Steroid Enema Tricks?

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QueenGothel

QueenGothel

Joined
Oct 13, 2011
Messages
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Location
Michigan, USA
Rowan has just been prescribed this form of enema. Any clues as to how to give this to a small child with the least amount of trama? Please respond quickly am supposed to give it in the morning. :stinks:

It is not foam but a liquid enema.
 
No idea...we did the cortifoam. It bothered her a bit but, like everything else, she got used to it. :( Hate how that works. Good luck in the am...hoping Rowan tolerates it well and that it works wonders!
 
I never did this ... but googled a few sites. I'd want to go with lying on her side, on a bed (with towels) and watching TV or a movie for distraction. Good luck!
 
Thanks Jeanne, I did what you said she is laying on her side in the bed now. It wasn't so bad. After the traumatic Canasa suppositories we used to have to do every night this was kinda easy. Knocking on wood...:ybatty:
 
Just make sure that's it's the left side she is lying on, then some will spread along to the sigmoid colon.

Unless prescribed otherwise, I would give the enema as she goes to bed to prolong retention as much as possible. The only reason, I think, for not doing this would be if it leaks out and disturbs her sleep overnight.

Please note - I'm not speaking from personal experience of these (although I do follow this routine with suppositories), but I did used to administer other types of enemas when nursing years ago.

Good luck!
 
I didn't even think of left or right. But she was on her left. They told me to give it in the morning bc it would keep her up at night. None leaked out and it all was absorbed. Thanks for the info. Luckily the bed she sleeps on only would be comfy watching tv if she were on her left side.
 
Sorry I am late to this Mary but it is good to hear all went well!

I too would have chosen the left sided position. Just one other tip, sometimes with children the enema can be easier to insert if you get them to push down like they are going to poop.

Good luck hun, I hope all continues to go smoothly. She surely is a champion, bless her. :hug:

Dusty. :heart:
 
Glad it went well...another trick is to put a small pillow or folded towel under the hip to raise the bum.....

Kids do surprise you sometimes with what they put up with with no or little complaints!
 
Well she was up 10x with prolapse due to gas all night long. Gave her the enema this morning. Screaming pain. The nutritionalist requested two days ago that I increase rowans milk to lactose free whole milk 16 oz a day. And to stop using white bread and use whole grains. Now she has excruciating gas pain. The milk was for the fat. The grain for the prolapse. I am cutting back her milk today to see if it helps. This stinks.
 
I'm sorry little Rowan (and you) had another difficult night! :( Poor thing! I hope she feels a bit better today.
 
So sorry she is suffering like this. No one supports the LDN it seems you have to fight for it if you want to try it.
 
Oh Mary, when oh when are you guys going to get a break. :(

Thinking of you both and keeping you in prayers. :hug:

Dusty. :heart:
 
Hmmm, about the LDN. Ask them why they don't support LDN in paediatrics but they support the use of biologics in under 6 year olds when the literature states it is not recommended for use in this age group.

If they say it is because no studies exist then that is the reason the biologics aren't recommended for under 6 either. What's good for the goose is good for the gander!

Dusty. xxx
 
I was just reading up in it on the ldnscience.org I defiantly want to try it. I guess I could just go to another doctor like the other people did. Just scared to go to far from my bubble ya know.

She hasn't ate a bite beyond the 1/2 pc of toast she had this morning. :( she isn't bleeding but is still in a lot of pain. Now has to wear pull up bc she poos with farting. Poor kid.
 
Hey Mary, just checking on Little Rowan, no relief yet it seems, I'm sorry to read this.
No words that will help, just love and understanding. :ghug:
 
Yesterday Rowan had a horrible day. She didn't get out of bed. She had kept running to the bathroom. Prolapse every time. I went through a box of 50 gloves in 3 days. She kept just leaking into the pull up which she never does. She cries when this happens. My DH and I haven't been sleeping much at all. She screams when she has pain won't stop until she goes to the bathroom and doesn't evacuate but prolapses and tells me to put it back in. Sorry tmi. I figured out if I just change her diaper (switch bc of cost) the prolapse doesn't happen. So idk if this helps but it is showing her that just bc her belly hurts doesn't mean she has to go to the bathroom. About 3x a day we let her use the toilet after meals and her swig of miralax. Hoping she is getting better.

