practical questions

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Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/19/2008 5:38 AM (GMT -7)   
hello all- so of course I'm trying to plan ahead for my surgery, & am thinking about grocery shopping. My husband can get all the stuff for him & our daughter, but what should I buy to have in the house for me post-surgery? I don't even really know what a low-residue diet is... And as far as what to bring to the hospital- I'm one of those people who likes everything "just so". But am I really going to care if don't have my own face soap & lotion? What do I REALLY need to bring? Will I be comfortable enough to read? Any other tips you can give me would be great! Thanks!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


Ash83
Regular Member


Date Joined Nov 2007
Total Posts : 128
   Posted 3/19/2008 6:20 AM (GMT -7)   
Low residue foods are basically easy to digest foods. No fiber or stringy foods. I was told to eat only white bread instead of wheat for the first 6 weeks. No veggies, fruits(although I ate skinless apples, grapes, ripe cantaloupe and watermelon while still in the hospital), seeds, nuts, or really fibrous foods. Some people eat these things earlier than the specified time, but it's probably best to steer clear until you feel comfortable introducing them back in. The 3 major foods that most surgeons recommend avoiding or only eating small amounts of(and chewing REALLY well) are popcorn, nuts, and corn.

After coming home I ate a lot of carbs like toast, bagels, PB&J, cereal, grilled cheese, pretzels, graham crackers, and things along those lines.


This from an older post that I wrote out and hopefully it'll help give you an idea of what to pack and expect during your stay.



1. Bring comfy clothes. Sweats, loose fitting shirts, socks, flip flops/slippers/clogs to wear on your feet.

2. Bring anti-bacterial lotion/soap. I used the kind from Bath & Body Works. Purell works great too. This way, you don't have to get up and walk to the sink everytime you need or want to wash your hands. Especially with changing a bag, you want to keep your hands clean as much as possible.

3. Bring your own pillow, throw blanket, or any comfort of home to help get you through your recovery. Those white sheets, white blankets, and white pillows can get pretty depressing and "cold" after awhile.

4. Have people there with you as much as possible. My fiance, family, and a bunch of close friends came to see me a lot. Between my fiance and my family, I was never alone. Not even through the night. They alternated staying every other night so I would never have to be alone. That by far was the biggest comfort for me. I couldn't have done it without them.

5. Bring your own toothbrush, lotions, deodorent, etc. It'll make you feel at ease being able to use your own stuff. Some people may prefer to not bring their own belongings though. Personal preference I guess.

6. Bring a little notepad and pen. I was in the hospital for a month, and 2 of those weeks were spent with a gigantic NG tube in my nose. It was far too painful and uncomfortable to speak, so this came in handy. I could still communicate without exhausting myself.

7. Don't get lax with your pain meds. Try to stay ontop of getting them at the right times. Otherwise, pain management is a butt to get ontop of. It's like constantly playing catch up. Enjoy the meds, sleep and rest when you need to, and let your body do its thing.

8. Sit up and walk/move around as much as possible. The longer you're stuck in bed, the more aches and pains you'll get. Aside from the incision pain, the sore and achey muscles were horrendous. It had me in tears many times. If you can get someone to rub lotion on your arms and legs that helps too. I even had an amazing nurse who would come in and rub my back with lotion for me. What a Godsend she was.

9. Ask questions. Don't let the medical terminology intimdate you. If you're not sure of something or feel uneasy, ask questions and let them know your concerns. You have to be your best advocate.

10. Speak up. If your nurse isn't giving you the treatment you deserve, ask to speak to the nurse manager. If the cleaning people haven't come to clean your bathroom, tell someone. This happened to me, they would skip my room and never clean the bathroom. I was rarely in it, but still, those places collect tons of germs. By the end of it, we had both nurse managers come and apologize, my room was cleaned twice a day, and the nurse managers brought everyone coffee and breakfast to apologize.

11. Try not to worry about any day other than the one you're in. You'll get overwhelmed VERY easily if you start worrying about what things will be like 10 days from now.

12. Bring an iPod, crossword puzzles, or magazines. I was never up to any of these, but my surgery wasn't planned, and I was very sick. You might feel up to doing one of these to keep your mind occupied. Time in the hospital tends to creep by...very slowly.

13. Prepare yourself to be in the hospital longer than what your doctor has said. If he said 1 week, prepare yourself for 2 weeks. This way, if you have to stay longer it won't be as disappointing. And if you leave earlier, you'll be excited and looking forward to it.

14. Don't set yourself on a schedule. There are lots of mini setbacks that can prolong your stay. By staying ontop of your mindset, you'll avoid potential upsets and depression.

