Scared to eat after surgery

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Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 7/12/2008 7:14 PM (GMT -6)   
My daughter has been home from the hospital since late Wednesday evening. She was allowed to start on a low residue diet on Tuesday but really didn't have much of an appetite in the hospital (and even not much now). She is starting to get hungrier but seems afraid to eat. She's had a little food (1/4 of a grilled cheese sandwich, 2 oz. of applesauce, pudding, etc).  She had some chicken today (small bites, chewed very carefully) but some pieces came out in her bag. Her stoma is very high in the small intestine so there isn't alot of time to digest.
 
Did any of you experience a feeling of being afraid to eat or unsure what to eat? Any suggestions on what to eat? She doesn't like peanut butter, pasta, applesauce or eggs. Bananas bother her sometimes. I am trying to get her to eat a baked potato.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/12/2008 7:31 PM (GMT -6)   
I'm so glad she's home from the hospital! :-) It sounds like she's been eating just the right foods, like grilled cheese, pudding, and chicken.

That's normal to get some small pieces in the output. Tell her not to worry about it. Does she like mashed potatoes? They are soft and easily digested. Soups are good, too. As long as she chews everything well and drinks plenty of water, she'll be just fine.

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


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 7/12/2008 7:56 PM (GMT -6)   

I supplemented my meals the first few weeks with Ensure type nutritional drinks.  They are not the best tasting things in the world but they might help with keeping her nourished.

John


Total Colectomy with End Ileostomy May 27th, 2008


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 7/12/2008 8:28 PM (GMT -6)   
Thanks for your quick replies. Overall she is doing well. She did get out with us today to go food shopping (our refrigerator died when she was in the hospital so we had to throw everything out--the freezer luckily was still good). She used one of the electric scooters they have. She went to our neighbor's house to visit for awhile.  She doesn't seem to mind the ostomy bag but hates the wafer. She hates anything against her body. And I can't tell if her skin is a little irritated from it. Her incision is healing which is good but it itches. And she hates the tape over the dressing. I'm just hoping over the next week or two her body starts to heal enough so she can adjust. She isn't in too much pain. She rarely needs even tylenol during the day. She has taken a darvocet at night mostly because it allows her to relax enough to sleep.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 7/12/2008 8:36 PM (GMT -6)   

You can gently remind bratcat that her surgeon will want her strong and healthy for her next surgery so she will need to get some nourishment.  I know it can be surprising to see the ostomy output (and it will be very similar with a jpouch) but it doesn't mean that food is not digesting.  She is abosrbing calories in her terminal ileum it's just that now without a colon there isn't anything to pull the water from the waste and form a solid movement.  Believe it or not many foods that coloned people eat come out the same way they are just hidden within the solid mass.  Get her to do some walking as to jump start her appetite and feed her foods that she really craves.

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


awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 7/12/2008 9:26 PM (GMT -6)   
hey! if she's scared to eat something because of poor digestion just throw it into a blender first. i do this with all my soups, even though it's not really necessary. it doesn't change the taste, and here in this area ppl think blended soups are "fancy" LOL. in my experience any COOKED vegeatable will pass through no probs, it's just her having to get over the thought that it might not. personally i eat a heavy protein diet, output seems to stay pretty liquid-y and is high right after a meal, but then nothing for 3-4hrs. with veggies i find output is more, perhaps an empty every 1.5hrs, and thick. but that's just me-everyone is different!

--matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/12/2008 10:21 PM (GMT -6)   
i was really worried at first to eat stuff, esp things that made me sick before surgery, so i just tried very small amounts of things.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/13/2008 12:35 PM (GMT -6)   
Bennie-does Bratcat have clear or opaque pouches?  I never liked the clear ones and somehow since I cannot see the output in the opaque ones, it is mentally better!  Another food that usually helps me thicken up my output are french fries...I buy the kind that you can bake in the oven with a little salt on them, YUMMY!  (McDonald's are good, too, but I didn't eat them for a few weeks after surgery)  I also ate ALOT of Rice Krispy Treats throughout the day.  I always made sure I had a few next to me so if I felt like eating, I could nibble between meals. 
 
It is definately tough to get along with all the stuff on your belly...does she still have her staples in?  I know once those come out things start to feel a little better.  Like Suebear said...walking is great even circles in the driveway!
 
 
 
 

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/13/2008 8:36 PM (GMT -6)   
yes the staples do make it worse, i think it's more mental than anythng, but those things are gross!!! The clear bags are horrible, i dont' know how people stand those, lol.
French fries do help, on the way home from the hospital i stopped and got french fries from mcdonalds! it actually made me cry, this is so stupid, but i was so happy that i could get food and eat it in the car, without having to worry abotu getting sick!

