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ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/17/2010 12:49 PM (GMT -6)   
Hi- Im here trying to help out mom with her colostomy turned iliostomy with the last surgery problems.  Mom has had her last surgery option oct 09 she was diagnosed with colon cancer stage IV in april 06- she in two months will be 76.   she had 3 colon resections and partial liver and sternum  removal, some ablation on liver mets, and hysterectomy plus lymph nodes removal. and radiation 2 times plus 4 different types of chemo treatments. she had a temp colostomy which became permanant and now is considered iliostomy.  she just came back home yesterday after having severe( to the point of one more day and.. she would have died.)dehydration problem then while weaning her off the chemo pills she had a mild heart attack too.  hydration and nutrient absorption  is a major problem for her and the output .is fast and her bag is full every 2 hours .  Its horrible-they have her on questrian,lomotil, immodium, and is considering a sandostatin injection once a month. she knows well of the BRAT diet and most of the foods that are suppose to help-were trying the marshmellow thing now. any more ideas to slow things down enough in hopes of getting more absorption time in would really be appreciated. (I do belong to the cancer forum as well but they arent a whole lot of help with the ostomies that are permanant.  thanks in advance with  positive thoughts and prayers   

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/17/2010 2:01 PM (GMT -6)   
oh my im so sorry for her problems!
So, you have tried all the thickening foods, bananas, peanutbutter, lots of bread, i find soup with tons of crackers makes mine really thick.
And you have tried keeping her off thinning foods, juices, sugars, caffeines?
You should maybe try giving her some ensure, to help with the nutrients, and chewable vitamins, also what type of immodium and lomotil is she taking, are they time released? Also, if they meds are scored, cut them in half, it will help them absorb faster.
Also, maybe get some of the geltabs for her bag, it wont help with the absorbtion, but it will thicken the output in the bag, i think that makes it less annoying.
I wish i had more help
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-


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 4/17/2010 2:21 PM (GMT -6)   
It sounds just like me...unfortunately, I haven't found anything that works. I'm on IV fluids and TPN every day to somewhat make up for it. I don't have the bag anymore but I still have high output. I tried all those drugs, though they were giving me the Sandostatin twice a day. it hurt like crazy so they started to do in IV infusions instead. It didn't help anyway. Anyway, I'm sorry your mom is having the same problems. If she is dehyrated all the time she may need IVs at home. It's just a little pump in a backpack
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 500 mg (3/day), IV fluids 4 hours/day, TPN 12 hours/day


ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/17/2010 2:48 PM (GMT -6)   
summerstorm-Thanks for replying what are those gel tabs your talking about?-is there a spoecificname? where can we get them? throug the ostomy supply? she takes Immodium every 4 hour and I cant remember how often lomotil(thats just a stronger immodium),(I thought liquid immodium may absorb faster(or run out faster?)  her doctors push juice and power or gatorade because of the nutrient absrption provlem.shes not a big sweet eater drinks if feeling ok 1-2 cups of either decaf tea or coffee plain...you were very helpfull (thumbsup) Ill look int those gel-tabsthanks again.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/17/2010 2:56 PM (GMT -6)   
I'm very sorry to hear about your mom's problems, too. The gel tabs that Summer is talking about can be purchased with your mom's ostomy supplies. She can put one inside the pouch to thicken the contents, so it's not so watery.

For major dehydration, if she can't get the output to thicken or slow down, the best thing for her is to get set up with IV fluids at home.

You are both in my thoughts and prayers,

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


ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/17/2010 2:56 PM (GMT -6)   
Pam222-thank you for replying too. she has been on tpn in october for 6 weeks when she had her last surgery she stayed with me .(wasnt that easy with her pic lines getting clogged all the time) she has a pic line in now because she has these tiny pediatric size veins and they roll. alot of them are too damaged for blood draw now . between chemo IV's and all the bloodwork and regular IV's. not many left to jab.you figure 4years and age 76? kindof tough. but yeah,I think it might come down to mybe an IV here and there. Ill never let her get that  dehydrated again. looooog storrrry. Not use to telling mom what to do even at my age(smile)

ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/17/2010 3:00 PM (GMT -6)   
flchurchlady--thank you for clarifying that for me Im seeing mom tonight as a matter of fact were getting ready to leave now cant wait to give her some helpfull info.-soo thanks all and have a nice evening-Ill be on later tonigt if I get the time.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/17/2010 6:52 PM (GMT -6)   
the gel tabs that i use say gel-x on the bottle, and i usually put 2 or 3 in the bag, i order them from edgepark

I think the liquid immodium would be better.
And honeslty, the juice is probably making the output worse. She def needs the fluids, but juice makes it watery, at least for most people.
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-


ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/17/2010 8:54 PM (GMT -6)   
summerstorm-thank you just got back and shes trying to get a system going again-kindof out of sinc since the hospital. had about 4 bad leaks already but shes happy to be home. open to any or all suggestions that could possibly help from anyone that we havent yet tried.-I appreciate it.{{{{hugs}}}}

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/17/2010 10:35 PM (GMT -6)   
tell us what you are doing, and the products you are using then maybe we can see why she is having so many leaks
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-


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/18/2010 4:41 AM (GMT -6)   
You've gotten some great info and I'll just ditto the juice comment...sugar makes things move so much faster! Liquids are important but can make things worse if they just shoot through. Can she tolerate salted pretzels or peanut butter crackers? Eating when drinking could help a little. Or, foods that have their 'own fluid' will help hydrate (a little) without the added liquid.

