Re: Redundant Colon/HELP

[Guest guest]

, and others:

Here is what happened at CHOP on Thursday. After meeting with the gastroenterologist, he indicated that the physicians here had us using Miralax incorrectly. Drew was doing well on other means: enzymes, probiotics, supplements, aloe juice but he must have had a bacteria/yeast issue when we were on vacation and then we took a u-turn again. This is where he got blocked back up again and I was using Miralax intermittently. I was NEVER told to completely clean him out before using this!!!!! We have had to fleet him rectally for the past 4 days and we will have to do it again today. He said that the process is: completely empty the colon, medicate, and sit for at least 3 minutes 3 times a day and push. Well, we were doing 2 out of the 3. He said that Miralax does not work on old stool only new stool. He said that I could give him a gallon of Miralax and it wouldn't help what is in his colon right now. And now that we know he has a redundant colon (excess colon) he has more loops and turns to make to get it out and he is more susceptible to having constipation issues. When I told him about the behavior problems and the urinary problems that we had while on Miralax, he indicated to me that Miralax is not absorbed into the body..... well I beg to differ but I could see that I would be beating a dead horse with this issue with him. What if you have leaky gut as I suspect with Drew? Of course this is not a belief any 'doctor' will recognize is it? I am sooooo torn with what to do. I asked about using Mag oxide since the properties transfer it from an osmotic to a hyperosmotic and should retain water in the stool like Miralax. He still indicated that all mags are laxatives and not to give this to him.

We have to keep his stool like chocolate pudding ALL the time or we will have problems with him. His body has to grow into his colon since the colon stops growing between ages 2-4. If it doesn't get better within the next 3 years (when he is 7), then we may need to look at removing the excess colon to help with the constipation. I am still so confused and disgusted now that I know he has a physical problems to add to this mess.

What do you think? Thanks!

Jackie--

PS: I am thinking of adding ViralStop to his protocol since when reading about this, they indicate that this enzyme will help with chronic constipation.

