I am losing hope. : I have written about 4 posts on... - ERIC

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I am losing hope.

61 Replies

I have written about 4 posts on here and I am starting to loose hope. I am still bedwetting. Disimpactation didn’t work for me I am still consitpated and am now starting to soil 2-3 times a day. In terms of peeing - I am now getting these sudden urges to pee at any moment often these are so sudden that I don’t make it to the toilet in time and end up having an accident. If anyone has any advice or tips it would really help - I am really loosing hope. Please help me!!

61 Replies
Robinia profile image
Robinia

Disimpaction doesn’t always work. You need to get back to the GP and explain the problem and see what they will do about it. Definitely a hospital referral if you aren’t already under a consultant

in reply to Robinia

The doctors have refered me to the hospital but the list is so long that there if really no point. Do you have any advice on the bladder situation

Robinia profile image
Robinia in reply to

if you’re constipated then it will be difficult to manage the bladder issue. I would go back to the GP and say you are going to complain to PALS (patient advice liaison service) at the hospital if you can’t get seen sooner as it’s having such an impact on your life. GPs do different kinds of referral, urgent and routine, also they refer to different specialists at the hospital. They could refer you to the local continence service to. Unfortunately it can be a bit of a battle. Stay strong 💪🏻

in reply to Robinia

Ok - I am losing my will power now

MiHe profile image
MiHe in reply to

Please don't give up. You are not the only one in a situation like that. Really go back to your GP and explain why it is so urgent to see someone as soon as possible. that's what they are there for!!

in reply to MiHe

I wouldn’t even know what to say if I went back and they would only tell me to wait so what’s the point

Robinia profile image
Robinia in reply to

I would ask your parents to support you at the apptmt. Me and my son are currently in hospital as I write, second hospital in 2 days, waiting for another enema as the one yesterday didn’t work. I would urge anyone who is not responding well to full disimpaction with movicol to seek further medical support. Another thing you could try is talking to the GP about trying another disimpaction week/10 days and introducing some Senna alongside and upping your maintenance dose following disimpaction to 4 sachets. Then going down from 4 very gradually. Sometimes you have to stay on 12 at the end of the disimpaction for 5 days. Another thing you could try is suppositories. But best talk to the GP first xx

in reply to Robinia

Sorry I don’t understand somethings what is an enema and suppositories? Also what does Senna do? How did your appointment go

Robinia profile image
Robinia in reply to

Sorry didn’t mean to refer to things that sound confusing. It’s just the journey my son has been on with constipation has had some really rocky episodes and he’s having one at the moment. All I want to say to you is stay strong and find people locally who can help as well as using this forum for gathering information. Wishing you very well xx

in reply to Robinia

Thank you

MiHe profile image
MiHe in reply to

Do you have someone you can talk to who is able to help you with scheduling appointments and referrals? One of your parents? A good friend? It's good to have someone who knows you, you feel you can trust and might be able to come with you to appointments. There might be an underlying medical condition, so it's better to check it all out.

You are not the only one with the problem. I grew out of my bedwetting in my early teens, in my case with the help of a child psychologist who was trained in cognitive hypnotherapy.

You will find your way, keep on searching for it!!

in reply to MiHe

How did you deal with the bedwetting?

Slice profile image
Slice in reply to

Hey Sunshine! I'm sorry not to respond earlier, but it's hard to follow you when you keep starting up new threads on the same overall topic. An enema is a procedure where warm water is introduced to your colon via a tube connected to a bag of that warm water. You are then asked to try and hold that water in. That water helps soften up the stool that is in your rectum and colon to help it to come out easier. A suppository is sort of pill often made with glycerin that is inserted into your rectum. The idea is to try and hold that in for a while. The glycerin will soften with the heat of your insides an help soften and lubricate the feces hopefully making it easier to get out. This is one of the shortest vids I could find but it's really geared towards nursing students. It still gives you and idea of what it's all about. youtube.com/watch?v=vBdOFAW... I still think that maybe you need to get someone who will do a more extensive workup on you to see if there is some reason why you are so constipated.