I'd think, for her situation thought, an IV would be the way to go.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/18/2010 10:03 AM (GMT -6)   
ohio made a good point, salt will help her retain some of the water.
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-


ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/18/2010 11:32 AM (GMT -6)   
Im almost sure her products are called convatec? But she has in the past tried the different types fixtures etc.   she right now has the drainable bag with the velcro ends(doesnt leak there) her body is small she cant use adult bags(for one problem-they dont stay on shes too narrow where the stoma is) she uses the system where she cleans the area (not soap) then uses a prep pad fans it till its tacky has her wafers precut and ready, sometimes uses a dryer to tack that up. But seldom has time for that before it shoots out.  she makes sure there are no creases or wrinkles . what happens for the leaks(oh also vents which are worthless -) is almost everything they want her to eat for absorption she gets alot of gas build up and thats what does it.Shelooks at it often but sometimes the gas and liquid have their own mind and swoosh-you know the rest. oops running out of space-to be continued....

ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/18/2010 11:40 AM (GMT -6)   
...cont. ...she is currently on coumadin/asprin regimine, b.p medication, and still has chemo-5fu and xeloda comming out of her system(they stopped it)  but will come out for a while yet. she has the anti nausea medication immodium lomotil calcium potassium and questrian, as far as I can remember she does that daily with a required either gatorade or powerade 20 ounce 1-2 a day. They suggest the brat diet and carrots. and a few other things.  she emptys it every 2 hours and at night we set up a (like a foley) to her small bag which empties into a large bag for night-(works fairly well. its daytime mostly now problems) but when she gets up at 3am to urinate she has to lug a 1/2 gal of liquid with her from the big bag(so not fair)

ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/18/2010 11:49 AM (GMT -6)   
Ohio 76- yes she eats salted pretzels and I just bought her some lances toasted peanutbutter crackers.  (hoping that will help) she also loves toast with peanut butter and bannana slices on it.  we heard it is better to drink some liquid before eating drink minimal to none while eating then at the end drink???  shes working on that one too.She truly loves food but so many things she has to watch because of the bag effects, she loves greens of anykind-go figure cereal-go figure veggies-go figure-spagehetti (her mouth is all sore and ulcerated from the chemo- hmmm  etc anything greasynono anything with spices(you know anything that may taste good?)nono  but right now she cant taste anything -its an improvement-she went from chemical taste to cardboard-and at least its all staying down(thumsup)  so were trying everything and anything-trying not to post over space limit..its har.  thank  you all for caring and Ill say a prayer for this forum tonight.tongue

ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/18/2010 12:05 PM (GMT -6)   
I fogot-she is suppose to avoid milk,icecream-she is allowed lactaid or soy. she doesnt mind , that was her only real restriction(not bad)  she almost had salt restriction untill they decided her heart was ok after the attack last week and it was a result of getting off the chemo regimine. nothing shocks or amazes us anymore except how she keeps managing to survive after all this time and at her age.turn

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/18/2010 7:39 PM (GMT -6)   
well milk and icecream can thin it out anyway.
I have never heard of drinking before and after and not drinking during your meal. I have no idea what that would have to do with anything.

those prep pads can actually cause a leak! The only time they should be used, is if you have a sore and are trying to cover it up.
You also need to measure her stoma, it shrinks as time goes on, the hole may be too large!
This is what i do, maybe it will help

I cut the hole in the wafer i cut it a teen tiny bit smaller than it needs to be, i mean like a really teeny tiny bit!
I get everything ready, my bag, my wafer with paste already on it, two towel squares on the floor.
I stand up, pull part of the bag off while holding it in the garbage bag. I dry the area with another towel square, if i use soap its dial, but i only do that if its got poo on it or something. And generally just plain water works fine. I dry it very very good.
I put a towel square over my stoma, so that none gets out.
Then i lay down, flat on the ground.
I take the wafer in my left hand, put a clean towel square in my right hand, remove the square from my stoma, stick the wafer on, and put the clean square on top, and i do that very quickly, of course i have had three years to practice, lol.
Ok, then i smooth it out for a minute, making sure it has stuck good. I put the bag on. I standup, and redo the bag, its easier to put it on standing up, i have the hollister new image, and it has a tupperware type seal, i just click it on and off until i get it right.
Then i take a hair dryer, heat the wafer all around for a short period of time, then run my hands over it, and press down, to make it stick really well.
Then i use a sure seal, but until she makes sure that is going to stick for a bit the sure seal is probbaly not a good idea!
Hope that helps some.
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-


