Massive belly pain

[proverbs3]

Faith was diagonosed a year and a half ago at the age of 9. Yes, it was difficult to deal with in the beginning, but dealing with her CF ended up being ok, because she never showed signs of being sick. Once we found out what her problem was, it was being fixed. No more loose bowels, less coughing. We could deal with that.

However, the last couple of months have put us over the edge. She went into the hospital the first part of February because of severe belly pain. After 4 weeks and 2 days (this was her 7th visit to the hospital since she was diagnosed), she ended up getting a c-diff bacteria in her stool. They gave her a contrast enema, which was awful and a lot more pills. She already contracted a mycobacteria this past summer while she was in the hospital. So they cleaned her out, gave her more pills and sent us home.

Last week it started again. On Thursday, she was full of poop again, even though she was going. Apparently, the looser stuff goes around the harder stuff. They gave her another enema (I really don't like these!) It's now Sunday night and she has been in pain off and on (mostly on) all weekend. It's almost like everytime she eats something, it starts acting up a few hours later. She takes her enzymes and she hasn't had much to eat yesterday or today.

In the hospital, they thought it might be her gall bladder, but didn't want to take it out. Could it be pancreaitis (sp?) I'm not even sure what that is. I can't stand to see her in pain like this, and I hate to think we're going back to the hospital.

I want to call the docs tomorrow and say "hey, we need to talk to a gastro specialist and soon!" Something is not right. I only have a 1 1/2 years of cf knowledge, which isn't very much, but my mom instincts are running crazy.

Has anybody had dealings with sever belly aches like this? Oh yea, and she has thrown up once and dry heaves quite frequently.

Thanks.
Carol

 

[proverbs3]

Faith was diagonosed a year and a half ago at the age of 9. Yes, it was difficult to deal with in the beginning, but dealing with her CF ended up being ok, because she never showed signs of being sick. Once we found out what her problem was, it was being fixed. No more loose bowels, less coughing. We could deal with that.

However, the last couple of months have put us over the edge. She went into the hospital the first part of February because of severe belly pain. After 4 weeks and 2 days (this was her 7th visit to the hospital since she was diagnosed), she ended up getting a c-diff bacteria in her stool. They gave her a contrast enema, which was awful and a lot more pills. She already contracted a mycobacteria this past summer while she was in the hospital. So they cleaned her out, gave her more pills and sent us home.

Last week it started again. On Thursday, she was full of poop again, even though she was going. Apparently, the looser stuff goes around the harder stuff. They gave her another enema (I really don't like these!) It's now Sunday night and she has been in pain off and on (mostly on) all weekend. It's almost like everytime she eats something, it starts acting up a few hours later. She takes her enzymes and she hasn't had much to eat yesterday or today.

In the hospital, they thought it might be her gall bladder, but didn't want to take it out. Could it be pancreaitis (sp?) I'm not even sure what that is. I can't stand to see her in pain like this, and I hate to think we're going back to the hospital.

I want to call the docs tomorrow and say "hey, we need to talk to a gastro specialist and soon!" Something is not right. I only have a 1 1/2 years of cf knowledge, which isn't very much, but my mom instincts are running crazy.

Has anybody had dealings with sever belly aches like this? Oh yea, and she has thrown up once and dry heaves quite frequently.

Thanks.
Carol

 

[proverbs3]

Faith was diagonosed a year and a half ago at the age of 9. Yes, it was difficult to deal with in the beginning, but dealing with her CF ended up being ok, because she never showed signs of being sick. Once we found out what her problem was, it was being fixed. No more loose bowels, less coughing. We could deal with that.

However, the last couple of months have put us over the edge. She went into the hospital the first part of February because of severe belly pain. After 4 weeks and 2 days (this was her 7th visit to the hospital since she was diagnosed), she ended up getting a c-diff bacteria in her stool. They gave her a contrast enema, which was awful and a lot more pills. She already contracted a mycobacteria this past summer while she was in the hospital. So they cleaned her out, gave her more pills and sent us home.

Last week it started again. On Thursday, she was full of poop again, even though she was going. Apparently, the looser stuff goes around the harder stuff. They gave her another enema (I really don't like these!) It's now Sunday night and she has been in pain off and on (mostly on) all weekend. It's almost like everytime she eats something, it starts acting up a few hours later. She takes her enzymes and she hasn't had much to eat yesterday or today.

In the hospital, they thought it might be her gall bladder, but didn't want to take it out. Could it be pancreaitis (sp?) I'm not even sure what that is. I can't stand to see her in pain like this, and I hate to think we're going back to the hospital.

I want to call the docs tomorrow and say "hey, we need to talk to a gastro specialist and soon!" Something is not right. I only have a 1 1/2 years of cf knowledge, which isn't very much, but my mom instincts are running crazy.

