Re:lots of stomach problems

[Guest guest]

Hi, My name is Tina I was diagnosed with IPF,UIP in April of 2004.I had a lung

biopsy to find out what i had and went to 3 different doctors to confirm the

diagnoses.I go to the lung center in my home town Decatur,Illinois i see them

every 6 months i have a chest x ray  and do the function test.Once a year i go

to university of Chicago i do pretty much the same thing there.Except i like the

University of Chicago better I have more faith with them.When i was first

diagnosed my home town lung doctor said i will give you two years.Scared me to

death i couldn't function any more .I had to now go to a head doctor just to

help me take that all in and get over it.When i was first diagnosed i was just

going in to have a cervical infusion on my neck and before i could have that

done i had to have a chest xray and this was when everything started i was

working doing fine had no shortness of breath nothing.Since i have had the lung

biopsy i have shortness of

breath and never feel good.Right after the biopsy the doctor told me i would

have to quit my job i had no way to take care of my self the doctors said apply

for SSI -SSD so i did got it .Not the way i wanted it but i feel like crap

anymore.I have alot of bloating in my stomach I'm miserable all the time and

body retains fluid all the time been fighting this since biopsy..Does any one

else suffer from BLOATING what can i do ?And if you got a good diet that consist

of being allergic to dairy please e- mail it to me.I'm 54 years old I need all

the help i can get I'm about 40 pounds over weight.Ive had upper GI nothing 2

weeks ago other than having a small hiatal hernia.My e-mail address is

tinadanner55@...              Thanks Tina

[Guest guest]

>

> Hi, My name is Tina I was diagnosed with IPF,UIP in April of 2004.I had a lung

biopsy to find out what i had and went to 3 different doctors to confirm the

diagnoses.I go to the lung center in my home town Decatur,Illinois i see them

every 6 months i have a chest x ray  and do the function test.Once a year i go

to university of Chicago i do pretty much the same thing there.Except i like the

University of Chicago better I have more faith with them.When i was first

diagnosed my home town lung doctor said i will give you two years.Scared me to

death i couldn't function any more .I had to now go to a head doctor just to

help me take that all in and get over it.When i was first diagnosed i was just

going in to have a cervical infusion on my neck and before i could have that

done i had to have a chest xray and this was when everything started i was

working doing fine had no shortness of breath nothing.Since i have had the lung

biopsy i have shortness of

> breath and never feel good.Right after the biopsy the doctor told me i would

have to quit my job i had no way to take care of my self the doctors said apply

for SSI -SSD so i did got it .Not the way i wanted it but i feel like crap

anymore.I have alot of bloating in my stomach I'm miserable all the time and

body retains fluid all the time been fighting this since biopsy..Does any one

else suffer from BLOATING what can i do ?And if you got a good diet that consist

of being allergic to dairy please e- mail it to me.I'm 54 years old I need all

the help i can get I'm about 40 pounds over weight.Ive had upper GI nothing 2

weeks ago other than having a small hiatal hernia.My e-mail address is

tinadanner55@...I also done the expermental drug interferon gamma 1b Shots 3xa

week for 1 and half years no change.No more expermental drugs on

me.              Thanks Tina

>

[Guest guest]

Hi Tina,

I'm also lactose intolerant and have a small hiatal hernia. I used to use

Lactaid pills just before I ate any dairy foods. Walgreens makes a generic one

that works great. Lactaid also makes lactose free milk, cottage cheese and ice

cream in three flavors, vanilla, chocolate, and butter pecan (yummy). I now use

a probiotic that does the same thing. You must consult your doc before you start

any of these supplements, however.

A large percentage of people with lactose intolerance are also gluten

intolerant. That means no wheat and some other grain products. The gluten causes

the little hairlike digestive organs in the intestine to not function. (think

covered with kindergarten glue). Therefore you do not digest your food

completely causing gas and nausea. This condition is called celiac disease. You

can stop eating wheat and the other grains to see if your stomach improves. It

is not an easy diet to follow until you learn of all of the other products

available as substitutes for wheat. If you want to know for sure if you are

wheat intolerant there is a test. You must take the test before you stop eating

wheat or you will show as a negative even if you are intolerant.

I have been diagnosed with IBS but having controlled my lactose intolerance and

gluten intolerance I would say I'm cured. I believe that doing that has helped

minimize my acid reflux which we all know is at least an irritant and/or a cause

of lung diseases.

Hopefully this helps.