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 4/18/2010 8:05 PM (GMT -6)   

Another thing to drink instead of the gatorade/powerade is coconut water. It's the best source of natural electrolytes. It comes in containers like juice boxes and you can get it at health food stores or Wegman's in the health food section.  My nutritionist had me drinking one container a day when I first had my surgery and that's when I was having 20+ bms (had a subtotal) I never had any problems with dehydration.

Just a suggestion, as I couldn't handle any sweets.  Hope this helps and prayers are with your Mom and you.

Judy


 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile/many kidney surgeries 5/09 through next summer
 
There's AWAYS HOPE, there's a doctor out there that WILL help you and things WILL get better :):):):):)


ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/18/2010 8:18 PM (GMT -6)   
summerstorm-The prep pads have something in them to wipe off anything that will prevent it from adherring..they work well..you must be thinking of something eles. she use to be able to keep the bags on for 4-5days when it was more manageable.-she was ok then .now shes afraid(and still too weak ) to go anywhere . shes having trouble getting any kind of system because she was told to eat several times a day small amounts to ensure some absorption of nutrients if she doesnt put something in her stomach about every 3 hours she gets really nauseated. she even has to eat something at 3am now. When she emptys the bag in 2-3hours its 3/4 full and she could just get another on and its fills with eiher gas/liquid combo or just plain fills. she loses alot of fluids.seems more comes out than what she puts in. If she goes too long without eating she also gets weaker. she has had a permant colostomy since diagnoses of the cancer april 06 this is not new to her the uncontrolable part and nutrient absorption is new since oct 09 with her last operation. as the surgeons put it -it was her last quick fix for the cancer she cannot have anything more removed.
her stoma has been the same size the last 2 years. It never use to but now it swells occasionally-guess from constant use? thanks -for trying soo hard I really appreciate it.

ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/18/2010 8:33 PM (GMT -6)   
finallyfree- thank you Ill check into it if she will drink it that  cocoanut will be good -help put some calories in her as well.! thanks good idea

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/18/2010 9:30 PM (GMT -6)   
oh, im sorry i thought she just recently got it, i wasnt paying attention, lol.
What i know of as prep pads are what you put on right before you put on the bag,
adhesive removers are what take off the old stuff.
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-


ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/18/2010 10:17 PM (GMT -6)   
summerstorm-she only wipes off with the prep pad and then the cut wafer the back peels off and it sticks then the bag peel off and sticks to the wafer-she cant stand the snap ons-too much scar tissue that pinches when she tried that one.

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 4/19/2010 12:33 PM (GMT -6)   
Just wanted to add that we were told that Gatorade (which has 35g of sugar) can really increase the output. Here in Canada we have G2 which is Gatorade but with only 7g of sugar. My son noticed a big difference in the output when he stayed away from the sugars. Most fruit juices also have 35g of sugar.

ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/19/2010 1:41 PM (GMT -6)   
collicat-thanks That sounds good but they want her to drink 22oz powerade or gatoraide a day plus 8 glasses of water or water based liquids (I know se doesnt) because she came home with 6 from the hospital she hid them from themnono  because she tends to dehydrate extrememly quick. poor thing everything she needs to do counteracts another thing This is what makes it soo hard. I believe she only has a few inches of large intestine left and all of the small which is why its such a problem-but maybe towards evening she can cut back as long as the morning afternoon is loaded?  but I will check into that-Thank you(smile)

ss2010
Regular Member


Date Joined Apr 2010
Total Posts : 20
   Posted 4/20/2010 11:22 PM (GMT -6)   
someone was asking me what meds she was on a bit back I finally got her latest list-all of these are 2-3x day except the xanex which she only takes when her stress level is bad. so lomotil,questron,xannex,coumadin,compazine,tetralac,lopressor,asprin,immodium,K(potassium),calcium,mag.oxide, and her allergy pill clorapheneramine. plus the requirement of liquids and gatorade or powerade. she wonders why shes soo tired well I found out today she is getting up every 90 minutes all night empty the bag (and its full) she said actually today was the first slower day and its about every 3 hours . shes trying to follow alot of the suggestions you have all given (the ones she hasnt tried) I believe some are starting to work a bit for her but altho she has for the last two days only had a small peanutbutter cracker snack the output is still full -maybe its starting to slow down..I personally think the opening on the stoma is too big since it was originally designed for a regular colostomy. appreciate all your kindness and concern-saying a prayer for this forum tonight.
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