January 30, 2010

Laxatives, Irrigations, and Probiotics --Oh my



Anyone that knows anything about Hirschsprungs Disease can tell you the facts. The first fact is that every child with this disorder requires an operation to remove the part of the colon that does not work properly, leaving the child with a shorter than normal colon. Since Dylan has had 3 operations, the first 2 operations in the first year of his life, his colon is rather short. He approximately has a third of his colon left. This causes him to have diareaha like bowel movements because the large intestine is responsible for absorbing the water and turning stool into a solid form. As of lately his bowel movements have slowed down. My last post was about a possible partial obstruction caused by his slower than normal motility and my mistake of giving him popcorn.

After trying an irrigation and Dylan vomitting once, he began to feel a bit better, but his bowel movements still were not normal. He wasnt passing enough on his own to fully empty which causes him to get sick and backed up. I contacted the nurse that handles Dylan's case at Cincinnati, filled her in on what was going on, and asked for her opinion of trying a laxative. With the confirmation that it would be safe, we tried exlax. We were told to try 1 square, if he didnt empty on his own within 24 hours to try an irrigation and then up the dose to 2 squares. Dylan is one of those children who goes into fits at just the sight of a medicine bottle, so luckily I hid the package that the exlax came in, and handed him a chocolate square. Much to my surprise he gobbled it down and wanted more!!!!!!!.....The exlax did work, slowly he began emptying a bit at a time, 24 hours later though, he still wasnt emptying like he should, so I did another irrigation. During this time he lost 2 pounds, which shows that his colon was with holding alot of stool. The exlax caused him to have a nasty rash on his bottom that bled, so we have since stopped giving him that.

But I am now doing irrigation ever few days, just to help his colon empty. We have also tried some probiotics. Probiotics will help put some "healthy" bacteria in the colon. So yet again we are back to trial and error trying to figure out this puzzle....Will we ever figure it out? Will Dylan ever be well enough to just be able to live a normal life without irrigations, or medicines? I guess that all depends on the results of the trial and error methods we try. Until then, we have hit the "motility" road block and are not sure what to do.

13 comments:

  1. I too have a 2 yr old child that was born at 25 week 1lb 10oz. He had NEC surgery shortly after birth. He now suffers from blocked colon and we are trying Mulax and And suppositories but nothing seems to be working. The Dr. don't really seem to have a good plan. Does anyone know what I could ask them to do as far as testing? I just think if he has a short cut the scar tissue could be playing a factor or something.

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  2. I just found you blog via FB. I too have a son with Hirschsprungs. Tyler is 3 months old. He has had the pull through, but has already been back in the hospital with stomach distention. Hydration & antibiotics for fear of entercolitis. We are doing irrigations as needed and 2 dialations a day.

    It is nice that you have given me an idea of the road ahead of us. THank you for sharing.

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  3. To the anonymous poster, there are some links to the left of this blog about Hirschsprungs Disease, also a description at the left top explaining what Hirschsprungs is. Chronic constipation is a sign of HD. Do some research on it, and ask your dr to refer you to a specialist or ped surgeon that can rule it out.

    Colleen, not every childs story is the same. I dont want my blog to make new HD parents think they have a rough road ahead of them, cause its not all the same. There are success stories out there, and I know several HD mothers whos children are doing rather well...The first few years are the most "trying"...but things get better, and each kid is different. Things have been rough for us, but this blog is going to be the beginning of our success story! Dont lose hope, and always be positive.

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  4. I hear you on the trial and error thing. We just had a month of laxatives (senna) now off them and seeing nutritionist to help us w/ slowing down his motility (our son lost 30% of his colon)....
    one day at a time!!!!!!!!!!!

    Good Luck,
    Brenda
    www.josephweiss.com

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  5. Hi Catrina - keep on trudging along hun, you're doing such a great job of such a hard situation. You're an absolute treasure and one day Dylan will know just how important your role as a smart, dilligent Mummy has been to him.

    x

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  6. Thanks so much Karla, you are very sweet and I needed to here exactly what you said...Means alot to me!!!

    Brenda, we are still having issues with irrigations....one day at a time, thats all we can do and hope for the best!

