright green stuff that is the most awful disgusting smell you have ever smelled. Don't freak it wont stay that way! Noone told me that and i was like OMG what the heck this is awful! But once you eat some real food it will change. Oh and if you eat red jello, you might think you are bleeding to death, but you aren't just the coloring.

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 269
   Posted 2/22/2011 10:38 PM (GMT -6)   
I agree with everything everyone said. The items I personally couldn't live without were chapstick, lotion, and cell phone. Instead of wearing another gown like other people have said, I was allowed to wear sweatpants that I brought after the catheter came out. It was such a relief to finally wear pants! I would definitely bring a pair in case they allow you to as well! Good luck! You'll do great! :)

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 2/22/2011 11:08 PM (GMT -6)   
Yes to the chapstick.

We use the Blistex ointment that comes in a small tube and that was a lifesaver from him getting dry cracked lips. (I use it on my lips every morning when I apply my face moistureizer and also at night before going to bed. Hubby uses it daily as well.)

I never left the laptop in the room I took it to and from the hospital each day and if I left the room during the day I put it in his personal closet.

Loose fitting sweatpants/loungepants I brought also but he didn't really use them until time for discharge.

Great hint....shave yourself so you can do it right and have the least amount of irritation. Dry shaving is not a favorite thing for sure.

Yes...the hospital was very cool to the point I was always cold so I made sure I dressed in layers. Make hubby is aware so that if he wants to have a light jacket or wear long sleeves. Sitting for hours in the hospital you get cold when the a/c is cool.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

supernova
Regular Member


Date Joined Jul 2006
Total Posts : 69
   Posted 2/22/2011 11:42 PM (GMT -6)   
Thanks everyone! I think I will be as prepared as I ever could be! Figured since I can't totally prepare myself mentally, I can a least have the necessaties to make my stay a little more like home. Thanks again! :)
29 year old female
Ulcerative colitis- 13 years
Current meds- sulfasalzine
Meds tried- suppositories, enemas, asacol, prednisone, lialda, immuran, sulfa, remicade
End ileostomy surgery- March 1st
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