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clean-outs

dzeldin
  • By dzeldin
  • Posted July 28, 2009 at 3:28 pm · 14 replies
  • In Pediatric
  • Shared with the public
0 Recommendations

Has anyone had unsuccesful hospital bowel clean outs? My daughter is almost 5, and in the past 4 months has been in the hospital twice for NuLytely to clean out obstructions. The first time, it was run through an NG tube at the rate of 150mL for 50 hours and she still wasn't 100% cleaned out. It even took almost 13 hours for her to poop. The second time, it was ran at 200mL for 35 hours and she was again sent home without being 100% cleaned out. Once again it took almost 13 hours for her to poop. It seems that she just gets more and more bloated, but doesn't ever get a clear result. Any help is great...she has to go back to her gastro doctor tomorrow, and I am VERY frustrated.

Explore topics in this discussion:

MiraLax Surgery Hirschsprung's disease Pain Incontinence Muscular dystrophy Colonic inertia Lactulose

14 replies

DGSTRICK

I just started Pico Saline and it just about kills me to use it. I have to use ti daily so says my Dr but they way I feel is most terriable. I can not even walk at times the pain inside is so bad after taking it.. I tried the other things in the hospital where they flush inside and swallow stuff but it never worked for me. so now I take Lactulouse and Pico Salix everyday. sometimes every second day to get a rest.. Before that I was going 3 - 4 weeks without movements and when I finally went it was a nightmare . not sure if that will help your daughter. but this is a frustrating problem that Drs just can not get a grip on or at least for me...

Novagrad

What is Pico Salix? Is it like phosphosoda? I used to take phosphosoda and it was the only thing that worked for me before coming off the market. I'm taking Osmoprep now but it does not work as well. I wonder if this Pico Salix is a good option?

Mimi

DGSTRICK

Spelt Pico Salax is a (Magnesium Oxide, Citric Acid, Sodium Picosulphate) it is an oral purgative.. I place it in my feeding tube. I hate it . I get so much pain from it inside my stomach. I can hardly walk. But it does it's job and cleans things out. I am supposed to take this once a day every day and it is not covered by my insurance. it is about $10 a pack daily. almost as bad as smoking... I wish there was some way to get insurance to cover it..
but that is what I am taking with Lactulose and 3 senocot a night... sooo much..

Gary

maddogrock

There's gotta be better options for you , especially since you have a feeding tube . My son uses GoLytely via his cecostomy tube ( a PEG tube placed in his large intestine ) along with glycerin & crushed dulcolax tabs - works like a charm !

deb777

Hi,
I had to put in my "two-cents". My daughter has an ACE/Malone, which is similar to a cecostomy tube. She flushes her colon each night through a tube inserted into her belly button which goes directly into the colon. It is different from the cecostomy in that the tube is removed each night and then needs to be reinserted. My daughter prefers it because she does not need a button, and it is invisible to others.
It has been great for her, since she has total colonic inertia. Her colon has never worked and never will. It will probably be removed completely very soon for a j-pouch, but in the meantime, the ACE has been fine. She flushes with 750mls saline and 50mls glycerin. She also take Miralax daily.

Debra

dzeldin

Thank you so much for your reply. I am very curious about the Malone. I have been given the options of having my daughter have a g-tube, cecostomy, Malone procedure, or to just continue with the hospital clean-outs and home regimine of Miralax and Sennakot.
How old was your daughter when the Malone procedure was done? Is the flush of saline and gylcerin done overnight via a pump or all at once? Has she experienced any side effects? How is her self-image? Thank you so much for any information. My daughter is so little and I hate having to imagine her going through so much everyday.
-Debra Z.

deb777

Hi Debra,
My daughter was 12 when she had her Malone surgery. It was the best thing we've done!! Before that, she had to have nightly bag & catheter high volume rectal enemas, which was awful. She did that for more that 6 years!!!
The whole process with the Malone takes about an hour each evening, and usually cleans her out enough so she doesn't have any accident during the day:) She does have an infusion pump, which she uses occasionally, when she's really backed up. Then she runs the pump overnight with Golytely. This is rare.
The only side-effects that she has had would be leaking from the stoma site. The site does leak, and it has been revised twice. It still leaks sometimes, especially when she is very full. She puts gauze over it with special tape. (She allergic to Latex.) This takes care of the leaking.
As far as her self-image is concerned, she is the happiest 15y/o I have ever met in my life. She has lots of friends, and tells everyone about her problem. She has Hirschsprung's Disease, and because of this she has no colonic activity.
How old is your daughter? Does she have a diagnosis? I really do understand what you are going through. We've been going through it for 15 years.