Terre, IPF, 6-08, FL

>

> Hi, My name is Tina I was diagnosed with IPF,UIP in April of 2004.I had a lung

biopsy to find out what i had and went to 3 different doctors to confirm the

diagnoses.I go to the lung center in my home town Decatur,Illinois i see them

every 6 months i have a chest x ray  and do the function test.Once a year i go

to university of Chicago i do pretty much the same thing there.Except i like the

University of Chicago better I have more faith with them.When i was first

diagnosed my home town lung doctor said i will give you two years.Scared me to

death i couldn't function any more .I had to now go to a head doctor just to

help me take that all in and get over it.When i was first diagnosed i was just

going in to have a cervical infusion on my neck and before i could have that

done i had to have a chest xray and this was when everything started i was

working doing fine had no shortness of breath nothing.Since i have had the lung

biopsy i have shortness of

> breath and never feel good.Right after the biopsy the doctor told me i would

have to quit my job i had no way to take care of my self the doctors said apply

for SSI -SSD so i did got it .Not the way i wanted it but i feel like crap

anymore.I have alot of bloating in my stomach I'm miserable all the time and

body retains fluid all the time been fighting this since biopsy..Does any one

else suffer from BLOATING what can i do ?And if you got a good diet that consist

of being allergic to dairy please e- mail it to me.I'm 54 years old I need all

the help i can get I'm about 40 pounds over weight.Ive had upper GI nothing 2

weeks ago other than having a small hiatal hernia.My e-mail address is

tinadanner55@...              Thanks Tina

>

[Guest guest]

Tina I very much know how you feel I was told I have IPF the Tuesday before

Thanksgiving. I looked at my xrays and knew i had lung damage and I knew I

something was wrong 6 months ago. I had a cat scan and do not need a lung biopsy

I think they are not good. I have the same problem with eating I try to eat high

Carbs like a half a baked potato and a small corn on the Cob. Also 1 light beer

in the evening helps my stomach but I am not on any Meds. I try to eat two meals

a day with some meat. I go to the VA on the 26. I hope I get diabilty. NAVY

VIETNAM VET.

Lets make awareness of IPF

MY SUPPORT AND PRAYERS GO WITH YOU

MIKE BLAZER

>

>

> From: Tina Cole <tinadanner55@ yahoo.com>

> Subject: Re:lots of stomach problems

> To: Breathe-Support@ yahoogroups. com

> Date: Wednesday, January 6, 2010, 6:49 AM

>

>

>  

>

> Hi, My name is Tina I was diagnosed with IPF,UIP in April of 2004.I had a lung

biopsy to find out what i had and went to 3 different doctors to confirm the

diagnoses.I go to the lung center in my home town Decatur,Illinois i see them

every 6 months i have a chest x ray  and do the function test.Once a year i go

to university of Chicago i do pretty much the same thing there.Except i like the

University of Chicago better I have more faith with them.When i was first

diagnosed my home town lung doctor said i will give you two years.Scared me to

death i couldn't function any more .I had to now go to a head doctor just to

help me take that all in and get over it.When i was first diagnosed i was just

going in to have a cervical infusion on my neck and before i could have that

done i had to have a chest xray and this was when everything started i was

working doing fine had no shortness of breath nothing.Since i have had the lung

biopsy i have

> shortness of

> breath and never feel good.Right after the biopsy the doctor told me i would

have to quit my job i had no way to take care of my self the doctors said apply

for SSI -SSD so i did got it .Not the way i wanted it but i feel like crap

anymore.I have alot of bloating in my stomach I'm miserable all the time and

body retains fluid all the time been fighting this since biopsy..Does any one

else suffer from BLOATING what can i do ?And if you got a good diet that consist

of being allergic to dairy please e- mail it to me.I'm 54 years old I need all

the help i can get I'm about 40 pounds over weight.Ive had upper GI nothing 2

weeks ago other than having a small hiatal hernia.My e-mail address is

tinadanner55@ yahoo.com              Thanks

> Tina

>

[Guest guest]

Tina

You need to talk to the doctors about the pain. You need also to see

about the shortness of breath. Do you have an oximeter? How is your

saturation? Have you tried pulmonary rehab? Are you still seeing anyone

about your depression and anxiety? Last, lack of sleep by itself can

make life miserable without the other issues. Why aren't you using your

CPAP? Get a mask you can sleep with (I recommend a blue gel mask). Do

whatever it takes. I know this sounds a bit like a lecture but you can't

go back and change the decision on the biopsy. You can however get help

for the depression and anxiety and sleep. You can also find ways to get

enough oxygen to make life better. You can find a way to relieve the

bloating, whether its a food allergy such as milk, or something else

which an upper endoscopy might help you discover.

