Enema questions,

[bcain]

The NP thinks that the reason my dd has decreased appetite, and sleep problems, could be d/t being subjected to doing the enema. NP Offerred play therapy may help. So tonite, Sarah told me Emmy is scary, I helped her give Emmy to her seahorse. I let her hold the bag and tubing and connect the tubing to the cone. She tells me after, Sea horse has tummy ache now.

Does the cramping get better, or should I be asking about changining meds.I thought maybe adding a stool sofener would help. She take's 1 tsp of Miralax riCanght now every morning, and we stoppe the Lacutlos.


Thanks,

Beth

[dahliafaolan]

I would suggest adding a stool softener or if you can get her to eat at least one high fiber food a day, it should really help.

As for me, the cramping never really got any better as long as I was using regular enemas. I think it was because not only was Mom pushing the liquid up there, she was also pushing air (kind of unavoidable). And because of my lack of nerve control, I wasn't able to get that air out easily. However, I have very minimal cramping when I flush out my cecostomy. Now I only really cramp up when I have hard stool.

[smoop]

Hmmm... the only time Analise complains of cramping is when I get the enema flowing too fast. I turn it off for a moment (or just slow it down) and the cramping stops. I only open the wheel about half-way, never fully.

[bcain]

:2aa: The NP says that the cramping may be more scary to her, than painful. I also noticed her cramping was worse when I tried brushing her teeth, (she hates having her teeth brushed) she's using that to her advantage.
I'm considering taking her for the life counseling (play therapy). I'm going to make a story book for her to help her understand.

Smoop what is the enema you use? I'm wondering if it's the mixture we are using. 225cc of NS, 30cc glycerin, 1 packet of castile soap. Sarah tolerates it going in just fine, it's the last 20 mins. I think Dahli is right about the air causing it too.

It's so nice having her clean all day, makes her care so much easier. We haven't had any skin problems in 3 weeks now, ever since starting Emmy. I use much less wipes and diapers now. I read somewhere here about the panty party after the cecostomy.... I could totally do that too! I'm thinking of getting her some training panties wooo hoo! I won't do the party thing, but I'm happy enough to want to. :Banane21:

I would have her surgery for cecostomy early say age 3. I don't even know if I can get the surgery that early. But from what I've read, it sure makes Emmy feel better, a takes less time.

And WOW, my typing is terrible when I'm sleepy. I didn't know until now.

[smoop]

Bcain--

I use warm tap water and a few drops of a soapy product by Shaklee called Basic H (which isn't being made any longer). It's a very mild cleaner which could even be used as a body wash.

Being able to put them in undies is wonderful! We use a women's maxi pads to catch any small accidents Analise may have. There have been a few times she's had a little urine leakage and they have worked well. If she does have a bowel accident, generally they are really minor and the pad will catch most of it.

[bcain]

I used Basic H as a child. My mom was into using all the shaklee products. I liked the shampoo, and Basic H. I hated the protein mix for drinks. That's a shame they're discontinuing it. What will you use next? I want to try something else just to see if it helps decrease her cramping.

[smoop]

Thankfully I have a lot of Basic H left so it will be a long while before I run out. My mother in law thought she'd be able to find another bottle from another distributor. Since I'm only using a few squirts and the bottles are so big it will be a while before I have to find something new. I would most likely just use castille soap though.

[bcain]

Smoop after reading your post on what you use for a solution, I decided to greatly reduce the glycerin to 10cc, the castile to 1/2 packet, still use 225cc of NS. I just wanted to see if she could tolerate it. She did fine, no cramps at all.
However, the results were much different, formed little balls, no pastey liquidy stuff. I'd say she looks constipated. I'm going to slowly increase the 2 enema additives, over next 2 days, just to see if I can get better results using less of the irritants that cause such cramping.
She'll probably end up with a contrast enema next week. The NP said with her still having pebbles they are concerned she is not cleared out sufficiently. And they'll get a better picture of her bowels and how they move. I don't want to do it to her, but she's been hard to figure out. She alternated from too loose to too hard with in the same day. She cannot tolerate juice, too loose. I know that liquid stool will leak around the hard stuff. So that's probably what's been happening. I also wondered why I'm using NS, maybe to help with electrolytes? It sure would be easier to use warm tap water instead.
Thanks for your help. Just a note about Castile: It can take a week or more to get it in NY. Order early. NP says it special order from the pharmacy, or get it on line.

[joybell322]

Just a thought - we use about 1 tsp of vinegar with about 2 1/2 cups warm water - that's all - no glycerin & it works great! Lizzie's gastro had never heard of that, but welcomed the idea as long as it works & doesn't hurt her. She's being monitored, but it has worked well for a year & a half.

[bcain]

VERY...Interesting..... Joybell. My NP for the bowel program wasn't too thrilled that I decided to start tinkering with the enema solution mix. She told me that what works for one child may not work for another. I do realize that. That's why I haven't tried any other child's regimen. I'd rather tinker with the present one we're using. I figured after seeing what others had been successful with, and not having to suffer with severe cramps, that I could not just sit by a let her suffer. If other kids could be successful with weaker solutions, I wanted to try to adjust this a little and see if I can spare her the pain.

My 2 yr.old has been almost to tears, squirming, acting like she is about to vomit with the cramps. Her appetite is down, she was having trouble falling asleep. She was recoiling from the procedure. It has been suggested I take her for play therapy to deal with the procedure. I'm thinking I'm trying to lessen the trauma first. If I cannot successfully lessen it, then I will have to resort back to what has been prescribed. So .... I'm being a little difficult with the NP, I hope she can put up with me. I told her I'm not aiming for no cramps, but I cannot except the severe cramping that she is having without trying to do something about it. When I have time I will post the info she has given me. Along with more of our situation, so new mom's & dad's can get an idea about the process.

[Dodger67]

A common cause of cramping is if the fluid is run in too fast. When I cramp I just stop the flow for a few seconds and restart it a bit slower.
I use 1400cc tap water with just a pinch of salt - I weigh ~70kg.

[joybell322]

I absolutely agree you need to adjust for your daughter. Lizzie is 7 now. She knows exactly which days are enema days and except that it interrupts what she'd rather be doing, it really doesn't bother her at all. She reads a book while I hold it in, then I give her a movie that she likes in a personal dvd player while she sits on the potty. She is even starting to hold it in herself and honestly, I can see her doing it on her own within the next year or so!

[bcain]

We are getting closer to the right mix. last nights was good results, I've ended up using 1/2 NS and 1/2tap water, with 1 pk of castile soap, and 15cc of glycerin. So tonight I increased NS to 150cc and the tap water down to 100cc, the rest stayed the same. We got good results, NO cramping Yeah!!

This Friday poor little sweetie has to do an xray contrast enema to see how her colon looks cleaned out. I'm bringing the cone part with me, it really works best for her. I'll bring the other Emmy cather, just in case they insist on using one of those, mine is latex free. I'm hoping to play DVD for her during this. I hope they warm the contrast solution....Or deal with the Mama!
Sarah hates the xray machine, "xray scary!!!" she says.

Tonight she was hungry after Emmy......I was warned..... So at 11:30p my husband puts her in her highchair, and rolls her into the office with me. She snacked on, and on for about 30mins. Then it was time to cath again.
Every one is asleep, now it's time to shower.