Debra

dzeldin

Thank you again for your reply. My daughter is almost 5. She has a rare form of muscular dystrophy called alpha dystroglycanopathy. The consensus is that the muscular dystrophy has caused damage to her colon which is why even though she does poop everyday, there is just not enough motility and force to push everything out. She takes high doses of Miralax and Sennakot, and has been going in for hospital clean-outs every 8 weeks. However, nothing is ever 100% succesful. She is due to start kindergarten in a couple of weeks, so I really don't want to be pulling her out of school all the time.
Right now Anna (my daughter) is sweet and kind and adjusted. Though she is beginning to say that she is "different". She loves dance and swimming, so I am concerned that a g-tube or cecostomy would interfere. I am trying to decide whether we will continue doing what we are doing or proceed with the Malone.

maddogrock

The cecostomy doesn't how at all ;it's placed in his lower right abdomen and no one sees it as it's located under his undies . He is not "ashamed " of it and does have many friends & has shown his friends what it looks like . He's turning 12 in Sept. and had five miserable years of constant incontinence . Ihave a friend whose granddaughter ( who lives with her ) had an ACE placement about 5 yrs. ago . She was born with myelomeningocele .

dzeldin

Thanks for you input...in your opinion, since your son has a cecostomy and you know of someone with a Malone, which is easier to manage? Does your son have a "trap-door" or "Mic-Key" cecostomy? Does he have any leakage around the site? I fostered a child with a Mic-Key G-tube for a couple of years and there was always leakage and granulation around the site. My daughter has never had any issues with incontinence, but is always backed up and gets very bloated and full with poop; then we go in for a hospital clean out which helps but only for a little while.
-Debra

maddogrock

I think a MIC KEY cecostomy is easier - when it's in the intestine , there's no leakage around the tube ( or should I say , there shouldn't be - he has never had leakage since they converted the cecostomy tube into a " button " . We access the button when necessary & it works well for us . He has to sit for 30 - 40 mins after the poop starts to be sure he is cleaned out but he hs minimal leakage from is rectum ( he has some if he gets too much gas but has NEVER had bloating even before the tube was put in !! It was difficult for him to get diagnosed ( it took almost 5 yrs. ) We hope to get the button removed w/i 1 yr
( he's had it 3 yrs. 4 mos ) .

dzeldin

Do you mind if I ask why the cecostomy was put in? Was it for incontinence or did he have a more specfic diagnosis? And, if it seems to be working well, why is it going to be removed? My daughter has a progressive muscular dystrophy, so I think if I decide to go with the cecostomy, it will be with her forever.

maddogrock

His problem is not a permanent issue - the intestine WILL regenerate according to the MD . He has no other health issues besides the bowel issue . He is a normal 11 1/2 yr old besides this ctube ( no neurological or muscular issues - they feel his damage
happened when he had a bad belly bug in his toddler yrs. ) Feel free to email me , I responded to your request for being a friend on the message area .

philsphan09

I just wanted to say I hope everything goes well for your daughter. You are all strong people and I admire you greatly. michelle

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gimotility: RE: 2009 AGMD Digest.Motility Symp. "Hirschsprung's dis., most common cause of lower intest. obstruct. in neonates," Rodriguez MD.

gimotility: RE: 2009 AGMD Digest. Motility Symp."IBS accounts for 30% of all health related costs in gastroenterology" www.agmd-gimotility.org

gimotility: From 2009 AGMD Motility Symp.: "IBS is the most common chronic med. cond. worldwide" Pimentel, MD, http://www.agmd-gimotility.org

gimotility: AGMD Digestive Motility Symposium-Much Information & Insight. Stay Tuned For Highlights. AGMD: http://www.agmd-gimotility.org

gimotility: Hurry And Register For Extraordinary Symposium Featuring Renowned Experts In Digestive Motility. http://www.agmd-gimotility.org

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