Losing hope with IBS please help me!!

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Someone please help me I'm losing hope with my IBS getting any better. I've made a post before saying IBS is ruining my life and it's only getting worse and I'm only 15.

I've mentioned a ton of stuff about my ibs before in previous posts so I will just ask about the current worse part that if this was solved I might see hope of living with the awful syndrome. Since November 2015 every single time I have a bowel movement I have not completed all at once. I haven't had a single solid stool since November. Every time it is broken up and parts get stuck inside my rectum. For some people they can handle this, I can't because of my OCD and GAD so I have become addicted to cleaning inside my rectum to make sure it's clean and nothing is stuck. Please don't judge me. To make matters worse there is a lot of mucus that is only getting worse.

I could potentially stop cleaning inside my rectum however until the whole thing where stools are getting stuck and I'm not fully completing bowel movements gets better in unsure as to whether I can bring myself to stop. Again please don't judge me I know I'm really messed up.

Recently about a week ago my doctor gave me a laxative called macilax as a last resort as I've tried everything else. I took the first dose on Friday and the second two on Saturday. Saturday night I had diarrhoea so it was working. I still wasn't going all at once however. Sunday was the last day I took the laxative. I missed school on Monday as I still had diarrhoea and also had the flu. It got that bad that Monday night I spent 5 hours on the toilet going a bit every 20 mins and the final time I went it felt like my intestines were falling out, I was almost crying in pain. I couldn't just get up either so I wasn't there for 5 hours because of the whole wiping situation.

I took an Imodium after that in the hopes of being ok for school the next day. I wasn't. I had another day off school and it kept feeling like I needed toilet however every time I went it was just bloody mucus. And passing this mucus hurt.

Wednesday morning my stomach had this weird pain which once again made me miss school. It's really bad for me missing school as my GCSEs are in a few months and I have a lot of stressful work to do. This pain was around the belly button area and happened every few seconds. It isn't agonising it's sort of slightly sharp at first, then really dull, then it goes, then repeats. I went back to sleep, got up a few hours later and the pain stopped after I had a bowel movement. However I was yet again there 5 hours and it wouldn't clean because I hadn't completed it and when I finally did complete it once again my intestines felt like they where falling out.

Tonight this other weird thing that happens every so often happened, normally before I need a bowel movement. It's where I feel a lot of gas moving from far inside my bowels sort of into my anal canal and the only thing holding the gas is my clenched anus hole. It's like holding in a fart however if I was to fart lots of mucus comes out. Sorry to be so graphic but there is no other way I can describe it and it's quite a massive problem. So tonight that happened then when I attempted a bowel movement all that came out was bloody mucus.

I think I couldn't have a bowel movement was because I haven't eaten much the past few days because of the flu. I can't go to the doctors atm because my gp is on holiday until next week. Last time my gp refered me to the paediatrician it didn't really help. The paediatrician dismissed everything I said, didn't give me proper chance to explain and his advice was to just get up after going once. Which doesn't help me what so ever. So when I attempt to see my gp next week I'm going to request to see someone else privately so that I might be able to get somewhere.

Until then please can anyone give me some advice on how to cope and what to do because I'm slowly losing all hope of ever being ok. Currently in trying the low FODMAP diet and I've tried a lot of different tablets and probiotics all of which have either done nothing or made it worse. Sorry for this being so long but I'm desperate for help and please don't judge me.

Thanks for reading.

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14 Replies

  • Posted

    Dear Tommy Teen 

    I so much wish I could give you an answer but I can't 

    The only person who0 can help you is the dr. 

    So please go to a dr and explain where you all going true 

    If you don't get a proper answer say so because as a patient you got rights 

    All the best and speak up 

    Hope you get better soon

    Regards 

    Pedro

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    • Posted

      Thanks for the reply Pedro.

      Unfortunately my GP is away until Tuesday but I'm supposed to be able to speak to him them. I'm going to ask him to refer me to somewhere but until then I can't do much.

      My GP has always been the most helpful doctor who has tried a lot of different things it was definitely more the paediatrician I saw at the hospital that didn't give me a proper answer.

      Thanks for the reply I will stay updated on this post about what's happening.

      Tommy

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  • Posted

    It sounds like you have a number of problems that is making your ibs worse. 1St you really need to get back to your drs.

