Lots and lots of clear stringy mucus

[jmom]

I WAS HOPING YOU MOMS MIGHT BE ABLE TO HELP ME OUT. I already sent a pm to "hmw" and about this and she was so very helpful, but I thought I'd throw this out to the forum and see if anyone else has insight.
Here's the deal. Insurance denied auth. of Ambry genetics without ever giving us a chance to submit doctor's letter of medical necessity. Thus, with a "high normal" sweat test of 33, positive fat malab. test, and foamy stools, I'm afraid we will be left ever-guessing. So I'm playing detective.
I was wondering if anyone has seen the following before: After three bouts of significant GI bleeding, we prepped my then 5 year old daughter for a sigmoidoscopy (she already had 2 colonoscopies and a surgery). When we gave her the ENEMA for this to clean her out, I will never forget the large amount of THICK, CLEAR, STRINGY MUCUS that filled the toilet bowl. Not to be graphic, but the formed stool was floating on the surface, and strings and strings of mucus were hanging off of it all the way to the bottom of the bowl - probably 2 cupfuls. HAVE ANY OF YOU EVER SEEN THIS BEFORE? I don't know if this is typical of healthy kids and enemas, but I know CF is a disease of thick mucus.
Also, we often see what looks like white bubble bath coming out of her GI tract and floating on the surface of the water. Even pathology had no idea what this was. HAVE ANY OF YOU EVER SEEN THIS BEFORE?
Since insurance may never cooperate, you don't know how grateful I am that I can post questions with you all. Thanks!!! God bless you and your precious children.

 

[jmom]

I WAS HOPING YOU MOMS MIGHT BE ABLE TO HELP ME OUT. I already sent a pm to "hmw" and about this and she was so very helpful, but I thought I'd throw this out to the forum and see if anyone else has insight.
Here's the deal. Insurance denied auth. of Ambry genetics without ever giving us a chance to submit doctor's letter of medical necessity. Thus, with a "high normal" sweat test of 33, positive fat malab. test, and foamy stools, I'm afraid we will be left ever-guessing. So I'm playing detective.
I was wondering if anyone has seen the following before: After three bouts of significant GI bleeding, we prepped my then 5 year old daughter for a sigmoidoscopy (she already had 2 colonoscopies and a surgery). When we gave her the ENEMA for this to clean her out, I will never forget the large amount of THICK, CLEAR, STRINGY MUCUS that filled the toilet bowl. Not to be graphic, but the formed stool was floating on the surface, and strings and strings of mucus were hanging off of it all the way to the bottom of the bowl - probably 2 cupfuls. HAVE ANY OF YOU EVER SEEN THIS BEFORE? I don't know if this is typical of healthy kids and enemas, but I know CF is a disease of thick mucus.
Also, we often see what looks like white bubble bath coming out of her GI tract and floating on the surface of the water. Even pathology had no idea what this was. HAVE ANY OF YOU EVER SEEN THIS BEFORE?
Since insurance may never cooperate, you don't know how grateful I am that I can post questions with you all. Thanks!!! God bless you and your precious children.

 

[jmom]

I WAS HOPING YOU MOMS MIGHT BE ABLE TO HELP ME OUT. I already sent a pm to "hmw" and about this and she was so very helpful, but I thought I'd throw this out to the forum and see if anyone else has insight.
<br /> Here's the deal. Insurance denied auth. of Ambry genetics without ever giving us a chance to submit doctor's letter of medical necessity. Thus, with a "high normal" sweat test of 33, positive fat malab. test, and foamy stools, I'm afraid we will be left ever-guessing. So I'm playing detective.
<br /> I was wondering if anyone has seen the following before: After three bouts of significant GI bleeding, we prepped my then 5 year old daughter for a sigmoidoscopy (she already had 2 colonoscopies and a surgery). When we gave her the ENEMA for this to clean her out, I will never forget the large amount of THICK, CLEAR, STRINGY MUCUS that filled the toilet bowl. Not to be graphic, but the formed stool was floating on the surface, and strings and strings of mucus were hanging off of it all the way to the bottom of the bowl - probably 2 cupfuls. HAVE ANY OF YOU EVER SEEN THIS BEFORE? I don't know if this is typical of healthy kids and enemas, but I know CF is a disease of thick mucus.
<br /> Also, we often see what looks like white bubble bath coming out of her GI tract and floating on the surface of the water. Even pathology had no idea what this was. HAVE ANY OF YOU EVER SEEN THIS BEFORE?
<br /> Since insurance may never cooperate, you don't know how grateful I am that I can post questions with you all. Thanks!!! God bless you and your precious children.