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 7/13/2008 10:36 PM (GMT -6)   
summerstorm said...
yes the staples do make it worse, i think it's more mental than anythng, but those things are gross!!! The clear bags are horrible, i dont' know how people stand those, lol.
French fries do help, on the way home from the hospital i stopped and got french fries from mcdonalds! it actually made me cry, this is so stupid, but i was so happy that i could get food and eat it in the car, without having to worry abotu getting sick!
 
Great post! Sure, sometimes having an ostomy can be a little bit of a hassle. Having a normal digestive tract can be a bit of a hassle too! But when you consider all the benefits you've gained, even something as seemingly insignificant as eating French Fries in your car, it's definately worth it!

Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 7/14/2008 7:33 AM (GMT -6)   
Serious ditto on the clear bags. I can't say enough about how my outlook improved when I finally used the last of the ones the hospital had given me and switched to opaque ones. I felt absolutely inhuman with the clear ones.

I was also stunned by how fast everything went through and was sure that I would never regain the weight I had lost while hospitalized, but sure enough, I did. The output also slowed quite a bit after the first few weeks or so.

Here's a great "thickening" blended soup I make and really enjoyed (plus it let me get in some veggies without worries of whether I was chewing enough): saute some onions, add a few cups of chicken or vegetable stock and one or two cut-up sweet potatos (I usually add at least one regular potato since I don't like sweet potatos that much), a handful of baby carrots (or a regular carrot chopped), and a about a tablespoon of chopped ginger. Bring to a boil, simmer until veggies are done, then run through the blender. Adjust for consistency with water, and salt and pepper to taste.

I also serve this to coloned people, who have liked it!

Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 7/14/2008 8:11 AM (GMT -6)   
My son had his surgery in April and my best advice is make sure she is drinking plenty of fluids (1/2 her weight in ounces). My son ended up dehydrated and back in the hospital (there were other issues, so don't panic).  He was pretty careful the 1st 6 weeks, but since they he eats anything he wants and tells funny stories about when he was changing his bag a black bean popped out.  Certain things are harder to digest (like lettuce - he stays away from), but overall he is feeling great and has adapted well.  He was eligible for the 2nd step this week, but has opted to just live with the bag until next summer, so he can go to college.  It may now seem like it know I know, but she will adapt and when she starts to get her energy back and starts going out and doing things, she'll be good!!!! Hang in there!!!!!!!!!!!!!!!!

Mother of 18 year old son
Ileostomy on April 18, 2008
 


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 7/14/2008 10:49 AM (GMT -6)   

You all have great suggestions. I think mostly it is just time that she needs to adjust to the new feelings of the stoma. And the aches of her body healing.

Charlotte--the soup sounds delicious. I think I may try it for all of us!

Lew--I am glad your son is doing better now. I can't believe he is eligible for step 2 already. It seems like just yesterday that he had his surgery (it was my birthday). I'm not sure if the 3 months went as fast for him (I remember all his setbacks he had for awhile). My daughter will be able to have step 2 in October. Originally she figured she would wait until Christmas to have it. Right now she would like to count the days until October!


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 7/14/2008 11:07 AM (GMT -6)   
I don't know if she's interested, but they make these covers (duvets) in solid colors or patterns and my son likes them b/c he doesn't like tucking in his bag b/c he says it pulls, but these covers make it so the bag doesn't hang out under his clothing.  He also loves (if that's possible) the Hollister 2 piece system with a filter.  He changes his bag in the shower and has really taken total responsibility. I'm totally freaking out, but several people on this site and the j pouch site have tried to talk me down from the ledge.  Is your daughter going to be a senior this fall?

Mother of 18 year old son
Ileostomy on April 18, 2008
 


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 7/15/2008 11:13 PM (GMT -6)   

Lew, what are the duvet covers? Where can we find them? She hasn't even gotten to the point of trying to figure out where to lay her bag. Right now she just wears a longer baby doll shirt (luckily they are in style now) and lets the bag hang over her shorts.

She will be a senior in high school this year. Hopefully she won't miss as much school as she has for the past 2 years.


--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


Lew1201
Regular Member


Date Joined Mar 2007
Total Posts : 111
   Posted 7/16/2008 6:41 AM (GMT -6)   

My son also doesn't like to tuck in his bag.  He says it pulls, so he wears it out.  Unfortunately with guys, there shirts aren't as long so sometimes it hangs out a little.  We found these bags at www.colorbydnf.com.  It's two women and they are really nice.  He likes them when the bag is empty, but when it fills up, he says the bag gets a little bulky, but he still likes it better than tucking the bag in.

I'm glad she has another year at home as she goes through all this.  I'm pretty nervous about the whole college thing, but I have to realize that this is something he is going through and he's really tired of how it's effected his life and he just wants to try and live as normal a life as possible.  All we can do is support them and be there for them.

Has she started eating a little more?

 

 


Mother of 18 year old son
Ileostomy on April 18, 2008
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/16/2008 10:03 PM (GMT -6)   
at first the bag will pull at you and hurt, after you start to heal, it feels better.

The way i wear mine is to turn it up on itself under my undies.
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