Feeling beaten

This is my second post on this forum. I've found it very comforting to know we're not the only family going through the battle of constipation and how it effects the bladder. I've had lots of down times and when I look on here it helps me to feel positive again.

This morning however I'm feeling completely beaten. I feel like I can't do this any more. All I want is a normal life. To be able to go out without expecting an accident. The longer it goes on the harder it gets. We reach the 3 year mark in June and I've really had enough. There's no let up to it at all. It's just constant.

Sorry for my post but just feeling very beaten and down. Anybody got a magic wand? 😉

10 Replies

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  • Just wanted to reply to send some positive vibes whilst your feeling so low.

    It's such a rotten thing having to deal with the accidents all the time. How old is your child now?

    It took nearly 4 years for my daughter and I to get to an accident free place. I used to feel really down quite a lot of the time not knowing if it would ever end, the pooey pants. It was poo for us not wee accidents.

    It was constant, the nervousness going to school not knowing if I would be taken aside discreetly to say it had happened again. Going to people's houses and having to be constantly watching her. Not being able to leave her at parties like other parents did. Not being able to sign her up for after school dancing or summer holiday clubs. Knowing that if she played in the garden she would probably poo her pants.

    Do you have friends and family that you can discuss it with. It is mentally tiring isn't it.

    What medication or laxative regime is your child on now? Are you waiting to see anyone at hospital? Or are you just with gp right now?

    We cracked the poo problems with a mix of laxatives and behavioural measures. It was relentless but I just got on with it, you have to don't you...

    I tried really hard to not let it define my daughter, to me it was such a major part of who she was but I just had to focus on the positives, the things she was good at and the sweet loving child she was. It wasn't her fault that at age 6 she was still that way, didn't have the maturity to fully try to help herself.

    I think age for us was the biggest factor to help improve the situation. She is nearly 7. My GP told me most kids are over toileting issues by 10, and by 8 if you are lucky.

    I don't really know what to say other than there is a good chance things will get better in time.

    Keep writing on here, lots of others to share your bad days with and maybe the odd success.

    Sending virtual hug x

  • Hi

    Adam is 5 and a half now. He potty trained really easily in June 2014 and for a few weeks everything was great. He then regressed and has never gone back. We're suffering both poo and wee accidents (the wee accidents are daily).

    I do have friends and family that I can talk to about it and they've been great. They just don't understand how stressful and tiring it is. Yes it is mentally exhausting. This has become our lives now and I can't remember what life was like before.

    My son was under a Paediatrician (since March 2016) who has been more than useless. My son went into hospital in February to be unblocked again and then we started a 'daily plan' written up by the play therapist. The only reason he was taken into hospital is that I threatened to complain. All the Paediatrician wanted to was wait, wait and wait. He was even going to leave us from August 2016 to January 2017 to see 'if the school peer pressure would kick in'. It was in the November that I threatened to complain as the Head Teacher of Adam's school got me all fired up.

    Adam was amazing when he was discharged and for a couple of weeks life returned to normal, but again he's regressed. As the Paediatrician hasn't even sent us a follow up appointment I've contacted my GP and asked her to monitor his constipation. He's currently taking 7ml of Senakot daily. I don't really want to go back to the Paediatrician as he didn't seem to care or understand how it was effecting us all.

    Like you, I don't want this to define Adam either. I love him to bits and he's such a lovely little boy. It's just that everywhere we go (After School Club, school, holiday clubs etc) we have to explain his problem. Fingers crossed that he is okay in holiday club over the Easter as I may well get called out of work to clear him up.

    Thank you so much for your post. I know deep down it will get better but it just seems to drag on and on and on. I'm not feeling low today and I've just looked at pictures of Adam when he was younger and it's made me smile and remember who he is.

    Thanks for the virtual hug too. xx

  • Very sweet post, I'm the mother of a 4 year old boy and you just described my life in a nutshell!

    I try too to not let it define him, or my relationship with him. But it was incredibly hard to put my frustration to one side. I'm better able to manage that now, but of course there are good days and bad.

  • Luella speaks so eloquently that there is not much I can add. I agree with you both and just want to send my sympathy and complete understanding. My daughter has had this for over four years and is eight tomorrow. Again she is not a very mature child and this has not helped although things are very different from four years ago. When I get down and frustrated I try and remember that she could have a lot worse. A GP did add a few extra dietary comments a while ago one being that they should drink before food and not during or after as this dilutes the gastric juices which makes sense. They can have fruit juice though. I have no magic wand just loads of understanding. God bless x

  • Thank you very much. I will try the drink before food and see if it does improve things a little. Adam does tend to drink after meals.

    Thank you for your understanding. It's so nice to find families that are going or have been through the same thing.

    xx

  • Sorry, no magic wands either but if you find one, could you send it my way once it's worked it's magic for you! Seriously, you are so not alone. I have had days like you that feel like I've hit rock bottom, and then days full of hope....yesterday we had a whole day and night without any accidents, even with a 2 1/2 hour walk! Stupid me couldn't sleep, hoping this could be the start of the end but then worrying about whether it would all come crashing down again today...no surprises had accident again overnight but at least it's a sign that she CAN do it so has to be good news, right? Oh to get off the roller coaster ride. Hang in there, you aren't alone and great to have others on forum to reach out to. x

  • If I find one that works I will definitely send it your way. ;)

    This is, as you say, a rollercoaster ride. Like you we had a good couple of days last week but this week is a different story. Adam went to Marwell Zoo last Tuesday with school. He had absolutely no accidents, one wee on Wednesday and again one on Thursday. We thought it was the start of the end (again!!) but I don't hold out hope until it happens for a longer time but at least we know he can do it.

    It's lovely to know that I'm not alone. Thank you for your comments and support. xx

  • Really do hold onto those good days...I found the older my daughter got the good days very slowly became more frequent.

    You do have the right to ask which hospital you are referred to and even which consultant. You may not get to see that consultant but someone in his/her team. Speak to your GP about an alternative referral. Maybe do some research online about consultants, usually it will list the names of consultants under the hospitals website and if they have any special interests. Ideally you want a paediatrician with a special interest in gastroenterology (for the poo issues) or urology (wee)

    Your GP may not agree to refer you but you have the right to ask. Look on NHS Choices website.

    If you decide to return to the same paediatric doctor that you saw before (or you have to) then phone the hospital paediatric reception and ask them about your appointment. Sometimes you have to chase things.

    It seems to be real pot luck as to who you end up seeing. Our consultant was so lovely, I couldn't fault him in any way, hopefully in time you will get this level of service too from a specialist.

    Best wishes x

  • No magic wand I'm afraid, just sending big virtual hugs. I heard you. I'm listening. I understand.

    X

  • I feel for you, it must be dreadful. Bad enough my 13 year old being wet at night. Could you try pants under a pull up or I think there are plastic pants you can buy and then they feel wet but not so bad for you when out and about. Just a thought - good luck!

    Hard, but try to remember it's not their fault and try to arrange something special for yourself as a reward for being such a great mum!!

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