I got her to drink a shake unfortunatly she threw it up bc of her iron pill. Need to wait longer after eating to feed it to her. But at least I can start and soon be adding vitamins and protein to it one teaspoon at a time.

Rowans fundraiser last night was wonderful. It was a huge turnout. There was a 40" flat screen silent auction and the winner wrote Rowans name on the ticket. We immediately donated it to charity. A friend of ours runs Sabrinas Voice foundation (formerly Sabrina Black Foundation) who help by adopting a cancer patient by pay medical bills for people suffering from any form of cancer. They are having the first fundraiser soon. It was a good night. :ghug:

Rowan had a bad night though so I came home to a child suffering in pain. I really hope she starts getting better. She is eating more. Not really playing. Doing exercises on the couch/bed. (she hates me during this time) Pelvic thrusts help the prolapse so we are doing them anyway. I am doing this to force a kegel to strengthen the rectum muscle. Poor kid.

Take care,
 
I can't imagine how exhausted and frustrated your whole family must feel. Keeping Rowan in my prayers that she begins to see some improvement very, very soon! :ghug:
 
Oh Mary, I don't know what to say except that I hope Rowan is able to find peace and relief very, very soon, bless her...:hug:

:hang: Mary, you are doing such a brilliant job! Rowan is very lucky to have you as her Mum.

It is fab to hear that the fundraiser went so well and what a kind and wonderful gesture that you donated the TV to charity. Kudos to you Mary. :)

In my thoughts and prayers, :heart:
Dusty. xxxxxxxx
 
Is it normal for her to have yellow diarrhea? I this a sign of something that you guys know of? Worried. It burns her skin. Using Vaseline now that we are using diapers. Going to get witch hazel pads to wipe her first thing tomorrow. I am going to buy stock in them. Worried it is a sign of infection. Back to bed it is 3:30am. :confused2: you think we need flagyl?
 
Oh Mary...:ghug:
Yellow means food is moving through her very quickly, could also mean high fat content if it is "foamy" and yellow (steatorrhea) which means she is not absorbing, you may want to consider the NG tube w/peptide formula just for nutrition temporarily.
It sounds like she is worse, not better, I'd get her to the doc tomorrow.
Much love. :kiss:
P.S. Desitin is better than Vaseline, the original kind, apply liberally.
 
It is brown this evening. I am sure it was moving too quickly. I am still giving her the miralax. Ugh. But have cut way down to two gulps of it an hour after meals. We are in constant communication with her GI. He said the ng tube will not help bc she has UC. She will pass that food even quicker bc it is all liquids. Better off with TPN and food if needed... He said to keep feeding her everything, especially fatty foods, like ice cream and milk (lactose free). She needs 1500 calories a day. She is eating more today than any other day. Still having the urge to go poo all day long.

Can't use desitin bc of the prolapse. Zinc will burn if it gets in her bottom. :( Vaseline only. I still bought the witch hazel moist wipes for wiping her bottom though.
 
:kiss: Poor baby. Prolapse...she should NOT be having to go through this daily.
(stating the obvious)
I was thinking the formula would be absorbed mainly in the small intestine, just for nutrients, I know it doesn't help inflammation with UC. :stinks:
What's the next step of the plan?
 
Myreinhard said:
It is brown this evening. I am sure it was moving too quickly. I am still giving her the miralax. Ugh. But have cut way down to two gulps of it an hour after meals. We are in constant communication with her GI. He said the ng tube will not help bc she has UC. She will pass that food even quicker bc it is all liquids. Better off with TPN and food if needed... He said to keep feeding her everything, especially fatty foods, like ice cream and milk (lactose free). She needs 1500 calories a day. She is eating more today than any other day. Still having the urge to go poo all day long.

