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Thread: Newly Diagnosed... Can't cope with this...

  1. #1

    Newly Diagnosed... Can't cope with this...

    If you look up desperate in the dictionary you'll find my name! Right, lets start at the beginning (this could be a long story). My whole life I have suffered from constipation and from the age of ten I had suffered an eating disorder up until recently this year, in 2010 I had the worst period cramping I'd ever experienced complete with sweating, shaking and faintness, a few months after I discovered a lump in my lower left abdomen area, near to my hip, I had 2 ultrasound scans over time and was told it's probably just my stool due to my constipation and was put on movical which I would use as and when and I was also put on cerazette which to my relief did stop the violent cramping, sweating, shaking and faintness. I have long term chronic depression and social anxiety disorder so to help that and to help with my weight/appetite I was put on mirtazapine which has helped me go from being 7 stone to 9 stone, everybody said this would help me feel better but then my constipation was worse because I was eating more yet having hardly any bowel movement but then one day when I got up I was hit by the sweating, shaking and the faintness that I'd get from my period so I panicked and ran to the toilet and had a bowel movement and some paracetamol and half an hour or so later I was feeling better but I noticed this kept happening even though I hadnt had a period for months now due to the cerazette stopping it, I googled my symptoms and came to the conclusion I had ibs due to my wind, burning in my throat and stools and urgency to get to a toilet and the pains etc so I did a stool sample and when I saw my dr, my results on the screen said "not inflammatory bowel disease, treat as IBS" , my dr gave me mebeverine and peppermint capsules to take one, three times a day which I have been like it was my religion or something! (I really panic with pain) and I also take a boots probiotic which I've stopped now, since May I have had diaarhea or loosish stools and recently I've noticed it feels cold like menthol and smells of peppermint (sorry too much info) so now I just feel like I'm going around in circles because my scans showed nothing, I've cut out fizzy drinks and only drink fresh orange, water or apple and mango juice, I have one take away a week and three small meals a day which I'm cautious of not to trigger anything off! I'm taking my meds, I'm doing everything I'm told and nothing different to when I used to be constipated and yet I cant shift this sluggish feeling or the diaarhea, I feel so frustrated and disheartened and to make matters worse, I'm suppose to be going Ireland for a week which will involve a lot of being in a car so I'm like ahhh what if I need a toilet or I get my pains, sweats, shakes and that faint feeling etc etc can anybody relate or advise? Please Help!!

    EliStarrz*

  2. #2
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    Re: Newly Diagnosed... Can't cope with this...

    From someone who does have inflammatory bowel disease (Crohn's), I'd say you are very lucky.

    I know it's uncomfortable and can be inconvenient but at least you own body isn't attacking itself!

  3. #3

    Re: Newly Diagnosed... Can't cope with this...

    You have my sympathies Eli.

    I was first diagnosed with IBS three years ago and it felt like it would never get better. Initially I went through a three month spell where I had no normal bowel movements and every meal was an ordeal, every mouthful or sip a concern in case it triggered something. I lost nearly two stones in weight and was at my wits end.

    I eventually started to get the odd good day and then the good spells got longer until I was back to almost normality. I've had attacks since, but none as severe or as long-lasting as my first spell, and I've come to accept it as a part of my life now, albeit one I could do without.

    I found Mebeverine sachets helpful in making me a bit more solid but using it two or three times in a short period would just increase my cramps and toilet trips so I only use it every second day when my tummy is particularly bad. Occasional Imodium, usually after a bad morning episode, helps slow things down a bit for the rest of the day, and I usually pop a couple ahead of a long journey. I tried peppermint oil capsules but didn't like the constant minty taste in my mouth, and they didn't seem to help.

    Sadly I don't think there are any easy answers. When my IBS is bad my stomach feels like it's the size of a pea and I eat about a quarter of what I'd usually eat and yet I could still crap for Great Britain!

