Share Facebook
Crohn's Disease Forum » Surgery » Stoma Subforum » Ileostomy and food


12-26-2012, 03:16 PM   #1
gracifer
Senior Member
 
Join Date: Feb 2011
Location: London, United Kingdom
Ileostomy and food

I came home from hospital after having a bowel resection and temp stomy. I had a blockage/obstruction in the first few days afterwards and spent a week none stop vomiting - which was horrendous.
However, I am, and always will be a foodie, so I am really really struggling this xmas, and with the stomy - I hate it. They told me that I might need an stomy depending on the mess I am inside. Anyway, I was just wondering what the best things are to eat? I really miss salad, and have been told things like lettuce can cause blockages. I was also wondering if hummus is ok? Frosties? Chocolate? Olives? Pizza? Chips? I ate a few things like well cooked onions in hospital and that was ok. It's just a mine field and I'm finding it really hard.
My output is like a 'porridge consistancy' like they told me it should be. I know it sounds stupid but I just want to eat fairly 'normally' and if I had thought through this operation carefully I would have had it nowhere near Christmas.

What do you guys normally eat?
12-26-2012, 04:45 PM   #2
GrantC
 
Join Date: Sep 2012
Location: London, United Kingdom
Hi Gracifer. Good to hear from you. I was told things like mushrooms, water chestnuts and leafy veg like lettuce and cabbage are not great. Have eaten all if those and have been fine. Secret is to chew your food (first but if advice given) and make sure it is well cooked and softned. I think you will find most on here eat and drink almost everything. Moderation is a good word and something which are generally not great for us when 'normal' are not good for us now with an abbreviated digestive system.

I am also a foodie. I have and will eat almost anything. Only thing I stay away from are nuts as they don't digest to well and come out quite intact.
Gassy drink tends to cause gas (logic prevails) and booze a but if unsettling for me a but runnier than normal. If you expects this it is not so hard to put up with.

I did and am finding I can eat much better now than what I did before.
I hope all goes well and keep us updated.
__________________
Diagnosed in May 2012- symptons since 2004 (IBS anyone?)

Ileostomy and Right Hemi in October 2012 due to large stricture in Caecum and over dilation of small intestine at IC valve.

No Crohns meds yet, but on Loperamide and Omeprazole for consitency and acid.
12-26-2012, 04:49 PM   #3
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
Hello Gracifer! First, did you have a temp ileostomy or a temp colostomy? In other words did they bring your small bowel out to the surface, or your large bowel?

Avoid hard to digest foods at least temporarily, perhaps a low residue diet to start out with. For instance, salads, nuts, popcorn, mushrooms, corn/ Avoid them for a bit.

But really everyone is different, and we have to try it to see what works!

Honey, I hope you start feeling better soon!
__________________
Misty
DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
12-26-2012, 05:00 PM   #4
Misty-Eyed
Forum Monitor
 
Misty-Eyed's Avatar
 
Join Date: Feb 2010
Location: United Kingdom

My Support Groups:
Actually now I eat everything. But at the beginning I was very careful about what I ate. Try small items of what you want to eat and chew them well. I had problems with corn about a month after my op but not had a problem since. I do have some stomach pains when eating smoked salmon so I just don't eat too much of it.

Otherwise, I eat like a pig!!!
__________________
Michelle

'You can't change the past but you can ruin the present by worrying about the future.'

Diagnosed with Crohn's colitis aged 9, 1992.

Panproctocolectomy and terminal end ileostomy October 2011.
12-26-2012, 05:30 PM   #5
Hobbes650
Forum Monitor
 
Hobbes650's Avatar
 
Join Date: Jun 2012
Location: Burlingame, California
Hi gracifer, Softer food is best but you should soon be eating a normal diet. I'd still go easy on ruffage and high fiber foods. Temporary ostomies may be a little more fussy than permanent ones, and they are certainly a bit more demanding to take care of. I've had both, and my permanent one has been no problem. In the beginning though, your obstrution was probably due to your gut just not being ready to eat yet. I remember once that happned to me, and it cleared up on its own after a day with and IV. Staying hydrated will help things flow better. Porridge consistancey is fine, some call it oatmeal. And the output will change in firmness depending on what you eat so don't worry about that part. I can eat anything I want now, but I don't eat too much of raw vegetables, popcorn, or nuts since too many may block up the pipes. Mushrooms are another one.

