Iin so much pain its unbelievable!my doctor diagnosed me with ibs about 2 years ago but my pain starts when I've been the toilet

Trigger me off!.my pain is strange thou as soon as I have been to the toilet in a morning to move my bowels that is when the pain starts it is an intense and extrenely painful pain which has me in tears most mornings then the pain continues not as strong as wen been the toilet but is horrible I am hating life at the moment with it if I eat really healthy I'm still in pain I mite aswell have had something that I have enjoyed I'm on alverdine tablets and peeppermint capsules and they don't seem be doin anything I am a single parent and have had that much time of work coz been in too much pain that stresses me as there is only me to bring the money in does anyone else suffer with anytjing like this?I have read ibs books and I just don't seem to fit in as goin tjhe loo helps people where as this is where my pain starts!someone help me please thanks andrea

37 Replies

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  • I think you need to go to doctors,that is not symptoms of ibs sounds more like colitis or crohns,

  • Thank you for answering I have been the docs and am under a specialist and they keep saying its ibs but I'm goin back next week as like I have said the tablets aint touching me and I am concerned but thank u for answering my question will keep u posted

  • My pain is similar to yours. It's AFTER a BM that it's worse. I also have Parkinson's but I saw a GI doctor who sent me to a special physical therapist. This really helped and I was a month without pain. But now it's back. The problem is this physical therapist is difficult to get to and I have to pay out of pocket. Insurance company still has not reimbursed me for sessions I had in November. So I'm broke and in pain.

    Hope you get help soon. Let us know.

  • Great the therapist was able to give relief, was it with medication. Puzzleled as to what GI doctor is. Surely you should be treated by NHS and not having to rely on private insurance. Perhaps the Parkinsons condition effects the bowels do you think. Bowel conditions are at times extra pain ful as Ive found out, its fantastic when at times the pain dissapears for a spell.

  • PD grabs any pain, regardless the cause, and makes it worse. So I have to medicate on time. I'm in the U.S. (New York City) so NHS can't help me. Wish we had it. The therapist helped with massage and exercise. But most massage. GI is Gastro-Intestinal. Too many specialists! :)

  • Not as yet diagnosed PD not always obvious when see dr for few mins but telling on me, not a pleasant condition along with IBS and coeliac. Hope all is going well for you Not come across enteric coated peppermint. Best wishes for xmas and New year.

  • I meant 'mostly massage'.

  • Its awful isn't it and totally affects ur life!thank u for replying to me I'm goin go back the docs this week and will let u no,what a shame for u too its terrible u having to pay out aswell please stay in touch now how u go on I'm glad that someone else has pain wen they been toilet too was rather worried thank u

  • Peppermint capsules gave me heartburn which I didnt have originally. Mebeverine medication didnt help so had some relief from a protem pump tablet...rabeprazole 20mg. Just remembered I had abdominal pains with brown bread in 70s when not ceoliac but it settled, have been having brown ceoliac bread since diagnosed, perhaps better stick to white bread now maybe have been triggering off iritation. Sorry about your pains hope you get sorted out soonish, not pleasant having unexplained pain.

  • Did you try enteric coated peppermint? They don't dissolve until they reach intestine.

  • I'm eating wheat n gluten free bread as find it helps me its just that no matter what I eat I still have pain how do people cope with pain?coz I'm really struggling to deal with it

  • Its so hard to nail anything down with IBS and get some relief. Some foods that sometimes go down ok, at times react and trigger off bad symptoms. Sometimes meds work, sometimes they dont. Its just the sheer unpredictability of IBS. Pain kills me too. Keep perservering Andrea, relaxation techniques, hot baths, long soaks, some people try to run, exercise, anything to take mind off pain for a while. There is no tried and tested formula for me. But keep fighting, experimenting and trying different things. Something you come across may aleviate or settle the pain.

    In the meantime keep bugging your doc. Maybe recommend him/her to refer you to other practitioners. Maybe look it up yourself, hypnotherapists, acupuncture, kinesiologists, homeopathy. I know ive tried it all.

    Keep going. We re all here for you

    Stay strong

    Suli

  • Thank you yes it is very hard when u r in so much pain to keep focused and try and relax but I will take what u say on board and see how it goes!I'm just getting really stuck on what foods to eat at the moment as nothing seems to be helping me has anyone got any meal ideas for me to try out for ideas as I'm getting bit sick of chicken n rice!thank you so much for your help and I hope u get ur pain sorted too and let me no how u get on too!! Thank u so much for ur help

  • Hi Andrea. I really sorry you are in so much pain and have tried so much. The medications that I have tried don't seem to work very well, Windeze does help a bit when I experience the pain but not many places seem to sell it. Buscupan isn't very good at all.

    I got so fed up after years of IBS that I went back to the doctor a couple of months ago (after speaking to a friend that had just taken a Dietectic Degree) and said I wanted to see a Dietician. He went through the list of IBS medications and said have you tried this? .........etc, I said I had tried everything he mentioned but nothing had worked. He relented and booked me an appointment with a Dietician. I went to see her last Monday, 10 December 2012, and she is referring me to another person at my local hospital who is about to embark on some training for the Fodmap Diet - I have heard about this on the internet.

