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My daughters story

Hi my daughter is nearly 4 years old and has been
Having serve diarrhea for a few years now with tummy pain
Knee pain and when she is really bad blood loss,
She was suppose to have a colonoscopy done
On 13 dec but had to be canceled as she had
Bad reaction to the bowel prep (sodium picosulphate elixar).
We now have another date mid jan and I'm worried
She will have another bad reaction.
At the moment her symptoms are really bad
She is having 10 plus diarrhea nappies a day
With lots of mucus, she won't eat, tummy pain, her
Belly is so distended and loss of weight with no emery.
I don't know if this sounds like ulcerative colitis
Like her GI doctor thinks it is, all I know is
I wish it was me having this as my little sunshine needs
A break.
I'm sorry she is feeling so bad :(
Is the colonoscopy being done at the same place as the first one? If so they will try something else for prep. Is she on any meds right now? What are you using for pain? Our GI told us to use Tylenol, but to stay away from Ibuprophen.
I hope you get some answers soon. I'm sure you will get a lot of advice here. Good luck!
Sorry to hear about your little girl. Sounds like she is not doing so great. Could they not just admit her to the hospital and get all the tests done asap?
Mid January seems a long time away.
I'm sorry she is feeling so bad :(
Is the colonoscopy being done at the same place as the first one? If so they will try something else for prep. Is she on any meds right now? What are you using for pain? Our GI told us to use Tylenol, but to stay away from Ibuprophen.
I hope you get some answers soon. I'm sure you will get a lot of advice here. Good luck!
Hi devynnmom
Yes the scopes are being done at same hospital,
As for meds she's on
Folic acid
Multi vit
Clinal modulate
The only pain relief is paracetamol
Hi, I'm so sorry you are going through this - I know how awful it is to care for a little one who is going through so much - Is there a cancellation list for the scopes? can you call the GI team every few days to ask if they can fit her in sooner? Can you check with them that they will use a different prep for her?
I hope you get soe answers and some help for you little girl soon xxxx
Thanks everyone
We where in a&e on New Year's Day she was
Having too much pain and diarrhea, but they sent
Her home with paracetamol and told to push fluids
And keep her on liquid,
I called the GI today and nothing new didn't get
A call back like promised.
Hope you get answers soon, it is so hard to watch them in pain and not have any answers. Hope you can get it to get scopes done sooner. I agree with trying to get in on a cancelled scopes.

Crohn's Mom

Hi MLE, and welcome :)

I'm so sorry you've found a need to search us out, but we're happy to have you! :hug:

Re the bad reaction to the prep; has your GI discussed using Mirilax as a prep instead? It seems to be much easier on the little ones.

I sure hope the next prep goes easier on her, and you get some much needed answers for your baby.
Hang in there mom, and lean on us for support , and please don't hesitate to ask all the questions you need. Nothing is too small, or big, and we will do what we can to ease your fears, or point you in the right direction.
Ok, the paracetamol is acetaminophen. I had to google it. I would keep calling and ask to be put on the cancellation list. They can give you the prep and you would really only need a days notice. Its disgusting that they would send her home again on pain meds. I really hope you get a call back and they can get her in ASAP.
I'm sorry to hear about your little girl...:hug:
I can't believe they sent her home.
Keep ringing and hopefully they get her in sooner.
I second the phoning again and again. The only way I ever got anything done quicker was to phone repeatedly (that and a few tears :wink:)
If you can try the consultant/surgeon's secretary and play on her sympathies, it can go a long way to getting things done quicker.
Thank you everyone for your replys
It's been a very long night awake with
Her up crying with belly pain and 4 change
Of nappies.
I called the secretary for her GI doctor this morning
Like I did yesterday, I was told that his secretary was
Off and she would take the message and see what she
Could do.... Then I called the Gp really frustrated thinking
That maybe I could get appointment or phone
Consultation no such luck.
At this moment I feel like crying, screaming I'm so frustrated.
Sorry for going on font know what to do
If i were you i would take her back to the hospital...no child should have to suffer like that.....i don't know what they were thinking when they sent her home...:ghug:
I was just wondering, if your child suffers
Diarrhea what meds do u give them to slow
Things down, my daughter can't take Imodium
It makes her vommit serverly.


