RE: gastro problems..Any ideas?

[Guest guest]

Ok I can't believe I found another Jonah. I loved the biblical name. It is

such an unusual and uncommon name. It drives me nuts when people can't

pronounce it though. My Jonah has been called -ah, Joann, Joan, you name

it. By the way, my Jonah has CF too.

Peggy - mom of Jonah and 2yrs twins with cf who go to clinic tomorrow

and we're praying for an excellent check up and that we are finaly big enough

for the vest.

[Guest guest]

Michele,

I too spell Michele w/one l Dana Michele,

One thought , Cipro bothers 's stomach. That may be something

to discuss with your DR about. Why do you have to wait 20 days to

try another antibiotic? We have switched miduse to try something

else. Sorry I can't be of more help.

Dana, 11 w/CF & G-tube

> Hi. My 2 1/2 year old son with CF has had continual

> gastro problems since birth. He is on Pancrease MT 10

> regularly along with Myralax powder for, " Back Up, "

> problems. He has had 3 clean outs by NG in the past

> year. Although his weight has been fair, his height

> has been 0-5%. His stomach is continually extended. He

> looks like a little piglet from winnie the pooh! He

> eats well. My problem is that he continually complains

> of tummy aches. I have told the gastro doc. He had a

> belly scan and is not backed up. He is still extended

> though. The doctor was going to try Flagil?? but Jonah

> had a reaction of vommitting since he is also on sipro

> for reoccurring sinus probs. Can anyone tell me more

> about CF gastro problems? Is this typical? Could it be

> something else? Sometimes I get so frustrated with

> doctors! Now we have to wait 20 more days until he is

> off the cipro to try the other antibiotic(Flagil?).

> Meanwhile.....?????

>

> Thanks,

> Michele mom of 3 Jonah with CF

>

> __________________________________________________

>

[Guest guest]

Hi Michele, I can tell you that many, many CF patients have gastro problems.

My problem is, I don't know what to tell you to make it better. Shantell's

had so many stomach aches, and she lays in pain screaming it hurts so bad.

Of the three times she's been hospitalized, two have been for gastro

blockages. She's had many more than that, it just was so severe the last

couple of times. They do horrible enemmas and procedures I don't even want

to go in to, to get them unblocked. She's OK now, but doctors have taken

her off of all vegetables, all fruit, all seafood, all red meat, all

fiber...yeah, what the heck does she eat, right? Well, we juice her

vegetables and fruit and avoid seeds. She's been OK lately, but I know it's

a matter of time. She did have meconium illeus at birth, did your little

one? I'm searching now for a nutritionist, dietician with CF knowledge, not

having much luck either. Also, I've placed a call to her surgeon who did

her surgery at birth (19 years ago) and he's going to take a look at her

Xrays. Doctors keep telling us that her blockage is from scar tissue (they

think), but I'm not totally convinced of that and will wait until he looks

at them. So, all in all, I'm not much use to you at all because I don't

have any answers. We've tried everything, too. Our doctor did order her

Pancrecarb which is supposed to reduce the acidity in the stomach and the

helps replace bicarbonate. We haven't tried it yet, right now she's on

Pancrease MT-16's. So, if you do find any input on this to share, please do

let us all know. I appreciate it.

, mom of Shantell 19yr wcf

gastro problems..Any ideas?

Hi. My 2 1/2 year old son with CF has had continual

gastro problems since birth. He is on Pancrease MT 10

regularly along with Myralax powder for, " Back Up, "

problems. He has had 3 clean outs by NG in the past

year. Although his weight has been fair, his height

has been 0-5%. His stomach is continually extended. He

looks like a little piglet from winnie the pooh! He

eats well. My problem is that he continually complains

of tummy aches. I have told the gastro doc. He had a

belly scan and is not backed up. He is still extended

though. The doctor was going to try Flagil?? but Jonah

had a reaction of vommitting since he is also on sipro

for reoccurring sinus probs. Can anyone tell me more

about CF gastro problems? Is this typical? Could it be

something else? Sometimes I get so frustrated with

doctors! Now we have to wait 20 more days until he is

off the cipro to try the other antibiotic(Flagil?).

Meanwhile.....?????

Thanks,

Michele mom of 3 Jonah with CF

__________________________________________________

[Guest guest]

GET THE PANCRECARB soon.It will most likely give her some relief.Even if

they need to do more ...it will give some relief, I am told. try it, It wont

make her worse .Bless her heart. It is so bad to have the tummy off kilter.

BEST WISHES,

love & hugs to you both!!

GrandmomBEV

gastro problems..Any ideas?

Hi. My 2 1/2 year old son with CF has had continual

gastro problems since birth. He is on Pancrease MT 10

regularly along with Myralax powder for, " Back Up, "

problems. He has had 3 clean outs by NG in the past

year. Although his weight has been fair, his height

has been 0-5%. His stomach is continually extended. He

looks like a little piglet from winnie the pooh! He

eats well. My problem is that he continually complains

of tummy aches. I have told the gastro doc. He had a

belly scan and is not backed up. He is still extended

though. The doctor was going to try Flagil?? but Jonah

had a reaction of vommitting since he is also on sipro

for reoccurring sinus probs. Can anyone tell me more

about CF gastro problems? Is this typical? Could it be

something else? Sometimes I get so frustrated with

doctors! Now we have to wait 20 more days until he is

off the cipro to try the other antibiotic(Flagil?).