    So sorry, no ephinanies from me, but hopefully your symptoms will abate eventually like mine did and if they don't then badger your doctor to do further tests. Since it's a recurring issue for me I'm on a waiting list to get a camera where the sun don't shine!

  4. #4

    Re: Newly Diagnosed... Can't cope with this...

    Quote Originally Posted by aimlesswanderer View Post
    You have my sympathies Eli.

    I was first diagnosed with IBS three years ago and it felt like it would never get better. Initially I went through a three month spell where I had no normal bowel movements and every meal was an ordeal, every mouthful or sip a concern in case it triggered something. I lost nearly two stones in weight and was at my wits end.

    I eventually started to get the odd good day and then the good spells got longer until I was back to almost normality. I've had attacks since, but none as severe or as long-lasting as my first spell, and I've come to accept it as a part of my life now, albeit one I could do without.

    I found Mebeverine sachets helpful in making me a bit more solid but using it two or three times in a short period would just increase my cramps and toilet trips so I only use it every second day when my tummy is particularly bad. Occasional Imodium, usually after a bad morning episode, helps slow things down a bit for the rest of the day, and I usually pop a couple ahead of a long journey. I tried peppermint oil capsules but didn't like the constant minty taste in my mouth, and they didn't seem to help.

    Sadly I don't think there are any easy answers. When my IBS is bad my stomach feels like it's the size of a pea and I eat about a quarter of what I'd usually eat and yet I could still crap for Great Britain!

    So sorry, no ephinanies from me, but hopefully your symptoms will abate eventually like mine did and if they don't then badger your doctor to do further tests. Since it's a recurring issue for me I'm on a waiting list to get a camera where the sun don't shine!
    Hello, aimlesswanderer,

    Sorry to hear you also suffer the same issues, though it's nice to hear from somebody who can sympathise and relate, I was supposed to be referred for a camera "where the sun doesn't shine" but after my stool sample my dr didn't bother, I don't know if it's just me but he seems to just sort of shoo me out of the room asap, I have mebeverine tablets 135mg which I have to take 3 times a day before meals to help with cramping then I have apercap peppermint capsules also 3 times a day before meals but I've stopped them as I felt like I'd rubbed vicks vaporub in my throat, stomach and once again 'where the sun doesn't shine' Anyway, I just have one question if you don't mind, did your horrible episode just randomly start to clear up by itself over time or did you do anything like medication or diet etc to help calm the storm? I've bought some optibac saccharomyces boulardii and imodium for ibs and I've stopped the peppermint but I guess it's just something I'll have to ride out naturally, I just hate that nervous on edge feeling that lingers in my stomach regardless to bowel movements or what I eat, drink, take or do... Thank you for your time, much appreciated, have a good day

  5. #5

    Re: Newly Diagnosed... Can't cope with this...

    Quote Originally Posted by EliStarrz View Post
    Hello, aimlesswanderer,

    Sorry to hear you also suffer the same issues, though it's nice to hear from somebody who can sympathise and relate, I was supposed to be referred for a camera "where the sun doesn't shine" but after my stool sample my dr didn't bother, I don't know if it's just me but he seems to just sort of shoo me out of the room asap, I have mebeverine tablets 135mg which I have to take 3 times a day before meals to help with cramping then I have apercap peppermint capsules also 3 times a day before meals but I've stopped them as I felt like I'd rubbed vicks vaporub in my throat, stomach and once again 'where the sun doesn't shine' Anyway, I just have one question if you don't mind, did your horrible episode just randomly start to clear up by itself over time or did you do anything like medication or diet etc to help calm the storm? I've bought some optibac saccharomyces boulardii and imodium for ibs and I've stopped the peppermint but I guess it's just something I'll have to ride out naturally, I just hate that nervous on edge feeling that lingers in my stomach regardless to bowel movements or what I eat, drink, take or do... Thank you for your time, much appreciated, have a good day
    I have had a similar experience with GPs, once you're diagnosed with IBS some docs seem to feel there is nothing more that can be done and they do indeed make you feel like an inconvenience and just shoo you out the room. Since there's not really an easy solution I think a lot of them don't know what to do or say. I once had a consultation which lasted two minutes and the only advice I was given was "no meat for the next few weeks" which, as a regular meat-eater, was not advice I took on board. You usually expect to go to the doctor when you feel unwell and get prescribed something to make you feel better, so it's a huge shock to the system to get told you have a disease for which there is nothing you can take to make it go away!