 

[crickit715]

on occasion my daughter will have a "blow out"...(in the cf world that is a super-large mushy bowel movement, usually orange/yellow in color) when this happens i notice what i call "spider webs" throughout the stool....white stringy stuff. her doc told me this was excess mucus. she doesnt go the the potty yet, so i really dont know how this would appear in the potty. ((reminder: this is without enema)) hope you find the answers you are looking for!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[crickit715]

on occasion my daughter will have a "blow out"...(in the cf world that is a super-large mushy bowel movement, usually orange/yellow in color) when this happens i notice what i call "spider webs" throughout the stool....white stringy stuff. her doc told me this was excess mucus. she doesnt go the the potty yet, so i really dont know how this would appear in the potty. ((reminder: this is without enema)) hope you find the answers you are looking for!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[crickit715]

on occasion my daughter will have a "blow out"...(in the cf world that is a super-large mushy bowel movement, usually orange/yellow in color) when this happens i notice what i call "spider webs" throughout the stool....white stringy stuff. her doc told me this was excess mucus. she doesnt go the the potty yet, so i really dont know how this would appear in the potty. ((reminder: this is without enema)) hope you find the answers you are looking for!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[jmom]

Thank you, Ricki, for replying. Your daughter looks so sweet and I will keep her in prayers. Any insight and experience is appreciated.

 

[jmom]

Thank you, Ricki, for replying. Your daughter looks so sweet and I will keep her in prayers. Any insight and experience is appreciated.

 

[jmom]

Thank you, Ricki, for replying. Your daughter looks so sweet and I will keep her in prayers. Any insight and experience is appreciated.

 

[Eden]

jmom, DS has had the "white bubble bath" also, along with what looks like very thin mucus floating around edges of toilet bowl and floating thin pieces of tissue, usually orange or yellow colored. Sorry TMI. I've given up on the GI doctor, because although DS was down in weight again, he said let's take a "wait and see" approach. He's fired, I'll look for a new GI. It seems since his prep for the colonoscopy (miralax for 2 days, completely cleared him out) his stools have been better. Of course he started 1st grade on Aug. 10th (too early) and I don't pick him up until 6pm, so I don't get to see how his stools are unless he goes at home. I'm starting to think that maybe it wasn't malabsorption, but he's had these stools since he stopped breastfeeding almost 5 years ago. Have you ever experienced that after the colonoscopy prep or enema that the stools are more normal for a few days/weeks? Or have you ever seen any of the other stuff? Let me know if you find out what the "white bubble bath" is. I have pictures of everything that I'm going to show to the new GI doctor and I'll let you know if I find out anything.

 

[Eden]

jmom, DS has had the "white bubble bath" also, along with what looks like very thin mucus floating around edges of toilet bowl and floating thin pieces of tissue, usually orange or yellow colored. Sorry TMI. I've given up on the GI doctor, because although DS was down in weight again, he said let's take a "wait and see" approach. He's fired, I'll look for a new GI. It seems since his prep for the colonoscopy (miralax for 2 days, completely cleared him out) his stools have been better. Of course he started 1st grade on Aug. 10th (too early) and I don't pick him up until 6pm, so I don't get to see how his stools are unless he goes at home. I'm starting to think that maybe it wasn't malabsorption, but he's had these stools since he stopped breastfeeding almost 5 years ago. Have you ever experienced that after the colonoscopy prep or enema that the stools are more normal for a few days/weeks? Or have you ever seen any of the other stuff? Let me know if you find out what the "white bubble bath" is. I have pictures of everything that I'm going to show to the new GI doctor and I'll let you know if I find out anything.