Meanwhile.....?????

Thanks,

Michele mom of 3 Jonah with CF

__________________________________________________

[Guest guest]

Thanks for the info. Actually Jonah did not have a

miconium illius at birth, although it took him over 24

hours to pass his first stool and it was much

different than my other kids. Docs now say it was

probably a form of blockage. I'm still not sure.

Anyway, It scares me to think that he can be in a lot

of pain and has just started talking! The gastro

nurse was saying for a while that his complaints were

a Behavioral issue...attention. I really don't think

so since he doesn't really get a reaction since it's a

constant problem. He has bigger and better behaviors

at two years old! Does your daughter have an extended

stomach?

--- .Fox@... wrote:

> Hi Michele, I can tell you that many, many CF

> patients have gastro problems.

> My problem is, I don't know what to tell you to make

> it better. Shantell's

> had so many stomach aches, and she lays in pain

> screaming it hurts so bad.

> Of the three times she's been hospitalized, two have

> been for gastro

> blockages. She's had many more than that, it just

> was so severe the last

> couple of times. They do horrible enemmas and

> procedures I don't even want

> to go in to, to get them unblocked. She's OK now,

> but doctors have taken

> her off of all vegetables, all fruit, all seafood,

> all red meat, all

> fiber...yeah, what the heck does she eat, right?

> Well, we juice her

> vegetables and fruit and avoid seeds. She's been OK

> lately, but I know it's

> a matter of time. She did have meconium illeus at

> birth, did your little

> one? I'm searching now for a nutritionist,

> dietician with CF knowledge, not

> having much luck either. Also, I've placed a call

> to her surgeon who did

> her surgery at birth (19 years ago) and he's going

> to take a look at her

> Xrays. Doctors keep telling us that her blockage is

> from scar tissue (they

> think), but I'm not totally convinced of that and

> will wait until he looks

> at them. So, all in all, I'm not much use to you at

> all because I don't

> have any answers. We've tried everything, too. Our

> doctor did order her

> Pancrecarb which is supposed to reduce the acidity

> in the stomach and the

> helps replace bicarbonate. We haven't tried it yet,

> right now she's on

> Pancrease MT-16's. So, if you do find any input on

> this to share, please do

> let us all know. I appreciate it.

> , mom of Shantell 19yr wcf

>

> gastro problems..Any ideas?

>

>

> Hi. My 2 1/2 year old son with CF has had continual

> gastro problems since birth. He is on Pancrease MT

> 10

> regularly along with Myralax powder for, " Back Up, "

> problems. He has had 3 clean outs by NG in the past

> year. Although his weight has been fair, his height

> has been 0-5%. His stomach is continually extended.

> He

> looks like a little piglet from winnie the pooh! He

> eats well. My problem is that he continually

> complains

> of tummy aches. I have told the gastro doc. He had a

> belly scan and is not backed up. He is still

> extended

> though. The doctor was going to try Flagil?? but

> Jonah

> had a reaction of vommitting since he is also on

> sipro

> for reoccurring sinus probs. Can anyone tell me more

> about CF gastro problems? Is this typical? Could it

> be

> something else? Sometimes I get so frustrated with

> doctors! Now we have to wait 20 more days until he

> is

> off the cipro to try the other antibiotic(Flagil?).

> Meanwhile.....?????

>

> Thanks,

> Michele mom of 3 Jonah with CF

>

> __________________________________________________

>

[Guest guest]

Is the Pancracarb by prescription? What does it do?

--- bev wrote:

> GET THE PANCRECARB soon.It will most likely give her

> some relief.Even if

> they need to do more ...it will give some relief, I

> am told. try it, It wont

> make her worse .Bless her heart. It is so bad to

> have the tummy off kilter.

>

> BEST WISHES,

> love & hugs to you both!!

>

> GrandmomBEV

>

> gastro problems..Any ideas?

>

>

> Hi. My 2 1/2 year old son with CF has had continual

> gastro problems since birth. He is on Pancrease MT

> 10

> regularly along with Myralax powder for, " Back Up, "

> problems. He has had 3 clean outs by NG in the past

> year. Although his weight has been fair, his height

> has been 0-5%. His stomach is continually extended.

> He

> looks like a little piglet from winnie the pooh! He

> eats well. My problem is that he continually

> complains

> of tummy aches. I have told the gastro doc. He had a

> belly scan and is not backed up. He is still

> extended

> though. The doctor was going to try Flagil?? but

> Jonah

> had a reaction of vommitting since he is also on

> sipro

> for reoccurring sinus probs. Can anyone tell me more

> about CF gastro problems? Is this typical? Could it

> be

> something else? Sometimes I get so frustrated with

> doctors! Now we have to wait 20 more days until he

> is

> off the cipro to try the other antibiotic(Flagil?).

> Meanwhile.....?????