,That cloudiness can be calcium oxalate crystals. The oxalate may be a product of the PEG that is what Miralax is. At any rate, it may be useful to you to subscribe to Trying_Low_Oxalates to learn about what is changing in children when they reduce their child's exposure to oxalates.A lot of the children are seeing changes in urinary habits. Just come and hear the stories...At 10:00 AM 9/2/2005 -0700, you wrote:>Hi ,>>I have to admit that I've let the posts pile up unread, so thanks for >responding to my query even if you've already talked about this on the board.>>My daughter's pattern is not quite as bad as your son's, in that she isn't >holding back to the point of all but exploding, but only goes (unless >prompted) when she is very full. There have been times she's needed my >husband to carry her up the stairs (we live in a townhouse with only one >bathroom, upstairs), either because she can't or because (from what I >would guess) she's holding herself so tight trying not to flood. There are >also times she gets very upset if we tell her to use the bathroom when she >doesn't "need to" go, but usually she urinates a fair amount when we >finally convince her to "try.">>She doesn't get UTI's (I think she's had one in her life and she's 7 1/2), >although her urine is often cloudy. I will be calling my pediatrician's >office later to ask about whether we need to get an ultrasound, as I don't >know if they'll authorize it if she isn't having symptoms (other than huge >capacity).>>Thanks for your input.>>>> Cohen wrote:>> and Jackie ->>>>I had to jump in on this issue. If you read back through my posts, I had >>the same issue (and still do) with my son Sammy. He will hold back until >>he's just about wetting his pants, and most times it's like he forces >>himself to not go (faces, face gets red/eyes watery). He'll even get >>goosebumps, and tell me that he's just cold!>>>>He was dx'd with stage 1 hydronephrosis (urine retention of the kidneys); >>however, it was determined by VCUG that there are no structural >>abnormalities causing reflux. That had all started when, after mostly >>dry nights and some totally dry ones, he started blasting through his >>pullups, the towels under them, and all his sheets, sometime 2-3 pullups >>a night.>>>>That has subsided and we've only had one similar instance in the last few >>months. I found that if I cut off his liquids around 2 hrs or so before >>bedtime we do very well. He still has wet pullups, but nothing near the >>output he previously had.>>>>Please have an ultrasound of your daughters kidneys done. You need to >>have them do the one that differentiates between hot and cold (red/blue) >>so that they can see the area of the kidney and/or ureters where "stale" >>urine may be trapped (it shows up as blue).>>>>Does your daughter get frequent urinary infections or periods of frequency?>>>>>>>> Brattin wrote:>>Hi Jackie,>>>>This is the first I've seen any mention of increased bladder capacity and >>related problems coming from Miralax. What can you tell me about this? >>Our daughter seems to have quite a "tank" if you know what I mean, and >>doesn't seem to feel the need to "go" till it's close to crisis.>>>>Thanks.>>>>>>>>Jackie Hines wrote:>>Hi! I just wanted to pick some brains and vent a little...... Drew (4.5 >>yo) hypotonia & verbal/oral motor dyspraxia, was on Miralax for over a >>year with Benefiber and experienced additional problems such as horrible >>behavior problems to voiding problems with urine after 4 months on it and >>progressively got worse by the time he was on it a year (only voiding >>every 24-30 hrs & bladder held over 435cc---which I believe was a side >>effect of the Miralax being used EVERY DAY!).>>>>We had stopped the Miralax back in April and added many supplements & >>enzymes with success initially and then occasionally I would have to use >>Crystalose and/or Miralax prn in the past 3 months... I finally had >>gotten an appointment at CHOP (Phila) and the first thing they said was, >>"Did he have a abdominal and Barium Enema?" I said, "No." and they said >>he had to have one before coming on Sept 1st. My ped would not order the >>BE because they did not think he had Hirschprung's even after I told them >>CHOP required this before we came. I didn't even ask the local ped >>gastroenterologist because he just thought it was 'stool withholding >>behavior' problem.... and didn't even bother to do anything but increase >>his beneifer and Miralax protocol----I fired him. So, I took Drew to >>'s (6 yo PDD-NOS) DAN! doctor who is also a family dr. He ordered >>the test, we had it on Tuesday and I have all of the films and the >>radiologists results of the test too.>>>>He apparently has a redundant colon which is excessive colon and the >>radiologist indicated that his colon was 'quite redundant'. They wanted >>me to prep him by giving him a liquid diet the day before and give him >>Children's Senokot..... I knew this wouldn't work and he did not have a >>BM and was FULL of sh-- more than I expected to see since he did poop in >>the potty on Sat PM. I AM soooooo pis--- about the fact that I had to >>travel almost 2 hours to a DAN! doctor to get a script to r/o a physical >>problem for my child and this appears to be why my child has a slow >>digestive tract!!! We had to fleet him again last night because when we >>went back to make certain he pooped out the barium......the x-ray showed >>a significant amount left in there. I think we will have to get another >>abdominal xray to see if he got it out, because I don't think he did. He >>got another good mass out last night, but I just don't know if it is >>all..... and that barium CANNOT be left in there!>>>>Anyway.... I hope all of you have had a least the basic tests done to >>determine this there is a physical problem or not with your child. I >>cannot tell you how angry I am that we have been dealing with >>constipations issues since 2 months of age and when it got worse at 3 yrs >>old, they should have done more to investigate it. People wonder why >>parents don't like physicians....... well, they just don't listen to >>parents!!! We know our kids best and when they don't listen to what we >>are saying, they ought to be fired!!!>>>>Gotta run and get ready to drive two hours to Children's Hospital of >>Philadelphia..... and I need to find a new pediatrician who will listen >>to what I have to say about both of my kids!>>>>Jackie Hines>>Mom, educator and advocate to & Drew>>Lititz, PA>>>>>"In God We Trust - All Others Bring Data!" - W. Deming>>>>·´¯`·.,¸¸,.»§«.,¸¸,.·´¯`·.,¸¸,.»§«.,¸¸,.·´¯`·.,¸¸,.»§«.,¸¸,.·´¯`·.,¸¸,.»§« >>.,¸¸,.·´¯`·.,¸¸,.»§«.,¸¸,.>>>>__________________________________________________>>

[Guest guest]

Hi Jackie! FWIW, Ethan's barium x ray when he was about four or so,

showed the excess colon, too. His colon had extra length and at

least one extra " turn " , however, you know, I'm not buying the

argument that the length of the colon itself is going to be

the " cause " of the constipation...that is, if you look at the length

of any colon, normal or not, it is a pretty amazing feat that the

food gets digested and moved along the entire length of the colon and

out the rectum, isn't it? I mean, when you stop and think about a

normal body, normal function, normal colon length...that's one pretty

long trek... adding a bit extra and an extra turn really shouldn't

account for the complete constipation that some of these kids

experience, because the colon, if working properly, is contracting

and moving the food along, regardless of the length, kwim? SO I

think the extra colon length is just one factor in constipation, but

not the whole story.