    The Dietician has said it will now take about 6 months and I'm willing to wait as I'm not as bad as I was at present - I have cut out Broccoli, Cauliflower and Grapes from my diet and I seem to be a little better - I'm now taking anything else out of the diet just in case I lose out on nutrients.

    Best of luck

  • Be strong and ask for some proper pain relief. I was fobbed off for 4 years by my GP-in the end my husband would take me to A&E in desperation when I kept losing consciousness from the pain. I was prescribed 20mg morphine every four hours and that takes the edge off but still isn't great. I finally am under the care of a Pain Managment consultant who seems to want to help. It's not always food related-please don't become paranoid about triggers because everyone is different. Keep on at doctors until you get some answers. Good luck!!

  • Thank you so much for your reply,blimey u sound like u got it really bad too,let me no please how u go with the pain management that sounds really good yes I agree I'm finding no matter what I eat the pain is exactly the same and I must admit I have always been abit parnoid about eating especailly if got something planned the following day and that isn't good and I'm finding its starting to take over my life I am a bit of a worrier as I'm a single mum and have go to work to obviously pay the bills but I've had so much time off before too long I will end up being finished,my parents have suggested I move back home and rent out my little house and to quit work for a year to try and take pressure of me I'm just a bit stuck as what to do at moment and am going back docs this week so will keep u posted!best of luck to u too I am so pleased I have found this website and everyone has there own battle and it aint much fun but as u say keep strong n try n get answers thank u

  • Hi whiteladder/ I was interested in just how a pain consultant could help. to me its really a solution or cause one is looking for as I see it, not meds to keep tolerating the pain. Surely the gp could give suitable pain meds so am unable to work out reason for a pain consultant. Also would love to hear your progress. I improved going lactose free.

  • Thank u so much to everyone who has answered my question everyone is so different and hope that we all stay in touch n let us all no how we go on the one thing I've learned is this is the best thing I've done and instead of sitting worrying bowt it alone there is always someone who is in pain but is willing to help in some way and I'd like to thank everyone as its given me hope and is givin me support so thank u

  • Thank u so much to everyone who has answered my question everyone is so different and hope that we all stay in touch n let us all no how we go on the one thing I've learned is this is the best thing I've done and instead of sitting worrying bowt it alone there is always someone who is in pain but is willing to help in some way and I'd like to thank everyone as its given me hope and is givin me support so thank u

  • Thank u so much to everyone who has answered my question everyone is so different and hope that we all stay in touch n let us all no how we go on the one thing I've learned is this is the best thing I've done and instead of sitting worrying bowt it alone there is always someone who is in pain but is willing to help in some way and I'd like to thank everyone as its given me hope and is givin me support so thank u

  • No worries Andrea, we are all in the same boat and all here to help each other. Keep fighting. Dont give in.

    Let us know how you re getting on.

    Stay in touch

  • Yes I hope we all stay in touch and thank u for your support

  • Hi! Have just read your post. I've had IBS c for over ten years. It's been especially bad for the past two years and I also get pain after going to the toilet.

    In the last two months I have tried two things which have really helped with the pain and reduced it quite a lot. I've been following the Fodmaps diet after being referred to an NHS dietician by my GP. Also I have been using the probiotic drink Symprove for eight weeks and it's also really helped. I am now having days with no pain at all or very reduced pain.

    Wishing you a pain free Christmas!

  • Hi Andrea,

    I am in a similar situation to you. I'm wondering if it is IBS that you have. Have you been seen by a gynea consultant? Are your IBS symptoms worse around your period? I only ask because IBS is often miss diagnosed when really it's a gynea issue. I (according to the drs) have IBS, endometriosis (the cells that create your period blood are found outside the womb in the body cavity) and adenomyosis (endometriosis found inside the muscular wall of the womb). It might be worth keeping a pain and bowel movement diary along with a menstrual diary to see if there's any correlation between the two.

    Hope you've had a pain free Christmas xx

  • That is not ibs...ibs causes pain then eases after going to toilet,you need to push because a lot of drs don't care about ibs as they don't think it matters as an illness....peppermint capsules can also be bad as the more you take sometimes you can pass pure peppermint which can sting

  • I don't think its ibs either I had the camera about a year ago and they said it just ibs since then I have got worse,I haven't been work for 7 weeks coz the pain that bad after been toilet,doctor has given me peppermint oil and alberine tablets and an anti depressant which is meant to block pain and still no better I go back doctors on tuesday I go see a specialist again on the 6th feb so will keep u posted no matter what I eat I still have pain and stomach ache that lasts all day!!I'm even consideringh givin up work as I'm in pain and constantly on toilet whilst I'm there so hopefully get another note!!its makin me so sad thou as I'm worried everytime I go out and can't enjoy myself as always got stomach pain or ache!all the books etc I read on ibs there's nothing about pain after goin toilet like u say it should relieve it!! Thank u andrea

  • Same I also suffer even more pain when ive gone to the loo..it drags on and on..im a single mum too and its a terrible struggle.

    Im giving the low fodmap diet a go at the mo, wk2 so no definite improvement as yet but im stickin with it as desperate now to find some relief.