 

[Eden]

jmom, DS has had the "white bubble bath" also, along with what looks like very thin mucus floating around edges of toilet bowl and floating thin pieces of tissue, usually orange or yellow colored. Sorry TMI. I've given up on the GI doctor, because although DS was down in weight again, he said let's take a "wait and see" approach. He's fired, I'll look for a new GI. It seems since his prep for the colonoscopy (miralax for 2 days, completely cleared him out) his stools have been better. Of course he started 1st grade on Aug. 10th (too early) and I don't pick him up until 6pm, so I don't get to see how his stools are unless he goes at home. I'm starting to think that maybe it wasn't malabsorption, but he's had these stools since he stopped breastfeeding almost 5 years ago. Have you ever experienced that after the colonoscopy prep or enema that the stools are more normal for a few days/weeks? Or have you ever seen any of the other stuff? Let me know if you find out what the "white bubble bath" is. I have pictures of everything that I'm going to show to the new GI doctor and I'll let you know if I find out anything.

 

[jmom]

Eden-
I am so sorry to hear that you are nowhere in your diagnosis of your son. Let's please keep in touch (I'll send this same note in a private message to you too). Your child and mine have MANY, MANY of the same puzzling GI symptoms and have had so many similar tests and guesses from the doctors! I feel like we are friends, or at least comrades in some sort of battle on behalf of our precious children!
The white bubble bath...You know, sometimes you just have to laugh because after describing this to both my daughter's pediatrician and her GI specialist and they looked at me blankly and said they have never ever heard a mom describe this before, I finally took a photo of it and a sample and brought it in to the GI doc. This surely caught his attention and he sent a sample of the "bubbles" to pathology (who had no idea what it was).
I have seen the same "floating thin pieces of tissue orange or yellow" too! Never knew exactly how to describe it, but yes, I would describe it like you do. And thin layer of mucus floating to the edge of the toilet.
I, like you, ask myself if this is irritable bowl or food sensitivity, but my daughter has been to a food allergy specialist and has no food allergies that I know of, and she has been tested negative for celiacs like your son w/endoscopy and blood test. The only thing I have noticed is that cheese and peanut butter affect her, but this would tie in with her positive fat malabsorption test. But on this one I'm confused, because she's had one positive and one negative. How did your son's fat malabsorption test come out? Which one was it, because the 72-hour is much more accurate than the one-time collection.
To answer your colonscopy prep question, the doc told me that for a week after this procedure, they tend to get more constipated, so this may answer why he is not so loose in his bowel movements. Aren't colonoscopy preps a blast??? My daughter's been through three in one year for significant bleeding!
On the sweat test you had done: When we got our medical records on my daughter's sweat test, it said, and I quote, "As of March, 2010, according to new CF guidelines, we recommend repeating a negative sweat test if symptoms persist." You might want to consider talking the docs into repeating this test, and you can quote me if you wish. This was "Valley Children's Hospital" in Madera, California's CF sweat test guidelines if you need ammunition.
Sorry message is so long, but I truly wish you and your son the best in figuring everything out. Again, let's keep in touch!

