new illeostomy

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myrt_01
New Member


Date Joined Apr 2005
Total Posts : 11
   Posted 6/14/2005 8:23 AM (GMT -6)   
It has been almost 6 weeks for me having an illeostomy and I have been on a low fiber- low residue diet these 6 weeks.  I was told that after six weeks I could add new foods to my diet.  I wanted to ask how others went about this.  What foods did you add first?  Did you have any problems?  Can I eat whole wheat bread now?  What about green peppers?  I am just a little nervous about it and wanted others to share their experiences about adding new foods after surgery.  thank you for your responses.

Sally Louise
New Member


Date Joined Jun 2005
Total Posts : 7
   Posted 6/19/2005 11:54 PM (GMT -6)   
I am in the same shoes you are.... I have had my illeostmy for about 4 weeks now... my doctor said I could have everything but celery and citrus things.. but I am scared to try lettuce and stuff.  The only advice I have for you is avoid spicy things!! I had pizza the other night pepperoni pizza and I felt like I was going to die.. it stung so bad!!!!

the car guy
New Member


Date Joined Feb 2007
Total Posts : 7
   Posted 8/13/2008 10:01 PM (GMT -6)   
I had one for three months then had the reconnect I was daring sometimes too and found it definatly was not worth it especially pizza I stuck to a real plain bland diet alot of soft foods too and drank alot of fluids that for me was the most important was to drink,drink,drink but life is way good now I eat almost anything so hang in their the diet will come good luck

Angela101
Regular Member


Date Joined Mar 2005
Total Posts : 79
   Posted 8/13/2008 10:35 PM (GMT -6)   

Hello!

   I have had my ileostomy for over a year now and rushed things when I first had it done. I ended up in the hospital with a blockage because I was dying for a salad.

  I think the key is moderation - but I am definitely not an expert. I would suggest introducing a one or two fruits or veggies to start but only a small serving.  See how it works - a small serving should not cause too many problems.

I am sure there are others on here who can provide more advice as well.


Dx/ed October 2003,
April 2004 - Surgery - 2ft of small bowel removed
Feb 2007 - Surgery again and a temporary ileostomy
Present - on Remicade waiting for surgery to reverse the ileostomy - Health Care System in Canada sucks - wait list is 6 12+ months.
 
 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/14/2008 12:43 AM (GMT -6)   
i agree with the pizza thing, my dumb self ate some pizza the week i came home from the hospital, it's on the low residue diet, and i thought i was gonna die from gas!
anyway, after six weeks, the best thing to do is to add a new food each day, a small amount, like try a couple pieces of an apple one day, and then some steak the next day. the major things that people have problems with are nuts and seeds. Even people with healthy colons can't digest seeds and nuts completly. so those are more likely to cause problems.
Carrots will come out the same way they went in, lol. When i first started eating salads i cut the lettuce up really small, that way it wouldn't be as likely to clog up.
Also, you may not have been told this, if you eat red things, like jello or twizzlers or red velvet cake, you are NOT bleedign to death, lol. Your output will turn red, it will look like blood. But you are ok, lol. Other colors do weird things too, you will notice that, and not worry about it after a while.

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 8/14/2008 9:36 PM (GMT -6)   
Hi!

I've had my ileostomy since July 2007 (so, a little over a year). The first few months, I really stayed away from gassy foods and I still stay away from celery, the skin on potatoes and too many mushrooms. I was never really able to digest them. Sometimes you'll see things come out very noticeable.

After the first 4-6 months, I started eating lots of almonds. Never really had problems with them. Pine nuts come out whole and so does corn. I love to eat popcorn too. I usually don't have a problem with it.

It will really just depend on your body. I think everyone has an adjustment period the first 3 to 4 months. You'll have to experiment.

The best advice I can give you is to stay away from stuff that your body did not digest well before and stay away from stuff with skins on them (i.e., potatoes, grapes, apples - just peel them).

Oh, and most importantly - try and chew your food REALLY well! : )

Good luck!

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 8/15/2008 12:22 PM (GMT -6)   
Are there some foods that you can never eat again if you have a permanent ileo?? Does it feel weird or hurt when something like a whole piece of corn passes through? How big is the actual stoma "hole"??

Also if I had surgery and only planned on having a temporary ileostomy for, say, three months would it be a better idea to just avoid these risky foods altogether until some time after the reconnect surgery?

Female, 23, Ulcerative colitis (pancolitis) diagnosed at age 15; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use. 