Instead of trying to deal with all the problems at once, pick one that

is impacting your daily life the most and address it. I'd bet it's

sleep. But maybe it's the pain or maybe the depression. Of does the

sleep cause the depression or the depression cause the sleep problems or

the sleep cause...oh you get the idea. What a never ending circle to try

to break. Get your doctors to help you address those things that can be

addressed. They don't have a cure for IPF but there sure are ways to

ease the suffering from the other issues you have. Amazing what helping

just one of them might do for you.

I know right now with IPF and another 18 or so conditions or issues, the

one impacting my comfort today most is itching. I'm trying

everything...have a bathroom full of every lotion known to man, have a

humidifier, have seen another dermatologist, had skin biopsies, bathe in

oatmeal. Also going for more testing to discover other possible causes.

Still itching, but not as bad as a few days ago. Soon maybe will be

easier to go to sleep and easier to enjoy the day. I'm working hard on

this one. Doesn't improve the function of my lungs or my kidneys or my

esophagus or anything else. But its something I have hope can improve

and I know life will be better if it does. If it would cut down the

itching, I'd carry two oxygen tanks....lol.

I'm just saying that your life can be better with sleep, or less

bloating, or less depression or anxiety and none of those even involve

IPF.

>

> Hi michelle,

> Â Â Â Â Â Â Â Â Â Â Â Â Â Â

    I also have constant pain in my side.And i

definitely now have shortness of breath.I was not short of breath before

the biopsy.The only meds I'm on is prevacid and i take ativan.I go

through spells of depression i have a lot of anxiety and trouble

sleeping.I also have sleep apnea, which I'm supposed to use my machine

but i don't .Can't sleep with it.

> Â Â Â Â Â Â Â Â Â Â Â Â Â Â

             Â

             Â

             Â

             Â

     Thanks for writing me back.

>

>

> ________________________________

> From: Gascoigne michelle.gascoigne@...

> To: Breathe-Support

> Sent: Wed, January 6, 2010 7:21:14 PM

> Subject: Re: Re:lots of stomach problems

>

> Â

> hey there Tina I had my biopsy in July, and I feel the same way. IÂ

most definitely am not the same since. I feel that my shortness of

breath is worse. Also have pains in my side constant. Nope I

wouldn't do it again either. And I too have the bloating feeling

too.. Was on Prednisone for 3 months and went off, had gained 15

lbs., thought I was loosing it but really I'm not. Started Imuran on Oct

21, maybe that is what is causing bloating. Wishing you the

best. I guess we just all of stick together and keep asking each

other questions.Â

>

> I know I have found out more here then from any of my doctors.Â

THANK GOD FOR ALL OF MY AIR FAMILY!!!!!! !!!!!!!

>

> Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009

>

>

>

>

>

> ________________________________

> From: Tina Cole <tinadanner55@ yahoo.com>

> To: Breathe-Support@ yahoogroups. com

> Sent: Wed, January 6, 2010 8:49:39 AM

> Subject: Re:lots of stomach problems

>

> Â

> Hi, My name is Tina I was diagnosed with IPF,UIP in April of 2004.I

had a lung biopsy to find out what i had and went to 3 different

doctors to confirm the diagnoses.I go to the lung center in my home town

Decatur,Illinois i see them every 6 months i have a chest x ray and

do the function test.Once a year i go to university of Chicago i do

pretty much the same thing there.Except i like the University of Chicago

better I have more faith with them.When i was first diagnosed my home

town lung doctor said i will give you two years.Scared me to death i

couldn't function any more .I had to now go to a head doctor just to

help me take that all in and get over it.When i was first diagnosed i

was just going in to have a cervical infusion on my neck and before i

could have that done i had to have a chest xray and this was when

everything started i was working doing fine had no shortness of breath

nothing.Since i have had the lung biopsy i have shortness of

> breath and never feel good.Right after the biopsy the doctor told me i

would have to quit my job i had no way to take care of my self the

doctors said apply for SSI -SSD so i did got it .Not the way i

wanted it but i feel like crap anymore.I have alot of bloating in my

stomach I'm miserable all the time and body retains fluid all the time

been fighting this since biopsy..Does any one else suffer from BLOATING

what can i do ?And if you got a good diet that consist of being allergic

to dairy please e-Â mail it to me.I'm 54 years old I need all the

help i can get I'm about 40 pounds over weight.Ive had upper GI nothing

2 weeks ago other than having a small hiatal hernia.My e-mail

address is tinadanner55@ yahoo.com      Â

      Thanks Tina

>

[Guest guest]

Patti

People have many different experiences with VATS. Some have absolutely no

problems. Some have extensive problems. In the middle are those who spend three

or four days in the hospital, go home, do fine, but do have some residual pain

for a period of time.