15. Ask to see a stoma nurse. They're wonderful people. They will help you out and give you as much help as you need. Also, find out if your insurance covers home health nurses to come help you once you've returned home. My home health nurse was incredible. She helped me learn so much and she really set me up for gaining my independence.


And last but not least, know that any disappointing or negative feelings towards this surgery, ostomy, or recovery is 100% normal. It's a major life change. But for most of us, it's a change for the better. You'll adapt and you'll learn things as time goes on. It's trial and error, as with many other things in life. Once you're home and have more questions, ask away. The people on this forum have been a great source of knowledge, support, and reinforcement.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/19/2008 6:56 AM (GMT -7)   
yeah, ash may have posted that previous post for me, that was a great help. everything she said is what i would have said. good luck!
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?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 3/19/2008 7:32 AM (GMT -7)   
Ash pretty much covered it. Just wanted to say good luck w/ your surgery.
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/19/2008 1:14 PM (GMT -7)   
gosh, THANK YOU for the informative replies! It seems like so much..... sad   I hope to only be in the hospital for only 1 week, but I know enought to expect it may be longer. I don't think I could handle a month! Did any of you avoid dairy after your surgery? I was thinking mac & cheese, yogurts, oatmeal made with milk, etc. might be good foods also. And- what about candy??? I am a chocolate junkie, all of it- bars, ice cream, you name it! Ice cream kills my UC, so I'm hoping I can settle down with a big bowl soon...


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 

Post Edited (Eva Lou) : 3/19/2008 2:29:16 PM (GMT-6)


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 3/19/2008 2:20 PM (GMT -7)   
I would make sure to have convenience food on hand. I lived off of cereal for awhile b/c I did not have energy to cook anything. Also, I'm not suggesting doing this but I ate whatever I wanted even candy (it is very convenient!). Good luck. :)

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/19/2008 2:21 PM (GMT -7)   
you know, it's funny- I have already met with my surgeon (had surgery originally scheduled for November of last year), & at that time, he told me I could eat anything- just not a 5lb. salad! He said that the stoma is only so big, eating a huge meal packed with roughage would not be a good idea. I have to meet with him again in a couple weeks, & I plan to ask again about the dietary issues & some other things that have crept up. I'm glad to hear that dairy is alright- I do love my dairy! What kind of cereals would you eat? So many of them are super crunchy/grainy, etc. I love Frosted Mini-Wheats- think those are too fibery? Ash, it sounds like you had a terrible surgery experience- I'm sorry! But glad you seem to have come thru it alright. I'm hoping that by going into surgery fairly healthy & steroid-free, I'll be in the best shape to heal quickly. I hope!

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


RITAS
Regular Member


Date Joined Feb 2006
Total Posts : 140
   Posted 3/19/2008 4:29 PM (GMT -7)   
Eva- sounds like ur pretty healthy otherwise. You should have a pretty good recovery. You got really go advise on here. Take it all!!! Believe me...I spend a month in the hospital and it' wasn't fun. Everyday I would think of something I needed and my husband would run home and get them for me. When I finally left. I left with 2 big suitcases....hahahaha. Ash covered it all but I will tell u for me it was easier buying things that I was going to get rid of after the hospital only because I freak out about germs. Like, my toothbrush, slippers, throw, pillow, robe...I just went to TJMax or anywhere that's cheap and buy things that u can throw away when ur done with the hospital. I also didn't want constant reminders so that's what I did. Oh and the sanitizer is going to be ur best friend!!!!!! I went through those like nothing. My husband cleaned every part of the hospital room that he thought i would touch with sanitizer. It just made me feel more comfortable. You can also buy the body splashes from Bath and Body works because you know you won't be showering everyday. so u feel refreshed. And when u want to wash ur hair, they have these caps that u ask for and they have shampoo and conditioner in them. They would warm them for u put it on ur head massage ur hair and when u take it off ur hair is wet and clean...just comb it!!! It's so cool....all while ur in bed but like ash said try to get up and walk around as much as possible. It's hard but force urself and keep positive thoughts, that's what'll get u through. If u need us we're here. Good luck with the surgery...when u having it done??
Rita
Crohn's Free Since April '06
Total colectomy/ileostomy April '06
Reversal July '06
Bowl resection/ileostomy July '07
Currently trying to learn about the "new me"


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/19/2008 4:50 PM (GMT -7)   

RITAS -

Are you kidding?  Shower caps with soap and all?  What a great idea!!!  Can you tell it has been a while since I had surgery?! 

 

Eva Lou --

I think the others have covered everything you might need.  Now take a deep breath and remember how much better you will feel when it is all over and you are healed.  You will be so much more healthy and happy.  Good luck to you and come back and fill us in soon.

