Support thread for encopresis/soiling

[missymum]

Hi there, I have a 4.5yr old just about to start school with this issue. She has been seen by the specialist bladder and bowel clinic and underwent movical disimpaction regime and continuing movical treatment and iniatailly I felt so hopefully but the soiling started again for no obvious reason 6 weeks later. Clinic prescribed a stimulant in case it was incomplete emptying but she ended up with terrible diahorra so now back to movical on alternative days and she's still soiling inbetween bowel movements . I feel we have tried everything ( regular tolieting after meals etc) and I am just so sad about how this problem impacts every aspect of our lives School have been lovely but am seriously struggling to see how they are going to manage it and I'm so worried about how this may affect her at school. I'm just wondering if anyone can offer any positive stories or is going through the same, thanks and sorry for epic post!

Bump

Sorry cant add anything positive as DS is about to be 10 and no better than at 4.5 and recently had an operation to try to improve situation but it has not. My advice is don't let each type of treatment drag on ie after a few months try something else or see someone differently privately or get a new referral. Also plan with school how they will manage it as they used to call me in every few days to clean DS up (with a new born baby and toddler in tow) whilst DS sat in his poo waiting for me to arrive. My advice would be to get a health care plan in writing with school so they cant back track and call you in. How long has it been going on? How much movicol is he on each day? Could he have got impacted again? Could he have lost sensation if not identified early enough?

Thanks for reply. I would say problem has been going on since age 3, took a long time to get help, been on movical for 3 months .. I have no clue why the soiling started again as after disimpaction we were free of it for 6 weeks now it's 3 changes a day inbetween regularly tolieting. We tried ducolax but it gave her v bad diarroah. I do think she has loss of sensation yes but not all of the time as sometimes she just goes without a problem. I just can't see an end to it and from what you have described for your poor Ds neither can youwe wrote a health plan with school but things had not deteriorated then although they have said they will change her.. They have no idea how often they may need to be doing that though! Did you have periods of improvement at all with your Ds? I'm wondering if I should be requesting an X-ray. Thanks again for reply .

My LO has also just started school and is withholding. Doctor prescribed Movicol, but honestly it doesn't seem to be making much difference. He hasn't been on it long though and doctor said it could take months. School are understanding & seemed aware of the condition but he's not being changed. I cannot help much with advice as I am in the same boat, but it is nice to speak to someone in same position as no-one in my friends & family has ever heard of it and cannot understand how frustrating and stressful it is!

Hello, my name is Storm, and well, I'm a kid who got Encopresis at about 4-4.5 as well, and I'm glad to say a year ago (i'm 18 now) I beat it, no medication, no nothing, after years of beat up I just found a way. Please, if you're still active and your child is still having this problem do send me a personal message on Facebook (Storm Freeman) or look towards the Reddit Encopresis thread where I've recently been posting a lot. I really wanna give all the advice I can on this, I think I can genuinely help some people here out here.