Has anybody had dealings with sever belly aches like this? Oh yea, and she has thrown up once and dry heaves quite frequently.

Thanks.
Carol

 

[coltsfan715]

Is she able to describe her pain to you? Does the pain happen more often with certain types of food - like mexican (spicy), italian or when she drinks sodas or dairy? Are ANY other symptoms accompanying the stomach pains - stabbing pains in back, stomach cramping, sweating, shortness of breath, vommitting?

I am asking this because when I had gallstones and was having gallstone attacks I was told they would come with spicy food though they never did. My attacks came ONLY when I had sodas to drink - or anything carbonated. When I had attacks I was told that I would get stabbing pains in my back - but I did not (though many people do). I had symptoms that were very similar to anxiety attack symptoms. I had shortness of breath, chest tightness, what felt like stomach cramping from really bad gas, I would ultimately heave and vomit before it was over and done with. It would start with the "gas pains" and I would try to go to the bathroom and I never could go.

I was tipped off to the fact that my "anxiety attacks" were gallstone attacks when I had abnormal liver enzymes in blood work I had run. I went through ultrasounds and cat scans all of which came back NORMAL until I had a HIDDA Scan that came back abnormal. I had my gallbladder removed a few years ago and haven't had those problems since.

If you are concerned about it it doesn't hurt to ask. Take her to a gastro guy regardless of the gallstones. Somethind is going on if she keeps having this problem and it isn't getting corrected. My personal opinion - if it is recurring she needs a specialist regardless of what it is.

Take Care and I hope things get better.
Lindsey

 

[coltsfan715]

Is she able to describe her pain to you? Does the pain happen more often with certain types of food - like mexican (spicy), italian or when she drinks sodas or dairy? Are ANY other symptoms accompanying the stomach pains - stabbing pains in back, stomach cramping, sweating, shortness of breath, vommitting?

I am asking this because when I had gallstones and was having gallstone attacks I was told they would come with spicy food though they never did. My attacks came ONLY when I had sodas to drink - or anything carbonated. When I had attacks I was told that I would get stabbing pains in my back - but I did not (though many people do). I had symptoms that were very similar to anxiety attack symptoms. I had shortness of breath, chest tightness, what felt like stomach cramping from really bad gas, I would ultimately heave and vomit before it was over and done with. It would start with the "gas pains" and I would try to go to the bathroom and I never could go.

I was tipped off to the fact that my "anxiety attacks" were gallstone attacks when I had abnormal liver enzymes in blood work I had run. I went through ultrasounds and cat scans all of which came back NORMAL until I had a HIDDA Scan that came back abnormal. I had my gallbladder removed a few years ago and haven't had those problems since.

If you are concerned about it it doesn't hurt to ask. Take her to a gastro guy regardless of the gallstones. Somethind is going on if she keeps having this problem and it isn't getting corrected. My personal opinion - if it is recurring she needs a specialist regardless of what it is.

Take Care and I hope things get better.
Lindsey

 

[coltsfan715]

Is she able to describe her pain to you? Does the pain happen more often with certain types of food - like mexican (spicy), italian or when she drinks sodas or dairy? Are ANY other symptoms accompanying the stomach pains - stabbing pains in back, stomach cramping, sweating, shortness of breath, vommitting?

I am asking this because when I had gallstones and was having gallstone attacks I was told they would come with spicy food though they never did. My attacks came ONLY when I had sodas to drink - or anything carbonated. When I had attacks I was told that I would get stabbing pains in my back - but I did not (though many people do). I had symptoms that were very similar to anxiety attack symptoms. I had shortness of breath, chest tightness, what felt like stomach cramping from really bad gas, I would ultimately heave and vomit before it was over and done with. It would start with the "gas pains" and I would try to go to the bathroom and I never could go.

I was tipped off to the fact that my "anxiety attacks" were gallstone attacks when I had abnormal liver enzymes in blood work I had run. I went through ultrasounds and cat scans all of which came back NORMAL until I had a HIDDA Scan that came back abnormal. I had my gallbladder removed a few years ago and haven't had those problems since.

If you are concerned about it it doesn't hurt to ask. Take her to a gastro guy regardless of the gallstones. Somethind is going on if she keeps having this problem and it isn't getting corrected. My personal opinion - if it is recurring she needs a specialist regardless of what it is.