Everybody is unique in terms of when their eating gets back to normal so don't worry. I'm suprised someone told you about lettuce, but when you're feeling better you can try a little and see how it goes. That's a good rule for whenever you have doubt. I eat salads without any problems. Drinking lots of water throughout the day will also really help the pipes.

Lastly, please note that the experience you are having with a temporary ilestomy is not realy the same as having a permanent one- temporary ones are more prone to leaks I believe. I am hoping things work out for you, but if not and someday you need to have the permanent one, don't look back your current expereince and think that's how it is all the time. It's a different life, but it's becomes very normal and really not much of a hassle.
__________________
Hobbes650

Ulcerative Colitis 1986
Complete Proctocolectomy with j-pouch 1987
Permanent Ileostomy 1991
Crohn's Disease (just inside stoma) 2012
No meds post 1987 surgery to 2012

Current Meds:
Pentasa 3000mg daily
Imuran (Azathioprine) 100mg daily
Folic Acid supplement: 1mg daily
Mulit Vitamin/Fish Oil or Flaxseed Oil daily
Tumeric and Boswelia occasionally.
12-26-2012, 07:37 PM   #6
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
Why do you say a temp is more prone to leaks than a permanent one?
__________________
Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
12-26-2012, 08:10 PM   #7
Hobbes650
Forum Monitor
 
Hobbes650's Avatar
 
Join Date: Jun 2012
Location: Burlingame, California
Why do you say a temp is more prone to leaks than a permanent one?

Yeah, I did use a blanket statement there and I probably shouldn't have. I had my temporary one for just a few months, and from what I remember it looked a little different and it spit out a little different too. My temporary was a Loop ilesotomy which are easier to reverse than my permanent one. I'll do some more research online but I remember I had more trouble with my loop ileostomy than with my permanent one. I'm sure surgeons have their own individual preferences when performing ostomy surgery, so it may not be correct to say the temps are more prone to leaks. Mine was, but that was in 1987.
12-27-2012, 08:20 AM   #8
gracifer
Senior Member
 
Join Date: Feb 2011
Location: London, United Kingdom
Terriernut - I have a temporary loop illeostomy. I'm finding it really hard, as i always considered it to be my 'worst nightmare' before I got one, so I am really struggling. But feeling better about food as I'm eating more now. But they have said it's only going to be about 3 months - counting down the days already.

From what I can tell, moderation is best. Just got a little obsessed with food in hospital, because I couldn't have any - as I was so ill. Was just wondering how about sweets? Mangos? Pears? I know mum is going to de-skin them.. Are they ok?

No-one spoke to me about a low residue diet, or anything to do with 6-8 weeks of being 'extra' careful. They pretty much said, just eat anything you want but in moderation. I have been given some stuff about blockages - nuts, dried fruit etc. It's only since I've come home, and started looking things up to be careful that there seems to be a lot of conflicting views on what works and what doesn't. I had some skinned tomatoes last night for the first time and it was so nice. I'm feeling a bit better now that I can eat more..
12-27-2012, 08:35 AM   #9
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
The reason there is so much conflicting information is...everyone is so different! There are some things we all have trouble with in the beginning though and that is nuts and popcorn. Then again, we most of us had trouble with them before our ostomy's anyway!

Moderation is fine. (fine time of the year for THAT..not) So, just dont overdo anything.

Enjoy eating!!!!!!!!!
12-27-2012, 09:20 AM   #10
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
Cooked pears, peaches and apples are good safe fruits, all without skins. Pretty much all cooked fruits and veg are safe, but be aware of mushrooms and whole corn. Mushrooms can swell and possibly cause blockage, especially with new stomas. It's best to stay away from corn for the most part, as it doesn't break down and can also cause blockage. Some people do well with creamed corn because it is already split and mushed up.
12-27-2012, 12:53 PM   #11
Hobbes650
Forum Monitor
 
Hobbes650's Avatar
 
Join Date: Jun 2012
Location: Burlingame, California
Cooked pears, peaches and apples are good safe fruits, all without skins. Pretty much all cooked fruits and veg are safe, but be aware of mushrooms and whole corn. Mushrooms can swell and possibly cause blockage, especially with new stomas. It's best to stay away from corn for the most part, as it doesn't break down and can also cause blockage. Some people do well with creamed corn because it is already split and mushed up.