To save time...Ask Dusty!
I'm very sorry your baby is going through all this! I think the best advice you'll find here is from these incredibly determined mothers who have also had to fight like banshees for their children's well-being. Good luck! Don't take no, or silence, for an answer!
I usually give my daughter Lomotil....but i'm not quite sure if you can give it to small children.
You can only get it with a prescription.
Still no word from GI doc, but GP called he spoke
My GI secretary and she said her consultant is off
So she was gong to find the reg and either
Get her to call me or will fax prescription for
Some meds..... So it's a sit and wait again
She said it would be today but I ain't holding my breath.
Aww if she is in that much pain and still having diarrheah I would take her back in to emerg. Eventually they will do something. I would take her in and tell them you are not going anywhere until they reassess her. ((((hugs)))) poor sweety.
Hi and welcome! Sorry you had to find us. I have to say I second Devynsmom. If your daughter continues on that sick she needs to be looked at. Especially one that little is at risk for dehydration. Is she urinating ok? You may want to keep an input output chart. You can google them and find one. Here is a link to one I found
You write down everything that comes out of her and everything she takes in. Then take it with you to the doctor or hospital so you can show them what is going on exactly.
Kimmidwife all I have had for past days is diarrhea
I've not had one nappie with just wee, so
I can't really tell if she is passing urine or not.
Thanks for the link I'm going to look at it now
And will print it .
I'm so greatfull for everyone's help and advise.
There is a little trick to see if she is passing urine. You know those mini maxi pads they have? In the USA they are called panty liners. Stick it to the lower front of her nappie and hopefully it will only pick up the urine.
Just wanted to send hugs and support! I agree with the other members be a squeaky wheel until you get relief and answers for your little one.
My dd doesn't have a colon and she just turned 5 have you tried food modification to slow her stools down. Peanut butter on white bread, mashed potatoes, applesauce, bananas, rice, mashmallows of any kind and in anything. Rice Krispies treats are awesome. We avoid greasey foods, whole grains and raw fruits and veggies tend to make things move rather quickly. Iron supplements can also help slow her down, ask her doctor if she needs it. We use all proteins but add the slower downers with it so thing are a bit more controlled. We use psyillium powder to slow her down but this is something to discuss with the doctor bc it can stop her up too if not done right. When used as slower downer we use very little like 1/4 tsp in 1 oz of water during meals. Ignoring the directions to drink lots of water. We also avoid fluids when eating to slow things. But as I said my child's anatomy is completely different than most.

Best of luck to you both. Hang in there.
My dd doesn't have a colon and she just turned 5 have you tried food modification to slow her stools down. Peanut butter on white bread, mashed potatoes, applesauce, bananas, rice, mashmallows of any kind and in anything. Rice Krispies treats are awesome. We avoid greasey foods, whole grains and raw fruits and veggies tend to make things move rather quickly. Iron supplements can also help slow her down, ask her doctor if she needs it. We use all proteins but add the slower downers with it so thing are a bit more controlled. We use psyillium powder to slow her down but this is something to discuss with the doctor bc it can stop her up too if not done right. When used as slower downer we use very little like 1/4 tsp in 1 oz of water during meals. Ignoring the directions to drink lots of water. We also avoid fluids when eating to slow things. But as I said my child's anatomy is completely different than most.