Can't use desitin bc of the prolapse. Zinc will burn if it gets in her bottom. :( Vaseline only. I still bought the witch hazel moist wipes for wiping her bottom though.
Click to expand...

Have you tried drapolene? It is really good for severe ulcerated nappy rash as it is very soothing and so shouldn't sting. It is a sloppyish consistency so shouldn't hurt when applied.

Poor Rowan , I really feel for her, but also you as a mum as it must be just so hard to be strong for her but also look after yourself.
 
Looked up the drapolene and it says in a big warning FOR EXTERNAL USE ONLY. The doctor fears that if she prolapses while having cream on her butt it will get inside when I have to put a glove on and push it back it. :(

I went against the GIs recommendation today and started Rowan back on acidophilus and totally knocking on wood here but she hasn't been complaining ever since. Weird huh... BMs were nice and brown too. Still have the prolapse but is not having the urge as much today. It might be the steroid enemas finally working too. Idk why the doc told me no to use the acididophilus but I couldn't stand to see her having such bad gas pain anymore. It immediately took it away in an hour. Crazy.

Praying for a good nights sleep for all of us. :p. Skipping miralax tonight and continuing today's trend tomorrow.

Come on remicade do your thing.
 
Thinking about you and your little one Mary...:hug:

Sending you loads of love and luck that Rowan is soon on the mend...

get-well-soon013.gif


Dusty. :heart::heart::heart:
 
We totally have this balloon in my kitchen. Thanks Dusty. I had to give her a bigger dose of Miralax last night we were up most the night but hopefully she will feel ok today. Her belly was too distended.
 
So it says on the back of the Nutren Jr. "helps facilitate gastric emptying" Should I not be using miralax you think if I get her to drink that? There is two scoops of lactose free ice cream in it too. Should I call the doctor an ask? I need to get with a nutritionalist I think. What do you guys think??? I don't wanna double up on the emptying. It will be a week until I get an appointment with a nutritionalist. Her stool is a little thicker than usual. They want it like applesauce all the time. Yuck!
 
I believe, Mary, that means it empties (is digested) fast, that's all...when V got worse on Pediasure due to delayed gastric emptying, her doc switched to Vital Jr because it "leaves the stomach twice as fast".
 
Ok cool. GI just called too. Said it would take 6 to make her have the runs from it. Told me to start giving her all her miralax before noon. And keep trying to get the Nutren Jrs in as much as possible for the rest of the day. Thank you for the quick response. I feel better now. Hopefully she will rest well tonight. She needs it and so do I.
 
Yeah, I've not heard of a laxative effect from these formulas (unless a high fiber one which I know exists but Nutren isn't one of those); these are just so "broken down" and easily digested that they don't hang around in the stomach long, that's what the label means.

Good for you and Little Rowan, formula RULES for guaranteed nutrition and no stress over what food they are eating. :soledance:
 
Well according to google...lol good nutrition is why the prolapse is occurring. But I am sure it has something to do with her lack of exercise or want to do anything but lay around and cry like an infant. The diaper situation is not helping but I can't put her in panties. Too many accidents. She is fighting me on the shake today. No chips until she drinks it. The new chip maker is sweet. No oil no salt. Yum

She woke 9 times and soiled the diapers every time and prolapses 3x Ugh. why must she push. :poo: stop pushing!!!
 
I don't think her nutrition has anything to do with the prolapse but rather it is directly related to the bowel issues she is having. Unfortunately while ever this is happening she will likely have faecal incontinence as well which is why she is soiling all the time.

Bless her cotton socks...:hug:...no child should have to endure this.

