Hi So my year old was doing ok. I soft poo pr day and 10 ml of lactulose on the odd day he doesn't poo. He then poos next am. Soiling but not much once a day just before poo. However he does have a lot of bowel discomfort and pain.
BUT we camped with friends. 2 nights. He didnt poo there and then did a mega poo as soon as we got home.
Next evening (just now) he has had a massive soil he hid. We never tell him off but he suffers a lot.
My question is about the emotional distress. So he often in the evening says horrendous things about himself. This comes just before sleep when i lie next to him. He is calm. He says things like he despises himself, he says he is disgusting and so on. Ive tried to listen, to obviously reassure him that he is none of those things, to snuggle him. It almost makes it worse. Ive recently tried to say " no we are not going to talk like that tonight" . Then he just says he hates me. He says he feels sad and i make it worse. He tells me to go away.
I understand that he is really distressed and often in pain. ( refuses calpol as he says it doesnt help, the pain comes and goes) Hes tolerated this for years now. Many dr visits etc. We see the gastro consultant in october.
I am unsure if his emotional distress is purely caused by the bowel issues or if there are other things. ( nothing obvious going on in the family..)
Is it common for children to get so emotionally unwell from this? And how can i help other than push for mental health support for both of us? And how do other parents/carers deal with this distress?? And this anger directed at me. Do others experience that? I try to hold it for him but its so difficult when he is so upset.
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Mumanddad1
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Hi.Thank you. Lots of the resources know but i had not seen the video. Its very helpful actually. I just wrote a big message detailing dome of my sons medical history ( hes had quite a complex and traumatizing and long ride- like most on here i can see) and then i got worried about his confidentiality and who i am taking medical advice from. Can i just ask if you are a nurse? Your advice is great but my son and i have been down many dead ends and i just wanted to clarify who i am actually talking too ? And yes about the confidentiality. Obviously i wouldn't share names and personal details that can identify him and i know the wider community on here would see the message but my account is obviously linked to my email...?
Please i hope you dont think me rude, i dont mean to offend. I have probably missed all this info somewhere obvious.
Hi thanks for letting me know. I can tell you know your stuff and as said your advice and signposting is great. And im sorry you are on this journey too with your little one.
Can i ask how you know when they are i their recovery please? When the colon is just leaking because the signaling is still broken and the colon is stretched.?My instinct is that my son has been cleared and that he is healing. Albeit slowly. Its still traumatic at times but he goes to the toilet every day. Almost. And obvioysly its not a linear recovery. Full if set backs. But how do you know ??
On the physical side it sounds like your son is doing better than ok if he is generally doing a soft poo/day. Something that many here can only dream of!
I’m no expert on when to disimpact but it sounds like he is not feeling the signal when he needs to poo? Or maybe he is withholding?
But your question was about his distress.
Chronic pain/ discomfort and the shame and self consciousness around soiling would take a toll on anyone’s mental health. And with all the clear love and care which you have for him, it may be very hard on you to be pushed away like this and be the target of his anger.
Difficult when the natural response is to counter the things he is saying about himself, but if you can, I would suggest just listening and asking gentle questions to find out more about how he feels and what experiences he is basing this on. He is able to verbalise his distress and is trusting you enough to tell you. This is actually a very good sign. It sounds like he gets angry when you try to soothe him because he wants you to listen to the difficult thoughts he is having. You could also suggest that he draw how he feels too. Having the difficult feelings recognised can be enough to relieve them or help him move forward in his thinking.
If finances allow, and you can’t wait for nhs counselling, the British Association for Counselling and Psychotherapy (BACP) have an online directory of registered therapists. Make sure they are qualified to work with children or families. I imagine this could help with his shame/ self criticism and may help the physical side too.
Hi. Thank you so much for taking the time to write so detailed. Hes a strange one. He was never constipated for more than 3 or 4 days so we took ages to realise the issue. His main problems are daily soiling and now pain. And withholding. Weve had big battles with getting him to go in the past. I genuinly think were both a bit traumatized from that..... but over the last year he has been willing to take big steps to try to improve his situation.
However i think the consciousness of it and then the realization that this takes so long, that there are so many setbacks and that everything is so indefinite has really disheartened him badly. He says he feels its his fault.
Your message was so kind it made me cry. And i took your advice and just did active listening with him today when it happened. He said really horrible things about himself and me. Violent things. But i just reflected on it with him like you suggested. He quickly snug in for a big hug. So i think you are right. I might just need to listen here.
If we can we will do counselling. Our next step is getting to the consultant appointment.
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