Sons bowel incontinence

[29Ang]

Hi. Is there anyone here who's child is bowel incontinent? My sons 11. Still no diagnosis why. Been seeing CAHMS over 2 yrs. Seen loads of community peads who tell me he's constipated ( he's not) Now recently being seen Evelina Children's Hospital. They agree not constipated. Has bowel exercise programme ( 3 weeks in no change) MRI in September to rule out nerve damage. Was a query hole at base of spine when newborn but at 3 weeks ultrasound, had gone so unsure if he did or not. Due to start secondary school September.

[DaddyOf3Boys]

Hi, I am father of three boys. Two of them - like me - are incontinent since birth. I know how hard it is - from both sides, kid and father. Life at school was hell for me and all kids gave me names, some hit me, some humiliated me,...My oldest and my youngest visit a special school for kids with special needs. The are teached as in "normal" schools and there are two nurses for the needs of the incontinent kids. This helps in many ways: first of all the know that they are not the only one in diapers, second that noone ever teases them for still needing diapers, third that there is a nurse helping them change their diapers whenever it´s necessary.

I don´t know if there is any special school nearby your home but I have a good advice for you: there is a thing called irrigation. Ask your doctor for it.

You can find it here:

olympus-europa.com/medical/...

A thin tube is inserted into the intestine. The bowel will be emptied by an elctronic pump and bowel movements can be held for a few hours.

If you want to talk more or If you want to tell someone about your sorrows, I'll be glad to be there for you and lend you an ear.

All the best and I will be glad to hear from you again.

WE ARE ALL IN GODS HAND! TRUST HIM!

[29Ang in reply to DaddyOf3Boys]

Hi. Thank you so much for your reply. Your struggles all your life and with your two sons. Gosh. I'm lost for words. It is truly reassuring to hear my son is not on his own. At present we do not know if it is a physical medical condition/ physiological or a combo of both. He has had a phobia of using the toilet for a poo since potty training. ( thanks initially to his father's negative treatment of him which has escalated over the yrs) Over the yrs he's slowly lost all bowel control. This was added too by a peadritian assuming he was constipated, which he is not. ( purely because that is the normal reason) and giving him laxatives. Trusting a Dr, I gave them too him for about 1yr. During that period he then lost all bowel control, that still remains today. From that time until present day, he is receiving counselling provided by CAHMS. I live in the UK, it is a service provided, but they do not think outside the box. He will not and has never opened up to talk to his counsellor. I cannot find any private ( paid for) counsellor who specialises in someone like my son. They are all constipation focused. Re schools, our special need schools are not the same here. ( im guessing by your use of the word diaper you are in the USA. ) They are not easy to find, have children with such specific needs he will not be educated to the level he can in his mainstream school. He's very bright, and needs the social interaction of mainstream schooling. I very much appreciate your offer of a listening ear. I've no one on any forum/ website/ friends who are having the same experience as us. There is a querie of EDS medically, as his sister has it and joint pain wise is following the same pathway when she was when she was his age ( she's 27) She is joint hypermobile he is, but not to the same degree, therfore the specific joints they test for the Beighton score is too low, ( if they tested different joints or just listened to his descriptions!) so no Dr is considering that. Paticurlary as usually it encompasses constipation which he is not. Rarely it can cause loss of bowel control in children. Therefore no one is bothering to consider it. Whether it be physiological / physical / combination of both, as he's getting older, the impact on his life is getting bigger. I'm regards to your irrigation thoughts. It as a good idea. At present he has such a huge and total fear/ phobia/ embarrassment/ refuses to talk about it/ humiliation, I know he would not accept that type of invasive treatment and would feel violated by it. If he has this problem for the rest of his life, its a super way of giving him control. It has been suggested by a Dr, but until his psychological issue is addressed, it is not something as yet I will expose him too. Please stay in touch. Angela

[29Ang in reply to 29Ang]

Ps, as you can probably gather from my reply, I'm in a negative place at the mo. Cannot see any resolution, just problems. To hear from you and your story is out of this world. The first person ever in a similar situation and a person who has personal first hand experience. Thank you

[DaddyOf3Boys in reply to 29Ang]

I feel and know exactly what you mean. For my sons there is the family and now the new friends in the special school they go. The are teached the normal plans like in public schools and get a regular certificate.YES, finding this school changes so much for us! I wish, I have had such a good school with understandig teachers and respectful classmates! To me, all was really hell!!

BUT my boys found - thanks God alot - a place with high education, deep friendships and the learned that they are not the only kids their age with potty problems. AND they saw younger kids in wheelchairs, blind little kids, down-syndrome...and often tell me how small their diaper problems are compared to these "poor disabled children". This way leaded them to a positive view at their own illness.

We came tothe conclusion that the best thing is this special school - in Germany, not USA - where their diapers are seen as a "normal thing". What is your son thinking about his problem? Is he embarrassed? Did he talk about wishing it stops immediately? Is he wearing diapers? May be he wants to write with my older son who´s his age? If he hears that he is not alone maybe the pressure goes away and both of you will handle it better.

Do you tell him often, that your at at the limit of your resilience? Is it possible to you to handle this as a "normal" illness and just change him without any negative comment or looks...? If he wnet in his pants just calm him down and hug him and tell him how much you love him - soiling himself or not.

REALLY it´s not easy and if I wouldn´t have made my very bad and humiliating experiences in childhood....who knows how I would handle my boys incontninence.

I am still there for you to talk or just listen and if you send me a private message I will let you know how you can contact me whithout this community.

ALL THE BEST AND MAY THE GOOD LORD BLESS AND KEEP YOU BOTH!!!