in reply to Slice

Thanks you - it is hard

Slice profile image
Slice in reply to

Hey Charlotte, I'm sure you know this already, but I'm just going to throw it out there. Remember that because you are a female, it is all that much more critical that clean up after a soiling accident is done thoroughly to help minimize the chances of a UTI. Please keep us updated on what is happening, and please keep it to one of the threads that you started. Thank you, and remember that you are awesome!!!!!!!

in reply to Slice

I know about the cleaning up and I will do

Slice profile image
Slice in reply to

Like I said, I'm sure you do. How are you coping?

in reply to Slice

Not very well - my anxiety is through the roof - I had my first day of year 11 today

MiHe profile image
MiHe in reply to

I did have quite supporting parents who went with me to doctors and tried to get medics to listen and to refer me. Unfortunately some of the mental health helps (such as cognitive hypnotherapy) are not paid by the NHS. But it is worth making enquiries. It seems to have an effect on your whole mental healths at the moment, with low self-esteem. Something like cognitive behavioural therapy would work well to start boosting you mental health, which will help you to cope better with it. At least, that was very important for me.

Have you got someone who can help you with visits to doctors?

in reply to MiHe

Yes I do

Slice profile image
Slice

Hey Charlotte, how are you doing? Have you done anything to get some support? Have you found any friends that you can confide in to help you through this? Not so much physical help, but peer support and friendship. I know that we've talked about this before, and you had a bad situation happen, but that's not everyone. Perhaps one or two of your closest friends could get together with you and you could do a mediated chat with them with one of your parents, or some other adult who perhaps help explain things.

in reply to Slice

Hiya not much has changed - I try to talk to them but I can’t get the words out at the moment it feels like me vs everyone else

Slice profile image
Slice in reply to

Here's a thought for you. One of the things that is adding to your stress is that talking about our bodily functions is, to many, considered a taboo subject. Is there a friend that you could get to come over to your place, and with them there, your mom or dad could help you explain the situation? Start with one, and then gradually gain the confidence to share with others. Once you have a few friends that understand what you're dealing with, you won't feel so alone in dealing with this. Remember that it is understandable to feel embarrassed about this, but you should never feel ashamed. It's not as if it were something that you were intentionally doing wrong. Hang in there! You are AWESOME!!!!!!

in reply to Slice

Thank you so much for you help but I don’t think I can face talking about it yet - I am just going to have to deal with the stress.

Slice profile image
Slice in reply to

Oh hon, do me a favor and sit down with your mom or dad and talk to them about this, and your sharing this with one or more of your friends. I think that part of the stress is from the worry of others finding out. I would think that the first one is going to be the hardest. Do you have any cousins or other relatives that don't know about what's happening? Maybe you can start with one or more of them. Please trust me when I tell you that, yes, there will be some who will be real jerks about it, but people who are truly your friends WILL understand. You come off as being a beautiful person in your mind and personality. Let that be the focus of whom you are. I know it's scary. This is a time when having to deal with things like this that make you different are extremely uncomfortable, but you know, in talking to others, you may find someone who is also dealing with a similar problem. Again, sit down and talk to your mom or dad and see what ideas they have. I truly believe that your stress is mostly the fear that others may find out. It will be much better to hear it from you before there's an accident and they find out that way.

in reply to Slice

Hiya - I feel like I have been living with this secret for a long time and I am not sure I can face letting the world today. I have done my first proper poo today even though it hurt I got the sensation though so that is good

Slice profile image
Slice in reply to

That's awesome!!!!!!! Keep up the good work! Hey silly, the idea is not to let the whole world know, just a few of your friends so that they can support you.

Slice profile image
Slice in reply to Slice

Here's another thing. I think I mentioned this before, but will mention it now. Have you done anything about getting yourself in a better position for a poo? The so called "squatty potty" is a commercially made product. bedbathandbeyond.com/store/...