Dusty. xxx
 
That is what they said, in addition to muscle weakness. Because she got sooo weak from malnutrition the steroids ate up muscles. She has a had time doing stairs and can easily be knocked off her feet. Her whole body is weak. She is improving more daily now that she is getting these drinks in. She has more energy. My point... The pelvix muscle got weak just like her legs. Thinking about getting a balance balls for me and the girls to do. Supposed to help with strengthening the plevic floor. Gotta get her out of this depression. Seriously doom and gloom all the time. She is mean to her baby sister, she is mad bc she is not sick. The steroids aren't helping the mood situation at all.
 
Mary, are the docs leaning towards surgery at this stage?
It is SO not my business or place so PLEASE don't take this wrong...I mean it from the view of "if it were Violet...or me", but it seems very rational an option in little Rowan's case...I'm wondering what the time limit for deciding to do it is?

MUCH love to you guys...:heart:
 
They won't discuss until next remicade infusion. Her UC was so severe. I spoke with the on call GI last night and she actually looked up the LDN treatment and is going to talk it over with her GI and suggest they look further into as a treatment for Rowan. She had heavy bleeding last night, but surprising she slept pretty well. (gave her benadryl) she is well rested today. The GI believes the bleeding is the prolapse being irritated by the steroid enema. We didn't do it last night. Hoping the pain goes away today or soon at least. IT is tough seeing her so scared and in pain. I hope the docs are right and the prolapse can start healing now. It looks better... B4 you could see the mucus and ulcers (like rice on the end that sticks out) on it but now it is just looking like the pictures I google online. They said the rectum is the last part to heal, and it is the most painful area bc if ulcers are right there that might be what is giving her the need to push. I pray for a good day. I was up all night and will be taking a sleeping pill soon to get some rest in.
 
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I am fine with the surgery BUT I want another colonoscopy to verify that it is not crohns. It will stink if they remove the colon and it doesn't cure her pain and then has to go without a colon. Ya know... I have read a lot of stories that it has happened that they end up with crohns bc in many cases it starts in the colon so it is misdiagnosed as UC. I just want another look ya know. Don't know if we will ever get there.
 
SWEEET that they're willing to look into naltrexone...I can't wait to try it with Violet, wish I had before Humira.

Thinking of you guys and sending love :rosette1:
 
She didnt prolapse as much today and it went back on it's own. There was some blood for the last few nights... Not during the day but one day it was bad. We stopped the steroid enemas per GI. Apparently they can irritate a prolapse also. Also stopped allowing her to use a heating pad for her pain. It does wonders for her UC. I read somewhere that heating of the intestines in babies can cause prolapse. I use one of those flax seed bags to heat in microwave and I just put it in long enough to make it warm not hot. Not a battle worth fighting.

Rowan has been wanting to play more and be a little active. I bought her a new bed for her back and joint pain. I hope she sleeps through the night again soon. Stopped using diapers during the day, using pull ups hoping for undies by the end of the week. This has been so tough on her, the kid who never had accidents since being trained. Never even peed the bed once.

We will be starting the scd diet soon. I am going to slowly introduce replacements for her favorite things and see how it goes. Met with PCP and she is all about it. Had her run rowans CBC, CRP, etc She looks really pale to me. Her eyes lids are looking swollen to from the Predisone. Need to talk with GI about it and her ween.

I got some bad news today my good friends husband died at the young age of 36. She has 3 boys between the ages of 8 and 3. He died in he sleep had Addisons disease, unknown if that was why but we are assuming. So sad.

Getting sleep in my bed tonight. No duties... Getting ready to set white noise machine to crash.

Goodnight all.
 
Sorry for your friend Mary!

Things sound a little more hopeful for little Rowan! I hope she just keeps improving! Good luck with the diet. Let us know what she likes or doesn't.
 
I'm always glad to see Rowan updates, crap, Mary, sounds like the steroid enema was making her worse, poor baby. :heart:
Thinking of you two and sending love.
 
