I do the lots of skirts-jean skirts - maturnity jeans-plaza pants-- To thin to wear yoga pants..

(padded bra now) -used to be  a 40 double D... (Cant find them anywhere now GONE!!..  :>( (- to much weight loss..  ) I do panty hose- tights, but before I wear those, I stretch them over a pillow-the upper part for awhile. -- and no under ware with them-to binding.. I have a few shirt dress's.. and with the tops I have some cute belts of twisted leather and nice ropes.  delicate.. ,sweat pants and tops match- Ballet slippers now mostly s the heels tend to put me off a bit now.. But I am 5'8".. 113 pounds now- I love to shop-- Men just wear pants and maybe a sports coat- I miss my tight jeans and heals tho...  But at very late 60's-?? naa. I hit Marshalls and other shops like that..  I miss going to N.Y.C. too!  To weak to go now.. Thanks for the info- cant really find the nice long straight swetters anymore.. 

Jello water is goo also:

I reg size pkg. of jello

3 cups of hot water'3-4 cups of cold water 

DNTPUT IN THE REFRIGEATOR!!!! 

Helps with liquid out put- used to make this for my kids when they were young and out in the sun to much-- Just hauled them in to rest and drank this, they were fine.. I do this much--

Dona and Marcie,

Thank you very much for your helpful advice.  

I have never heard of jello water.  If I can make it with vegetable or fruit juice, that would be more tempting to me ...

Use sugas less flavored jello- its good!!!!!!!!!

Hi Kiya

John , Marcie and Dona are all right they have been threw it and have great advice . I too had a high output at first and it has slowed down but it did take me awhile . Yes you do need to drink water and fluids to stay hydrated and like Dona said watch the color of your pee . When I was still working and working in the desert in the summer they always told us to watch the color of our pee and drink today for tomorrow once you get dehydrated it can be tuff to get rehydrated . As for the barrier I use a Hollister HO14803 it is convex but its kinda hard and may not be right for you .  Also like Marcie says it can be difficult finding what works for you but you will . Took me awhile too the whole thing can mess with your head a bit but hang in there as John said you've been threw the worst of it !

Ya, Kiya, I'm cool........... :-)  

We ilestomates have to graz eat -like cows- My Dr. gets to the point.. This includes grazing with water or your choice of liquids.  I am now (3 years now) eating rather large meals-I eat more than my sons and husband and sons in their 40's.. For some reason I cant gain the 55 pounds back.. ore 1 pound. I also have to get fluids through my port hole for my kidneys etc.  They (whole insides) thirst so much for the fluids and my body cant keep up-and when I go to the E.R. they ask the same stupid question-why are u not drinking more fluids?/ Heck it goes right through me.. and I do NOT have a short bowel-u do as u said that part of your upper is gone along with the colon.. Not much help out there for me-but I hope that things turn around  for me. YOU must have SALT!! So get a hold on with this and I am sure that u will not end up like me.. Takes a good year to feel well again-so don't get depressed, and don't worry-your body has so many adjustments to make now, And don't rush things.  You as I and the others will never e the same again-just better!! Takes so much time and I am not a paitent person either..  They my team of doctors really didn't go the extra mile for me..  Just plopped me in the nursing home for 2 months to learn how to walk and that staff kept taking my juices that Tom brought in for me, saying that those were theirs and to be put in their kitchen-GONE! Sip your fluids a day long.. I and others that are in my shoes cant drink the amount of fluids that they want us to.. In fact I never drank that much before I got sick!! We are NOT text book people!! O.K.? We were sick and got/ getting better and adjusting to a new normal life. I have been through the ringer of comma,death,bleeeding internaly,3 strangulations of colon and UC, and never knew that I was sick-just went down passed out and had my million dollar vacation.. So, I know the many shock levels that are in front of you now, I wish I had this blog then.. So your a major step forward.. Best of all your not alone.. like I was. Go slow, drink slow (many times a day) and sleep well-sleep is the key of healing.. Do u have support at home? M.

Go ahead, make it with juice-- What ever floats your boat-- Even making just jello is good for us..  little at a time and build yourself up- Put fruits in your jello-- chopped up nuts.. Your boat it will float......... What ever you mind wants go for it!!! I do find dairy products clean me out right away-- so easy on that-Like Eric said, make a diary of foods you ate and see how fast they goon through.. then u know.. Coffee is a No-No-!!!!!!!! But if I am home and really want a cup? I will have a few sips=1/2 cup-but I pay for it-- crackers are good for gas, and holding fluids in-I do this at night time... Its an adventure! and I love adventures!!!! well???????

You are in the UK I believe so try the Salts ostomy system it is a UK company and have convex without the hard plastic center I use the one piece but they have two piece as well the wafer in some of the products have Aldo Vera infused which is easy on the skin will give you samples if you ask.