Take Care and I hope things get better.
Lindsey

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>proverbs3</b></i>


I want to call the docs tomorrow and say "hey, we need to talk to a gastro specialist and soon!"
l</end quote></div>

not much more to add other than it's always smart to see a specialist having to do with the area where you're having problems.

pulmonologists are still pulmo's, even if they have some CF expertise.

some physicians get slapped on the wrist monetarily for referring to other physicians, so it's important that you're proactive in seeking the physicians out that you think your child needs <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>proverbs3</b></i>


I want to call the docs tomorrow and say "hey, we need to talk to a gastro specialist and soon!"
l</end quote></div>

not much more to add other than it's always smart to see a specialist having to do with the area where you're having problems.

pulmonologists are still pulmo's, even if they have some CF expertise.

some physicians get slapped on the wrist monetarily for referring to other physicians, so it's important that you're proactive in seeking the physicians out that you think your child needs <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>proverbs3</b></i>


I want to call the docs tomorrow and say "hey, we need to talk to a gastro specialist and soon!"
l</end quote></div>

not much more to add other than it's always smart to see a specialist having to do with the area where you're having problems.

pulmonologists are still pulmo's, even if they have some CF expertise.

some physicians get slapped on the wrist monetarily for referring to other physicians, so it's important that you're proactive in seeking the physicians out that you think your child needs <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[proverbs3]

Lindsey,

That was very helpful. What is a HIDDA scan and exactly how is it performed? I'm actually going to call the docs today and tell them I want to see a gastro person. Pray it goes well.

Thanks.

 

[proverbs3]

Lindsey,

That was very helpful. What is a HIDDA scan and exactly how is it performed? I'm actually going to call the docs today and tell them I want to see a gastro person. Pray it goes well.

Thanks.

 

[proverbs3]

Lindsey,

That was very helpful. What is a HIDDA scan and exactly how is it performed? I'm actually going to call the docs today and tell them I want to see a gastro person. Pray it goes well.

Thanks.

 

[coltsfan715]

Well, by what I can recall a HIDDA Scan requires that they inject you with a nuclear dye of sorts. I am not sure what the dye is I jus tknow it is a radioactive type thing. The case that the needle/syringe is kept in is much scarier than the actual injection. Then they lay you on a table underneath all these cameras and such. They wait for the die to make its way through your system to your gallbladder. It is supposed to highlight your gallbladder and more precisely show them how it is functioning. It takes about 2 hours I think.

I went through that test and my results were abnormal because my gallbladder did NOT show up on the test. They took me for an ultrsound and found my gallbladder and marked my stomach with a sharpie right on top of the spot that my gallbladder was and still they could not find it with the HIDDA Scan. It was not highlighting. I waited about 3 hours and had to go because I had a follow up docs appt that was supposed to go over the results of the HIDDA Scan. Ultimately they told me I had a Non Functioning Gallbladder, upon surgery and removal they found out that I did indeed have gallstones. I had so many gallstones that the doc said they couldn't have fit another one in my gallbladder if they had wanted too - he didn't give an exact number he just told my mom several hundred gallstones. Our theory I had so many gallstones that they dye was unable to enter my gallbladder and THAT is why it was never highlighted on the test - it was too full with stones to take anything else lol.

I hope that all works out with your daughter - I truly do. I will be thinking of her and hoping that you can get some answers.

Take Care,
Lindsey

 

[coltsfan715]

Well, by what I can recall a HIDDA Scan requires that they inject you with a nuclear dye of sorts. I am not sure what the dye is I jus tknow it is a radioactive type thing. The case that the needle/syringe is kept in is much scarier than the actual injection. Then they lay you on a table underneath all these cameras and such. They wait for the die to make its way through your system to your gallbladder. It is supposed to highlight your gallbladder and more precisely show them how it is functioning. It takes about 2 hours I think.

I went through that test and my results were abnormal because my gallbladder did NOT show up on the test. They took me for an ultrsound and found my gallbladder and marked my stomach with a sharpie right on top of the spot that my gallbladder was and still they could not find it with the HIDDA Scan. It was not highlighting. I waited about 3 hours and had to go because I had a follow up docs appt that was supposed to go over the results of the HIDDA Scan. Ultimately they told me I had a Non Functioning Gallbladder, upon surgery and removal they found out that I did indeed have gallstones. I had so many gallstones that the doc said they couldn't have fit another one in my gallbladder if they had wanted too - he didn't give an exact number he just told my mom several hundred gallstones. Our theory I had so many gallstones that they dye was unable to enter my gallbladder and THAT is why it was never highlighted on the test - it was too full with stones to take anything else lol.

I hope that all works out with your daughter - I truly do. I will be thinking of her and hoping that you can get some answers.

Take Care,
Lindsey

 

[coltsfan715]

Well, by what I can recall a HIDDA Scan requires that they inject you with a nuclear dye of sorts. I am not sure what the dye is I jus tknow it is a radioactive type thing. The case that the needle/syringe is kept in is much scarier than the actual injection. Then they lay you on a table underneath all these cameras and such. They wait for the die to make its way through your system to your gallbladder. It is supposed to highlight your gallbladder and more precisely show them how it is functioning. It takes about 2 hours I think.

