Argh 😢

[Robinia]

Just cried my eyes out in front of my son and then my daughter came in too. My son was crying with me and then went to get us both some toilet roll to blow our noses with 😭. He’s in such dreadful pain. I gave him movicol yesterday after a break coz it’s been causing him immense pain, and today the pain has ramped up again to a point where he has been howling and yelping like an animal. He was so lovely when I broke down. He told me to tell him the thing again about the long road we are on and how it’s just we’ve taken a wrong turn.

My daughter was comforting me too. I guess I’m just reaching out to the wonderful Eric family out there who can relate to the dreadful pain of constipation especially with the ones who don’t respond to the movicol.

I don’t need advice. I just want to know you are all there and understand the terrible guilt of a parent whose child is in pain and who you feel helpless to help as when you try to help sometimes it just seems to make things worse.

Thank you to all of you for being there and posting about your experiences. It helps me so much to know we are not alone on our long road.

😓

[Allyem1976]

Please message me when you feel like this. I know you don't want advice but I have two bits; never stop the Movicol. Ever. And maybe trip back to hospital A&E. Sounds like impaction again... ☹☹☹☹

[Robinia in reply to Allyem1976]

Thank you 🤗 yes he’s very impacted I’m sure. I think it’s like a dam and the movicol is putting pressure on the dam. It’s just he can’t live with the pressure, it’s making him experience too much pain. The continence nurse is phoning again tomorrow and she’s supporting our next gastroenterologist apptmt and has got him a sooner one in November. A&E don’t help sadly coz hes tried enemas and they didn’t work coz the blockage is too high. The movicol disimpactions haven’t worked either and neither has the Senna or the bisocodyl. He can only poo on the loo for 2/3 days after the chiropractor apptmts and not in large volume. But something is better than nothing. And she seems to be able to reduce the pain to almost nothing for a while. It’s just the days in between the weekly apptmts he has to get through 😢

[SallyandPaul]

Bless you all, feel so much for you. Just wish I could do something. Praying for you right now. Does he take anything else like senokot. Surely some medic can suggest something !! So frustrating and upsetting xx

[Robinia in reply to SallyandPaul]

Thank you 🤗 everything we try seems to cause him great pain. He tolerated the Senna for a while but then that got too painful. My guess is there is a significant impaction high up in his colon and nothing is shifting it. I spoke to the Eric helpline today and the nurse I spoke to was amazing and made me feel more confident about pushing for further investigations. It’s just when his pain gets past a certain level I feel myself dissolving into a mess trying to help him get through it and then I feel angry and helpless and that someone should be able to help him. At least our continence nurse is listening and is going to hopefully speak up for him and the impact it’s havinf on his life.

[SallyandPaul in reply to Robinia]

I reall really hope and pray that hat he gets the help that he needs soon. Please try not to feel guilty and blame yourself. As mothers we want so much to make everything better for our children and you are doing absolutely everything you can. I'm hopeful that you will get that help very soon. Stay strong you're all being amazing xx

[Yippieyay81]

Oh I really feel for you. We are just at the start of this (my daughters been constipated for a few months) but I’m beginning to feel the stress & guilt of it, especially when you can’t help. Sending quickly as rushing out door but we’re all here for you and I really hope your lb gets some treatment that helps soon X

[Laundrymaid]

Hey Robinia,

Sounds like you guys are having such a hard time of it at the moment - hang in there kid and don't ever feel bad about letting your children see how deeply you care! Your love is a gift that comes in many different forms. As parents we feel things for our kids in a way that is multi layered. We feel their pain even though it's not a physical sensation, we fight their corner even though it's not about us, we try to manage the impact on our child and the impact on our family and live the frustration. Have a good howl - you are only (super!!) human then turn all the negative frustration into the energy to go into battle again!

Sending you strength and solidarity.

The Laundrymaid xx

[Helen36]

Oh Robinia! Your message has just made me cry on the train! My heart goes out to you and especially your poor son. Nobody told us parenting could be this tough did they?! My mum would always say “let’s count the positives”... so... (1) you have found chiropractor treatment is helping at least a little: this is a massive breakthrough for you and all down to your hard work and research of what might help (2) you cried last night because you love him so much and are trying so hard to help him. It breaks my heart to think of all the children out there who must have less supportive parents but struggle with these issues (3) you are talking to the nurse today so have that as a marker for a positive next step to work out what to do next. Hang on in there, we can only take one day at a time with this. Your son is a wise little boy, this is just a small detour on the road to a life without this . Big hug xxxxx

[ivory_47]

Hi Robinia, I just read and cried for all of you - it’s so tough!😔😔😔

We saw a private gastroenterologist at Great Ormond Street hospital as no-one else could help us. The NHS is great, but they failed us miserably with this... He’s called Prof Mike Thomson and he really knows his stuff. He recommended us to stop Movicol as it was not working for us, and he put our daughter on liquid paraffin instead, which cleared her. I would try and go and see him if I was you. I would agree with one of the other posters though, whatever you do, do NOT stop the Movicol or reduce it until he is cleared or you have a different medicine.

Good luck lovely xx

[M-bass]

I feel for you and your family so much. Through this long long journey there are major ups and downs... and sadly more downs it seems. It’s so lovely to have this place that other mums in a totally similar situation are listening.

Big hugs x x

[Robinia]

Hey thanks so much for all of your responses all you wonderful people.

What a comfort to feel less alone.

We are trying a hypnotherapist now to help manage the pain. The GP has said no more ibuprofen as his soiling has been black recently and this may indicate a bleed in his tummy somewhere. Poor boy is really struggling with school. Paediatric gastroenterologist doesn’t want to see him, wants the paediatrician to manage things 😂 makes you want to laugh and cry at the same time!!!! I suspect the medical establishment has nothing to offer other than telling us it’s constipation and we just have to manage it. So trying the complementary health route I guess. One day my son will grow into a wise compassionate individual as a result of this hardcore healing process. That is my solace. Thank you to all of you wonderful parents for being there.

Big love 🤗 (sorry for the schmaltz...I’ve had a glass of wine 🍷 😉)