_googlepla_nonbrand_bath_online&product_id=42494126&adtype=pla&product_

channel=online&adpos=1o1&creative=224060487099&device=c&matchtype=&

network=g&gclid=CjwKCAjw0JfdBRACEiwAiDTALhtVePBcjUMxz_

B2s4vX0L6EuB2OGZurSkDczLlhpJBI3RfLAFP5XBoCclAQAvD_BwE&gclsrc=aw.ds

You don't necessarily need to buy one, but the idea is to get your knees up so that it changes the path a little of the poo coming out. It does this by shifting the position of the rectum slightly and opens up the passage from the end of the sigmoid colon into the rectum. You can find other things to make this possible, or if your daring enough, you can stand on the seat and squat. Yes people do that.

in reply to Slice

Oh ok - I have never tried that before but I will try anything

in reply to Slice

I know but to me a few friends feels the same as the world

Slice profile image
Slice in reply to

I guess that's fairly common thinking in the early teens, and I supposed that the internet and social media make it harder to see the reality. You make me wish that there was a way to reach through the computer and the internet to physically give you a great big hug. Is there at least one friend that you have that is as close as a sister would be to you? Perhaps you could start with them, and if you don't want to do it alone, perhaps one of your parents, or someone else that you trust such as a pastor/minister, teacher, or some other adult that might help you through this. If you have that friend, take a leap of faith and trust and talk to them. I know you had problems before with 1 person, but not everyone is going to be like that. I think what's bothering you is that you feel as if you are not normal, that you are different and people won't like you. Well the reality is this. First off understand that you can't please everyone not all the time, not at all. Next, what's normal? Last, if we were all the same, it'd be a pretty boring world. I know that you're scared, but like I said, if you have that 1 friend that you believe in as a really close friend, you owe it to them to trust them and tell them what is happening. If they act badly about it, I guess they weren't that good a friend. But trust your gut feeling about how close a friend they are. Hey, who knows, it might even be a guy that you're more comfortable talking to about it. Remember to keep up on the fluid intake (lots and lots of water) and that you ARE AWESOME!!!!!!!!!!

in reply to Slice

Thanks - I am 15 so I have been dealing with this for a long time now and I guess what I a really scraed of it the anxiety attack I would have before and if they might use that against me. I am already being bullied at school (different thing - people don’t like that I try hard) I wouldn’t want that to happen with this. The only other person that know is my head of year (other than my parents) she is lovely but I still get anaxious speaking to her (known her for 4 years) I don’t know I suppose I should tell a friend but I don’t think I am ready

Slice profile image
Slice in reply to

Hey sunshine! You don't have to mention names, but do you have a friend that's really close to you, almost like a sibling? One of the things about talking to someone else, in this case and adult, is that they can give you a different perspective, and a more objective view of things and how to deal with them. Have you talked to your head of year about the bullying? It doesn't matter what it's for, it should absolutely not be allowed in your school. If you haven't reported it, is it because you are afraid of getting more bullying? Perhaps if you went to the head of year, or if you have a counselor at school, you could talk to them confidentially about ways that you can stop the bullying. You should know that if there is any type of physical violence, you ARE obligated to report it to protect other students as well. If it's just verbal stuff, you can ask your head of year or counselor to keep it confidential for now. If the bullying has been physical, you also need to make sure that your parent's know and that they are seeing to it that it is being stopped. Hugs and more hugs and hang in there.

in reply to Slice

Thanks

in reply to Slice

I just don’t know what to do

Slice profile image
Slice in reply to

About the bullying, or the bowel problems? My thought is that one of the things that may be causing you so much stress and anxiety, is dealing with the bullying. Of course, you haven't given much detail on that in regards to how severe it is. Is it stuff like name calling and the like, or has anyone done anything physical or threatened to do something physical? You don't need to go into big details but just an idea of how serious it is. So far as the bowel issues, do you have that one really close friend? I think that once you get one of your peers that knows and is supportive, it will lower the stress factor a lot. Another thing that may help is to be sure that you KNOW, UNDERSTAND and BELIEVE, that NONE of this is your fault. So far as telling this friend, I think I know what you're thinking. What if it doesn't work? Here's what I say to that. What if it does? Like I said before, it's true that they might not have the reaction you're hoping for, but if they are as good a friend as your gut tells you, go for it. It may take a little bit of "hand holding" from your mom, or another adult, but if you need it to get past this, then why not? I remember a time when I was 10 - 15 years older than you are now, that I had to go into a meeting with my boss about a bad choice I had made at work, and I, at the time needed my mom to go with me. 15 is still young and it's still at a time where you want so badly to fit in and be just a regular part of the crowd (not stand out). Who knows, you might actually be pleasantly surprised at a very positive response from your friend, and that's a real possibility. Let's say that something had happened to you years ago that caused you to need to have part or all of one of your legs amputated. At this point, you've gotten really good with a prosthetic. Would you be embarrassed to let anyone know about your prosthetic? It's possible, but likely not. Whether it be a missing limb or a problem with your bowels, it is still a physical/medical problem. Does your mom (mum) know that you have been posting here, and has she read any of it?