    Yes, I hate that constant feeling in the tummy, I felt like I had some sort of poison in my belly, and it would usually wake me up way before my alarm every morning. I found Buscopan quite good to take at night if I was bloated but it would usually make me loose the following morning.

    I did actually have a change of medication that coincided with my improvement, though I've tried it since and it didn't do anything. I was prescribed Amitryptiline at a tiny dose to take at bedtime. I was a bit ambivalent but looked it up online and it is a recognised remedy. I felt like I was getting a bit better before this but maybe it did help, so if you've not tried this already it's maybe worth exploring with your doc. It's not a dose that should give you any side effects, it's way below what you would get for anxiety or depression (apparently it's used at a similar dose to aid bed-wetting in children and I think incontinence in OAPs).

    The other thing I did shortly before my improvement was occasionally throw caution to the wind with my diet and start eating things I enjoyed rather than trying to eat super-conservatively. I felt eating foods that I didn't particularly like was making me worse as I was eating very dry plain things which were a struggle to get down which didn't strike me as being particularly healthy for the digestive cycle. I think I largely stopped caring as eating conservatively wasn't helping and was making me more miserable. I wouldn't necessarily recommend this approach but it sortof helped me.

    Incidentally I found Mebeverine soluble sachets more effective than the tablets and they would provide a slight energy boost but they would usually decrease my appetite by filling me up pre-meal and reducing what little appetite I had.

    I hope you begin to see some improvements soon, but feel free to keep me posted on your progress and if you have any other questions let me know. My IBS will probably kick in again soon as I'm coming off an appetite-enhancing anti-depressant so I may give Amitryptiline another shot.

  6. #6

    Re: Newly Diagnosed... Can't cope with this...

    Quote Originally Posted by aimlesswanderer View Post
    I have had a similar experience with GPs, once you're diagnosed with IBS some docs seem to feel there is nothing more that can be done and they do indeed make you feel like an inconvenience and just shoo you out the room. Since there's not really an easy solution I think a lot of them don't know what to do or say. I once had a consultation which lasted two minutes and the only advice I was given was "no meat for the next few weeks" which, as a regular meat-eater, was not advice I took on board. You usually expect to go to the doctor when you feel unwell and get prescribed something to make you feel better, so it's a huge shock to the system to get told you have a disease for which there is nothing you can take to make it go away!

    Yes, I hate that constant feeling in the tummy, I felt like I had some sort of poison in my belly, and it would usually wake me up way before my alarm every morning. I found Buscopan quite good to take at night if I was bloated but it would usually make me loose the following morning.

    I did actually have a change of medication that coincided with my improvement, though I've tried it since and it didn't do anything. I was prescribed Amitryptiline at a tiny dose to take at bedtime. I was a bit ambivalent but looked it up online and it is a recognised remedy. I felt like I was getting a bit better before this but maybe it did help, so if you've not tried this already it's maybe worth exploring with your doc. It's not a dose that should give you any side effects, it's way below what you would get for anxiety or depression (apparently it's used at a similar dose to aid bed-wetting in children and I think incontinence in OAPs).

    The other thing I did shortly before my improvement was occasionally throw caution to the wind with my diet and start eating things I enjoyed rather than trying to eat super-conservatively. I felt eating foods that I didn't particularly like was making me worse as I was eating very dry plain things which were a struggle to get down which didn't strike me as being particularly healthy for the digestive cycle. I think I largely stopped caring as eating conservatively wasn't helping and was making me more miserable. I wouldn't necessarily recommend this approach but it sortof helped me.

