bowel habits in our kids constipation soiling IBS

[Rosie]

Hi Amanda

A fall from 7ft monkey bars has exacerbated the problems - lots of being "hot inside" my son says :*( Not sure what that means but it looks, from my research that he may have damaged his autoimmune system. Pains have been so severe one or two times since, in his stomach that he has been short of breath.

Have you thought about heartburn and/or hiatus hernia? Severe heartburn is often described as a 'hot' pain. From experience I know that a hiatis hernia can cause agonising pain if it gets pinched, defonitely enough to affect breathing, and as it is in the area of the lungs breathing can exascerbate the pain.

Hope your son ghets it sorted soon.

Rosie

[christianne]

Hi Amanda
Sorry to hear what A is going through. Afraid I don't have any suggestions on the bowel issues but could I suggest the possibility ofthe pain near the spine being sacroiliac-joint related? That sounds a bit like where I and Ewan have the S.I joint pain when we sublux it. That is about two thirds of the way over from the hip, between hip and spine.Thereis a bit of a 'dent' or dimple there in my back.
Christianne

[Amanda]

Thanks Rosie and Christianne.

Rosie - I've thought about the hiatus hernia and asked his GP when we were back in the UK. He said it would have shown on the x-rays he's had done. We see the GI Doc tomorrow thankfully so I'll ask again.

Trouble with Alexander is that he has just had a load of dental work done and what with the pain from that and the pandendoscopy they just did he has totally shut up like a clamshell Apart from green stools, he has seemed a lot better. Trouble with that is, I gradually relax and then it all flares up! then it is back to the appt waiting game again.

Christianne, thanks for the suggestion - I have this myself This pain is higher up i believe but I will definitely look into it.

QUESTION: Do all EDS kids have hugely long stools?? This has been the situation since he was a baby and the width of them makes my eyes water sometimes!
Amanda

[Alison C]

answering your question - we all do have large no 2s! Maybe due to lax and stretchy tissues. You can always tell who has been in our house ie work out whether it is someone with HMS or not!!!

[Amanda]

Thanks Alison

[Alison C]

Occasionally we can bleed slightly eg pin head bleeds on paper (eg bowel fissures) but all OK. My daughter does "withholding" ie trying to stop the no 2 from coming as it can hurt at times. I found giving her more fibre helps (eg adding All-Bran to the breakfast cereal) and making sure she drinks enough. Also a book about a boy called Liam (Liam goes poo in the toilet - eg at Amazon) helps her understand the need to do a no 2 and has funny cartoons - makes you laugh and gives you the subject in a less stressful way. She has tried Lactulose but this did not really help. The bowel can also be slow to push the no 2s in HMS.


Glad I could help you.
Alison

[tireesix]

DD1 who is 5 can block the toilet

DD2 is gaining, has been referred to a dietician but both her and DD3 have issues from the start of the gut to the end but its diarrhea not constipation.

Ok, I knew something was wrong with all 3, I knew it was EDS (although they were only diagnosed this week) yet I always avoided this part of the forum......... Why????????????? i could have found out so much.

Ok, must read more.

[Alison C]

Please dont feel this way - it takes a lot to read stuff here esp regarding children. Hope you find support here.
Alison

[christianne]

Hi Tireesix
I echo Alison-it is hard to read the stuff about our kids, more so than for ourselves, and I have to take a deep breath and force myself to do it sometimes, when i am feeling fragile but need to find out stuff for a dr appointment etc. Don't feel you have to read it all straight away, take it slowly and read bits that echo problems that yours have , and remember that not all EDS kids have all the symptoms and problems on these pages. And don't beat yourself up -many of us have been in denial at some point, it is a safeguard emotionally sometimes. you are a great mum.
love Christianne

[christianne]

Hi all,
I wanted to update this thread about bowel problems in our kids in case my info helps anyone else. After my son (11) had been having problems with soiling etc for years and nothing else helped, including movicol which just swelled his bowel up, we have now discovered that the problem is in fact that his peristalsis muscle movements of the bowel are too weak and his bowel is very sluggish to the point of not working at all almost,(this is sometimes called slow transit) this means that without the present meds he's taking he ended up not going to the loo for 2 weeks at a time! We have found the answer through trial and error with a bowel paed specialist and the incontinence nurse, and it is a very high dose daily of s*d picosulphate (much higher than would normally be needed). This kickstarts his muscles into working and moves the waste down his intestines. Without it daily it stops again and all backs up. I thought this might be interesting to some of the rest of you. With this daily dose he has been evacuating every day, it is very liquid but is controllable and he has stopped being incontinent! Real success, phew!
On a possibly related point, I myself have been diagnosed with coeliac disease so no more cakes, bread, pasta etc for me, boohoo! I am going to ask the specialist to check Ewan for it too as it can run in families and my only symptom was severe anaemia.
Christianne.

[romina]

Hi,

I've spoken with you before Christianne, on the EDS board, but haven't been there or here for quite a while.
My son is now 7, nearly 8 and after a problem-free toilet training, has started to have some bowel 'leakage' - it comes and goes - from every day to not for weeks. The GP has put him onto Movicol, but I am suspicious that it might be EDS related - and from the look of this thread, I could be right.