in reply to Slice

No she doesn’t know about any of this she know that I struggle with it and things like this but she dosent know I am posting or what I am posting

Slice profile image
Slice in reply to

Hey Sunshine! How are you doing? Have you been able to give some more thought to talking you your best friend (no pressure)? I can't tell you how many stories I've read from kids who are scared crazy to have others find out about their bedwetting. Yes, there are some situations where things don't go the way they would have liked, but there are others where, with or without the help of an adult (one case being that the mother of one of the friends was a doctor) that every thing turned out fine, or even better than hoped. Sometimes finding out that there was another person there who was also a bedwetter. I just saw something on YouTube where a girl who has/had scoliosis, found that being open about it (yes, much easier than incontinence), letting her brace be seen, and educating others to what the brace was for, really made a difference. There's a similarity between this story and yours. While yours does deal with something that can be much more embarrassing, the underlying fears are the same. The fear of being different. The fear of not being accepted. The fear from others because they don't understand what it's all about. They're also afraid of being ridiculed for being involved with someone else who is "different". Just one thing to remember: We are ALL different! Even identical twins are different in one or more ways.

Regardless of what happens, or what you decide to do, remember that you are an AWESOME young woman!!!!! If you have been diagnosed with anxiety, I know where you're coming from as I deal with it as well. It DOES affect your ability to be confident in what you are doing, especially when you know, or feel that there may come a negative outcome. I want you to look up something on the internet for yourself. It's a song from an older Broadway show called "Carousel". Look up the song, "You'll Never Walk Alone". I'm sure you'll find it on YouTube, or just do a search for the lyrics. What ever it is that you need to do, you CAN do it!!!!!

in reply to Slice

Thank you for your help

Slice profile image
Slice in reply to

Hey Charlotte! How are things going with you? Any improvement on the bowel issues? It's been some time so I don't remember if I've said this already, but perhaps you could do a little detective work for yourself. Remember that it normally takes 6 - 8 hours for food to get from mouth to exiting the colon. But start tracking your food intake, more of what you eat than how much. See if you can find any patterns to your food intake and bowel "performance". See if you can identify which foods are making it harder, or which foods are making it easier to move your bowels. Remember to keep your fluid intake high, especially water.

in reply to Slice

The bowel movements were going well and then the stress of exams hit am my health has taken a back seat - both physically and mentally (I know it is not good). I feel back at square one

Slice profile image
Slice in reply to

Oh Charlotte. Your health is important, if you are not in a good place health wise, you can't expect to do your best with exams. I know you're very stressed and busy but, I want you to see if you can figure out what is different now during exams as opposed to a short time earlier when things were going better. Is it anything with diet or fluid intake? If so, please try to make a compromise between the two and keep your bowels from getting as bad as they were. Know that I'm thinking about you and I wish you the best. Try to hang in there and do the best you can. Also, remember that you ARE awesome!!!!!!!!