>

> Thanks,

> Michele mom of 3 Jonah with CF

>

> __________________________________________________

>

[Guest guest]

michele,

stomach problems go along with cf, since there is poor digestion, the gases

etc.....

feed him less gassy foods. he should be on something like zantac to

releive the gas.

brandon always had stomach problems until the pancreacarb mt20(enzyme) and

they stopped , don't know if they had anything to do with it or if it was

food, and such.

he is 12 1/2 yrs old.

not many problems now, well except his lungs.

chris

brandon 12 yrs w cf

mom of 3

On Wed, 11 Apr 2001 15:18:38 -0700 (PDT), cfparents wrote:

> Hi. My 2 1/2 year old son with CF has had continual

> gastro problems since birth. He is on Pancrease MT 10

> regularly along with Myralax powder for, " Back Up, "

> problems. He has had 3 clean outs by NG in the past

> year. Although his weight has been fair, his height

> has been 0-5%. His stomach is continually extended. He

> looks like a little piglet from winnie the pooh! He

> eats well. My problem is that he continually complains

> of tummy aches. I have told the gastro doc. He had a

> belly scan and is not backed up. He is still extended

> though. The doctor was going to try Flagil?? but Jonah

> had a reaction of vommitting since he is also on sipro

> for reoccurring sinus probs. Can anyone tell me more

> about CF gastro problems? Is this typical? Could it be

> something else? Sometimes I get so frustrated with

> doctors! Now we have to wait 20 more days until he is

> off the cipro to try the other antibiotic(Flagil?).

> Meanwhile.....?????

>

> Thanks,

> Michele mom of 3 Jonah with CF

>

> __________________________________________________

>

[Guest guest]

YES, it is another enzyme.developed for the problems you and many others

with Cf have told about and also here on this list.

Best wishes. I am sure your doc will write the Rx .Also,i info to him/you

also.

LOVE & HUGS, GRANDMOMBEV

gastro problems..Any ideas?

>

>

> Hi. My 2 1/2 year old son with CF has had continual

> gastro problems since birth. He is on Pancrease MT

> 10

> regularly along with Myralax powder for, " Back Up, "

> problems. He has had 3 clean outs by NG in the past

> year. Although his weight has been fair, his height

> has been 0-5%. His stomach is continually extended.

> He

> looks like a little piglet from winnie the pooh! He

> eats well. My problem is that he continually

> complains

> of tummy aches. I have told the gastro doc. He had a

> belly scan and is not backed up. He is still

> extended

> though. The doctor was going to try Flagil?? but

> Jonah

> had a reaction of vommitting since he is also on

> sipro

> for reoccurring sinus probs. Can anyone tell me more

> about CF gastro problems? Is this typical? Could it

> be

> something else? Sometimes I get so frustrated with

> doctors! Now we have to wait 20 more days until he

> is

> off the cipro to try the other antibiotic(Flagil?).

> Meanwhile.....?????

>

> Thanks,

> Michele mom of 3 Jonah with CF

>

> __________________________________________________

>

[Guest guest]

PRAYERS for your vests and great check-up too

LOVE & HUGS, GrandmomBEV

Re: gastro problems..Any ideas?

Ok I can't believe I found another Jonah. I loved the biblical name. It is

such an unusual and uncommon name. It drives me nuts when people can't

pronounce it though. My Jonah has been called -ah, Joann, Joan, you

name

it. By the way, my Jonah has CF too.

Peggy - mom of Jonah and 2yrs twins with cf who go to clinic tomorrow

and we're praying for an excellent check up and that we are finaly big

enough

for the vest.

PLEASE do not post religious emails to the list.

-------------------------------------------

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

--------------------------------------------------

[Guest guest]

The pancreacarb help lower the amount of acid in the stomach which can help

the pills disolve later in the digestive system.It also helps with reflux,

the contents of the stomach are less acidic so less irritating to the the

throat.BeckyB.

[Guest guest]

Hi Michele,

although Fiona has the same bloated belly and lots of gas, she has

never had real stomach pains (and her pain tolerance is ZERO).

One reason might be, that Fiona has put herself on the very same diet

that Shantell's doc has recommended, namely NO fruits, NO veggies,

almost no meat and little fibre.

But then she drinks one pint of herbal infusion every day, made of

equal amounts of seeds from anise, fennel, caraway and coriander. I am

convinced it helps her digestion.

Does Jonah drink enough? We see that Fiona's stools become firmer,

when she drinks less.

Hope you'll figure something out. BTW, if we had a boy, it would have

been either a Jonah or a . Love that name!

Bye

Torsten

[Guest guest]

We were having the same gas trouble with Patti. It didn't seem to matter

how much we increased her enzymes, she was still bloated and screaming. I

finally convinced the dietician and dr. to let me try a lactose free formula

instead of the pregestimil and she hasn't had any problems since. Even the

distended belly resolved. Talk to your dietician and see if there is a

feesable way to either remove lactose from his diet or see if the dr. will

let him take a medicine for lactose intolerant people with out it

interfering with his other meds.

Dawn

mom to four 5 years and under the youngest with cf

gastro problems..Any ideas?

> Hi. My 2 1/2 year old son with CF has had continual

> gastro problems since birth. He is on Pancrease MT 10

> regularly along with Myralax powder for, " Back Up, "

> problems. He has had 3 clean outs by NG in the past

> year. Although his weight has been fair, his height

> has been 0-5%. His stomach is continually extended. He

> looks like a little piglet from winnie the pooh! He

> eats well. My problem is that he continually complains

> of tummy aches. I have told the gastro doc. He had a

> belly scan and is not backed up. He is still extended

> though. The doctor was going to try Flagil?? but Jonah

> had a reaction of vommitting since he is also on sipro

> for reoccurring sinus probs. Can anyone tell me more

> about CF gastro problems? Is this typical? Could it be

> something else? Sometimes I get so frustrated with

> doctors! Now we have to wait 20 more days until he is

> off the cipro to try the other antibiotic(Flagil?).