The problem is some doctors make it seem like nothing. I think thats because as

Thoracic surgery goes its a relatively simple procedure. If you compare it to

open heart surgery it is minor. But, it is a very invasive procedure. When they

go in and start taking pieces of my organs it's a significant surgery to me. And

for many it does have some residual pain.

As to measuring any worsening in PFT's as a result, thats really hard to do.

First, there is obviously some short term impact because of any pain one might

be experiencing. Second, over any period of longer time, who is to know what

otherwise might have been experienced.

So, I encourage people to read all sides. But the key to me is understanding why

you're doing it and what you're going to do with the information gathered. I

knew that for me. In my case if I had UIP/IPF then I wasn't going to take meds.

If I had NSIP then I would have taken some. So, as a result of knowing exactly

what I wanted to find out and how I'd use the information, I consider mine

worthwhile. Now, was it easy and simple? No. I had various issues, some that

only I would have incurred related to anesthesia. Others typical, related to the

site pain. But, I am glad I had the VATS. The doctors needed that information to

feel any certainty on what I have. I have used that information to guide my

treatment choices.

I did come to this forum and read before I had mine. There were several at that

time vocal in opposing them, some who had had one and some who hadn't. But there

were others who had them and recommended them. I sorted through it all to figure

out what was right for me. Right now the forum has just seen several who say

they wish they hadn't. But let me assure you that the mood of reactions toward

it comes and goes and during another period of time you might see a predominance

of those who are glad they had it or thought there was nothing to it. The truth

lies in all the responses and somewhere between the views to both extremes.

>

> Tina, and ,

>

> I was wondering what kind of biopsy you all had that you have been having such

problems.....was it the VATS biopsy or the open lung? The doctor at U of

Chicago said we will discuss that when I return in Feb......I think I am getting

worried again.

>

> Patti Indianapolis IPF 2007

>

[Guest guest]

Bruce,

I think I am one of those people that reacts to whatever is being posted at the time. If there are several people that had successful biopsies with minimal problems then I feel "okay I can do this".....then when I read several negative posts I get so worried all over again because right now I am pretty much asymptomatic, except that my PFT stats are taking a down turn. I guess the key is making up my mind to trust my doctors (and I do) or I shouldn't be going to them in the first place.

Thank you again for all your information!

Patti Indianapolis IPF 2007

[Guest guest]

Emma

VATS is an area to listen to your doctors but not to fully trust. Let me

try to explain. Medically it gives them more precise and accurate

information. But its not their lung. It's not them being invaded. You

need to have an interchange of issues with them so you can decide with

their guidance and advice. Discuss treatments based on outcomes. You may

have a feeling there which changes the VATS discussion. Discuss what

you'd do without a VATS and what you'd do based on each outcome of a

VATS. As much as I do think VATS was right for me, I also think its too

automatic on the part of most doctors. Yes, it provides information.

But, information is only as good as the use to which it will be put.

Other factors such as age and other health conditions and past surgical

experiences also play a role. If I'd been found to have a connective

tissue disease then I probably wouldn't have done a VATS because I would

have been treating the connective tissue and already doing any possible

treatment anyway. Some clinical trials require one and some don't. It's

funny that I said yes and am glad I said yes to a VATS but I have since

said no to a kidney biopsy. My rheumatologist definitely wanted one as

he wants every possible thing done to find out something. My

nephrologist had no desire from a kidney stand point but understood him

wanting one to look for possible connective tissue. The risk is low but

I haven't yet heard a compelling argument to get me to have one. I've

similarly had to face other biopsy decisions such as whether to biopsy

my lymph nodes and with the consultation of my oncologist have said no

to that as well.