Slice profile image
Slice in reply to

Charlotte, I figure your exams should be over by now. How about an update on how things are going? Have things started getting better with exams over? Have you read the previous post, or done anything about it?

in reply to Slice

My exams are still on - I have had a bowel movement today but I hadn’t really previously

Slice profile image
Slice in reply to

How long are you going now between bowel movements? Hang in there with exams and stay strong. If you have worked at this stuff all term, then you shouldn't have a problem with the tests. If you haven't been working on the material, you're not going to get very far cramming for the tests. Either you know it, or you don't. Studying for the exams should really only be about jogging your memory on what you already know. Lots of luck to you! :-)

in reply to Slice

It is about 3-4 days

Nicky555 profile image
Nicky555

Hi have you tried ringing the Eros helpline. They can point you in the right direction. My young person did disimpaction but was then followed by months of suppositories and movicol with a very slow reduction. This means his bowel has been able to heal and go back to normal size and regain sensation so he know feels when he needs to go. I think the Eric helpline could really help.

in reply to Nicky555

I have phoned eric but I feel like I don’t gain anything and I get so stressed and anxious

JJMUMOF4 profile image
JJMUMOF4

Heya,

I am not sure how much help I can be but my son was constipated with overflow soiling (where he had no control/sensation of it). He had an ultrasound and it showed that not only was his bowel distended (swollen) but so was his bladder. Now this was a surprise to me as he had no issues with his bladder but I was told that in severe cases of constipation it can affect the bladder too and cause loss of bladder control. I am not sure if that is what is causing your problems but you really could do with some support from family or friends.

Disimpaction I found a bit scary as they seem to be huge volumes of stool softener to give to a young person and I really had to force myself to keep going for the full 7 days, I was also advised to give my son a gentle laxative at the same time and after my son had completed the seven days he is still on a maintenance dose months later to give everything chance to recover.

Having support will really help you as I had to be really firm with pushing for help with doctors and things like having something in place at school so that you are ok to come out of class to get sorted out if and when you need to, and to get some support. No one should have to go through this alone. You only have to be brave for about 30 seconds, long enough to tell someone 😊.

The ERICS website I found really useful with the disimpaction information and things. If you havnt had a look yet I would.

I work in a school and honestly it may feel like you are alone but this is so much more common than you think.

Please try and speak to somebody that you trust like a family member or trusted adult. It really will help.

I hope you get the help you need.

in reply to JJMUMOF4

Thank you I just find it all really hard and I have been living with the secret for years and I don’t know if I can let that secret out yet

Slice profile image
Slice

Hello again sunshine! I know your exams are over now. LOL How are you doing with the constipation? I think if you look around at a few other forums on constipation, that this is not at all an uncommon problem in kids and adults. I hope that you have been able to improve the situation for you and I do think about you from time to time wondering how things are going. Something else that I have probably suggested before, but I'll bring it up again. Consider letting one or more of your close friends in on what's going on and let them help support you. Yes, there may be some that will not do well, but I'm willing to bet that some of those friends that you have will totally surprise you and will appreciate your trusting them and being able to help. Yes, it's scary, but knowing that you're not dealing with this alone (amongst your peers) will make a huge difference. Good luck! :-)

in reply to Slice

Hiya - sorry I have only just seen this - things are not much better actually maybe worse. My mock exams were over all long time ago now but the stress is getting to me as I only have 16 weeks to my real exams. It is taking a toll on my mental and physical health - I am normally bubbly and the one out of my friends that is always laughing however this has not be the case recently. I am rarely making a bowel movement and not unrinating as much now either. I just feel as if I am losing control of my body. How are you getting on??

Thank you - I will try this. I hope it works

Slice profile image
Slice

Hey Charlotte, there's something else that I'm thinking about. Next time you see the doctor, see what they think about the use of the Peristeen pump. I little bit of exploring and the down side to it is that supposedly it runs about $3,000/year 2,280 pounds, or 2640 Euro. In essence it's an enema. It is however, much easier. Do a google search for peristeen pump (Coloplast). If you look on youtube there is an animated video on it. Are your parents aware that your not peeing as much? Constipation can cause urinary retention. If you are having any lower abdominal pain, especially in the area of the bladder, I want you to have your mom or dad get you to your doctor or to A&E asap. Make sure that you are doing a lot to keep yourself well hydrated. Less peeing could also suggest that you are dehydrated. If your urine is darker than normal, that's a good sign that you may be. Just remember that you are an awesome and smart young woman. Hang in there! Hugs, hugs. and more hugs.