Best of luck to you both. Hang in there.
Hi myrrh hand
My dd isn't eating really at mo, it's has been
A struggle to eat at all, also she is on a strict diet
As it is, she is allergic to milk, nuts and soya
As for milk she is on a neocate instead of milk.
How is row an doing?
Aw poor kiddo. Being so restricted really stinks! Rowan is dealing with a possible bowel obstruction or adhesion scarring issue stopping food passage so she is on only liquids and very soft food now. Hoping things resolve soon we are schedule for contrast enema study tomorrow morning. Hope we get some good information.
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I'm with everyone else - take her to A&E (is there an A&E at the same hosp as your GI?) - say your not leaving till they at least sort her pain out - you shouldn't have to ask on a forum what meds she needs to slow her down that is for her so called Drs to sort out! Grrrrrrrr - makes me so cross that they can just leave one so young without the meds they need. - Hope she is better tonight xx
Suzysu she's asleep at moment but how long not sure
Will see what the night brings and take from there,
If no better tomorrow will at hospital tomorrow x x
I totally sympathise, have been there and done that waiting around desperate for the phone to ring, for anyone to help! A couple of weeks before Christmas I spent a Monday phoning round and no one was much help, so Tuesday we went to the kids hospital A&E and I refused to leave till they did something. 3 days later my daughter had her appendix out and a good look everywhere with the camera. Sometimes it's worth showing how desperate you are.
Good luck if you go to the hospital tomorrow.
Last night we where up a few hours again
With same tummy pain and nappie changes.
Got a call from GI this morning and he said
He wasn't prepared to give meds until stool
Sample came back....arragh
Just feel like hitting my head against brick wall.
As for bowel prep for colonoscopy they want
To admit her the day before as they only use
The med that was given the first time and they
Want her in a controlled environment.
I'm going to see what today will bring.
I just want to say I am so greatfull for all
Your help and support u have given me.
ummmmmmm I am no medical expert - but that reaction to the bowel prep does not sound good - I hope it was a one off and things go better this tie round - at least if she is in the hosp they can give her fluids etc but can you ask them if it is possible for her to have something different? it sounds like there are lots of different preps availiable? xx
Suzysu I already asked yesterday if it was possible
For a different prep, they told me this prep
Is the one they use for young children as
It is the most simple prep over 2days and the
Child only take 5ml of sodium picosulphate each
Time as a medicine and it has no taste so u can hide
In juice . I am worried though x
I'm sorry she had a reaction the first time around, I hope it was a one off and being in the controlled enviroment will make it easier. But, just in case this time around you may want to browse through this thread and see the other preps that have been used with kids and take note of them. If the need arises you could suggest the hosp look into getting one of them for her. I hope all goes well!!!
A very long night at A&E with her vommitting
A lot of pain and 5 full nappies.
Eventully after me going on they gave her
Some codeine with seemed to help
But you guessed it they sent her home.
I'm so frustrated no one seems to care my
Daughter is suffering , she has just woke
Up and first thing she says is mummy my tummy
Please make it go away,
We have appointment at hospital on Monday
I want to ask is there any tests, or anything I
Should ask them to text for?
What questions do u think I should ask .
Is there any pain med that ur kids have tried
That is good. Sorry for all questions just want to sort
Her out and sound like unknown what I'm talking
About. Any advise would be great .
MLS our GI generally doesn't give pain meds, as a rule. Tylenol is about all. THe reasoning is that if you use pain meds for chronic pain the pain eventually becomes worse. Izz was prescribed periactin to reduce motility-it is thought that the pain is related to motility and that this will help.
Hoping the prep goes better this time...they may be able to give her something for nausea.
I may have missed it...when is her scope? Is your appointment to discuss the results?
Wishing you lads of luck!

my little penguin

Staff member
^^^yeah that -- no real pain meds.
Hope they get her cleaned out and find answers soon

I know where we go they use miralax prep even on very little kids
hi Aw hunny i feel what ur goinf through my boy started with probs when he wae 2 he has dx at age 5 hes only just turned 6 now . lewis was given codiene for us to us at home when hes so bad i think ive gotta take him to the hospital . the weekend before xmas we rushed him to. a n e cause it didnt work hey had to give him dia. morphine he was that bad . lewis started with diarriah and we couldnt. get him outa nappies till he was 4 he suffers with constipation now thats why we use codiene so sparingly the only other thing codiene will do is firm up here pos but use it sparingly if u use it for 3 or more days they can become dependant one dose usually works for lew . its so hard seeing them in pain . ive cried . shouted at the docs one week i took him every nite and said this is how he is every niht u hqvebto do something we eventually got a scope he was dx with fistuling crohns he suffers with peri anal abscess to . just keep going back to a n e . ask for the gastro on call to come alot of the time the docs in a n e are training and they speak to the register on call u need the gastro i refuse to se anyone else now . keep pushing u will get answers .ni wish i could give more advice . r u in endland or america .xx
MLS, so sorry he is in such pain. Unfortunately it is a symptom that cannot be cured without remission. I hope they figure it out quickly for him. We also have a love hate with pain meds. Some meds can cause an ileus which will just give them more pain, trapped wind. It really is a horrible reality for you and your little one. It is a tough pill to swallow that there isn't just a pill at all. :heart:

My kiddo has been through the ringer in the last year and the pain she was in by far was harder to watch than anything else.
Queen gothel.... Love the name
Thanks for the advice Hun really am greatful
How is Rowans, I've been reading her story
I'm so sorry for everything she has gone though.
Your a great mum x x
She seems fine. Playing, starving, constantly looking for something to feed her with this new diet we started today with a drop of a hat luckily I have a stocked food cabinet. But it is also very flawed and confusing to keep all the diets in my head separate knowing what each diet does and trying to process it all is a mind bender. I have faith sometimes it is all I have.
I bet , I thought its hard trying feed my little one
With diary free nut free and soya free. It's amazing how
Creative u get with food when u need to x
Hope the new diet goes well x
Dairy free itself was a nightmare for us, and gluten free...don't get me started! Wishing you luck on the 17th AND monday...
My 2 year old was sick with a GI bug and was screaming "make it stop, mom". :( It's not something dd has ever said and it broke my heart.
Does anyone have any information on distention
My littleone woke this morning so big
She had it before it not as big as this.
Thanks x x
I'll call in DustyKat and QueenGothel (Mary).

