for those of u w/ostomies and med free

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praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/10/2008 9:08 PM (GMT -6)   
Hi u guys, just a quick question, those of u with ostomies (especialy ileostomies) and that say u are med free ( I read that a lot in ur signatures). Did u guys have 2 severely restrict ur diet? Like do u have to do all that no gluten,bread,or pasta stuff?

What about those of u with reversals? Are u still med free? Are your diets significantly different? Just tryn 2 see what I have 2 look forward 2
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?!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/10/2008 9:17 PM (GMT -6)   
That's a good question. I'm very blessed that I can eat anything and everything without any problems whatsoever. The only food I choose to avoid is popcorn, and that's only because I think it's rough on the digestive system. I eat caramel or butter rice cakes instead, because they taste like popcorn without all of the little sharp edges. :-)


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


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/10/2008 9:32 PM (GMT -6)   
Ash,
I'm so glad! tongue


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/10/2008 10:07 PM (GMT -6)   
i am off my UC meds, but I do take gas-x sometimes, and i have taken two immodiums, after i got some bad food one night, ick!
But i don't really watch my diet, i don't eat nuts or seeds, but i didnt' really eat them before hand. I don't eat popcorn either, but i don't want to. I eat fruits and veggies, ate two bananas today, and some bread. the first week i was home i ate almost nothing but cheese ravoli, lol. So no, i am not on any special diet

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/10/2008 10:21 PM (GMT -6)   
Ash,
 
Here's what you can do ... grab your fiance and a bag of buttered rice cakes and go out on a date to the movies!!!! yeah

Dancerpeg
Regular Member


Date Joined Dec 2007
Total Posts : 43
   Posted 1/10/2008 11:01 PM (GMT -6)   
Praying4healing,
Well I'm back to answer your question from my husband point of view. He's had his ileostomy since 94' he ate anything he wanted even popcorn not alot. But when you talk about getting off med's he was off his med for the next couple of years but then had a flare up in 01' had to have a reconstruction and lost more small bowel and then another couple of years went by and now we are sitting here with the problems with another flare up. Life is great when there is no sign of the disease. He will be going into the hospital next week to get the TPN line because he is just losing weight and another CT scan tomorrow. Well good luck with your surgery.
Dancerpeg

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 1/10/2008 11:23 PM (GMT -6)   
I have an ileo and am med free :) Plus I eat anything I want (and it shows!), even supposed no no foods, such as popcorn, corn, mushrooms, skins, nuts, etc No more pain, no more meds, no more running to the loo and hoping I make it on time, no more restrictive diets - life is great!
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


KATKNIGHT
New Member


Date Joined Dec 2007
Total Posts : 1
   Posted 1/11/2008 6:58 AM (GMT -6)   
Hi there, It is 4 months since my reversal and I am still recording how I am reacting to certain foods. Fruit is a big problem, Mince pies and xmas pud were big trouble. Fish and prawns are ok. I feel more in control now, but if I have an event to attend, I abstain from food before. I use Imodium very rarely but initially it gave me the confidence to leave the house. Good Luck! Katknight. 

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 1/11/2008 8:00 AM (GMT -6)   
I have a jpouch, am med free, and eat whatever I want including lots of fresh fruits and vegetables, popcorn, and other potentially troublesome foods.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


OhSal
New Member


Date Joined Nov 2007
Total Posts : 6
   Posted 1/11/2008 8:17 AM (GMT -6)   

ASH and all you popcorn lovers who are afraid to eat it!

Go to your local grocery market and look in the chips section for Conn's Carmel Puff Corn! You'll think you're eating Fiddle Faddle without the nuts,..... no kidding! Since I found it I'm never without........... :-)

 


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 1/11/2008 4:02 PM (GMT 0)   
Been med free for a while now. Basically eat whatever i want. I don't seem to gain any weight, but thats nothing crazy since i never seemed to gain weight even before i was sick. And i do mean i eat anything. Yesterday i had eggs, toast, pizza, almost a pound of M&M's. chicken and rice, ice cream and about a box of some sort of crackers that have cheese inbetween them. My stoma works the same all day long. I hope it'll give me some pounds, but most likely not. I think the only thing i eat that slows my stoma down would be bananas. I haven't had any sort of blockage with anything i've eaten.

Rice cakes?
 
