Re: Long time no post! back to Deb

[Guest guest]

Hi Angie,

I saw your post and wanted to talk with you. I am new to the support

group.

I use Miralax and fiber with very low fat diet. I have cut out all

diary and it helped a lot.

I have never seen anyone post about having bowel problems but I have

had them a lot and I used Zantac with causes pancreatitis in a few

people. I looked it up in my PDR since I am an RN. I am on Pepcid 20

mg. twice a day and it is SO much better.

I just thought that you would like to know that Pepcid has much less

side effects and it is not causing pancreatitis for me and it is NOT

listed as causing it in my PDR.

My best to you,

Susie

>

> Deb,

> I take protonix for the acid reflux stuff. I actually don't have

acid reflux

> but I my doc recommended it to help with digestion.

> What is a hyperal? Is that the acid reducer? Or nutrition through

a pump? I

> haven't heard that term.

> My distention is much better after my doc put me on miralax. I

can have a

> bowel movement regularly now and that helps a bunch.

> When I go on liquids, I don't use just clear liquids. I use

protein shakes

> and/or slimfast. I also can eat some protein bars that won't

bother me. Having

> had gastric bypass surgery I need to get more protein. That is

really

> difficult because meat kills me to eat it. My amalase doesn't go

up but my lipase has

> been staying around 500.

> Today has been a horrible day and I know I will probably end up

seeing my

> pain doc or the er tomorrow or the next day.

> Take care,

> Angie in SC

>

>

> " The happiest of people don't necessarily have the

> best of everything; they just make the best of everything that

comes along

> their way. "

>

>

>

>

[Guest guest]

Angie, Thanks, does the sugar bother you? How long do you stay on the

liquids? How often do you have to do this, couple times per month? It

seems I am in pain all the time. I can't take anything for pain because

of the megacolon. It seems like the more sugar the worse my pain is.

You would think I would learn. The hypers are the IV source of nutrition

through a central line in your heart. Please keep in touch. Deb

[Guest guest]

Susie,

Thanks for the info. I don't use pepcid or zantac though. I use protonix. I

use the mirlax for constipation. Alot of us get constipation because of the

pain meds we take and of course, cp can cause it also.

I am glad you have jined the group. It is a great group of people.

Take care,

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

Angie, Do you notice, or have you heard by others that the sugar

alcohols in the sf candies cause a lot of gas? I am trying to get off

the hard candy sugar ones and have tried the sugar free and I think I

can't break down the sugar alcohol. And also is the sugar alcohol

contraindicated for the CP? I don't understand why all of a sudden I

have much more pain than I did a year and 1/2 ago when the CP started

with the CF. I have had pain but nothing like lately. Right and left

side in the back. Bra line and flank area. It does not always stay all

the time but is pretty persistent. I can't take pain meds because of the

megacolon. Any suggestions. I am suffering here. I am still eating

pureed foods and maybe I should be on liquids for awhile. The bloating

and distention is absolutely terrible. I had to go out and buy all new

clothes with elastic. The indigestion is beyond belief. Heartburn is

incredible. I take the zantac, simethecone, zelnorm, and the creon. I

can't take to many enzymes because of the megacolon. It will cause an

obstruction. Anxious, nervous, and depressed. I know there is a way out

of this. I just have to keep searching. Deb

[Guest guest]

Deb,

That sounds horrible! I am so sorry for all you are going through. I don't

find that the sugar free foods give me more gas. I use the ones with splenda

mainly. The aspartame gives me headaches if I use too much of it. I eat foods

with sugars in them in moderation and as long as they don't have more than 18

grams of carbs I can tolerate them pretty well. I also try to find things that

have some protein in them along with the sugar. Especially for my snacks. We

have these bars in my local market that are peanut butter granola bars. They are

low in fat and sugars but are really tasty. They help when my sugar is low

and they don't bother my pancreas nor do they bring my sugars up too quickly.

What is the mega colon exactly? Is that an enlarged colon? It's bad enough

having the pancreas problems without having to deal with all of that.

Take care,

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

Deb,

Wow that sounds awful! As if the cp weren't enough to have that to deal with

too! The cp causes so many intestinal problems alone, to have that

complication also must be awful! I also eat sugar candies. I need them to keep

my sugar

up. I have diabetes and hypoglycemia since my pancreas is so wishy-washy right

now. When will they do the ileostomy?

Angie in SC

" The happiest of people don't necessarily have the

best of everything; they just make the best of everything that comes along

their way. "

[Guest guest]

Angie, A megacolon is the worse. It is a non functioning intestine

basically. It becomes so enlarged at times I can hardly get any of my

clothes on. They want to put an ileostomy in. That is a pouch for the

intestines. I just wish I could find a way to have enough will power to

get off these sugar candies. It is sinful how many I eat. Hope you are

doing well. Please write back. Deb

[Guest guest]

Angie, Well, that is the thing, one GI wants it done and the other do

not. Since I went back on the zantac it is better. I just have to find

the way to get back my will power to get away from the sugar. Any

suggestions? Please keep in touch. Deb