> Meanwhile.....?????

>

> Thanks,

> Michele mom of 3 Jonah with CF

>

> __________________________________________________

>

[Guest guest]

Yes, Michele, she does have a distended stomach. However, she is a 19yr old

girl and concerned about her body so she does more abdominal exercises than

a whole classroom of aerobic instructors! She does them all the time at

home. I was reading through some old charts of hers last night and came

across some info about her surgery and a note from the surgeon. He

suggested she would need additional B12 and B6 due to what they had taken

out of her bowels. I recently read from another CFr with irritated GI that

a nutritionist placed them on B6 to slow down the gut. Also mentioned

putting MCT oil in their food. Shantell started Pancrecarb yesterday, yeah!

You can find their website on the internet or email me at home tonight and I

will forward Bfoxgray@.... I have heard really good things about

this. I doubt seriously that your little guy is faking complaints about his

tummy aches. The gastro tummy aches are extremely painful!! I've had my

galbladder removed and in comparision of my attacks to my daughters, hers

were way worse! She takes a lot of pain, too, but I was afraid she was

dying. When she was born with meconium, a 12hour old baby, she was in such

pain that she laid there grunting with tears rolling out of her eyes, it was

too painful for her to cry because her lungs were being crushed by her

distended abdomen. I hate to be that descriptive, but I want you to know so

you can tell those nurses to go jump in a lake!

, mom of Shantell 19yr wcf

gastro problems..Any ideas?

>

>

> Hi. My 2 1/2 year old son with CF has had continual

> gastro problems since birth. He is on Pancrease MT

> 10

> regularly along with Myralax powder for, " Back Up, "

> problems. He has had 3 clean outs by NG in the past

> year. Although his weight has been fair, his height

> has been 0-5%. His stomach is continually extended.

> He

> looks like a little piglet from winnie the pooh! He

> eats well. My problem is that he continually

> complains

> of tummy aches. I have told the gastro doc. He had a

> belly scan and is not backed up. He is still

> extended

> though. The doctor was going to try Flagil?? but

> Jonah

> had a reaction of vommitting since he is also on

> sipro

> for reoccurring sinus probs. Can anyone tell me more

> about CF gastro problems? Is this typical? Could it

> be

> something else? Sometimes I get so frustrated with

> doctors! Now we have to wait 20 more days until he

> is

> off the cipro to try the other antibiotic(Flagil?).

> Meanwhile.....?????

>

> Thanks,

> Michele mom of 3 Jonah with CF

>

> __________________________________________________

>

[Guest guest]

Just a side note here, make sure if you take your child off of these foods

that they get the supplements from something. Kids with CF have low

absorption of vitamins K (very important for blood!), vitamin E (water

soluable) and B's for the gut. Also, Shantell gets her vegies and fruits

still, but through a juicer! She drinks them. Really quite gross when she

mixes the fruit with the vegies! She eats a lot of fish and chicken (white

meat only) for the protein. I think, like Fiona, she takes a lot of herbal

stuff that she just doesn't tell me about. She eats no fat because it makes

her tummy hurt. Fiber really hurts the digestive tract too. She does eat

Cheerios with enough of preprocessed fiber in them. The Cheerios are great

little snacks for kids, just put them in a baggie and hand out anytime. No

mayonnaise, no oils, no milk. She drinks a ton of water, about 1 to 1 1/2

gallons a day. Remember we are in Arizona and it's nearly 100degrees

already. However, I have started her on MCT oil which is good for digestion

in CF. I'll keep you posted on the Pancrecarb. Hope this helps somewhat,

, mom of Shantell 19yr wcf

Re: gastro problems..Any ideas?

Hi Michele,

although Fiona has the same bloated belly and lots of gas, she has

never had real stomach pains (and her pain tolerance is ZERO).

One reason might be, that Fiona has put herself on the very same diet

that Shantell's doc has recommended, namely NO fruits, NO veggies,

almost no meat and little fibre.

But then she drinks one pint of herbal infusion every day, made of

equal amounts of seeds from anise, fennel, caraway and coriander. I am

convinced it helps her digestion.

Does Jonah drink enough? We see that Fiona's stools become firmer,

when she drinks less.

Hope you'll figure something out. BTW, if we had a boy, it would have

been either a Jonah or a . Love that name!

Bye

Torsten

PLEASE do not post religious emails to the list.

-------------------------------------------

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

--------------------------------------------------

[Guest guest]

Hi

My son Josh had belly problems until they put him on reglan and zantac 2x's

per day. We love the reglan and zantac he is so much better. Hope this

helps. This didn't happen until we changed cf centers due to a move.

Good luck,

mom to Josh 7 wcf and samuel 2 nocf

[Guest guest]

sOUNDS GREAT. pERHAPS IF THEY WOULD TRY HIM ON pancrearb , HE WOULDNT NEED

THE zANTAC TO SETTLE THE TUMMY.IT (BICARB) IS BUILT INTO THE ENZYME. aSK

THE DOC................ONE MORE MED not TO HAVE TO TAKE:) HAPPY HOLIDAYS

TO YOU ALL .

love & hugs, GRANDMOMBEV

Re: gastro problems..Any ideas?