Dona, but if u wear the tight things like the yoga pants, leaks? pancaking? When I do wear tights or panty hose, I don't eat much and keep checking.. its new to me.. and you?????? 

Hi Marcie,

I only get pancaking when I eat too much stuff like crackers or nuts or fibrous things . Turns into some kind of concrete. All the water flows out under it and the residue seems to attach to my stoma. Not nice...as you all know. 

I avoid those things, or if I do eat them, I eat only a bit and tons of liquids along with them.

If I feel any build up there, I just kind of squish it down lower off the stoma and into the lower part of the bag. It did actually happen to me just yesterday, but since it was in the daytime and I was not sound asleep I was able to clear it. I wear a two piece bag, and by carefully removing the bag I can get at the pancake with toilet paper... kind of clean it all off. I had to do this several times during the afternoon. Then it was good all night.

The pants and skirts I wear with fold down tops aren't super tight. Get a size bigger maybe. They stay up, look O.K. and don't over compress that area.

Always something new to learn.

Thanks to all who share here.

p.s. I think the cause of  yesterday's problem  was some soup ( butternut squash, carrot, apple, and onion) that I made. I cook it up in vegetable stock and then blend it with an immersion blender. BUT I did not do  enough blending . I left a lot of apple peels and chunks which I think added to the problem. I strained it today and used the blender again. Looks better now!

Live and learn. LIVE being the main point.

Marcie, thank you very much for all your very helpful information and advice.  What your girlfriend suggested - cutting a seal ring in half and roll the halves ... - is very interesting and I will certainly try but I have a very high output and any hydrocolloids around my stoma melt and erode within a few hours.  I have been changing my pouch at least twice a day.

Shawne, thank you very much for your advice.  I have just made a request for the Salts convex pouch you suggested.  I also use one piece pouches.  So far, I have liked Dansac's nova 1 easifold soft convex the most and I am waiting for my B Braun's samples to arrive.

kiya

This rolling thing-makes a better convex for me. Floats my boat!! 

I think that the apple peals did it!!!!!!!!!! 

No, the butler did it.....

What r u using for a seal ring?  I found the ekin seals absorbed very well. I have a high out put-watery.. 

Hi Marcie,

Thank you for your messages.  I have tried all the seals that I found online and could obtain as free samples including the famous ekin ones.  I have very sensitive skin and I found ekin seals too powerful (too sticky) for my delicate skin (I had little bleeding when I removed my pouch, of course with my adhesives remover).  Of all the seals I have tried, coloplast brava protective seal is the only one that I found helpful - it sticks well yet it does not melt or erode easily; also it leaves almost no residues on the skin after I remove my pouch.   

Did you say you also use Nu Hope's system?  I could speak with Nu Hope's UK dealer today and he said that the belt for this system is very tight - it has to be tight as it works on pressure.  If you happen to be using it, is the belt really so tight and do you not feel uncomfortable?  I hate tight clothing ...

I hope you are well and happy.

kiya

Hi Hon, NU HOPE has a nice barrier-but the pouch is horrible all plastic and you will sweat with al that plastic so a pouch cover is needed.. Hate the pouch all the "deposits" go down into a ball shape.. They are a nice company to talk with tho-- You will want the mid-size.. 8--10 inches- not the 11 inches.. according to your size I see, and your loss of weight-- We have to empty at 1/3 full- so carrying a big ball of "deposits" We do empty much any way and why have a long pouch that balls up with "deposits" hanging there?? That is the size I use and I am 5'8" and rather thin.. I find there pouches are longer than the others.. Also, the end of the Velcro is hard-- hate that too.. But as I said, I do have a box of them for when I am in trouble as their wafer/barrier is southing.. Well, the best I can find for southing and healings.. 

           ALSO---------------------------------------------------     

When I sleep I don't wear undies just my night dress and my stupid pouch!!  I sleep on both sides and yes the stoma side.. S u can curl up and sleep..  I don't use belts much at all- I have a soft type of streach/cotton undies full cut now- (no thongs anymore) and this keeps pouching in place and can vent outward.. Good LUCK!!  Any thing else I can help with?  I too am with major weight loss.. Jeans? I get maturnity  (sp)jeans..  :-).. Best, M.

Marcie,

Thank you very very very much!  I couldn't have found all this information elsewhere!  I appreciate your kindness and patience that you spent your precious time and energy replying to my email.  Thank you very much again and all the best to you as well.

kiya

Not a problem on this end for me!!! That is what we are here for.. I hope I helped you a bit..  I know the early routine--Very slow-- But when you get it together, you will be a pro!!  Remember, your in the early stages now and healing can take a long road.. Just don't get yourself into a mess within mind.. soon it will be a normal thing to do.. Like I said before-your on this blog and that is 3/4 of the way-I didn't have this.. Your Friend Truly, Marcie.

Sounds like we are at an AA meeting.............. :-{