Hugs,

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3437
   Posted 3/19/2008 6:17 PM (GMT -7)   
my surgery isn't 'til May 7th! It seems like a week away though... I wouls never think to bring my own sanitizer- what a great idea! And so are the body splashes. What about the cereal though- what kind? I love cereal, so eating it often is no problem for me. I feel like there aer so many things to get "in order" before I go, but really, there isn't much.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/19/2008 6:54 PM (GMT -7)   
i took hand wipes instead, antibacterial ones, and alchol ones, you would be suprised how nasty hing like the remote, phone and bed rails are in hospitals, also, if anything on your hands lives through an alchol wipe, then i think it deserves to be there, lol. hte thing i liked better about that than the hand sanitzer, is that wipes actually take the germs or whatever OFF your hands, i mean the sanitzer kills them just the same though. It's just something i like better.
Also, this may sound stupid, but you might want to take a little makeup or lipstick, especially something like chapstick, cause it's very dryin there.
I dont know if this was said or not, but i took some night gowns, ones that were pretty long, and i bought size 2 or 3x, which was really big on me, i wear a medium, lol. But that way they stayed off my skin. when i got home i ate cheese ravoli after the first week, that is just what i wanted. Avoid things that may cause gas, like pizza, or lots of soda, for hte first little while. be sure you drink lots and lots, i really liked to drink juice, mainly because ifyou are tapering off steroids or taking certain meds, they can leave a nasty taste in your mouth and the juice helps take the taste out. I also ate a alot of crackers. Basically eat whatever you think you feel like, except things like barbecue, roast beef, fruits, peachs that are canned would be fine. Stay away from veggies at first. it will kind of be common sense once you are doing it. to me, when the dr told me at the hosptial i was soo confused, but then once i got home, i started thinkign and i realized what things were "safe" it's pretty important to stay away from those things, at least for the first few weeks. And for goodness sakes, please please drink lots and lots, i didn't and had to go for fluids! ick not fun, lol.
i am sure you will do fine though!
good luck

Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 3/19/2008 7:03 PM (GMT -7)   
Ash's list covered me pretty well for both my stays. I would also recommend convenience/snack food for late night stomach growls that can't be squelched by what the nurses can bring you. I personally preferred cheez-its and some choc. chip cookies. I also had some milk tucked away in the recovery hall stores to help fill my stomach at night. Although I've found I can't drink more than half a pint of it before I feel nauseous. I hope that goes away soon b/c I love my milk! I can't think of anything else just now, its a little too fresh in my head so it all seems second nature. Good luck!
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (10mg taper)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/20/2008 8:05 PM (GMT -7)   
Carlow, i can't remember when you had your surgery but after a few months i was able to drink milk with no problems, and alot of nights i drink two glasses. Trainer Bob on Biggest loser said that two glasses of milk eveyrday would help you lose weight!

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 3/21/2008 12:14 PM (GMT -7)   
Another thing that helped me was extra pillows. I am not a back sleeper so I used pillows so I could manages different positions. Also, be sure your family and friends are aware of your wishes--do you want/like visitors? If not, let them know. You need to be comfortable--don't worry about them!

StomaGrrrl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 3/22/2008 10:30 PM (GMT -7)   
Eva,

with cereal your stoma nurse will tell you that rice crispies and other white rice or white flour based cereals are best. grape nuts are not a good idea and you may be courting discomfort with frosted flakes in the first few weeks.

you will also be advised to avoid uncooked fruit and veggies. it's something you will inevitably test out on your own - always do it in the smallest possible manner. After my ileostomy I came home and ate 1/2 a banana. 6 hours later I couldn't breathe because of the blockage. It took another three hours to resolve.

right now you're probably spinning your wheels to cover all of your bases, but the major things have been mentioned - make yourself comfortable. always have someone there (to advocate for you and to keep you company), allow yourself the time to heal and expect the unexpected - or at the very least, anticipate a longer hospital stay and possible complications. all those things the docs say when you're signing the consent (possible complications) are real and very possible. Remind yourself to be flexible and to believe in your ability to heal. It will get you through just about anything.

Best wishes
diagnosed Endometriosis 2001
first surgery 2003 - lesions found in rectum
7 major procedures in 2007 including 10-hour endometriosis dissection, ileostomy, RV fistula closure, ilestomy takedown, colostomy
No longer taking testosterone, codeine, vicodin, xanax, or receiving acupuncture 2-3 times a week
Loving life and re-entering "the world"
still taking the occasional valium :)
Back at work and enjoying "perspective" on life...


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/23/2008 8:16 PM (GMT -7)   
i have to second the frosted flakes thing, lol. I tried to eat some of those not long after my surgeyr and i had horrible gas! but i am fine with those now.
Something you need to do is snake those pads they will put under you on your bed!
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