Hi

My son Josh had belly problems until they put him on reglan and zantac 2x's

per day. We love the reglan and zantac he is so much better. Hope this

helps. This didn't happen until we changed cf centers due to a move.

Good luck,

mom to Josh 7 wcf and samuel 2 nocf

[Guest guest]

Bless his heart. Patti used to do that continually. We also called it

exploding. Keep after those dr.s even if it makes them think your one of

those " crazy mothers " that they talk about as they roll their eyes. :-)

It is not acceptable for them to ignore it and they will unless you harp on

it.

By they way the good stuff in yogurt is acidophellis (sp?) as I'm sure you

know. What you may not know is that many health food stores carry it in

powdered form in little gelitian capsules. My dad takes these as he is

lactose intolerant and cannot have yogurt.

Dawn

gastro problems..Any ideas?

> > >

> > >

> > > Hi. My 2 1/2 year old son with CF has had

> > continual

> > > gastro problems since birth. He is on Pancrease MT

> > > 10

> > > regularly along with Myralax powder for, " Back

> > Up, "

> > > problems. He has had 3 clean outs by NG in the

> > past

> > > year. Although his weight has been fair, his

> > height

> > > has been 0-5%. His stomach is continually

> > extended.

> > > He

> > > looks like a little piglet from winnie the pooh!

> > He

> > > eats well. My problem is that he continually

> > > complains

> > > of tummy aches. I have told the gastro doc. He had

> > a

> > > belly scan and is not backed up. He is still

> > > extended

> > > though. The doctor was going to try Flagil?? but

> > > Jonah

> > > had a reaction of vommitting since he is also on

> > > sipro

> > > for reoccurring sinus probs. Can anyone tell me

> > more

> > > about CF gastro problems? Is this typical? Could

> > it

> > > be

> > > something else? Sometimes I get so frustrated with

> > > doctors! Now we have to wait 20 more days until he

> > > is

> > > off the cipro to try the other

> > antibiotic(Flagil?).

> > > Meanwhile.....?????

> > >

> > > Thanks,

> > > Michele mom of 3 Jonah with CF

> > >

> > > __________________________________________________

> > >

[Guest guest]

Thanks so much for the info. I get so discouraged with

constantly arguing with medical personnel! Yesterday I

took Jonah to the store to buy some clothes. In the

middle of the store Jonah exploded! Poop everywhere!

Down his leg, all over his shoes, all over the rug,

trailed down the floors all of the way to the

bathroom! The poor child was so scared. " I Scared, "

was all he could say. My 5 and 4 year old were just so

shocked. It was a complete mess. This can not be

normal!!!! Anyway, I took him home(after cleaning up

and apologizing unbelievably) and his stomach was

still extended! He's still saying his tummy hurts!

UUHHGGG!!

--- .Fox@... wrote:

> Yes, Michele, she does have a distended stomach.

> However, she is a 19yr old

> girl and concerned about her body so she does more

> abdominal exercises than

> a whole classroom of aerobic instructors! She does

> them all the time at

> home. I was reading through some old charts of hers

> last night and came

> across some info about her surgery and a note from

> the surgeon. He

> suggested she would need additional B12 and B6 due

> to what they had taken

> out of her bowels. I recently read from another CFr

> with irritated GI that

> a nutritionist placed them on B6 to slow down the

> gut. Also mentioned

> putting MCT oil in their food. Shantell started

> Pancrecarb yesterday, yeah!

> You can find their website on the internet or email

> me at home tonight and I

> will forward Bfoxgray@.... I have heard

> really good things about

> this. I doubt seriously that your little guy is

> faking complaints about his

> tummy aches. The gastro tummy aches are extremely

> painful!! I've had my

> galbladder removed and in comparision of my attacks

> to my daughters, hers

> were way worse! She takes a lot of pain, too, but I

> was afraid she was

> dying. When she was born with meconium, a 12hour

> old baby, she was in such

> pain that she laid there grunting with tears rolling

> out of her eyes, it was

> too painful for her to cry because her lungs were

> being crushed by her

> distended abdomen. I hate to be that descriptive,

> but I want you to know so

> you can tell those nurses to go jump in a lake!

> , mom of Shantell 19yr wcf

>

> gastro problems..Any ideas?

> >

> >

> > Hi. My 2 1/2 year old son with CF has had

> continual

> > gastro problems since birth. He is on Pancrease MT

> > 10

> > regularly along with Myralax powder for, " Back

> Up, "

> > problems. He has had 3 clean outs by NG in the

> past

> > year. Although his weight has been fair, his

> height

> > has been 0-5%. His stomach is continually

> extended.

> > He

> > looks like a little piglet from winnie the pooh!

> He

> > eats well. My problem is that he continually

> > complains

> > of tummy aches. I have told the gastro doc. He had

> a

> > belly scan and is not backed up. He is still

> > extended

> > though. The doctor was going to try Flagil?? but

> > Jonah

> > had a reaction of vommitting since he is also on

> > sipro

> > for reoccurring sinus probs. Can anyone tell me

> more

> > about CF gastro problems? Is this typical? Could

> it

> > be

> > something else? Sometimes I get so frustrated with

> > doctors! Now we have to wait 20 more days until he

> > is

> > off the cipro to try the other

> antibiotic(Flagil?).