    Also I take buscopan for the cramps, I wont go near anti depressants as they can cause constipation and i swing from constipation and diaohrea on a daily basis..not sure which is worse as both hurt like hell, some days i feel like my stomach is being ripped apart its a frightening pain :(

  • Its so awful I feel like I can't do anything anymore and its hard when u on ur own with a child isn't it?I've been of wqrk for 3mths and even thinkin bowt givin up work as hav had so much time off with the pain!do u work? I'm goin for the camera nxt week then an mri scan in feb dreading both no tablets seem to work for me I'm tryin £mebeverine at the month!!let me no how the fodmap diet goes heard people say about it!!hope u find relief from this awful pain n thanx for answering love andrea x

  • Andrea, that sounds totally horrendous, especially trying to deal with bringing a child up too. My daughter has just been diagnosed as severe ibs-c and she too like you says its worse after the toilet. She also has alot of bladder related issues too ( cystitis, thrush) IBS is horrible, I dont think the doctors really understand how much it hurts. My daughter has had constant pain for 14 weeks - been in hospital 6 times where I have been told it must be in her head or perhaps shes stressed. You just have to keep fighting until they help you. Hopefully the camera might shed more light for you.

    Never feel alone though - there's so many lovely supportive people here

    Jo xx

  • Oh my goodness that sounds terrible for your daughter!it really is a horrible thibg to have and deal with!and I hate it when they say its in your heah and stress we all have stress in our lives but coping with pain and illness is a stress in itself!yes I hope the camerea brings some light to this its awful!and got an mri scan in feb too!!I've had my pains bad for 12weeks now slightly dying off after being given pain blocking tablets ny the doc but Its only eased it slightly I can't believe though how it just affects your whole life and thank you for replying n I wish ur daughter well and will let everyone no how camerea goes not lookin forward too it though!and this website has given me so much help its fantastic take care andrea xx

  • Dont worry about the camera andrea its really not that bad, i had a colonoscopy a couple of months ago, the prep was worse than the procedure, as had to spend the day in the loo (not that unusual!) i had a sedative that took the edge off and didnt feel much at all to be honest. i hope it all goes well for you. x

  • Aww thanks I'm sure I be ok and will definately have to have some sort of sedation I think!will let u no how it all goes!!and hope the fodmap diet goes well for you and gives u some kind of relief!! Its stressful though I find I can't remember what it feels like to not have pain everyday!!I'm thinking of giving up work for a while to try and de stress myself as I'm finding being in pain so tiring and like u being a single mum just day to day things are bad enough!!hope all ok for you and stay in touch and let me no how the diet goes xx

  • That may not be a bad idea, try and have a break from it all if you can. I do voluntary work at the mo which fits better with my children, i have a 10 yr old with severe asd, and just had my younger daughter diagnosed with dyslexia and dyspraxia..also a 3 yr old son who is very boistrous!! i dont have family around who can step in and help as live too far away, at times like this i wish they were a lot nearer, its really hard..

    Diet not going too well as been the worst weekend ive had in ages, lots of pain and living on the loo :(( will persevere though..

  • Oh my goodness you definately have your hands full with 3 children and with them havin medical conditions need more of your care and attention which is hard when u in pain and sat on the loo a lot!shame u don't have family close by to help u isn't it!I'm lucky as my parents are right near to me or don't no how I'd cope!I have a little girl of 4 and its hard to tell a 4 year old u can't go somewhere cos I'm in agony or scared of going out incase got run the loo :-( yes I been of work for nearly 3 months and I'm seriously thinking of just givin up work for a while to get myself sorted I just feel like I need a total break even for 6 mths or so!as people in work don't get how I'm in pain all the time and my jhob is stressful and to be honest I'm on loo a lot and its embarrassing when my manager is asking me where I am all time!!my job is part time but its an early half 7 start which ismt good with a 4 year old rushing round and I'm at pain the most in a morning after toilet then it just continues all day and its so tiring sometimes wen I was in work I'd go bed at half 7 wen she did coz so tired with pain all day!!not good!! Aww hope the diet does help even though dosent seem to be if u been so bad over weekend!and that's great u do volunteering do u find u panic though bein there incase u need the loo?? Xxx

  • Hi

    I always suffer extremely severe pain before a bm every morning,but I also often suffer severe pain just after going to the loo. Afterwards I often have to curl up in a ball on the sofa as the pain is completely incapacitating. It's making my life complete hell. You're not alone.

    Ian

  • Hi I too suffer pain after a bm which sometimes goes on most of the day. I try to keep busy and take my mind off it. Its more of a dull ache which won t go away and pulls you down. I have had ibs for about 15 years but have had a bad spell of it for the last 5 months off and on. I m waiting for a colonoscopy which i m not looking forward to. Find this site so helpful. Thanks everyone and lets hope we all can all find some relief.

  • Hi, just wondering how you are getting on these days, its been some time since some have informed us of progress. On the whole all is going pretty well with me since having spells of lactose free along with being coeliac. Do not have a clue as to why I had abdominal pains , it could be age but young folk get abdominal pains so cannot be age. Best wishes.

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