Crohn's for what seems like forever
Bagged in August 2006
@ssless as of 11/2007
 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/11/2008 10:23 AM (GMT -6)   
O my goodness! U guys are making me think of calling my doc like "give me my surgery date now!!!!" (still feel a little weird about that) to be out of this pain AND b able to eat what I want seems unreal.
Dancerpeg, I hate flares, I don't even know if I'm actually having one b/c most of my issues and pain are coming from fistulas. Ur husband is n my prayers.
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?!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/11/2008 9:27 PM (GMT -6)   
Have any of you ever tried Pirate's Booty? It's a puffed rice and corn snack that comes in white cheddar and is delicious!! I found it in the health food section of the grocery store. It's another good alternative to popcorn for those of us who don't have booty's! tongue

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 1/11/2008 11:24 PM (GMT -6)   
Slice, i am SOOO hating you right now! LOL! i haven't figured out why mushrooms are on the no-no list.
KatKnight-being hungry will actually give you more gas, so you may want to eat a small something before you go out. Also, for me, if I don't eat anything solid, and just have water or whatever my output is more frequent.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/12/2008 11:58 AM (GMT -6)   
Ha ha ha ha!!!!@booty for those of us with no booty's!!!! Hillarious!
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?!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/12/2008 6:59 PM (GMT -6)   
I'm glad I could make you smile! tongue

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/14/2008 10:17 PM (GMT -6)   
i have been eating them. Not alot of them, cause i really haven't had anything with mushrooms in it, but i have eaten them a few times.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/15/2008 3:24 PM (GMT -6)   
Lol@ u guys and ur popcorn, too bad I never really cared for it. U all make it sound so exciting!!

Ok another quick question. Its about frequency. If u guys were ne thing like me ( going several times a day). Does this change with the bag? Like will I be changing the bag as often as I go to the br now? If not, how does that work? Isn't the food still going to the same place and just coming out differently? If its still going thru my small intestine I don't see how I could go any less often.
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?!


blue85
Regular Member


Date Joined Mar 2005
Total Posts : 62
   Posted 1/15/2008 3:51 PM (GMT -6)   
I pretty much eat anything I want with no trouble.  The only thing I don't eat is popcorn but thats just because I think it would be to rough..
And as far as med's well as you can see I'm basically down to nothing compared to what I use to take.
 
Now regarding frequency; before the ileostomy I was going anywhere from 10 - 30 times a day.  Now when I go to the restroom to "pee"  I just empty my bag then.  It takes just a few minutes longer depending on the consistency of the output.  So I guess in a 24 hour period I will empty any where from three times to seven.  Alot depends also on what I eat, if I eat alot then I am emptying more frequently.
 
Hope that answers some of your questions.
 
Blue85
Dx: with Crohns in 10-2003 then changed to Ulcerative Colitis 1-2007
 
Proctocolectomy with Ileostomy June 19th 2007 - Doing great.
Prednisone 60 mg (currently tapering by 10 a week until zero), 6MP 125 mg po qd, Pentasa 500 mg 3 po tid, Calcium 400 mg with D tid, Iron po tid, Vit C po tid, Tylenol #3 prn, Multivitamin, Remicade - Quit working, Asacol, Colozal, Abatacept Study
 
 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/15/2008 4:53 PM (GMT -6)   
That does somewhat help me. B/c I go maybe btwn 7-10 times. So I'm hoping with my ileostomy I wont have to empty that often. Is it tru that the more u go the more bags u use?
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?!

Post Edited (praying4healing) : 1/15/2008 4:05:25 PM (GMT-7)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/15/2008 5:30 PM (GMT -6)   

Going 7-10/day now translates to pain for you, right?  Well, with the ileo, you just don't feel it... it just happens.  NO pain!!   Again, your output will be watery at first and will thicken in time.  A lot of times food determines the consistency once your intestines "settle into their new life"!

I wear the same bag from one change to the next which is about 6-8 days.  You don't have to change it unless you want to.  I do, however, rinse mine out in the mornings with some cool water to clean it up for the day.  Personal preference for me.  Others don't.  And you don't have to cuz it will get dirty again before you count to 1!!! 

Some folks change their bag to a larger one for the nighttime hours, and to a smaller one during the day.  Again, personal preference.  I use a larger one all the time and just fold it up inside my panties - no one knows.  If I need the extra space, then it is there.  If I don't, then no worries.

 


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


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/15/2008 10:35 PM (GMT -6)   
i usually empty mine 7-10 times a day, BUT i empty mine alot more than i need to i think. i just empty it usually when i pee. But it only takes about five minutes, if that, to get in and out with doing that. At first it will take you longer, and at first you will have to empty alot more, but that won't last for long.

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/16/2008 9:59 AM (GMT -6)   
Thanx u guys. So at first I should expect liquidy output? Is this bc I'll b on a liquid diet?
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?!

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