I don't know if Ethan grew out of the excess colon or not... we never

did have him x-rayed again, so I don't know if it's still there or

not. He began having normal bowel movements after we began

chelating, sometime during his kindergarten year I think... and we

had been keeping his stool coming through on a daily basis using what

he was asking for (remember his story was that he said the stools

were now so " hot " after miralax that he wanted a " cool squirt "

everyday to get it out, i.e. a squirt of enema). Anyhow, I agree

that you've probably got to keep the stool soft to keep the colon

from expanding and becoming megacolon. Whether or not it has to be

chocolate pudding soft... I don't know... I would say ideally it

would be smooth with some form/shape to it in the water.

It's good that they talked to you about doing some cleanout before

going on miralax...I was talking to a woman today who echo'd the same

thing...that she knows of a place where they tell the parents that if

you are going to use the miralax, they've got to get stool OUT on a

daily basis, otherwise it is building up inside of them.

Somewhere I will have to find those articles that talked about how

large molecular weights did pass through the gut of people with

either food allergies or eczema. It wasn't the entire length of the

colon that was 'leaky', just a portion of it.

The doc has to know that on the miralax pamphlet itself (I'm pretty

sure it says this--anyone who has a pamphlet packet on the bottle,

check it and let me know), it discusses how in normal persons, they

recovered 100 percent of the product, but in persons with

constipation, recovery rate was inconsistent and highly variable.

Which makes me ask, if they couldn't recover it in the stool, where

the heck was it? Where did it go if it didn't come out? How could

they recover it in non-constipated individuals and not in constipated

ones? Kwim? Those questions beg to be answered. So while he says

it isn't absorbable, I think he needs to think about it and wonder

along with me... where is it... what about the research that says

that people with certain conditions CAN have high degrees of

intestinal permeability...

As far as surgery...only cross that bridge if you are certain that it

will help. Research it WELL in advance and make certain that it is

the right solution. Because if gut motility is the real problem and

not the length of the colon, then removing part of the colon isn't

going to help gut motility, kwim? Things will get backed up no

matter how short or long the colon is.

W

> , and others:

> Here is what happened at CHOP on Thursday. After meeting with the

gastroenterologist, he indicated that the physicians here had us

using Miralax incorrectly. Drew was doing well on other means:

enzymes, probiotics, supplements, aloe juice but he must have had a

bacteria/yeast issue when we were on vacation and then we took a u-

turn again. This is where he got blocked back up again and I was

using Miralax intermittently. I was NEVER told to completely clean

him out before using this!!!!!

[Guest guest]

Absolutely! I didn't know that there was a DAN list! We fleeted again tonight and I am still not certain if we got all of the barium out. Stool was kind of orange tonight. BE on Tuesday fleeted on Wed, Thurs, Fri and today. No dark stool yet.