He is hypermobile in lots of joints, but is generally very fit. I saw a paed rhumy last year as I was concerned about him having pain in his knees and feet. The guy we saw (from Nuffield Ortho Centre) said he might be EDS, but if he has its probably mild and not to worry about it, just to keep him doing as much sport as possiible to keep his joints as strong as possible.

But I am wondering - we are now up to 4 Movicols a day and he still has to clearly strain to get anything out pretty often - or its a complete explosion. He was very explosive and colicky as a baby - if he did a poo without his nappy on, whilst on the changing table, it could hit the floor 6 feet away - I'm not joking!

So, If I do want to pursue the route with specialists, who would you recommend? He has also in the same time period developed a rash which is itchy and a bit like ecxema - that has been tried with hydrocortisone - no improvement - and now allergy pills to see if they help. Could that be linked too?

I'm EDS III and have had various IBS type problems in the past but nothing too drastic.

Thansk very much indeed and hope everyone has a good Easter.

[trekster]

Would a stool softener work better? im using docusate and after 3 days im more regular. None of the rushing to the loo issues with
laxatives.

HTH

[christianne]

Hi Romina,
I am so sorry - for some reason I must have missed the notification of a new post on here in April and didn't see it, so haven't replied.Of course I remember talking to you before, and thanks very much for the Stokke buggy for my granddaughter it was absolutely fantastic.I am now a grandmother of 3! (2 from the first daughter and a 6 week old from the second)

A couple of things to try with your son. One would be s*d picosulphate liquid medicine(the pearl tablets don't work the same) which is available to buy over the counter,(it can be hard to find but Boots stock it in some branches and sometimes the co-op pharmacy) try using it daily and see if this helps, within a week or so you may see a more regular habit with no leakage. This is because instead of drawing water into the bowel, it pushes the mass dowwards and out. This has been the solution to my sons problem. he is now 14, and since he was 11 and we discovered this he has not had any leakage problem.He has to take it in a higher dose than that recommended on the packet, which obvs you need to have recommended by a medical person rather than doing by yourself.

The other thing is that my son was diagnosed shortly after I was with coeliac disease, necessitating a gluten free diet. This can be responsible for an itchy rash as well as bowel problems, and can be initially tested for it by the GP with a blood test. It does need to be a blood test that is looking specifically for it, not a 'one size fits all' general blood count. If the blood test shows up as possibly positive it can be confirmed by an endoscopy. A word of warning for anyone doing this, the child (or adult) must coninue eating gluten for it to show up on the blood test otherwise it will come up as a possibly false negative.

AS for someone who specialises in tummy problems in our kids, I went to the local paediatric bowel consultant who was luckily very open to suggestions and prescribed the s*d picosulphate .Other than that I have heard great things on here about professor Aziz, but don't know if he sees children? Could anyone else tell us that?

Hope some of this helps

Christianne

[kaleymum]

Hello everyone,
I am new on here and this is my first post, so I hope I am doing this right!
My little girl is 3 yrs and 3 months and since about January this year with have had a problem with her bowel movements. She was diagnosed with HMS early 2011 after I self-referred her to our local children's specialist services due to her feet turning inwards and she was always tripping over. The doctor and HV both said it was due to her nappy but I disagreed. After her diagnoses, things have slightly improved with her ankles and knees and we only have to go back if it get worse again. At the beginning of this year,we had nearly cracked the toilet training but towards the end of January things got worse again. She does not have a solid complete bowel movement in weeks and the doctor said she was constipated and prescribed Lactoluse. This didn't really help and he put her on movacol but she refuses to take it. She is pooing about 10 times a day at the moment, even during the night. The skin around her bottom is cracked and open sores and at first a doctor told me to use sudocream but that did nothing. When she is trying to go, she screams the house down, is sweaty and red in the face and it is now starting to affect her confidence, as she is embarassed about it and goes to find a quiet spot to do it. It is very upsetting seeing her like this and is actually starting to impact on the life of our family.
No doctor has ever felt her stomach, just looked at her bottom and the soreness.
So far we have tried lactolouse, movacol, califig and for her bottom, sudocream, a steroid cream, metanium, vaseline and nothing is working. Her diet is good, lots of water, fruit and veg.
Finally today, I got a different doctor to agree to refer her to the local hospital, in the hope they can get to the root of the problem.
I have had lots of suggestions that this could be a food intolerance, linked to her HMS or a totally different problem.
Any advice or similar experiences
Thank you

[christianne]

Hi kaleymum
Welcome to the message boards, and yes you did it right!

I feel so sorry for you and your poor little one. If you read through the thread, many of our children including my son have or have had the same problem. In the post just before yours I described how the answer to my son's problems was s*d* picosulphate. I think I am not allowed to say the whole name on here but send me a private message if you need the rest of the first word. The reason this seems to wrok in some of our kids(and I have recommended it with success to quite a few) is that it pushes the solids downwards, making the muscles contract when they are sometimes too floppy and weak to do so in a HMS kid. This stops the constipation and the back up of solid matter that results in the continual leakage, and therefore stops sore bottom problem. Movicol and many other laxatives draw water into the bowel to make the stools softer, but in some of our kids this just swells the bowel out because it's too stretchy in the first place, and it doesn't solve the problem. So it would be worth a try.

Hope that helps.

Christianne

p.s I have heard from my daughter that bepanthen is good for the soreness, since it is like nappy rash.