Daughter could possibly have crohns- undiagnosed

[leah]

My daughter is nearly 3 years old & has suffered sever constipation for around 18 months maybe longer. She collapses in pain with her stomach she can go upto 5 weeks without having a poo. She has been on movicol for 18 months which has not helped at all, also had 3 different laxatives which do not help either. She is under paeditricians which fobbed me off for all this time blaming her constipation on her weight. I was not happy so i moved hospitals to try and get it sorted. She stayed in hospital for 1 week to try and get her to poo. She had senna syrup, Dulcolax and movicol which did not help, They decided to give her an enema which made her have alot of leakage but not hard poo at all, She has to go for weekly enemas at our local hospital and is on 4 sachets of movicol & dulcolax daily. They doctors are now at a loss on how to help her.

They say constipation in children is very common this is the answer everytime i asked for more tests to be done for such diseases and other ilnesses but they just keep telling me its common and she has no underlying problems( which they cannot know because no tests have been done to rule this out). A week after leaving hospital she collapsed in the local shop i had to ring for paramedics and she was taken to A&E where i was told they could not do anything and to come back in the morning. We did this and was told nothing could be done we have to wait for surgical specialist and up her medication to 3 5ml of dulcolax an evening, Which our paeditrician told us was too much and take back down to one 5ml a night as it will cause bad stomach pains to her. She is awating to see a specialist surgeon and gastrontologist at a local childrens hospital. A doctor mentioned crohn's to me but said she cannot possible be suffering with the condition because she would not be chronicly constipated but wouls have bad diarrhoea, But reading a little online a few suffers have said they have been severly constipated also. I was wondering what other syptoms other suffers have had with the disease.

I am concerned that just because she is constipated they will not look into testing for crohn's and with been fobbed of for 18 months i dont want her to become even worse if it can be detected early and treated. It may not be but with anything there is always a possibility and i dont want this to be overlooked just because she is not having loose poo's. Any information and advice is welcome thanks

 

[Jennifer]

Yes there are some people on the forum who have never had diarrhea from Crohn's. You do not have to have it. What a bunch of quack doctors to not do any tests at all. Laxative after laxative is never a good idea if per chance we're dealing with a partial blockage rather than chronic constipation. Tests MUST be done. Suggest a colonoscopy to the GI, an MRI a CT scan, an endoscopy, barium swallow and enema with x-ray, blood work, ultrasound etc. all of the above until they find something. When do you get to see the specialist? Try to get her moved up as soon as possible for fear of a partial to full blockage (you do not want a full blockage as that can be deadly). Not trying to be scary but its something to avoid at all costs.

Minus the constipation, I've also collapsed as a child and had to go to the ER right away. They actually ran tests though and found that I had a partial blockage. I had already been diagnosed with Crohn's at that time though.

Welcome to the forum!

 

[leah]

We are seeing the specialist on the 6th march. It has been hurried though i am going to definatly stress my concerns. I will ask for all these tests, I have been told it can be very dangerous to have a full blockage which i think she may have as she can only loose leakage when she has an enema which is not a good sign so fingers crossed they can get to the bottom of it. Thank you very much for the reply. Hope you stay well

 

[David]

Greetings and welcome. I'm so sorry to hear your child is going through so much. That must be incredibly tough for you

You may want to take a look at our Undiagnosed Kids thread which is in our Parents of Kids w/IBD forum. I think it will help a lot.

Other than that, I agree with Crabby. Demand some tests be performed.

Please keep us updated, we're here for you

 

[leah]

Thank you david. i will take a look at that and will keep up to date on how she is getting on

 

[leah]

Hi everyone. Still at a loss with doctors, They do not believe my little one has crohns which i hope not but i believe she has, Deep down you know when there is something wrong with your own child & they just said she is chronically constipated. She went into local childrens hospital 5 weeks ago now, She had an x-ray done which showed she was really badly compacted with poo in her bowel. So they admitted her to a ward to de-compact her which they did this by clean prep, She was in hospital 3 days had another x-ray before they discharged her which showed she had some poo left but majority had been cleared out, They told me to keep her on 4 sachets of movicol & 5ml of senna 4 times a day. She had that much clean prep it was coming out till 2 days after we left hospital. She had diorrheoa for 2 week.. Then 2 week after and she started having problems going to the toilet again, I have been giving her all her medication religiously to try and keep her regular so she doesnt block up again, Then they concider looking inside with the camera. (This i am going to demand). Still 5 nearly 6 weeks on she is struggling to go it has been a week since her last decent poo, She is complaining of stomach pain again & it has started to swell up. I have rang the hospital 5times in the past 3weeks to ask for advice all i got was up the medication to 5-6 sachets of movicol(which do not help her in anyway been on this 2years) & senna which is i think griping her. she is 3(just) and is at the age where she doesnt want to do anything she doesnt want too so it is hard getting the amount she was on down her nevermind more. I dont think this is right to be on lots of medication. Im at the end of my tether with it all its making me so upset for her but doctors will not listen at all in there eyes its 'just' constipation i dont think that is just it at all but hey im not the one with degree lol. My second cousin's little girl has just been diagnosed with colitis they said at the hospital they may have the same. I just want to know how people got diagnosed how long it took & what the symptoms are like in children. Sorry for the really long essay lol any info is so much apprecicated