Mary, it just breaks my heart that Rowan hasn't had more of an improvement. Poor thing! And, I so feel for you as well... It's so hard watching your child suffer! :Karl:
 
Aw Mary..:heart: I know how you feel, believe me.
I rejected drugs for Violet for 3.5 years despite her doc's opposing view that she needed them in addition to the EN.
I still may have her go without them if this Humira trial fails completely in May.
So I am of a like mind, and I totally get your feelings re: Western drugs.

However. I do have a master's in medical genetics so I have been on the other side too, and my view is tempered by this and my experience with traditional treatments which are successful.

I think Rowan is an extreme case due to her age and severity of disease, and I'd be hesitant to switch to Eastern meds OR SCD if she were mine. JUST my opinion.
I think it could very well make her worse. I think an NG tube with a really broken down formula woiuld be better for her nutrition wise than the SCD.
She likely won't drink enough Nutren to fix her nutrtional state. And drinking a lot at once is so hard when her gut is messed up and she feels like crap.

The NG tube w/pump delivers tiny amounts over a period of time and therefore is optimal for digestion/absorption.
You don't know how much of her feeling bad, especially mood wise, might be from mal- or undernutrition. Even if that's 30% of it, say, well the formula would fix that 30%. And has ZERO adverse effect. And works fast.

I know it won't help her colon per se, I'm just thinking of it from the nutrition aspect which would help her overall.

with love and concern :heart:
 
I won't be stopping remicade but I don't want to not exhaust all avenues. If I don't try everything within my powers I will feel as though I failed her. I have to try, doctors keep telling me diet doesn't matter. Well if it doesn't then how come so many on here say it does. And if it doesn't matter it shouldn't matter if she is on scd or not. Right? Her PCP said she thought scd was a great idea. I am going to start it very slowly... Not like I can just get her to stop bread and pasta all in one day. I am going very slow. Introducing a new scd item every 4 days. She eats eggo waffles everyday at least now they are made with 4 eggs and ground almond meal so yay for protein right.

I understand where you are coming from... I would do the tube if they felt whe needs it but everything is good according to her blood work, beyond her albumin. Which bc of the miralax it is all being past through her BMs.

I am just so frustrated. I am not going to stop seeing the western docs. I just wish they knew more. Like the LDN thing. I feel like thee is no money in LDN so that is why the FDA will never approve it bc there is no one willing to fund it. I just think they are not involved enough and I think they should be more concerned with her prolapse issues. I just got a bill for $44k from for 9 days at UofM. They won't fit her in to have this bleeding prolapse looked at? Tell me I would have to come to ER to have it checked out and I would be waiting my time and stressing her out. I am running out of GI options this is my 3rd GI.
 
Lots of blood from the prolapse this morning. :( it pisses me off that the doctors are not more concerned. Have to do another blood draw today to see if albumin is up or down from 2.1 :(. That is going to suck.
 
You guys absolutely break my heart :ghug:
I know you're clinging to sanity by a thread.
I went through a similar thing before V was dx but not for as long as you've been dealing with this living at the edge, and with such a tiny kid. So I can only imagine how much worse it is for you than it was for me...and for Little Rowan, just a preschooler. God, I hope something starts to work or surgery fixes the whole issue and she returns to a happy childhood. And FAST.
I wish you guys were near me so I could offer more help than virtual support.

Much love :hug:
 
So still waiting on results. If it is low she will needs a albumin transfusion ASAP. Then guess what happens... A diuretic then low potassium, then malnutrition, fatigue and depression.
 
Oh Mary...:hug:

Thinking about you and your little princess and sending loads and loads and loads of love and healing thoughts your way...:heart::heart::heart:

Dusty. xxxxxxxx
 
Well they said if it dropped they will call the doctor with the results but since it is the weekend I won't find out results until Monday. Hope hemo didn't drop too. I hate waiting. Thanks Dusty.
 

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