in reply to Slice

Thanks - such a rubbish situation

Slice profile image
Slice

What's that supposed to mean?

in reply to Slice

I mean it is not a situation that I want

Slice profile image
Slice

You mean having the constipation? I can certainly understand that, but it's no different than someone else who gets in some sort of accident and ends up paralyzed. They don't want that either, but they just have to learn to deal with it and move on with life. I know it's not fun, but it sounds to me like you need some help from other people. I know that you said that you were too afraid to say something, but I really think that if you share it with one or more really good friends, number 1 you won't feel so alone about this. Number 2, once the "secret" is out, it will alleviate a tremendous amount of stress. One of the things about friendships is being able to have "secrets" that you can share and problems that you can help each other with. Don't look at this as a "dirty" or "naughty" issue, it is a medical problem. If they are serious about the friendship, they will be honored that you trusted them by confiding in them. I know things can be tough with the NHS there in the UK, but perhaps you could talk to the school nurse who might be able to help you deal with this. Also, is there someone there such as a teacher or counselor that you can get help with your concerns about the GCSE's? From what I've heard so far, I really think that you need to get this secret "out of the closet". Part of what is stressing you is being so worried about others finding out about it. Again, it is a medical problem and nothing to be ashamed of or embarrassed about. You need to get a grip, and start finding out what you can do to resolve this. I'm guessing that your likely not eating to well either. Poor nutrition, or lack of nutrition is getting you in a worse place physically and emotionally. You need to reach out to others so that you can get some emotional support. Remember how are you going to know how your friend is going to act unless you confide in them? I'd be willing to bet that they will really surprise you. Or think about it this way. Put the shoe on the other foot. If you didn't have this problem, but had a really good/close friend that did, wouldn't you be understanding, and want to help them? Well, I think I've given you more than enough to think about here. You don't need to tell your parents about what's going on here if you don't want to, but why don't you talk to them and see what their thoughts on whether you should tell friends that are close to you. If they are, your parent probably will have a good sense on how they'll react.

Slice profile image
Slice

Charlotte, here's another thought for you. And I'm not saying that you are a part of it as I have no idea. There's an epidemic of what's called "screen addiction". It's happening in the UK, Australia, the US, and many other places. It's an addiction to texting, video games, and the like that has kids staying up until the wee hours of the morning (sometimes until as early as 3:00 in the morning). When their parents try to restrict the usage, they get reactions that are classic of drug and alcohol addictions. What is also alarming is that more and more kids are badly sleep deprived. Imagine trying to function on only 2 - 3 maybe 4 hours a night, day after day. Like I said, I'm not suggesting that screen addiction is an issue for you, but what is important is to make sure that you are getting enough sleep. The national sleep foundation is recommending 8-10, or even 11 hours per night. Not getting this can definitely affect the ability to learn. The less the sleep the more serious the problem gets. One of the problems is that often times teens think they are invincible and that they can tough it out. I have probably said more than I should have already about telling a friend, so I won't say anything more about that other than I hope you can find it in you to talk to your friend(s) about this as it will drop the stress level dramatically. Remember that this is nothing to be ashamed of. You keep plugging along and hang in there, and remember that you ARE AWESOME!!!!!!!!

OlivesYou profile image
OlivesYou

Hi I hope you are doing okay now. I came across this and really interested in how you are getting on these days? My son is 16 and still suffering with this constant constipation and I have been dosing every day to stay on top of it.

I manage every aspect for him. He has autism and is not able to manage himself.

It’s very stressful and I don’t tell

Anyone about it except for the doctors and teachers at school.

Then again I don’t feel like his peers or friends need to know too much. (Parents yes)What can they really do to help ? No sense putting it out there for judgments. I already get enough judgements without adding.

I hope you are doing well. Your story is hitting my heart today and I wish you the very best in your journey. ❤️

OlivesYou profile image
OlivesYou

Hi there 💕 how are you doing? Have you been able to gain more control over your body?I feel for you. My son is 16 now and he is being managed with senna and movicol

Everyday. He is 70+ days clean and in the toilet. (It’s taken 16 years to get to this point!)

Please let us know how you are progressing.

♥️Hugs and love

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