Thanks for your help! Jackie---

Jackie,May I forward your doctor's comments to the DAN doctors list? I would like their take on his advice....At 09:23 AM 9/4/2005 -0400, you wrote:>, and others:>Here is what happened at CHOP on Thursday. After meeting with the >gastroenterologist, he indicated that the physicians here had us using >Miralax incorrectly. Drew was doing well on other means: enzymes, >probiotics, supplements, aloe juice but he must have had a bacteria/yeast >issue when we were on vacation and then we took a u-turn again. This is >where he got blocked back up again and I was using Miralax >intermittently. I was NEVER told to completely clean him out before using >this!!!!! We have had to fleet him rectally for the past 4 days and we >will have to do it again today. He said that the process is: completely >empty the colon, medicate, and sit for at least 3 minutes 3 times a day >and push. Well, we were doing 2 out of the 3. He said that Miralax does >not work on old stool only new stool. He said that I could give him a >gallon of Miralax and it wouldn't help what is in his colon right >now. And now that we know he has a redundant colon (excess colon) he has >more loops and turns to make to get it out and he is more susceptible to >having constipation issues. When I told him about the behavior problems >and the urinary problems that we had while on Miralax, he indicated to me >that Miralax is not absorbed into the body..... well I beg to differ but I >could see that I would be beating a dead horse with this issue with >him. What if you have leaky gut as I suspect with Drew? Of course this >is not a belief any 'doctor' will recognize is it? I am sooooo torn with >what to do. I asked about using Mag oxide since the properties transfer >it from an osmotic to a hyperosmotic and should retain water in the stool >like Miralax. He still indicated that all mags are laxatives and not to >give this to him.>We have to keep his stool like chocolate pudding ALL the time or we will >have problems with him. His body has to grow into his colon since the >colon stops growing between ages 2-4. If it doesn't get better within the >next 3 years (when he is 7), then we may need to look at removing the >excess colon to help with the constipation. I am still so confused and >disgusted now that I know he has a physical problems to add to this mess.>>What do you think? Thanks!>>Jackie-->PS: I am thinking of adding ViralStop to his protocol since when reading >about this, they indicate that this enzyme will help with chronic >constipation.>>>,>>That cloudiness can be calcium oxalate crystals. The oxalate may be a>product of the PEG that is what Miralax is. At any rate, it may be useful>to you to subscribe to ><mailto:Trying_Low_Oxalates >Trying_Low_Oxalates@yahoogroups >.com to learn about>what is changing in children when they reduce their child's exposure to>oxalates.>>A lot of the children are seeing changes in urinary habits. Just come and>hear the stories...>>>>At 10:00 AM 9/2/2005 -0700, you wrote:> >Hi ,> >> >I have to admit that I've let the posts pile up unread, so thanks for> >responding to my query even if you've already talked about this on the > board.> >> >My daughter's pattern is not quite as bad as your son's, in that she isn't> >holding back to the point of all but exploding, but only goes (unless> >prompted) when she is very full. There have been times she's needed my> >husband to carry her up the stairs (we live in a townhouse with only one> >bathroom, upstairs), either because she can't or because (from what I> >would guess) she's holding herself so tight trying not to flood. There are> >also times she gets very upset if we tell her to use the bathroom when she> >doesn't "need to" go, but usually she urinates a fair amount when we> >finally convince her to "try."> >> >She doesn't get UTI's (I think she's had one in her life and she's 7 1/2),> >although her urine is often cloudy. I will be calling my pediatrician's> >office later to ask about whether we need to get an ultrasound, as I don't> >know if they'll authorize it if she isn't having symptoms (other than huge> >capacity).> >> >Thanks for your input.> >> >> >> > Cohen wrote:> >> and Jackie -> >>> >>I had to jump in on this issue. If you read back through my posts, I had> >>the same issue (and still do) with my son Sammy. He will hold back until> >>he's just about wetting his pants, and most times it's like he forces> >>himself to not go (faces, face gets red/eyes watery). He'll even get> >>goosebumps, and tell me that he's just cold!> >>> >>He was dx'd with stage 1 hydronephrosis (urine retention of the kidneys);> >>however, it was determined by VCUG that there are no structural> >>abnormalities causing reflux. That had all started when, after mostly> >>dry nights and some totally dry ones, he started blasting through his> >>pullups, the towels under them, and all his sheets, sometime 2-3 pullups> >>a night.> >>> >>That has subsided and we've only had one similar instance in the last few> >>months. I found that if I cut off his liquids around 2 hrs or so before> >>bedtime we do very well. He still has wet pullups, but nothing near the> >>output he previously had.