    Stress makes Ibs worse. You need to eat more basic fibre. Complex fibres will make it worse. You need fibre that will make your motions harder. If they are too soft then it will leave bits behind. There will be some poo left behind lining your insides. This is normal. You need to find a way to stop cleaning your insides.

    Are you taking buscopan regularly.

    There is something that you can buy that is full of good bacteria. One of the big online retailers sell it. It is wheat based rather than dairy. It really does work.

    See if your mum and dad will buy you a central frugal juicer. It takes out all the complex fibres and leaves the easy to digest fibres. There are loads of juice recipes online. Make sure you add veg as well as fruit.

    Don't eat too healthy a diet. The more complex fibre the harder it is to digest. Try cutting out a different veg or fruit you eat a week and see if there is a difference.

    Re the stress you need to find something to take your mind off it. I crochet and this really helps. It means your brain is focused on something else. Any craft can make a difference

    I learnt to Crochet off YouTube. You can buy a set of hooks online for a £1 and a ball of yarn from quite a lot of pound shops. In no time you can make it into a hat.

    Please go back to the drs and explain what is happening and ask for help.

    If you are in that much pain again go to a&e. Tell them the spasms won't stop and you are in agony. They can give you buscopan and paracetamol intravenously and it will relax within 30 mins. If you don’t feel you can get there by car call an ambulance. you shouldn't suffer in pain for that long.

    Please seek drs help. Sue

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    • Posted

      Hi sue thanks for the reply!

      Unfortunately I can't see my GP until Tuesday as he is on holiday but I have a phone appointment with him and that could maybe turn into an actual appointment.

      I know that stress makes ibs worse but my GCSEs are important yet stressful not just for me but for everyone but I need to find someway of reducing the stress. I know that my stress levels will probably drop when they are over in June.

      I will look into basic fibres and try to include them more in my diet. I know that there will always be some poo lining the inside which eventually I might be ok with but atm it is like a lot gets stuck and I'm not completing bowel movements. I am reviving cognative behavioural therapy to try and help with the cleaning inside but until my bowel movements are not getting stuck and I can complete bowel movements somewhat normally I'm unsure as to whether I can improve. If I got to a point where is was just pop lining the inside I think that with the therapy I might be able to stop.

      Buscopan was one of the medicines the doctor gave me first. I've tried it on three separate occasions and each time it's made me worse. I've also tried mebeverine and sena tablets.

      I have tried 2 types of probiotics before which was full of good bacteria which worked at first but then slowly made my symptoms worse. There was 1 other probiotics that I found but I never got round to trying it.

      I will look into the central frugal juicer as that definitely looks like a good idea and I'm going to try and find different juice recipes.

      Currently I've cut out all high FODMAP fruit and veg but I haven't been eating that well the past week because of the flu so I haven't been able to see much of an effect.

      Crochet doesn't look like the kind of thing I would normally do but I'm definitely willing to give it a try. I play a lot of video games to take my mind off things and I used to play the drums however I quit lessons in December to focus on my GCSEs but I'm planning on starting again in September when I start sixth form.

      Thanks so much for the reply every bit of advice you've said really helps!

      Tommy

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  • Posted

    Have you been referred to a gastroenterologist or IBS specialist? If not you need to insist that you are via your GP - don't take no for an answer- take a parent with you for support.

    I've found taking peppermint oil capsules every morning with lots of water really helps and lots of experts are saying that these are more effective than buscopan in helping a healthy bowel. Boots sell them 3 for 2 offer - it's worth a try and certainly won't do you any harm.

    Stress does make things worse - see if your GP can also refer you for CBT or counselling for your ocd - again you shouldn't have to struggle with this on your own.

    I hope things start improving for you unfortunately these days you have to insist to be referred for anything at the doctors BUT it's your right so DO IT!

    I wish you all the best J x

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    • Posted

      I haven't been referred to a gastroenterologist or ibs specialist, last time I saw my doctor I asked to be referred to see someone but instead I was told to try a new laxative first and if that didn't work then to go back. Well that laxative made me worse and I'm supposed to speak to him on Tuesday and I'm going to ask to be referred somewhere.

      I did try peppermint capsules a few months ago and they did make my stools more solid but that was before they where breaking up getting sick and being incomplete and taking the peppermint was actually one of the first times it actually did break up. It also made my poop slightly green. I don't know if it was capsules I took however it was more a solid tablet than a capsule so I could maybe try a capsule.