I remember being a little freaked out at first when eating mushrooms. They look exactly the same coming out, just longer and flatter. Even now I don't each corn on the cob, or any corn in general unless it is cooked well or creamed. I'm sure I could eat a little and be fine (like if there's some corn in a vegetale soup), but If I have a choice I choose something else. Corn is one of those things that doesn't break down much, if at all. Pretty soon, you'll be an expert at which foods break down well.
12-27-2012, 01:00 PM   #12
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
I finally tried mushrooms not long ago and I was also impressed out how it looked exactly the same.
12-27-2012, 03:09 PM   #13
Absentminded
Forum Monitor
 
Absentminded's Avatar
 
Join Date: Nov 2009
Location: Bristol, United Kingdom
I had a few bean sprouts in a spring roll last night by mistake. I freaked myself out preparing for a blockage, but in the end it was all fine!
__________________
Lucinda x

Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
Current Medication: NONE!

Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
12-27-2012, 03:13 PM   #14
Terriernut
Moderator
 
Terriernut's Avatar
 
Join Date: Dec 2010
Location: United Kingdom

My Support Groups:
Ya'll should see me go to town on Chinese takeaway...cabbage, mushrooms, all sorts. It's worth it! But only once in awhile, not frequently. I dont like to tempt fate.

It is quite interesting what comes out whole. Then again...I may be Abbynormal?
12-27-2012, 03:25 PM   #15
2thFairy
Senior Member
 
2thFairy's Avatar
 
Join Date: Sep 2010
Location: Dallas, Texas

My Support Groups:
I am definitely Abbynormal because I get excited to see what things look like after I try something from my cautious list.

Yes, I am a stoma fountain watcher.... hahaha!!
01-05-2013, 06:26 PM   #16
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
hahaha, thats one of the benefits of having a stoma - You can see what everything looks like as it comes out and you can see how quickly stuff goes thru you. I was very impressed with peas and carrots only taking 45 minutes the other night! And the peas looked whole again!
As for food, I avoid anything too stringy but basically eat anything, even corn though for some reason I always get bag leaks after eating it - don't know why.
However I have never been prone to blockages so if you are I'd be more careful about what you eat.
01-06-2013, 03:46 AM   #17
Paul Heath
 
Join Date: Sep 2012
Location: Cornwall, United Kingdom
I was told to avoid mince pies, which has been very hard this time of year, as the dry fruit cause blockages, so my Mrs bless her liquidised the fruit, when she made them, but they just not taste the same, so did not eat them this year!!
On the whole it's not been too bad, as tend to eat what I fancy, but just chew it well.
02-01-2013, 08:36 PM   #18
persephone300
Senior Member
 
persephone300's Avatar
 
Join Date: May 2012
Location: wiltshire, United Kingdom
My stoma hates anything chunky - like a cheese toastie with diced onions/tomatoes - no matter how much I chew and drink the next day they're popping out.

Baked beans were awful, won't try them again.

Cabbage I used to cut in strings and they came out like that and yuk - so now I chop finer and it tends to be better.

Chicken tends to maske my output really thick

I try and keep mine at a liquid consistency because mine is inverted and tiny, so anything too thick just sticks on my stoma (and in the bowl of the convexity bags) until it breaks through the flange.
__________________
Diagnosed IBS 1999, panic disorder 2004, finally,Crohns 2006.

Taken numerous drugs all had side effects/hasn't worked so had subtotal colectomy 19th Oct 2012.

Probs with inverted shrinking stoma, daily leakage, burns, pain, miserable. Revision March 2013 and much better quality of life, but occasional leakage, burns and a stoma that refuses to stick out every day is the norm.
02-03-2013, 06:06 AM   #19
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
Yep, baked beans are a nightmare- much as I love them they are just too gassy as is cabbage which I also used to love in coleslaw.
Persephone, I'm so sorry you haven't had your revision yet - can't believe you have to wait so long for it!
02-03-2013, 06:28 AM   #20
persephone300
Senior Member
 
persephone300's Avatar
 
Join Date: May 2012
Location: wiltshire, United Kingdom
my problem with baked beans as as I haven't got a proper hole nor spout, the sheer force of the push, was awful - pain and then a feeling of popping from my stomach which makes me cringe. They were also getting themselves under my flange and pushing my bag away
02-03-2013, 07:05 AM   #21
annawato
Moderator
 
annawato's Avatar
 
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

My Support Groups:
Ouch! You must have a tiny opening in your stoma. The sooner the surgeon can fix it the better. As for getting under the flange, thats the problem I have with corn - not sure why it happens though.
Reply

Crohn's Disease Forum » Surgery » Stoma Subforum » Ileostomy and food
Thread Tools


All times are GMT -5. The time now is 06:44 PM.
Copyright 2006-2017 Crohnsforum.com