The future looks bright

[Nicky555]

So just over a year ago we had a 13 yr old boy placed with us. He had been soiling day and night since he was five and we were told it was emotional and not physical. We started from square one with a referral to continence clinic.

They said he had severe constipation and that his bowel did not work. He had lost all sensation and did not know when he needed to go.

We did a disimpation last Christmas and started the long process of maintenance meds with pessaries.

Our boy hated the medication but stuck with the high daily doses and very slowly we started to reduce..

A year later and we have just stopped his medication. His bowel healed, his sensation returned and he hasn’t had any accidents since last January.

It’s a long slow process that at times we were tempted to rush. but he’s now a happy healthy 14 year old who is enjoying life without having to worry about having an accident.

Stick with it guys there is light at the end of the long dark tunnel.

[Laundrymaid]

What a fantastic result, well done to you and your boy Nicky!

Wishing you and your family a very happy Christmas.

The Laundrymaid xx

[ivory_47]

Amazing, thank you so much for sharing this story!

[Hidden]

That's so encouraging to hear! Thank you for sharing your story xx

[SallyandPaul]

Thank you so much for sharing your amazing story,so pleased for you. We used to foster and adopted our daughter who is now 9 and a half. She has been suffering with this for six years. She was referred to a consultant because of repeated UTIs. He wanted her to have a colonic transit X-ray which in itself wasn't a problem but she wasn't allowed any laxatives for a week. This meant everything went completely pair shaped and she became very bunged up and has been doubly incontinent for five weeks. It will take months for her bowel to recover. Could you possibly tell me how you adjusted the medication and what your boy was taking please.

[Nicky555 in reply to SallyandPaul]

Hi SallyandPaul. We had to go right up to 12 sachets of movicol to get to brown water stage during disimpaction. This was the halved to six sachets for daily maintenance dose alongside daily picosulphate pessaries. We then slowly reduced pico sulphate to every other day then every three days whilst staying on the maintenance dose of movicol. When we got to every 3 days for pico sulphate (which he called his bullets) we reduced movicol to 4 sachets daily. Then after a while stopped pico because he had started to feel that he needed to go himself.. it was a good six months before we started to then slowly reduce movicol one sachet at a time. Continence clinic wanted him to stay on 4 sachets for another 3 months before further reduction so his bowel could heal properly then 3 months ago we started reducing from 4 and two weeks ago we stopped all meds. It was a long process but needed to be because of the damage from the long term severel constipation and impacted feaces. His nerve endings were damaged too. Taking high doses of movicol was the worst. He hated it but we made it really cold and he found drinking through a straw helped limit the taste. First 6 months the hardest and by the time he got to just 4 sachets he could down i it in 10 minutes without fuss. It would’ve been easy to rush the last 6 months but clinic said he needed to wait to give Boswell time to heal so we stuck with it. He’s so happy and says he feels free. X good luck with your daughter. Let her know it canard will get better xx

[SallyandPaul]

Thank you so much, that's really helpful. Is the picot suppositories? And was he having accidents during all of this?

[Nicky555 in reply to SallyandPaul]

Hi yes pico is a suppository and no accidents a few days after the disimpaction because he knew after each pico he needed to sit on the toilet about 20 mins later. We did movicol in evening before bed and pico straight after school. We had to work out the best times based on how his body was reacting to the movicol and pico.

[SallyandPaul]

Sorry just realised that you said that picot were suppositories. It's so great to know that it can all work. We have been doing very similar,bearing in mind that she's younger and smaller and because of the laxatives and numerous disimpactions hasn't been properly constipated until this last episode with the X-ray. Things are very slowly improving,it helps when she's at home and not school

[SKY01]

What great news! Well done and thanks so much for sharing. Out of interest, how did you know when was the right time to reduce (and eventually stop) the meds? My son is much younger, 5 months after a successful disimpaction and on a maintenance dose of 2 sachets of Movicol and 2.5ml Senna. Working well and he's pretty much accident free now. Wondering how and when we start to reduce though...

[Nicky555]

We listened to continence clinic nurse. I would’ve done it earlier but she said we needed to give Boswell a chance to heal. When we did it was by reducing slowly so when on four a day we did three one day then four the next two days then three one day then fourfold two days for a few weeks then three for two days and four for one day etc etc giving each reduction several weeks before reducing again. We never used senna so I’m not sure about that.

[Frustratedmum1]

It is brillant hearing news like that. I'm so happy for you all. Have a Happy Christmas.

[CN4321]

Great news - well done I’m really happy for all of you

[Evala]

Thanks for posting, well done with you support and patience, and knowing not to rush things. Great to hear a positive story.