      I am receiving CBT for the OCD but I don't think I can stop cleaning inside until the bowel movements stop getting stuck.

      When I speak to my gp I am going to insist on being referred because if I don't get referred I will be stuck and won't know what to do.

      Thanks for the reply J.

      -Tommy

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  • Posted

    Hi Tommy

    It is a case, as others have mentioned, of getting into the doctors and getting them to refer you for all the tests needed to reveal the causes of your problems. You have rights, and if you are not happy with the care you have been getting, make a formal complaint, but also get a second opinion. The fact there is blood present is a red flag symptom, and should be investigated further without delay, use this fact when you go to the doctors, and if they don't follow this up, they are incompitent and you need to see different doctor.

    Please don't put yourself down, you're not messed up, you have some problems going on and you are dealing with it in your own way. I have an OCD, mine relates to water taps and electrical appliance plugs. I can spend half an hour or so before bed, checking that taps are off and not dripping, and I have to physically put my hand under the tap to make sure there is no water dripping out numerous times, even though I can see no water is coming out. I also spend time before bed making sure all plug sockets are off, but I have to physically push the switch to the off position, even though I can see it is in the off position. This has had an effect on my bowel movements, like you I worry when I feel like I've had an incomplete bowel movement, and I can sit on the loo for ages waiting for the rest to come out, but it never does. I don't go as far as cleaning myself out, but I do get obsessed with not having a complete bowel movement. What I do is replicate what some animals will do, the mother will lick their youngs bottom hole to promote them to have a BM. I obviously don't lick my anus, or get my partner to do it, thats just gross, but I will get a toilet wipe (not paper as this will wear the skin around your anus) and I rub / massage my opening very gently with my fingers using the wipe. I do this for no longer than 5 minutes and it helps me to totally evacuate my bowels. Very odd I know, but it works for me.

    Don't hold wind / gas in, you will find bloating caused by the gases will cause pain, discomfort and nausea. If you are worried about any follow through whilst passing wind, wear sanitary towels, tena pads or something like that, so if something does come out when you pass wind all you have to do is change it. Again, not ideal, but might make things a bit easier for you.

    Some people swear by probiotics and peppermint tea / oil to help their symptoms, I've tried these and found they had a worse effect on me. You have to think back to basics, water to drink, fresh fruit and vegetables (although some people, myself included, find a lot of fruits and veggies hard to stomach), white fish, lean meat (white meat preferrable, I can't eat pork due to the fattiness of it, but bacon with rind and fat cut off is fine). It is more trial and error as far as food is concerned, what is good for you, might not be for another IBS sufferer. When I'm at my worst, I go back to a rice diet, which involves eating a lot of plain white boiled rice (I add a rasher or two of sliced, smoked back bacon to give it some taste). I have porridge for breakfast, as eating rice for breakfast doesn't seem right. If I do this for a couple of days I find my symptoms get a lot better. Steer clear of fatty, spicy, sugary, processed foods and only drink water.

    Try to find something to focus your attention on. I play darts, not only does it get me up and about, which can help some of the symptoms, but stops me focussing on the pains I get. I've devised a number of little dart games I play myself, which makes it more enjoyable, and means I have to focus more. I've also started to learn to play guitar, which I absolutely love, and keeps me occupied for ages. Sometimes, I can come away from these activities feeling much, much better than I did, and they always make my symptoms a lot easier to deal with. Never totally gets rid of them, but as for most IBS sufferers, it is more about managing pain as best as you can. Some people can get rid of IBS, but most don't, so finding whats best for you to manage your symptoms is very important.

    Sorry I can't give you any straight answers, but I do hope some of my info helps. And don't forget, you are not alone. My IBS has turned my life upside down, and even now with my symptoms more in control than they were, I still get very distraught and fed up with it all, and wish for the life I had back before all this started.

    I do hope you manage to get through your GCSEs, all the best for the future, and stay strong!

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    • Posted

      Thanks so much for the reply Paul.

      There has been bleeding before but that was from piles and anal fissures which the doctor knew about and treated with cream. I know that that is not the case now. When I saw my GP last week that wasn't bloody mucus that has only started this week so my doctor hasn't known about it.

      Sorry that you have OCD I know how bad/annoying it is and hope that one day you can help get better with it. I am receiving cognitive behavioural therapy to help with my OCD but it is a slow process.

      Thanks for understanding my problems it's really kind and I really appreciate it.

