Lizzie, Alli, Hodaya?????

Hodya and Rosemary,   Now I can remember who had the blistering and ozzing around the stoma but my friend who has had one for 30 years...says to do:

FIRST CLEAN SPRAY ON HOLLISTER MEDICAL SPRAY, THEN TAKE THE STOMA ADSHESIVE POWDER GERNROUSLY THEN USE THE ME FIX TAPY ON THE SKIN AND APPLIANCES..HOPE THIS HELPS..

lESLIE

Hi Leslie, I wasn't the one, but the info will help those with this issue. Rosemary

my gosh, poor Lizzie.. i'm just too sad for that sweet girl. she's def lucky to have you around, Allie. you've been such a blessing to her. i want one day soon for all her problems to go away.

Rosemary,
oh my gosh, it would be so totally cool if we could meet, even for a short brief :))) so anyway to your question, if you ask what is the coolest time here, then it's Jan-Feb, but its usually too cold that time, rainy and stormy and all. i think the best time to come here is between March-May - that's the most pleasant period of time here and not too hot at all, still wearing jackets. but whenever you come, don't ever come during July-Aug - that time of year is disasterous.

my gosh, that was quite an ordeal with that coffee... i wish coffee would have affected me like this, but i did drink black coffee on several occasions and it just didn't do anything for me, so i don't know. since you asked, i looked and we do have gatorade drinks here, but why should i drink it? it's an athlets' drink, how can it help my constipation?

we do have the sweetners you mentioned. i eat about 8 sugarfree hard candies every day. they help a little.

anyway, i'm pretty down and don't do much these days. few last days i've been working on my appeal to social security, since they've denied my request. i have to go there tomorrow and hand it to them. then i wait a long time till they respond and summon me to another discussion of my case.

tomorrow i'm seeing the surgeon who did his training at CC. he's not the one who operated me, but i've consulted him few times before and he knows my case very well. he's really awesome, professional and knowlagable, and i really trust his opinion. so i'm gonna tell him about my ongoing constipation and pain i've been having and the amount of prune/pear juice i have to take to make things moving.

also will tell him about the problem of having lots of mucos and stools in my rectum and not being able to expel it like other ppl i know with loop ileos and the chances i can have a perm ileo some day... this nonfunctional rectum makes me really miserable. nothing will come out even if i wait 3 mons. i usually do an enema every 6 weeks or so. i should do it more often, but i so hate doing it, cuz it's not really working and lasts all day - every 1-2 hrs a tiny bit comes out, and in between all that day i feel so uncomfortable and miserable. it's just too exhausting doing it.

Allie, i hope you can find a surgeon that agrees to do you an end ileo. loop ileos are so much grief :((

Rosemary, we all know that CT do not always show all that is really going on in our bodies and a lot of times things are found out only during an opporation. you know what causes you trouble and stay away from it. but just the fact you can't eat much solid foods is a proof that something is up causing this. but yeah, what can we do about it? i mean if the surgeon i see tomorrow sends me to a CT and doubtfully it will show ALL that's really going on in there, so even if it does show narrowings, do i really want to go through another surgery..??? or maybe i should keep managing the way i am now..??? really don't know.

and Rosemary, i just can't wait for the day when i hear that you finally won your case!!!!! and keep healthy, so you can come visit me often, heh? lol

sweet Leslie, i think you got me mixed with someone else.

Hodaya   gatorade has electrolites...

Leslie

thanks Rosemary and Leslie! maybe i'll try it, but i asked a natural nutritionist, you know one that deals with only organic foods etc, and he doesn't like the idea of gator ade. he didn't mention why, just said better to avoid stuff like that. i'm gonna have to ask him to be more specific. but anyway, over all i'm not fanatic about eating organic etc, i'm far from that and eat lots of foods that are not good in their opinion, like mayo, so even if he sais its not good, i still may try it.

Rosemary, from what i know, in loop ileos there is a way for the stools to pass to the lower loop. it happens all the time with j pouchers - all j pouchers with loop ileos have bms through their anus all the time. i've spoken with quite a few and they all say it's not just mucos but real stools. i have a friend who had crohns and now have a loop ileo and a j pouch (before surgery they thought it's UC, only after they now realize it's crohns - someone with crohns cant have a j pouch, but too late now for the poor girl, damage is already done - pouch not working + she has a severe nerve damage and now has to live with horrible chronic pain) so anyway she goes 6xday to the b/r.... for me, last time i waited 2 mons between enemas and nothing came out on it's own. i'm certain that even if i wait 6 mons nothing will come out from my anus. i just feel extreme pressure and that it really needs to come out, but nothing happens.

it's aweful cuz the pressure causes me real bad pain in my whole pelvic area, kind of pain that wakes me up at night. enemas barely help. i mean they do give me relief but the day i do an enema im bound to the toilet all day, cuz it's just a tiny bit every 1-2 hrs... just exhausting. and even when i'm done, still not all of it is out. and i'm supposed to do this once a week :( i can't be neutralized from the world like that every 6 days for a whole day, it's not a way to live.

oct-nov are too warm, much warmer and also much more humid than march-april-may. trust me, the best whether here is only on march-april-may.

Hoddaya,

Have you tried taking pure highly concentrated vitamine C. It usually causes diarrhea in normal people but it helps me some with the transit. However, it must be a special pure Form of it, if you were interested I could look up the name of the product. You can order it, it comes from the Netherlands, so i also have to order it via internet.
Furthermore I think your loop ileo should be examined. If stools accumulate in the short disconnected small bowel the distension of the loop can cause a mechanical obstruction by Kompression of the adjactent small bowel loops. Where is our pain mainl located? At the level of your stoma?

Rosemary and Sarah,

my pain is really really low in the pelvic - as low as it can be and also in my lower abdomen. it's not neer the stoma at all. i think it's accumulation of stools and after accumulating for like 1-2 mons it's so compressed that it hurts. that's what i think.

Sarah, i havn't tried vit C. maybe i should, but if so, then maybe i should try the same one you're taking exactly. i'd love it if you can give me the name of it. def will not hurt to try.

2b ColonFree
  They usually dont like gatorade because of the sugars in it...hope all is well..

Leslie