CONSTIPATION

Hi, my 13 year old son has been getting bowl clean outs monthly. Now the surgeon says he needs them every week for the next month to two months. I'm having mixed feelings. I'm worried about so much Anastasia. He has sensory issues as well and fights the mirilax. Does anyone have any suggestions??? I hate to see him suffer so much.

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Hello Besnres,

Does your son have a GI specialist? GI issues are very common with EDS since there is a lot of collagen (defective in our case) in that system. If you are close enough, Dr. Clarke at Johns Hopkins is an excellent GI specialist who is very experienced with EDS. Here are some articles about the issues seen commonly in us...i.e. what is causing his constipation like gastroparesis: http://www.ednf.org/index.php?option=com_content&task=view&id=1185&Itemid=8 8888988. So my best advice is find and treat the cause of the constipation and if his current doctor is not doing that, you may want a new doctor.

I too would be very nervous about multiple "clean outs". We can tear easily among other problems so I would really question this for someone with EDS.

As far as the Miralax, it can be mixed in any liquid...water, tea, juice, hot cocoa, punch, soup, etc.....stir until dissolved and I would be surprised if he noticed it.

Good luck....

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Have you tried doing bowl cleanouts with just the miralax? my son has chronic constipation and this is the only thing that works for him. Large does of this will totally clear the bowels and colon. We had to do this once a week until he straightened out. We still have to do maitenance doses as well or he will go back to having problems. I am not sure about the anesthesia since we have not had to go that route but I can't imagine once a week would be a good idea.

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I have a 13 yo daughter and the same challanges!
She gets miralax 2x a day- one cap in the am & one cap in the pm.
If we go 48 hours with out a BM, then I have to give her a laxative which works within 12 hours.
She gets heartburn if she doesn't void, she gets lumps in her throat like she's going to vomit too.
She's a very picky eater and I am constantly after her to drink plently of water.
Her sisters have been dx w/ EDS III and she's a watch at this point.
The GI dr we work with sees all three girls. All have been tested for Celliac and all came back negative, but dr still thinks it's possible... he has us doing high fiber diet at this point to help with constipation. I was told not to do gulten free yet....
My youngest also get 1 capful of miralax every night to maintain her GI system- if I skip a dose it can take a week to get her back on track.
GI told me last month that this is typical for this age and that having the family history of ED just adds to the time line of getting back on track.
At least you can buy Miralax in bulk at BJ's! :)

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My mom swears by the purple pill Nexium to treat all of her GI issues, might be worth a try in conjunction with miralax and WARM prune juice. Good luck!

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I just had MAJOR hip surgery 5 weeks ago and I have been on song really strong opiates. I took Mirlax for several days and it made me nauseous and never produced a bowel movement. I went to my local Vitamin Shoppe and was suggested Swiss Kriss. I mentioned this to my pain management doctor and he said that was good to take and also suggested that I take 2 stool softners twice a day along with 2 Swiss Kriss twice a day. When in 2 days I was regular. Swiss Kriss is like sena.

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Aunt Lori was taking several senna-s per day and it wasn't until they added sorbitol that she became regular.

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Well I used to be able to eat any low fat chips with Olean or Olestra and be regular but the opiates were too strong. After surgery I ate a WHOLE box of prunes and nothing.

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Thx everyone. Yes, we see a pediatric Ehlers Danlos gastroenterologist and surgeon. We have tried mirilax. He also was dx with Aspergers. Therefore he can be very picky about sensory things such as the mirilax. He takes fiber supplements, Philips colon (milk of magnetism) and a probotic. I do appreciate the responses. Thanks again

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Hi besnres, the Mirilax should not be a sensory thing if you completely disolve it (it takes a little bit of work)...I know for a fact that a capful is completely disolvable in a glass of cranberry juice about 8oz (or drink mix diluted with water. just keep mixing until you cannot see the granules any longer.) Also for those using it at night, this is a product that is better used in the morning. It is osmotic, meaning it draws water into the gut. You will get better results using it in the day while whoever is taking it is drinking plenty of fluid. Taken at night only, the mirilax draws available water in and just sits in the gut and doesn't move. If you take it in the daytime and keep drinking it better promotes normal motility. I do agree with Cliffordsmom...never miss a dose! Just keep taking it! If it does become too much you can always tinker with the amount itself. Once you have yourself/ or a child going, best to keep that up and not get backed up. The other key is sufficient hydration. Even use a fluid tracker (availble on phones), for kids who don't like to drink, use a sticker chart when they are not feeling well. Vary beverage choices, etc. as well as cups and water bottles. A favorite here for kids and adults alike is the TERVIS water bottle which can be used in the microwave, freezer, diswasher, hold hot and cold beverages.

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The things that works best for me is a supplement called Constipation STOP, and a probiotic called Bacillus Coagulans (I get DuraFlora by Source Naturals). I have heard that Diatomaceous Earth is excellent for constipation, but since the other two work so well for me I haven't tested the DE. We give it to my 12 year old daughter to treat clostridia and yeast overgrowth. Her doctor told us to get it from Wolf Creek Ranch. Not expensive, and the smallest bottle will last at least a year at the dose we use.

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