🥰😇😃

[29Ang in reply to DaddyOf3Boys]

Thank you. I. So pleased your boys are in such a good place. You sound an amazing dad. My son won't talk about it, listen to anyone talking about it etc. Gets angry with whoever is talking. He's a phobia of it all, including using the toilet ( except for a wee, but is scared of the flush. He's not autistic) . Been in therapy for over two yrs. No change. There's a lot of things going on with him. Obe being his older brother is autistic and can be quite violent towards him and us at times. Their dad is also verbally aggressive towards them. He used to hit them all the time until childcare services became involved. Therefore things at home are stressful. Their dad does not want to change. Doesn't think he's doing anything wrong because he was brought up like that abx thinks he's ok..its amazing what you find out about a partner once you have children together!

[Star1983 in reply to DaddyOf3Boys]

Hiya my son 11 year old and still have toileting problems even through I been trying to sort them out over the last year all so .He's been under the doctor but can not get him seen by the hospital the doctors just keep giving him medicine .plus I also scare for him that's he moving up to secondary schools that's he's going to get bullied any advice thanks

[29Ang in reply to Star1983]

Hi. I feel your anguish. Its taken years to try and get my son support. You need to be pushy with your GP re a hospital/ peadritian referral. Even then, it's not always helpful. Also your GP needs to refer him to a child's counselling service. We went all around the houses for years with silly low grade services that were no use at all as he's so reluctant to talk about it. No-one took it seriously except the family worker at his primary school, who after many year of her trying gecwas referred to CAHMS. Two and a half yrs in with them, they are no help. No one seems to have any experience of a child's problems like my sons to be able to help. I guess what I am saying is its all very difficult. I can advise re secondary school. I'm guess you've not told them about his difficulties. Did his primary school know? Did he have a member or two of staff he could go to if he needed help? With secondary school ( same in primary) You need to seriously speak to them. Be totally honest. Say what his problem is. How it manifests/effects him/ how often it happens/ how you manage it. If he cleans himself, all sorts. It's been a struggle for me to get my son to clean himself. He now has to do two a day ( normally has 5 accidents ) as he'll need to clean himself straight away at secondary school. The bullying risk is too great. At primary, somehow he managed avoid anyone smelling him and stopped declaring it too his familiar person to avoid cleaning himself. I work , so could not just pop to do it. Anyway, secondary school need to know everything. First point of contact for you would be to phone and speak to the safeguarding lead/ manager, or their medical officer. Along with you, and the head of year, you all need to meet and tell them everything. What happens/ when/ any trjggers/ how you/ he manage it etc. Plus any meds he's on, how they affect him. They must complete an HCP ( health care plan) Eric have a formate of one somewhere on their website and lots of info as to what the school has to do. With my sons school their formate of the form is different. They have carried out their risk assessment of it and with me we have an HCP , their plan of action how the school are going to support my son. It is only for one week, and is going to reviewed with view to seeing how his first week goes and any changes that need to be made. This is where I'm anxious that they might try to say they can't cater for him. They are nit allowed too though. It's covered by The Children's Act. Eric also have something about that on their website. I've brought some anti smell bags from Amazon ( as I found our they are mainly used to hide the smell of weed when travelling 🙈) His HCP, at student reception he's a crate that had enough changes of trousers and pants for the day. Depend on whether it's a PE day depends wgat he takes in that day. Also is his flushable wipes. Hope we don't block their pipes up! He's a small spray bottle I've filled with a strong disinfectant for him to spray onto his soiled pants and smelly trousers before they go into a nappy sack then anti smell bag. ? He has the travel home by bus with his dirty laundry so I've also brought a carbon lined anti smell bag that he'll put his dirty things in, collect it from student reception at the end of the day to go in his school bag. ( All this is not cheap, I've spent over £50, and the smaller black plasticity ones reviews say they don't last long) The school have a toilet that is on its own, with a sink in it ( not a cubical in the general boys toilets ) he's to get the key from student reception to use it when ge gets his plain sports bag I've left in his crate that has everything in it he needs, then return it all. I've made sure it fits with uniform bag regulation so it will look normal him walking along the corridor with it. He will have a toilet pass. Unlike the other students who have one, they will have spoken to all his teachers, including PE, so he can immediately leave the classroom. Otherwise the student next too/ behind may smell him. Other students have to wait to be escorted. All the classes seating plans will put him the desk nearest the door so avoid him walking past other students smelling. I hope all this is of some help. I've brought some Tenna lights for him to stick in his pants to block the smell a bit and make it easier re his pants. But ge refuses to use them. Re PE, we are lucky as on PE days they wear their PE kits to school. It saves any potential bullying in changing rooms if he's had an accident at that time.

[OlivesYou]

Hi there! Does your son have any lax on board? I found this AND getting enough to drink are key to my sons success (now 17) he was impacted and he seemed be able to with hold , he didn’t listen to his body. His bowel had been stretched and is now smaller. It’s taken more than 2 years to shrink down. I had no clue it would take so long!Does he like video games? Does he have an iPad or iphone he would play with anyone whilst on the loo? Hugs momma 🤗

[29Ang in reply to OlivesYou]

Hi. Thank you for your reply. He is not constipated. Dr's kept telling me he was and giving him laxatives. ( purely coz its the most common cause) Finally saw hospital consultant who said he's mot. He's been given a bowel training programme and not allowed books/ phone etc at all. Has to concentrate on the feeling of pushing and going as he's no sense of the sensation. He's also an MRI to check for nerve damage. The programme is not making any change. He starts secondary next week. The school is saying he's not secondary school ready, so thinking of refusing him. He needs mainstream education for so many reasons. Thank you again for your reply. I wish you well. All so stressful.and impacting on daily life, meticulous planning etc for all of us.