 

[jmom]

Eden-
I am so sorry to hear that you are nowhere in your diagnosis of your son. Let's please keep in touch (I'll send this same note in a private message to you too). Your child and mine have MANY, MANY of the same puzzling GI symptoms and have had so many similar tests and guesses from the doctors! I feel like we are friends, or at least comrades in some sort of battle on behalf of our precious children!
The white bubble bath...You know, sometimes you just have to laugh because after describing this to both my daughter's pediatrician and her GI specialist and they looked at me blankly and said they have never ever heard a mom describe this before, I finally took a photo of it and a sample and brought it in to the GI doc. This surely caught his attention and he sent a sample of the "bubbles" to pathology (who had no idea what it was).
I have seen the same "floating thin pieces of tissue orange or yellow" too! Never knew exactly how to describe it, but yes, I would describe it like you do. And thin layer of mucus floating to the edge of the toilet.
I, like you, ask myself if this is irritable bowl or food sensitivity, but my daughter has been to a food allergy specialist and has no food allergies that I know of, and she has been tested negative for celiacs like your son w/endoscopy and blood test. The only thing I have noticed is that cheese and peanut butter affect her, but this would tie in with her positive fat malabsorption test. But on this one I'm confused, because she's had one positive and one negative. How did your son's fat malabsorption test come out? Which one was it, because the 72-hour is much more accurate than the one-time collection.
To answer your colonscopy prep question, the doc told me that for a week after this procedure, they tend to get more constipated, so this may answer why he is not so loose in his bowel movements. Aren't colonoscopy preps a blast??? My daughter's been through three in one year for significant bleeding!
On the sweat test you had done: When we got our medical records on my daughter's sweat test, it said, and I quote, "As of March, 2010, according to new CF guidelines, we recommend repeating a negative sweat test if symptoms persist." You might want to consider talking the docs into repeating this test, and you can quote me if you wish. This was "Valley Children's Hospital" in Madera, California's CF sweat test guidelines if you need ammunition.
Sorry message is so long, but I truly wish you and your son the best in figuring everything out. Again, let's keep in touch!

 

[jmom]

Eden-
<br /> I am so sorry to hear that you are nowhere in your diagnosis of your son. Let's please keep in touch (I'll send this same note in a private message to you too). Your child and mine have MANY, MANY of the same puzzling GI symptoms and have had so many similar tests and guesses from the doctors! I feel like we are friends, or at least comrades in some sort of battle on behalf of our precious children!
<br /> The white bubble bath...You know, sometimes you just have to laugh because after describing this to both my daughter's pediatrician and her GI specialist and they looked at me blankly and said they have never ever heard a mom describe this before, I finally took a photo of it and a sample and brought it in to the GI doc. This surely caught his attention and he sent a sample of the "bubbles" to pathology (who had no idea what it was).
<br /> I have seen the same "floating thin pieces of tissue orange or yellow" too! Never knew exactly how to describe it, but yes, I would describe it like you do. And thin layer of mucus floating to the edge of the toilet.
<br /> I, like you, ask myself if this is irritable bowl or food sensitivity, but my daughter has been to a food allergy specialist and has no food allergies that I know of, and she has been tested negative for celiacs like your son w/endoscopy and blood test. The only thing I have noticed is that cheese and peanut butter affect her, but this would tie in with her positive fat malabsorption test. But on this one I'm confused, because she's had one positive and one negative. How did your son's fat malabsorption test come out? Which one was it, because the 72-hour is much more accurate than the one-time collection.
<br /> To answer your colonscopy prep question, the doc told me that for a week after this procedure, they tend to get more constipated, so this may answer why he is not so loose in his bowel movements. Aren't colonoscopy preps a blast??? My daughter's been through three in one year for significant bleeding!
<br /> On the sweat test you had done: When we got our medical records on my daughter's sweat test, it said, and I quote, "As of March, 2010, according to new CF guidelines, we recommend repeating a negative sweat test if symptoms persist." You might want to consider talking the docs into repeating this test, and you can quote me if you wish. This was "Valley Children's Hospital" in Madera, California's CF sweat test guidelines if you need ammunition.
<br /> Sorry message is so long, but I truly wish you and your son the best in figuring everything out. Again, let's keep in touch!