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  7. My husband and I are in a fix as to what is going on with our four year old son. It started out as "we thought" was "chronic constipation", as so told by us by our well respected family doc.(Needless to say not anymore!!!) But we moved to another town and we took my son to the family doc there and first thing he said to us after I told him the history of my son's GI problems he said he didn't want to scare me but he thought it may be Hirschsprung's Disease. I was MORTIFIED. So he referred me to a peds surgeon in Des Moines IA and we are about to do the biopsy to either rule it out or find it to be true. I am sooo very scared what the outcome will be, but at the same time AM SOOOO relieved that I actually FINALLY have a doc who sat down listened and is doing something to help my son and to help my husband and I to understand the testing what it is for and inform us what the next step is from here. I will create my own blog as well through my journey as a stepping stone for us and a knowledge tree for mothers out there fighting this same battle! If we all do this there will be a stronger voice heard. GOD BLESS YOU ALL and a safe journey for our children. 7/28/10

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  8. God bless our little angels. My 2 yr old has JD and pull thru at 1 week old. The usual constant diaper rash, diahrea-like stools and multiple dispets a day some days. Entetcolitis twice, once at 9 months and one recently. We wished we could help all of these children just get well overnight, so I share our successes and findings:
    RASHES - rinse at every change with a cotton ball/pad with water and calendula oil (oil base not alcohol base, pls check!). A small spray bote wks grt w water and the calendula oil. Dry very well and use coconut oil (100% coconut oil) its hard like vaseline but wipes on soft. Comes in a tub.
    PROBIOTICS - they help a great deal! Most importantly, if you do irrigations, it replenishes the imp. good bacteria washed away! Florastor kids had worked best for us.
    IRRIGATIONS - we learned the hard way that the catheter has to in deeper than a finger length! Double check with your doctor/specialist to make sure you are doing them correctly. Pushing saline in as you push catheter is very helpful.
    DIET- blending fibrous foods into baby food consostency served w solid items (pasta, rice, easy to diggest veges, etc) helps a lot until the little one gets a bit older and shows improvement over bowel issues.
    DOCTOR- if your child has HD, any issues you should contact your child's surgeon or specialist and not only your pediatrician. We were wrongfully diagnosed for weeks with stomack virus while our son was dieing with hirschsprung's related entercolitis!
    Push for the tests you know your child needs (usually xrays and blood work). Educate yourself on the subject by researchinh medical journals and clinical trials. Cincinnatti Childten's Hospital has leading specialists on HD and other motility disorders. Call them. They have great resourcrs to parents.

    WATER- it is oh so crucial that our special little ones drink more water than the average child. It helps everything "move along" ;-)

    You are all in our prayers. Hang in there. Enjoy your children and remember: time will make things better if not perfect... Just like our children.

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  9. Correction: our angel had "HD" (Hirschsprungs desease) not JD... Typo.

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  10. My niece had this condition from birth . She is now 11 years old! Her Mom was reluctant for her to gave an operation to correct the procedure because she'd already lost a child this way. My Sis lives in Nigeria where medical facilities are not that good.
    About 8 months ago she rang me me (I live in the UK) to tell me she had a break thru with my niece and that for the 1st time since her birth she is stooping properly.
    I was so excited. I asked what had happened. She said a colleague of hers whh had the same problem stumbled on a cure by accident.
    She had started to eat coconuts and found that she could go without having to induce herself.
    My sis decided to try this out on my niece by introducing fresh coconut into her diet , and that was it!
    Just like that, my niece started going regularly.
    Prior to this, my Sis had to pump her to make her go.
    And my nieces belly was big.
    I saw her this Christmas when I visited and her belly is flatter and she goes to toilet without any help.
    This may not help everyone, but I thought I would share this as it's worth a try.
    My sis said coconut oil is also very good!

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    Replies
    1. How early did she stay that? My son is 2 months old and had surgery when he was 8 days old for it.

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  11. My niece had this condition from birth . She is now 11 years old! Her Mom was reluctant for her to gave an operation to correct the procedure because she'd already lost a child this way. My Sis lives in Nigeria where medical facilities are not that good.
    About 8 months ago she rang me me (I live in the UK) to tell me she had a break thru with my niece and that for the 1st time since her birth she is stooping properly.
    I was so excited. I asked what had happened. She said a colleague of hers whh had the same problem stumbled on a cure by accident.
    She had started to eat coconuts and found that she could go without having to induce herself.
    My sis decided to try this out on my niece by introducing fresh coconut into her diet , and that was it!
    Just like that, my niece started going regularly.
    Prior to this, my Sis had to pump her to make her go.
    And my nieces belly was big.
    I saw her this Christmas when I visited and her belly is flatter and she goes to toilet without any help.
    This may not help everyone, but I thought I would share this as it's worth a try.
    My sis said coconut oil is also very good!

    ReplyDelete
  12. Thanks a lot for this post. Laxatives is a good way to lose weight healthy way if done in right way, but most of the people take wrong way or use wrong laxatives, so that's why I have also listed top laxatives with reviews on my lose 10 pounds quickly website.

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