I went through that test and my results were abnormal because my gallbladder did NOT show up on the test. They took me for an ultrsound and found my gallbladder and marked my stomach with a sharpie right on top of the spot that my gallbladder was and still they could not find it with the HIDDA Scan. It was not highlighting. I waited about 3 hours and had to go because I had a follow up docs appt that was supposed to go over the results of the HIDDA Scan. Ultimately they told me I had a Non Functioning Gallbladder, upon surgery and removal they found out that I did indeed have gallstones. I had so many gallstones that the doc said they couldn't have fit another one in my gallbladder if they had wanted too - he didn't give an exact number he just told my mom several hundred gallstones. Our theory I had so many gallstones that they dye was unable to enter my gallbladder and THAT is why it was never highlighted on the test - it was too full with stones to take anything else lol.

I hope that all works out with your daughter - I truly do. I will be thinking of her and hoping that you can get some answers.

Take Care,
Lindsey

 

[LouLou]

I had my gallbladder removed. See a gastro. specialist immediately. (S)he will likely order an ultrasound. This is what diagnosed my problem although as Lindsay mentioned the HIDDA this might also be used. If she is to have her gallbladder pulled you want to have it be a scheduled surgery with a top notch surgeon recommended by the gastro doc. It's a routine operation for those that do them, the surgeons in the ER is not the way to go. You can see pictures of my gallbladder in my blog as well as my diagnosis / recovery story.

 

[LouLou]

I had my gallbladder removed. See a gastro. specialist immediately. (S)he will likely order an ultrasound. This is what diagnosed my problem although as Lindsay mentioned the HIDDA this might also be used. If she is to have her gallbladder pulled you want to have it be a scheduled surgery with a top notch surgeon recommended by the gastro doc. It's a routine operation for those that do them, the surgeons in the ER is not the way to go. You can see pictures of my gallbladder in my blog as well as my diagnosis / recovery story.

 

[LouLou]

I had my gallbladder removed. See a gastro. specialist immediately. (S)he will likely order an ultrasound. This is what diagnosed my problem although as Lindsay mentioned the HIDDA this might also be used. If she is to have her gallbladder pulled you want to have it be a scheduled surgery with a top notch surgeon recommended by the gastro doc. It's a routine operation for those that do them, the surgeons in the ER is not the way to go. You can see pictures of my gallbladder in my blog as well as my diagnosis / recovery story.

 

[AnD]

I had my gallbladder removed almost 20 years ago, and still had recurrent similar stomach aches. Turned out I had a gallstone left in my common bile duct. I also had pancreatitis- I felt like screaming "I told you I had a stomach ache- quit shoving enzymes at my overweight self!"(I don't take enzymes). I also recently was treated for H pylori, which can cause stomach ulcers- I didn't have ulcers, but my reoccuring pain resolved after being treated for that. I also have to drink lots of extra water to keep my liver flushed out (had a really bad liver infection last year- long story) and if I don't, I can start to get discomfort in that area.

I go to a wonderful pediatric GI doctor (even though I'm 36 <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) and he has made a world of difference in my quality of life in the last year! I would demand to see one if they are hesitant- my regular cf pediatric doctors didn't help me with my slightly odd GI symptoms, except my routine gallbladder problems. Like has been said, they are cf doctors, but they are pulmonologists first <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I hope you will be able to get this resolved soon- I know that kind of stomach pain is awful, and it is painful for you to feel like you can't fix it for her *hugs*.

 

[AnD]

I had my gallbladder removed almost 20 years ago, and still had recurrent similar stomach aches. Turned out I had a gallstone left in my common bile duct. I also had pancreatitis- I felt like screaming "I told you I had a stomach ache- quit shoving enzymes at my overweight self!"(I don't take enzymes). I also recently was treated for H pylori, which can cause stomach ulcers- I didn't have ulcers, but my reoccuring pain resolved after being treated for that. I also have to drink lots of extra water to keep my liver flushed out (had a really bad liver infection last year- long story) and if I don't, I can start to get discomfort in that area.

I go to a wonderful pediatric GI doctor (even though I'm 36 <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) and he has made a world of difference in my quality of life in the last year! I would demand to see one if they are hesitant- my regular cf pediatric doctors didn't help me with my slightly odd GI symptoms, except my routine gallbladder problems. Like has been said, they are cf doctors, but they are pulmonologists first <img src="i/expressions/face-icon-small-wink.gif" border="0"> . I hope you will be able to get this resolved soon- I know that kind of stomach pain is awful, and it is painful for you to feel like you can't fix it for her *hugs*.