>

> Bruce,

> I think I am one of those people that reacts to whatever is being

posted at the time. If there are several people that had successful

biopsies with minimal problems then I feel " okay I can do this " .....then

when I read several negative posts I get so worried all over again

because right now I am pretty much asymptomatic, except that my PFT

stats are taking a down turn. I guess the key is making up my mind to

trust my doctors (and I do) or I shouldn't be going to them in the first

place.

> Thank you again for all your information!

>

> Patti Indianapolis IPF 2007

>

[Guest guest]

That is VATS.

>

> Ok I thought mine was open lung. I have 3 cuts on my back all about

2 " long, one for upper lobe, one for lower lobe, and one where the chest

tube was.

>

> Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009

>

>

>

>

>

> ________________________________

> From: Patti napa73@...

> To: Breathe-Support

> Sent: Thu, January 7, 2010 12:18:36 PM

> Subject: Re: Re:lots of stomach problems

>

>

> Tina, and ,

>

> I was wondering what kind of biopsy you all had that

> you have been having such problems.... .was it the VATS biopsy or the

open

> lung? The doctor at U of Chicago said we will discuss that when I

return

> in Feb......I think I am getting worried again.

>

> Patti Indianapolis IPF

> 2007

>

[Guest guest]

There has been some small amount of data of use collected on biopsies

but unfortunately not a lot of study I can find regarding complications.

What I have read along the lines of what you mention is that many are

not recommending them for those over a certain age and for those beyond

a certain point. Previously some people weren't getting them, then their

condition would start worsening rapidly and they'd rush in and do the

biopsy. Now, they recognize more that this is the wrong circumstances

for one. I had mine when I was still physically strong even though my

disease was moderately progressed. But I had the strength and the time

to recover. Where the few studies I've seen to contraindicated biopsies

is on patients who are already into acute respiratory problems.

I would have an argument with anyone or any doctor saying everyone

should get a biopsy or saying no one should. It should be based on all

the circumstances including physical condition, any meds previously

tried, clarity of the HRCT's in terms of likelihood they are

definitive, and ultimately personal choice. It is a very complex

decision to be made and not one for which there is a universal answer.

The use of the information to be gained is a primary issue. If one

intends to follow the same treatment regardless, then I see it as making

less sense. The accuracy of specific diagnosis (form of ILD) from CT's

is approximately 60% (determining that you have an ILD is 96%+) and from

biopsies is approximately 96%.

Dr. Raghu, who mentions in her response, is one who believes in

trying Imuran, Prednisone, and NAC regardless and letting that determine

the disease. Basically, that approach says that you take a high dosage

of prednisone and if you show no response to it (progress while under it

over 90 days) then you probably have UIP. If you respond then you

probably have another form which it is effective on.

UIP with no underlying connective tissue disease and no appreciable

inflammation is not considered a condition for which meds are effective.

Prednisone and others are effective on the other forms of ILD but not in

this circumstance. Now many doctors do offer the option or even

encourage taking them anyway. But even those doctors recognize that they

aren't considered effective. What those doctors do state is that perhaps

the diagnosis will be wrong and there is nothing else to offer so lets

try anyway.There are also many other ILD's and other lung conditions

that different meds are appropriate for.

Based on my diagnosis I chose not to take prednisone. This was a

personal decision based on diagnosis, based on other conditions, based

on the side effects of prednisone, and based on my personal situation.

Unlike you, I don't have a problem accepting nothing can be done. If

thats the reality, then so be it. I can accept the disease and the

consequences. However, the doctors do continue to be puzzled by other

things related to my diseases and the questions as to whether or not I

have a connective tissue disease. So, for that, I do continue to get

monitored, get labs, and see more doctors. If something different is

discovered then I will proceed with new choices at that point.

Someone else pointed out the problem with knowing whether any med is

working or not and that is stability. Some remain stable regardless. If

you have a condition which the med makes you feel better on and you see

improvement, then you likely know the med is working. However, if you

remain stable you don't know. Thats why we have clinical trials and why

now we're having the first clinical trials on imuran, prednisone, and

nac for IPF, to see if they provide any help on UIP. Certainly, no more

than I've progressed the past 2 years you would jump to the conclusion

the meds were working, if I was on any.

> >

> > Tina, and ,

> >

> > I was wondering what kind of biopsy you all had that you have been

having such problems.... .was it the VATS biopsy or the open lung? The

doctor at U of Chicago said we will discuss that when I return in

Feb......I think I am getting worried again.

> >

> > Patti Indianapolis IPF 2007

> >

>