Mary is having this with Rowan lately. Her situation is different but maybe she'll be of help.
Hugs from Grace and I!:hug:
Sorry to hear they sent you home from hospital again. Have to say I have yet to find a pain med that really works when they are bad. Hot water bottle seemed to have as much effect.
Did they call the on-call GI when you went to the hospital? Might be worth phoning the GI's secretary and telling her that you ended up in hospital again. Keep on phoning! Maybe they could get a cancellation.
No experience with distention - sorry!
Really depends on the cause of the distention. Constipation, poor pelvic floor function, and gas. I unfortunately have experience all three at different times. Toxic mega colon (TMC)is a rare thing but my DD has been tested for it a few times. There are more reasons for distention that are out of my experience. So I won't comment on those. More causes are like lactose intolerance, bowel obstruction, over eating the list goes on.

If it is trouble passing gas my which is my current issue...I think. Things can start to layer. Gas. Stool, Gas. The diet modification is low fiber, low carb, low fat, no milk. This has helped in just one day of implementation following an enema for releif.

They treat (TMC) with antibiotic therapy usually using PO Flagyl.

Constipation is the obvious Miralax correction. Which helped we would give it all day long and keep her stools like applesauce.

Not much you can do with pelvic floor function, the only thing I found helpful was pelvic thrust exercises. It is hard to teach a kid to do a kegel.

:ghug: sorry this is happening for it can be so scary. The importance of bowels sounds and a soft belly are a good thing. Don't know if you have a stethoscope to ease you mind.

Above all keep her doctors informed of any changes you see.
Hi queen gothel
Thankyo soo much for the information and
Advice I'm greatfull, it's so hard when you
Don't know what's going on inside our
Kids body's.
Well it's been a long day here and will update
You all when we have been to the GI appointment
Tomorrow. Hugs to all night x x


Super Moderator
My goodness, you and your little one are certainly being put through the wringer. :(

Having your daughter in hospital and under controlled conditions for the prep next time is certainly a better scenario.

As Mary has said, distention can have many causes and none of them are a normal state. Do you track her symptoms? If not please have a look at the suggestions we have in the wiki:


It is so difficult when you have to present to the ER or even an arranged appointment and then have to try and remember all the details, and when you have a child with a history of chronic illness some of the details start to become normal to you and so you tend not to bring them up. I also found that health professionals found symptoms harder to refute or dismiss when you had it all down in black and white not to mention the truer time line it gives.

Maybe pop in on the UK local support group. There may be others in your area to give more specific advice about hospitals and GI's.

Good luck with the consult today, I hope more than anything you get some action and relief for your little girl, bless her. :heart:

Dusty. xxx
Hi My little sunshine - so sorry your lo is having such troubles. I dont have any experience of the symptoms she is having so I cant add anything to the advice you have been given already but just wanted to welcome you and wish you luck. Hope you get sorted out soon
Ok Update from GI appointment today
First sent for bloods
Before returning to clinic
Two hours later and we get to see GI
He explained that he wanted to wait for
Anyway he said that stool samples came back
Negative for infection but the one that checks
For blood came back positive
I asked where he thought the blood was coming
From he said he wanted to wait for
The bloods some of them came back he said
Inflammation markers where showing 22
I think he called it CR something can't remember.
Ok now I want to ask advise.
He gave me two option cos he she has scopes
Next week he don't want to start her on
Meds , so he asked if I would be willing to do
EN to give her bowel rest and more fluids than she is
Taking as she isn't eating will help with her weight, she lost 2 kg
In just over week. What do you think ? He said we
Could do the weight and see approach untill
Scopes. GI will call tomorrow for decision x x
Please any help and advice sorry to keep a
Asking not sure what to do x x thanks
My son hasn't utilized EN, I just wanted to send some hugs and support your way. The lab result he was referring to was probably CRP? It picks up any type of inflammation in the body. If you click on the highlighted word in my post it will give you more detailed information about it.

I just started a thread on Toddlers and EN.
Some good info given so far.

Just to let know my Grace had normal CPR.
So normal doesn't mean no problems.
How is grace coping with EN? Has she had any
Side affects or problems.
I still haven't come to a decision on what is best x
Hugs to u an grace x x

Here's some links

EN forum on this site

DustyKat overview of EN-Read it!

