help me help my friend please!

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New Member

Date Joined Nov 2009
Total Posts : 1
   Posted 11/21/2009 3:17 PM (GMT -6)   
my best friend was just released from the hospital after surgery for rectal cancer. Understandably, she is in a fragile emotional state and very freaked out about the supposedly temporary ileostomy bag. The hospital staff at sloan kettering did NOT give her adequate discharge care instructions, NOTHING in writing to refer to. she has stopped eating and drinking because she's afraid the bag will fill up and leak and she won't be able to handle it. she's also afraid to sleep in case of an accident. she won't take the prescribed ativan to calm down because she's afraid to fall asleep. in general, her nursing care from diagnosis thru radiation, chemo, surgery and now aftercare has been abominable. this is a woman who has always been among the strongest i know. but she has never been seriously ill before, or taken much more than an occasional tylenol. she's overwhelmed, but i'm 1000 miles away. so i'm trying to get some advice or websites to visit. please help! thanks

Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 11/21/2009 7:58 PM (GMT -6)   
Good Grief, Slaon Kettering! I guess the "see if we care" attitude is in some surprising places. I had irreversible damage to my rectum, pelvic muscles, and colon and severe scarring of my small intestine in a surgery at a large medical center where I live. Took 13 months, 11 docs and 7 med centers nationwide to figure out what could be done to save my life. Had the adhesions taken off my small intestine and a permanent ileostomy. Your friend has it rough as she is also dealing with cancer and the treatments. However, here are some ileostomy tips I can offer. 2+ years and so far no bag accidents:

Here is what I use. I was blessed with fabulous stoma nurses:

1. Convatec Sur-Fit Stomahesive Flexible Skin Barriers
2. Sur-Fit Natura Drainable Pouch with Invisiclose Outlet (That means the pouch open at the bottom and them rolls up with velcro)
3. To get the old sticky off, I use UniSolve wipes.
4. Then wash the area with water and IVORY soap (NO LOTIONS, NO Additives. These would leave the skin too slippery for a good seal. Then I really rinse the area well and pat dry.
5. Then Put on All Care. It's a wipe that puts like a layer of shelack on your skin to protect it.
6. Then use an Eakin Seal (moldable putty type donut around the stoma) this keeps the skin between the stoma and the edge of the wafer from getting burned.. For a small burn which I now have (I still get one off and on) I spray on some Stomahesive Powder.
7. Put the wafer on (You've already cut a hole 1/8th to 1/16th of an inch bigger than the stoma)
8. Then to make it so you don't have to press the ring on the bag too hard to get it to click on to the wafer, you put a bit of foam soap on the ring on the bag. Then click it on to the ring on the wafer that is already on you. BE SURE to click all around so there are no gaps.
9. And voila!! There you have it, all set.

As far as diet, I'm STILL trying to figure it out. Sugary stuff I just have to try and avoid as it speeds up output way too much. Stuff like bread and potato applesauce, bananas, make output real thick. When my ileostomy was new I had to eat and drink separately or all the food would just wash right out of me. Now that I'm "adapted" it is slower and most of the time I can drink with my meal. Avoid nuts, seed, peals, popcorn, anything with chaff left over in your mouth don't swallow it or you COULD get a stomal clog. I tend to be very conservative as I want no further issues. OTher ileostomates are more adventurous but I figure no food is worth an NG tube and some procedure or more surgery.


My best wishes, Sincerely, Rosemary

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 11/21/2009 9:04 PM (GMT -6)   
Ok, def tell her to take the atvian, that will help alot! If she is worried about leaking at night, have someone get her some waterproof pads, you can get them at babies r us, and she can sleep on them, i still do its like a secuirty blanket to me, so that way if i shoudl happen to leak, it goes on there, not the bed!
As for eating, for the first 6 weeks, she should eat a low residue diet. That means, no fresh fruits and veggies, nothing with skins, and no stringy meats (bbq, roastbeef) and drinks are fine, however some do go through faster than others! After those 6 weeks are up she can try introducing foods slowly, to see which are going to give her gas or troubles. Personally, i eat everythign but nuts, i just drink LOTS of water or something if i eat popcorn or lettuce or something.
for the first few weeks she may have a lot of gas and output that will slow down. She can try some gas-x, two in the am, two in the afternoon, and some immodium to slow it down.

Leaks, happen, and they suck, but its not the end of the world and once she gets the hang of it, it wont happen much, if at all.

I use the hollister newimage 2 piece with the velcro bottom.
And what i do is takea bath, using Dial soap, i had probelms with ivory, but the important thing is to not use anything with lotion or scent in that area.
Then i get out, take the old bag off, and apply the new one.
I dont use any skin preps or anything, that seems to cut my wear time ALOT.
I just put the paste on the wafer, i clean the area around the stoma, apply the new wafer, and the bag, then use the hair dryer on in to heat it, then press my hands down to make it stick good.
everyone has different ways to put their bags on though its kind of trial and error.
I dont know where sloan kettering is, so im not sure what area that is, but she might try another hosptial to talk to their ET or find a support group near her and contact them for some in person help.
hope she feels better!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 11/22/2009 7:05 AM (GMT -6)   
You're a good friend, and I'm so glad you found us! Please tell her about this site, too, so we can answer any specific questions she may have and encourage her, as well. That's unfortunate that she was not given adequate instruction on how to care for her ostomy. Some of us on here have had ostomies for over 25 years, so we'll be able to help her! :-)

Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Veteran Member

Date Joined May 2009
Total Posts : 827
   Posted 11/22/2009 2:06 PM (GMT -6)   
HI. I am so sorry that your friend has had such a hard time. What a difference good nursing can make! I am going to repeat what flchurchlady said. Please tell your friend to come to this site. My 18 yr old son had his colon removed for ulcerative colitis about 10 weeks ago and these amazing people have been so wonderful with helpful information and emotional boosting. They really are a wealth of information. Specific questions, no matter how silly they may seem, make it a little easier for us to help.

I cannot stress how important it is to be up and moving. She needs to get out, get some fresh air and WALK. Even though it is hard, nothing helps more that WALKING, WALKING and then WALK some more.

Please tell her that the beginning can be overwhelming but soon, as she becomes more "at home" which her ostomy, life will look better. She needs to look at this as the first step to regaining her health. I do know that at the moment things can be daunting.

My son, who also does not like his ileostomy, IS adapting very well and has regained his health and strength.

We are thinking of you and your friend.

Cathy (mom of Dillon, age 18)

Veteran Member

Date Joined May 2009
Total Posts : 827
   Posted 11/22/2009 2:07 PM (GMT -6)   
PS...I forgot to mention what a great friend you must be!!!

Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 11/23/2009 9:56 AM (GMT -6)   
You are a good friend!! Send her in. Ditto the above. Meds are helpful.

She needs a reality check. The bag is there and if she deals with it now it's easier than later. You said it was temporary, then "this too shall pass".
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009

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