> > Meanwhile.....?????

> >

> > Thanks,

> > Michele mom of 3 Jonah with CF

> >

> > __________________________________________________

> >

[Guest guest]

Is poop exploding through the diaper something that is common in children

with CF? I know that their poops are usually sticky, yellow and smelly

but a person in another group told me that children with CFs do not

usually have poop that resembles diarrhea. My older daughter who tested

negative on her sweat cloride test (around 10) has had the worst poops

since the day she was born. She consistently pooped through her diaper

when she was less than a year old. I would say until the age of one she

had at least one blow out a day, usually more. Her daycare at the time,

even had a talk with me about it because she pooped through on to their

exersaucer and all I could say was that I can't do anything about it

unless you want me to stop bringing her to their daycare. She is two and

a half now and she still has blowouts but is pooping in the pottie half

the time so I only have to deal with them occasionally (two blowouts in

the last two days). Her poop is always runny. I describe it as having

diarrhea everyday. I think her poop was solid once, maybe twice. It is

not yellow and I have seem to recall seeing mucus but I associated it

with her having a cold at the time. Her poops occasionally float. She

doesn't drink fruit juice and on the advice of our physician, we tried a

test of a week with no milk and a week without fruit. Neither one had

any affect. I thought she may have celiac disease but I have no idea

what their poops are really like.

Emma, my younger daughter who definately has CF, has a check-up next week

and I am going to ask them at that time for Isabelle (my older daughter)

to be DNA tested. She has been on enzymes since the age of two weeks so

hers our sticky but definately not runny. As a result, it's hard for me

to compare. I was just curious if this sounded like CF to any other

parents. I asked this on Cystic-L already and they definately encouraged

me to have her tested but I just feel like I need another sanity check.

I worry about this a lot especially when she has problems like the last

two days.

Thanks for you time,

Law - mother of Emma 9 months w/CF and Isabelle 2 1/2 years wo/CF?

On Fri, 13 Apr 2001 07:25:07 -0500 " johndawn " writes:

> Bless his heart. Patti used to do that continually. We also called

> it

> exploding. Keep after those dr.s even if it makes them think your

> one of

> those " crazy mothers " that they talk about as they roll their eyes.

> :-)

> It is not acceptable for them to ignore it and they will unless you

> harp on

> it.

>

> By they way the good stuff in yogurt is acidophellis (sp?) as I'm

> sure you

> know. What you may not know is that many health food stores carry

> it in

> powdered form in little gelitian capsules. My dad takes these as he

> is

> lactose intolerant and cannot have yogurt.

>

> Dawn

> gastro problems..Any ideas?

> > > >

> > > >

> > > > Hi. My 2 1/2 year old son with CF has had

> > > continual

> > > > gastro problems since birth. He is on Pancrease MT

> > > > 10

> > > > regularly along with Myralax powder for, " Back

> > > Up, "

> > > > problems. He has had 3 clean outs by NG in the

> > > past

> > > > year. Although his weight has been fair, his

> > > height

> > > > has been 0-5%. His stomach is continually

> > > extended.

> > > > He

> > > > looks like a little piglet from winnie the pooh!

> > > He

> > > > eats well. My problem is that he continually

> > > > complains

> > > > of tummy aches. I have told the gastro doc. He had

> > > a

> > > > belly scan and is not backed up. He is still

> > > > extended

> > > > though. The doctor was going to try Flagil?? but

> > > > Jonah

> > > > had a reaction of vommitting since he is also on

> > > > sipro

> > > > for reoccurring sinus probs. Can anyone tell me

> > > more

> > > > about CF gastro problems? Is this typical? Could

> > > it

> > > > be

> > > > something else? Sometimes I get so frustrated with

> > > > doctors! Now we have to wait 20 more days until he

> > > > is

> > > > off the cipro to try the other

> > > antibiotic(Flagil?).

> > > > Meanwhile.....?????

> > > >

> > > > Thanks,

> > > > Michele mom of 3 Jonah with CF

> > > >

> > > > __________________________________________________

> > > >

[Guest guest]

I don't know about other CFer's. Patti has pooped through her diaper since

she quit pooping myconium, that includes before and after enzymes until we

changed her formula. Since she has been on lactose free stuff and I have

avoided milk stuffs she has had neither the gas or the explosions and

finally has solid " normal " looking and smelling :-) baby poops.

On the other hand my two year old pooped through her diaper forever until

she she was old enough to eat a whole banana a day. She does not have CF.

Even now if she does not have her morning banana she has the runs. We also

discovered that most fast foods make her runs worse. By the way her poops

smelled worse than that of my cf baby's.

There are conditions other than CF that cause the runs. My husband has a

weird type of arthritis called Riter's Syndrome. It is part genetic and

part virus activated. He has always had runny bowels, but they are worse

when his arthritis is flaring up. (I'm sure he appreciates me discussing

this with all of you!) So your daughter could have CF, something else, or

just be one of those people who is naturally " loose. " Push your dr. and

investigate on your own until you are satisfied. You are your child's best

advocate.