My new thread on EN for toddlers

I don't know if you've read these yet? EN has NO side effects. It has the same success rate a pred to reduce inflammation for the first use. It supplies ALL nutritional needs! It worth it even if it doesn't bring her into full remission.

However, I'll have to ask....DustyKat, MLP or anyone
I don't know if starting EN BEFORE scopes would mask what they find?:shifty-t:
My 3 year old son started EEN at the end of December. His story is on FW's new EN for toddlers thread. He is doing great on it and has felt so much better. He does have quite a bit of distention still that I need to look into but otherwise he is great. The distention has been a symptom of his for months prior to EEN so it is not a side effect of that. I do wonder like FW if starting it before the scopes is a good idea or not. After them I would say YES do it. :thumleft:
Thanks everyone for help and advice x

@dusty that's what I was worried about
That if EN was started would it affect
Scope results x
Think I'm going to double check when
GI calls if it isn't going to affect then
I'm going a head with EN I hope give
Some relief as my daughter is loosing
Weight by the day and toooo many
Nappies . X
Not sure whether EN would affect the scopes, but my son did EN for 8 weeks exclusively via the NG tube. It certainly worked for him and allowed him a good few months without any symptoms at all (he has a mild case). I agree it's worth doing if no affect on the scopes! Nice to know they are getting all the nutrition they need


We did 3 serves of ensure with normal meals leading up to scopes. The gi told us straight after scopes that he was sure it was Crohn's but no meds given until after MRI a week later as GI did not what healing in occur before MRI.
I've just had call fro GI, I asked about the EN
Affecting the results if scopes, he said in his
Opinion he thinks it won't effect the scopes.
So we are going ahead with EN,
Got to wait to hear from dietian as my DD
Is on neacate LCP formula not sure if they are going
To stick with this or add another formula or change
Completely, also got to wait to hear from GI
Nurse to see when we go in as day case to
Have tube fitted and be tought what to do,
As my DD had tube only when ever she was
Admitted to hospital.
I JUst want to say a big thank you to everyone
For the kindness u gave shown me x x
Just a quick update for bed
We go for appointment to see dietian tomorrow
To discuss what formula and plan x
Then I was told that Thursday or Friday
We will return for tube fitted.
Lets hope we get sleep tonight x
Good luck getting the tube inserted. I hope it goes smoothly and the EN starts helping with her symptoms soon!
Thanks dusty and everyone x
Back from the dietian appointment
My daughter got weighed again and she
Has lost another half kilo
She is now 11.2 kg.
we go tomorrow morning for tube fitting
Just hope this helps.
My daughter is not feeling so good today
She is complaining her knees hurt with tummy
Pains and D nappies.
We will be keeping her on neocate for now
Untill she get used to the feeds.
Her future will hold what you teach her my new forum friend.
If you teach her she is a chronically ill child, she'll learn to be so.
If you teach her the sky's the limit even if she has limits,
you'll see her fly higher in her life than you ever dreamed she could.

These kids are amazing and leave a sense of awe with every accomplishments

You little one will be no different.

Farmwife just to read your words and
The tears started flooding
Thank you my new friend x
How is grace? X
Tell her my daughter loves princess to x

my little penguin

Staff member
Is she already drinking neocate orally?
If that is the case - neocate is an elemental formula and she wouldn't need a tube just increase the amount she drinks .
Also the want to double the concentration
Of it usually she has 1 scoop to 30ml
Now it will be 2 scoops to 30ml
And I'm sure she won't take it orally x
The other problem is she can't take calorie
Supplements cos of milk allergy to get
Extra calories as she lost a lot of weight
For her she weighs now 11.2 kg and is 3 year
8month x
Oh.hon. I understand your fear but believe me , your little one will adjust. I was in your shoes not long ago...just wanted to share that it stopped izzi s weight loss and improved her symptoms v dramatically. :heart: I know it's hard mama...hang in there!
Thanks izzis mom it means a lot x
I really hope it works
We have been up most of night with my
Daughter and tummy pain, plus I couldn't
Sleep with worry x
How's ur little man ?
Hi everyone
NG tube is fitted.
It's been a very hard today.
My good friends 5 year old stopped breathing
Today and is in ICU
It made me how precious are children
Are and never take anything for granted.
I know I've not been joined here long but
Please her daughter and family in your prayers.
Will update on my daughter when
I'm in a better mind.
Thanks everyone ur all the best and love u x
Yes it's news like that makes me want to hug Grace a little tighter!
Your poor friend.
:heart:They'll be in my prayers for sure.:heart:
Sadly with everyone on here lately my list is getting longer.

I'm glad the tube went well.