Current Meds:
Lexapro 10mg
Trying out Lialda, 2 pills/day

 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 8/15/2008 2:45 PM (GMT -6)   
As said in the other posts, the key things you really need to pay attention to are: moderation, chewing, and fluid intake. I find that if I want to eat, say a salad, I DO NOT eat it before my meal. I eat it with my meal and chew it really well. Same with other harder to digest foods. I just have to watch eating them on an empty stomach... tho there are some things I steer away from completely. I love hazelnuts and almonds, but I know I can only eat a couple, like 2 or 3, at a time. Skins are an issue for me as well - apples, cherries (ask flchurchlady about that!), grapes, and oranges/grapefruit too. Peel and chew well.

Yep, red velvet cake will turn the output Red, like you wouldn't believe and tho I've had my ileo for 24 years, it scares the heck outta me every time I eat it!!! I just don't pay attention til I see the output. I resorted to making a red velvet cake here at home WITHOUT the red dye in it so I could eat the whole thing w/o worrying!!!!

Everyone is a little different. Experiment in moderation. If you want to try salad, try the crunchy iceberg lettuce, maybe shredded so it doesn't require as much chewing. Shredded carrots are a smart way to go as well. Celery is really hard to digest. Too many strings.

Good luck. I'm sure others will chime in on this post as well.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 8/15/2008 5:27 PM (GMT -6)   
ediekristen, my temporary ileostomy was only to be for three months. I received it July 23, 2007 and still have it.

As for how big a stoma can open or the size of its opening just depends. I've seen mine open almost the circumferance (sp?) of a dime, but usually it remains much smaller. I guess it just depends on what is coming through. Liquids will be much smaller, solids will be larger. That's why it's so important to chew well.

nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 8/15/2008 10:09 PM (GMT -6)   
This ileostomy experience is so wierd. I see a lot of food come out just as it went into my mouth only in smaller bits and pieces. This has more than likely been happening all my life, but I couldn't see it. I didn't examine the poo. Now I have a good view of poop. As for eating different things, I agree with those who say take it easy and introduce new foods slowly. The only thing I am still scared to eat is lettuce.

bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 8/22/2008 7:46 AM (GMT -6)   
I've had my illeostomy for 11 days. I'm eating really bland. Grilled chicken, mashed potatoes, rice, things like that. I'm afraid to eat things. Hopefully my reversal will be in another 8 weeks. Can't wait. Anyway if anyone has any advice i'd appreciate it. I hate this bag!!!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/22/2008 10:26 AM (GMT -6)   
oh you can eat other stuff than that!
i ate cheese ravoli everyday for like a week when i first got home, lol.  Just don't fresh fruits or veggies for a while, but you can eat other things, like candy, or meat with marinades or somthing like that.
just start out with eating like a small amount of it.  Maybe a few bites and then if that goes well you can finish it a few hours later.  it won't take long for you to know if something is going to give you a problem!

bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 8/22/2008 5:33 PM (GMT -6)   
thank you for the advice. i want to eat pasta with sauce and regular food. i'm italian i like to eat. lol. I was put on a regular diet but low residue. i know to stay away from the fruits and veggies which sucks because i actually like them. anyway. how long ago did you have your ostomy and is it permanant? I just had it done on august 12th so i'm new to this whole thing. I've been having really bad anxiety attacks and I'm not adjusting well. i could really use all the advice that I can get. thank you and i hope to hear from you soon.

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1245
   Posted 8/23/2008 1:50 AM (GMT -6)   
As Summerstorm said, eat bland until you heal and after about 6 - 8 weeks slowly introduce new foods into your diet.

I have an ileostomy due to UC and eat anything I want (and it shows!) even the supposedly 'no no' foods, such as mushrooms, nuts, popcorn, corn, fruits, veges, etc. Just remember the ostomates creed: CHEW, CHEW, CHEW!

Good luck :)
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!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/23/2008 10:07 AM (GMT -6)   
i have had mine for over a year and it is permanent and i am very happy with it. It took a little while to get used to, and for the first few weeks not only are you adjusting to (they say that people treat this like a grieving process) a major change, your hormones are messed up from surgery, you probably aren't sleeping well, and you might still be on pain meds, all things that can really make you feel worse about things than you would on a normal day.
you might be able to eat a little bit of canned peaches or something maybe in a week or so, i don't know about that, i stayed away from the fruit all together. I ate things like cheese ravoli, ham and cheese sandwiches, milkshakes, french fries, i tried pizza two weeks after surgery, that did not go well, lol. But now i eat pizza all the time!
if the anxiety is really bad see if youcan get some meds for a short while to get you through the first few weeks, so you can get yourself back to feelign normal.

bella3250
Regular Member


Date Joined Aug 2008
Total Posts : 351
   Posted 8/24/2008 12:02 PM (GMT -6)   
Well today is Sunday and as everyone knows that means twelve course meal today so my mother in law is making manicotti and some roast beef but i opted for just the manicotti and grilled chicken with mashed potatoes. I think i should be alright. Anyone have a problem with eating pasta. I'm only 12 days with this ileostomy so i still don't know what to eat. I just don't want to get a blockage. Docs tell me eat a normal diet just low residue. Had a visiting nurse come today to change my bag and she made a face when I told her i was going to eat some pasta. I don't know. HELP!! Everyone tells me something different. Need advice.

spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 8/24/2008 2:39 PM (GMT -6)   
i had my surgery just under a month ago and my surgeon told me i can eat anything. i was worried about blockages from salad or nuts, but when i asked him he said it was very rare. i had some pizza last night with mushrooms and i did have a lot of gas build up overnight, but other than that, no problems. i've been eating salad with pretty much every meal and that helps make my output more solid although i do see pieces of lettus or tomato mixed in there. i also eat fruit, but i always avoid skins. i think that's mostly out of habit though because whenever i ate anything before i would take the skins off and now i dont really remember how to eat skins, haha. i try to eat smaller meals, but more often. and actually i've found that i get full a lot faster now.

no one is really going to be able to tell you what you can or cannot eat. it's trial and error, and so far i havent found anything that has caused any major problems.
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/24/2008 4:34 PM (GMT -6)   
you will notice that some foods will come out the same way they went in, lol. Like yesterday i accidentally ate a huge piece of onion on my burger, and it came out just like it went in, ick!
carrots and lettuce do that also.
Stringy meat, like roast beef, can cause problems at first, but not after your body has adjusted.
the pasta should be fine, it's very easy to digest.
i think it's peggy that has the water test thing, if you put something in water and it falls apart pretty easily, then it's fine

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 8/24/2008 8:14 PM (GMT -6)   

Yep, Summer, that was me!   The water test thing always worked well for me, esp. in the very beginning.  If you imagine putting Ior go ahead and do it!) the food in a glass of water and it breaks down or falls apart, it's safe! If you stick a carrot or a piece of celery in the glass, they will look the same hours later.  Those would be the foods to introduce slowly to your diet and to chew them extremely well.

Yep, the "water test" ....  when you have a question, just remember, the "water test"!!!

 


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


Roddiesgirl
Regular Member


Date Joined Oct 2008
Total Posts : 262
   Posted 10/24/2008 4:30 PM (GMT -6)   
I was just reading through some older posts and this one caught my eye so I thought I would add to it.  I had surgery Sept 23 (loop ileostomy) and have been eating just about everything I want to.  I just make sure I chew really really REALLY well and drink lots of fluids.  I have been eating spaghetti, chicken stir fry, mushrooms (some). Truly everything Iwant to.  I was on bland/low fibre for about 2 weeks and then slowly started on everything else.  Food tastes SO GOOD now and I am so excited about eating.... tongue

RITAS
Regular Member


Date Joined Feb 2006
Total Posts : 140
   Posted 10/28/2008 1:24 PM (GMT -6)   
I eat everything but again CHEW CHEW CHEW very well. I find that the nuts form my output. Of course everything in moderation and soon enough u will learn what ur body can handle and what it can't. You can eat veggies (not celery) but steam them very well to where they are very soft and almost mushy. If u don't mind the gas it's great nutrition. Good luck just take it slow and u can start a journal of what u eat and how u feel so things are not as confusing for u.
Rita
Crohn's Free Since April '06
Total colectomy/ileostomy April '06
Reversal July '06
Bowl resection/ileostomy July '07
Bowl resection/Stoma repair June '08
6ft. intestine left
Currently trying to learn about the "new me"


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 10/30/2008 5:44 PM (GMT -6)   
I think that if you have an end ileostomy like I do, you can get away with more. I don't have any limitations on diet. I can eat salads, nuts, fruits, celery, carrots...all of the evil foods without any issues. Yes, it is funny that you can identify exactly what you eat...another interesting fact that I learned along the way. Also, it's much easier to wipe when it is infront of you instead of behind you...if you know what I mean.

I did wind up with a blockage two months ago, but it resulted from scar tissue from my first surgery that had built up around my small intestine and choked it off somewhere deep in the middle of my belly under the incision (usually they occur at the stoma site where the small intestine passes through your abdominal wall and proceed backwards) and 70 to 80% of those resolve on their own. As for the size of the hole in your stoma, when I had the blockage and went to the ER, a doctor took his entire thumb and pressed it inside my stoma (to see if it was blocked at the stoma site (which it wasn't)), that was pretty interesting. 6 weeks after that surgery and now, I'm back to eating everything again and feel fine.

I think you have to be more cautious with the loop ileostomy, since everything is folded in half when it passes through the abdominal wall. I'll get to enjoy that type of ileostomy at the end of next month, and get to see what happens. I should only have that for 3 months.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily iron pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
8/05/2008 - Unexpected surgery to remove blockage caused by scar tissue
11/20/2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"

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