We are leaving now for our parents houses and will be back in late Sunday

night.

Happy Easter,

Dawn

gastro problems..Any ideas?

> > > > >

> > > > >

> > > > > Hi. My 2 1/2 year old son with CF has had

> > > > continual

> > > > > gastro problems since birth. He is on Pancrease MT

> > > > > 10

> > > > > regularly along with Myralax powder for, " Back

> > > > Up, "

> > > > > problems. He has had 3 clean outs by NG in the

> > > > past

> > > > > year. Although his weight has been fair, his

> > > > height

> > > > > has been 0-5%. His stomach is continually

> > > > extended.

> > > > > He

> > > > > looks like a little piglet from winnie the pooh!

> > > > He

> > > > > eats well. My problem is that he continually

> > > > > complains

> > > > > of tummy aches. I have told the gastro doc. He had

> > > > a

> > > > > belly scan and is not backed up. He is still

> > > > > extended

> > > > > though. The doctor was going to try Flagil?? but

> > > > > Jonah

> > > > > had a reaction of vommitting since he is also on

> > > > > sipro

> > > > > for reoccurring sinus probs. Can anyone tell me

> > > > more

> > > > > about CF gastro problems? Is this typical? Could

> > > > it

> > > > > be

> > > > > something else? Sometimes I get so frustrated with

> > > > > doctors! Now we have to wait 20 more days until he

> > > > > is

> > > > > off the cipro to try the other

> > > > antibiotic(Flagil?).

> > > > > Meanwhile.....?????

> > > > >

> > > > > Thanks,

> > > > > Michele mom of 3 Jonah with CF

> > > > >

> > > > > __________________________________________________

> > > > >

[Guest guest]

For what it is worth--I hope at least something--my cfer when little, was on

huge amounts of enzymes and I think Tagamet--and the kid was doing fine;

the next chilod up, who is a carrier, nearly destroyed the toilet; the next

child up who is also a carrier was very normal in the poop regard; this must

vary immensely in individuals--we will say of me only that I take enough en

zymes for an elk, and Acip[hex and Reglan, too!

n Rojas, the salty old thing!

[Guest guest]

HI

My 10 1/2 mo old son wears 2 diapers at all times. Even then he explodes thru

the diapers and into his clothes. This has been a constant ordeal since his

bowel reconnection at 5 months.

He has diareah 5-8 times a day. Mostly yellow, some green and greasy.

But he also has rotavirus that has homed itself in his gastro tract and or

intestines. They arent really sure.

Do you think they know!

I would without a doubt have your daughter tested and also have a GI Dr. take a

look at her. IMO.

I hope you get some answers soon.

Take care,

Stein,,,,mom to CF ( 10 1/2 mo)W/asthma,rotavirus,milk protein

allergy,short-gut, yaddda,yadda,ya & Tori wo/CF (3 1/2 yr) W/asthma

P.s. join me in buying stock in the Disposable Diaper CO! JK

gastro problems..Any ideas?

> > > >

> > > >

> > > > Hi. My 2 1/2 year old son with CF has had

> > > continual

> > > > gastro problems since birth. He is on Pancrease MT

> > > > 10

> > > > regularly along with Myralax powder for, " Back

> > > Up, "

> > > > problems. He has had 3 clean outs by NG in the

> > > past

> > > > year. Although his weight has been fair, his

> > > height

> > > > has been 0-5%. His stomach is continually

> > > extended.

> > > > He

> > > > looks like a little piglet from winnie the pooh!

> > > He

> > > > eats well. My problem is that he continually

> > > > complains

> > > > of tummy aches. I have told the gastro doc. He had

> > > a

> > > > belly scan and is not backed up. He is still

> > > > extended

> > > > though. The doctor was going to try Flagil?? but

> > > > Jonah

> > > > had a reaction of vommitting since he is also on

> > > > sipro

> > > > for reoccurring sinus probs. Can anyone tell me

> > > more

> > > > about CF gastro problems? Is this typical? Could

> > > it

> > > > be

> > > > something else? Sometimes I get so frustrated with

> > > > doctors! Now we have to wait 20 more days until he

> > > > is

> > > > off the cipro to try the other

> > > antibiotic(Flagil?).

> > > > Meanwhile.....?????

> > > >

> > > > Thanks,

> > > > Michele mom of 3 Jonah with CF

> > > >

> > > > __________________________________________________

> > > >

[Guest guest]

,

Eilish had awfully runny poo's when she was a few weeks old, until we

found out she had cf. Evry nappy change consisted of changing her

clothes also as it leaked and ran everywhere. Her's were yellow like

egg yoke, and smell, well all cf parents know this smell.

Once her enzymes were given she stopped being so runny just sticky.

What lovely convesations we cf parents have. Imagine someone

overhearing us all talk about mucus runny poo,sinus etc. They would

not sit there for long!

> > > > > Hi Michele, I can tell you that many, many CF

> > > > > patients have gastro problems.

> > > > > My problem is, I don't know what to tell you to

> > > > make

> > > > > it better. Shantell's

> > > > > had so many stomach aches, and she lays in pain

> > > > > screaming it hurts so bad.