      I know that currently if I pass wind then mucus will come out. Normally when I would go toilet whether to have a bowel movement or not I would pass gas then and no mucus would come out however this past week that hasn't been the case and I really hate the idea of having to wear something.

      I am trying my best with the ibs diet. I have actually been eating a lot of rice lately. I can't drink just water I can't stand how plain it is. I drink sugar free flavoured water. The sweetener in it is IBS friendly apparently.

      I used to play the drums but I stopped to focus on GCSEs but I'm starting again in September. I play a lot of video games to distract myself as well. I have a swim spa in my garden (a glorified bathtub where you swim against high powered jets) which used to help but atm it's broken and I've been to sick recently to actually use it. I've never actually been a really sporty person but I could look into trying something.

      Thanks for the best wishes and for the reply, I'm trying my hardest and it's not easy. Good luck with your ibs as well I hope all the best for you.

      Tommy

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  • Posted

    Hi

    I sent you a reference to a children's hospital but the post has been blocked by the moderator.   I'm not sure why.   I emailed the London Bridge Hospital which is a centre for the FODMAP diet and who obviously know lots about IBS.   Unfortunately they can't treat anyone under the age of 16.   They recomended a children's hospital Evelina Hospital for Children

    I dont think I can put phone numbers here so look up the evelina hospital's number and call them.   I dont know what help they can give over the phone but ask them where you should go for help.   I dont have a name there.

    If they are useless then call back the London Bridge Hospital and ask for Nicole Merrall.   Explian to her that Graham from Australia emailed the hospital asking for help and she was kind enough to reply but Evalina didn't help so can she tell you of another IBS clinic that can take children.

    I am amazed at UK doctors.   The number of people on this forum who seem to be getting hopeless treatment by their doc is awful.

    I am worried that your problem might be something other than IBS and its diagnosis has been poor.    Can you start all over with a new doctor or is that too expensive.    

    Anyway give Evalina a chance to prove they are a wonderful, competant and caring organisation.

    While waiting stick to the FODMAP diet and dont try anything that does not conform to the diet.   Lactose in dairy products and wheat products are possibly the cause of your problem so give FODMAP a real try for 12 weeks.   Lots of straight water, some rice and FODMAP friendly veges.   Potatoes, carrots etc as in "the List"

    Let us know how its going.

    Cheers

    Graham

     

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    • Posted

      Hi graham thanks for the reply.

      I did reply to your other post and thanks for all your help it's amazing.

      As I said in the other reply I will contact the children's hospital and ask for help and I will ring the London Bridge hospital if they are no help.

      You are right with what you are saying about UK doctors the majority of them are useless. My GP is actually good as he has been very helpful and has tried a lot he has been the most helpful doctor and I'm going to ask for him to refer me somewhere.

      I was worried about it being something more than ibs but the paediatrician at the hospital dismissed every time I tried to explain that and he kept saying it's just ibs and it's all in my head. His advice was to just just get up and go after going toilet which doesn't help what so ever.

      In the uk because of the nhs every time I see my GP and when I was referred to the paediatrician it was free. If I changed GP it would also be free. I might have to pay if I was to see a specialist I'm not sure though and I can ask my GP to refer me to a private consultant which in that case I would have to pay for however the price isn't a problem.

      I'm definitely going to give Evalina a chance!

      I'm also trying my best to strictly stick to the low FODMAP diet!

      Thanks for all your help graham.

      Tommy

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  • Posted

    Hi Tommy

    I think you have the personel messages turned off so I can't send you a personel message with details of the hospital and so forth.

    If you click on the box above the "star 3 at the top left hand of your message it should open your profile and there is a box to tick to allow private messages.  Then a grey envelope drawing will appear below the "Star3" inviting private messages.

    Cheers

    Graham

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    • Posted

      Hi I checked my profile setting and then box for private messages it ticked and I've checked and I can send them so I'm unsure why you can't send me them. If you can't you would always email me if you want.

      Thanks

      Tommy

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  • Posted

    If you are wiping yourself a lot, you may have cut inside your anus and this may account for the blood.  However, blood is a red flag symptom so you should change your doctor and insist on seeing a different specialist to have this investigated.  A colonoscopy may be suggested.
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    • Posted

      The blood isn't from a cut. I know this because I've had them before and it's not that kind of fresh blood the blood is more mixed with the mucus.

      Thanks anyway for the reply it's much appreciated.

      Tommy

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