> >>> >>Please have an ultrasound of your daughters kidneys done. You need to> >>have them do the one that differentiates between hot and cold (red/blue)> >>so that they can see the area of the kidney and/or ureters where "stale"> >>urine may be trapped (it shows up as blue).> >>> >>Does your daughter get frequent urinary infections or periods of frequency?> >>> >>> >>> >> Brattin wrote:> >>Hi Jackie,> >>> >>This is the first I've seen any mention of increased bladder capacity and> >>related problems coming from Miralax. What can you tell me about this?> >>Our daughter seems to have quite a "tank" if you know what I mean, and> >>doesn't seem to feel the need to "go" till it's close to crisis.> >>> >>Thanks.> >>> >>> >>> >>Jackie Hines wrote:> >>Hi! I just wanted to pick some brains and vent a little...... Drew (4.5> >>yo) hypotonia & verbal/oral motor dyspraxia, was on Miralax for over a> >>year with Benefiber and experienced additional problems such as horrible> >>behavior problems to voiding problems with urine after 4 months on it and> >>progressively got worse by the time he was on it a year (only voiding> >>every 24-30 hrs & bladder held over 435cc---which I believe was a side> >>effect of the Miralax being used EVERY DAY!).> >>> >>We had stopped the Miralax back in April and added many supplements & > >>enzymes with success initially and then occasionally I would have to use> >>Crystalose and/or Miralax prn in the past 3 months... I finally had> >>gotten an appointment at CHOP (Phila) and the first thing they said was,> >>"Did he have a abdominal and Barium Enema?" I said, "No." and they said> >>he had to have one before coming on Sept 1st. My ped would not order the> >>BE because they did not think he had Hirschprung's even after I told them> >>CHOP required this before we came. I didn't even ask the local ped> >>gastroenterologist because he just thought it was 'stool withholding> >>behavior' problem.... and didn't even bother to do anything but increase> >>his beneifer and Miralax protocol----I fired him. So, I took Drew to> >>'s (6 yo PDD-NOS) DAN! doctor who is also a family dr. He ordered> >>the test, we had it on Tuesday and I have all of the films and the> >>radiologists results of the test too.> >>> >>He apparently has a redundant colon which is excessive colon and the> >>radiologist indicated that his colon was 'quite redundant'. They wanted> >>me to prep him by giving him a liquid diet the day before and give him> >>Children's Senokot..... I knew this wouldn't work and he did not have a> >>BM and was FULL of sh-- more than I expected to see since he did poop in> >>the potty on Sat PM. I AM soooooo pis--- about the fact that I had to> >>travel almost 2 hours to a DAN! doctor to get a script to r/o a physical> >>problem for my child and this appears to be why my child has a slow> >>digestive tract!!! We had to fleet him again last night because when we> >>went back to make certain he pooped out the barium......the x-ray showed> >>a significant amount left in there. I think we will have to get another> >>abdominal xray to see if he got it out, because I don't think he did. He> >>got another good mass out last night, but I just don't know if it is> >>all..... and that barium CANNOT be left in there!> >>> >>Anyway.... I hope all of you have had a least the basic tests done to> >>determine this there is a physical problem or not with your child. I> >>cannot tell you how angry I am that we have been dealing with> >>constipations issues since 2 months of age and when it got worse at 3 yrs> >>old, they should have done more to investigate it. People wonder why> >>parents don't like physicians....... well, they just don't listen to> >>parents!!! We know our kids best and when they don't listen to what we> >>are saying, they ought to be fired!!!> >>> >>Gotta run and get ready to drive two hours to Children's Hospital of> >>Philadelphia..... and I need to find a new pediatrician who will listen> >>to what I have to say about both of my kids!> >>> >>Jackie Hines> >>Mom, educator and advocate to & Drew> >>Lititz, PA> >> >>> >>"In God We Trust - All Others Bring Data!" - W. Deming> >>> >>·´¯`·.,¸¸,.»§«.,¸¸,.·´¯`·.,¸¸,.»§«.,¸¸,.·´¯`·.,¸¸,.»§«.,¸¸,.·´¯`·.,¸¸,.»§«> >>.,¸¸,.·´¯`·.,¸¸,.»§«.,¸¸,.> >>> >>__________________________________________________> >>

[Guest guest]

Oh, that reminds me--I forgot about the part about the barium...

after Ethan's barium enema, I remembered that an adult friend I had--

she had told me that she had a barium enema, and she passed white

stools for a couple of days afterwards. I remember being concerned

because here, Ethan had the barium enema, and I didn't really see any

barium coming out of him. All I saw was brown stool. Maybe the

first one was a bit light but certainly not " white " like what my

friend had said. So where did it go?? The friend I have in

Illinois, I think her daughter was the same way, and I think when she

did the hair analysis, her daughters barium level was very high,

years later. Did you/anyone ever see the whitish stool with your

child?

W

> Absolutely! I didn't know that there was a DAN list! We fleeted

again tonight and I am still not certain if we got all of the barium

out. Stool was kind of orange tonight. BE on Tuesday fleeted on

Wed, Thurs, Fri and today. No dark stool yet.

>

> Thanks for your help! Jackie---

> Jackie,

>