> > > > > Of the three times she's been hospitalized, two

> > > > have

> > > > > been for gastro

> > > > > blockages. She's had many more than that, it just

> > > > > was so severe the last

> > > > > couple of times. They do horrible enemmas and

> > > > > procedures I don't even want

> > > > > to go in to, to get them unblocked. She's OK now,

> > > > > but doctors have taken

> > > > > her off of all vegetables, all fruit, all seafood,

> > > > > all red meat, all

> > > > > fiber...yeah, what the heck does she eat, right?

> > > > > Well, we juice her

> > > > > vegetables and fruit and avoid seeds. She's been

> > > > OK

> > > > > lately, but I know it's

> > > > > a matter of time. She did have meconium illeus at

> > > > > birth, did your little

> > > > > one? I'm searching now for a nutritionist,

> > > > > dietician with CF knowledge, not

> > > > > having much luck either. Also, I've placed a call

> > > > > to her surgeon who did

> > > > > her surgery at birth (19 years ago) and he's going

> > > > > to take a look at her

> > > > > Xrays. Doctors keep telling us that her blockage

> > > > is

> > > > > from scar tissue (they

> > > > > think), but I'm not totally convinced of that and

> > > > > will wait until he looks

> > > > > at them. So, all in all, I'm not much use to you

> > > > at

> > > > > all because I don't

> > > > > have any answers. We've tried everything, too.

> > > > Our

> > > > > doctor did order her

> > > > > Pancrecarb which is supposed to reduce the acidity

> > > > > in the stomach and the

> > > > > helps replace bicarbonate. We haven't tried it

> > > > yet,

> > > > > right now she's on

> > > > > Pancrease MT-16's. So, if you do find any input

> > > > on

> > > > > this to share, please do

> > > > > let us all know. I appreciate it.

> > > > > , mom of Shantell 19yr wcf

> > > > >

> > > > > gastro problems..Any ideas?

> > > > >

> > > > >

> > > > > Hi. My 2 1/2 year old son with CF has had

> > > > continual

> > > > > gastro problems since birth. He is on Pancrease MT

> > > > > 10

> > > > > regularly along with Myralax powder for, " Back

> > > > Up, "

> > > > > problems. He has had 3 clean outs by NG in the

> > > > past

> > > > > year. Although his weight has been fair, his

> > > > height

> > > > > has been 0-5%. His stomach is continually

> > > > extended.

> > > > > He

> > > > > looks like a little piglet from winnie the pooh!

> > > > He

> > > > > eats well. My problem is that he continually

> > > > > complains

> > > > > of tummy aches. I have told the gastro doc. He had

> > > > a

> > > > > belly scan and is not backed up. He is still

> > > > > extended

> > > > > though. The doctor was going to try Flagil?? but

> > > > > Jonah

> > > > > had a reaction of vommitting since he is also on

> > > > > sipro

> > > > > for reoccurring sinus probs. Can anyone tell me

> > > > more

> > > > > about CF gastro problems? Is this typical? Could

> > > > it

> > > > > be

> > > > > something else? Sometimes I get so frustrated with

> > > > > doctors! Now we have to wait 20 more days until he

> > > > > is

> > > > > off the cipro to try the other

> > > > antibiotic(Flagil?).

> > > > > Meanwhile.....?????

> > > > >

> > > > > Thanks,

> > > > > Michele mom of 3 Jonah with CF

> > > > >

> > > > > __________________________________________________

> > > > >

[Guest guest]

when josh was first diagnosed we had to keep a diary

of time of daiper changed and the time meals were and

the amount of medicine and descriptions of the bowel

movement and it helped alot but imagined what someone

thought if they got a hold of the little notebook i

kept it in....jen mom of josh 5 wcf and mikaela 1

w/ocf

--- liaeil2000@... wrote:

> ,

>

> Eilish had awfully runny poo's when she was a few

> weeks old, until we

> found out she had cf. Evry nappy change consisted

> of changing her

> clothes also as it leaked and ran everywhere. Her's

> were yellow like

> egg yoke, and smell, well all cf parents know this

> smell.

> Once her enzymes were given she stopped being so

> runny just sticky.

> What lovely convesations we cf parents have.

> Imagine someone

> overhearing us all talk about mucus runny poo,sinus

> etc. They would

> not sit there for long!

>

>

>

>

> > > > > Yes, Michele, she does have a distended

> stomach.

> > > > > However, she is a 19yr old

> > > > > girl and concerned about her body so she

> does more

> > > > > abdominal exercises than

> > > > > a whole classroom of aerobic instructors!

> She does

> > > > > them all the time at

> > > > > home. I was reading through some old charts

> of hers

> > > > > last night and came

> > > > > across some info about her surgery and a

> note from

> > > > > the surgeon. He

> > > > > suggested she would need additional B12 and

> B6 due

> > > > > to what they had taken

> > > > > out of her bowels. I recently read from

> another

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=====

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__________________________________________________

[Guest guest]

> Bless his heart. Patti used to do that continually. We also

called it

> exploding. Keep after those dr.s even if it makes them think your

one of

> those " crazy mothers " that they talk about as they roll their

eyes. :-)

> It is not acceptable for them to ignore it and they will unless you

harp on

> it.

My Ricky exploded all the time as a baby until we got him on

Pancrecarb. Now he has formed poops almost all the time. Only

exception was when he was on Zithromax -- it made him bowl

incontinent, so we got off of it.

Becky