 

[Angrybird]

Hello Leah, I am sorry to see that the docs are still not doing much to find out why your daughter has this constipation. If the current docs are not willing to do any type of proper testing then perhaps it is time to go to someone new, I do not have children myself so do not know what is/isn't normal when it comes to their tummies but I cannot see how they can take this stance without checking into things first. I will keep my fingers crossed that you can soon get some answers.

AB
xx

 

[leah]

Hi thanks for the reply angrybird. I have been to my local hospital then we where referred to a childrens hospital, We are under one of the top gastro docs in south yorkshire supposibly but just not willing to do anything i keep on pushing & ringing so fingers crossed my demands will be met with more tests x

 

[Kip1]

Hi Leah

My daughter Rosie presented with the same issues as your daughter & was on pretty much the same meds for a number of years. She was tested for ceoliac & other things but also not crohns due to no loose poo's (even though they considered it as my mum had crohns). She was constipated but used to have overflow leakage which was very distressing for her. Her poo's when they came (hardly ever) were like crumbley dry soil which used to hurt her bottom.
She was admitted in to hospital when xrays showed she was so compacted with poo she would likely vomit it out. I remember getting so angry with the doctors at the hospital I was shouting so loud my friend who was in another ward heard me.
They eventually cleared her poo out & it took another 3 years for her to be fully without the constipation & overflow leakage.

She is now a healthy 16 year old who currently has no bowel issues at all.
I do worry for her though as I have now developed crohns so it is running in our family from mum to daughter.

Hope you get some answers soon but if not take some comfort from my Rosies story.
Sometimes mum does know better than the doctors do so if you feel something is not right then go with your instinct & get further help.

 

[leah]

Hi kip, Thanks for the reply. That is just how my little one is but she also collapses regulary with pain and also her stomach swells & causes her really bad pain . Glad your daughter is ok now & hope its the same with my little one x

 

[Kip1]

Yes I remember her being in lots of pain & she did end up in hospital with it but I think the thing that really got to me even more was how withdrawn she became.
It was probably due to the pain but she went from being quite a lively little girl to someone who was always quiet & didnt want to be with friends or do kiddie things anymore. She also used to get really angry & didnt want to take her meds as they used to give her tummy ache.

 

[polly13]

Hi Leah

My daughter Lucy - 3 now was diagnosed with Crohns disease last June at just 21/2 and her presenting symptom was chronic constipation, but she had loads of other symptoms as well such as - screaming while she was doing a poo - this was like a scream you never heard. She would get agitated before a poo and then would literally be worn out afterwards and would throw herself down on the couch for an hour afterwards, she would sweat really badly while pooing also. She had little mouth ulcers in her mouth (which I never knew were there until the GI pointed them out to me and her skin was really bad, especially the skin around her mouth (looked like really bad exzema). All cases are different but if you are concerned keep pushing and get her seen in a specialist unit. We have only one specialist unit here in Ireland and when I finally got referred to them, the GI diagnosed her immeadiately and followed up with scopes and biopsies to confirm.

General paediatricians in local hospitals while very good in their field just do not see chrons disease in children as young as ours, my paed very openly told me he had never seen a case in a child as young as lucy and hence the full year awaiting diagnosis.
I hope it works out ok for you and your little one. Please keep us posted as to how you are getting on.

 

[QueenGothel]

Hi welcome to the forum. Sorry your dealing with this. My DD has UC and has baffled her GIs since they met her. She has cronic constipation and I have to keep her on miralax daily. Which I find to be gentle on her guts. She always was constipated as a child and I used to be more worried about Hirshsprungs in the beginning stage of her UC. Bc her colon is so inflamed the constipation is a real problem bc it is easy to get a blockage. She is scheduled for a colectomy in 3 days.

I would get a new doctor. Without question. Have you tried natural remedies. Like skipping binding foods/ bananas, milk, rice, bread and adding lots of fruits and veggies? Prune juice? Grape Juice? Yogurts? Higher fiber breads and A LOT OF WATER!!!

It seems to help my DD to keep away from low residue. Which is the normal diet for crohns and UC. I cannot follow the recommended diet for IBD. My DD needs the fiber. If your suspecting IBD I just want to make sure your not following the normal advice for an IBD diet. Bc your DD doesn't present as normal, it wouldn't apply to her. The gluten free diet was extremely constipating for my DD.

My DDs got so bad that she suffered from rectal prolapse. This was a horror story. I made a post about it. Please makes sure she doesn't push.

My best to you, I hope you can get the constipation under control and I really pray she doesn't have IBD.