    Incidentally I found Mebeverine soluble sachets more effective than the tablets and they would provide a slight energy boost but they would usually decrease my appetite by filling me up pre-meal and reducing what little appetite I had.

    I hope you begin to see some improvements soon, but feel free to keep me posted on your progress and if you have any other questions let me know. My IBS will probably kick in again soon as I'm coming off an appetite-enhancing anti-depressant so I may give Amitryptiline another shot.
    I used to live in York and I had a wonderful Dr there, he'd test things out for you purely to put your mind at rest, now I'm back in Essex I find myself actually missing that Dr! It didnt shock me as such as I'd been telling my Dr I thought I had IBS and he'd been telling me no until I did that stool sample, it's more frustration that as you said, there's nothing you can take to make it go away.

    I bought deflatine rennies which I might just use as and when for the bloating etc instead of the peppermint caps, I'm just so weary and cautious now that I don't make myself worse, it's like treading on egg shells...

    Oh right, I was prescribed Amitryptiline because I ache so much in my back, hips and legs, plus I have depression so my Dr prescribed that as a 2 birds one stone sort of dealio but it didn't work with either problems unfortunately. I'm glad it works for you though, I guess that's part of this nuisance disease, theres no set cure, what works for one won't always work for another, it's all trial by error etc.

    I'd struggled with food since I was ten after seeing my dad choking on a sweet, this resulted in me being anorexic and so I found it hugely frustrating that I'd been pushed so much to put on weight and when I finally did, like literally just as I did I got told I had IBS and now have to watch what I eat, my Dr told me about the LOW FODMAP, foods you can and can't eat, I looked at it and thought "great, I'm going to be on birdseed for the rest of my life" I tried it for a day or do and thought okay, this is ridiculous, I'm just gonna eat what I like in small quantities and my stomach approves! I don't eat greasy foods really anyway and what I do eat I just have in small portions rather than pigging out on things.

    Anyway, thank you for your time and advice, I hope your stomach is kind to you and your methods continue to work!

  7. #7

    Re: Newly Diagnosed... Can't cope with this...

    Quote Originally Posted by EliStarrz View Post
    I used to live in York and I had a wonderful Dr there, he'd test things out for you purely to put your mind at rest, now I'm back in Essex I find myself actually missing that Dr! It didnt shock me as such as I'd been telling my Dr I thought I had IBS and he'd been telling me no until I did that stool sample, it's more frustration that as you said, there's nothing you can take to make it go away.

    I bought deflatine rennies which I might just use as and when for the bloating etc instead of the peppermint caps, I'm just so weary and cautious now that I don't make myself worse, it's like treading on egg shells...

    Oh right, I was prescribed Amitryptiline because I ache so much in my back, hips and legs, plus I have depression so my Dr prescribed that as a 2 birds one stone sort of dealio but it didn't work with either problems unfortunately. I'm glad it works for you though, I guess that's part of this nuisance disease, theres no set cure, what works for one won't always work for another, it's all trial by error etc.

    I'd struggled with food since I was ten after seeing my dad choking on a sweet, this resulted in me being anorexic and so I found it hugely frustrating that I'd been pushed so much to put on weight and when I finally did, like literally just as I did I got told I had IBS and now have to watch what I eat, my Dr told me about the LOW FODMAP, foods you can and can't eat, I looked at it and thought "great, I'm going to be on birdseed for the rest of my life" I tried it for a day or do and thought okay, this is ridiculous, I'm just gonna eat what I like in small quantities and my stomach approves! I don't eat greasy foods really anyway and what I do eat I just have in small portions rather than pigging out on things.

    Anyway, thank you for your time and advice, I hope your stomach is kind to you and your methods continue to work!
    It definitely helps to find a good GP. They're usually hard to come by and difficult to get an urgent appointment with though.

    Rennies should be fine, they usually settle things a bit. I'm sorry Amitryptiline didn't work for you, I'm not sure whether it did for me. My IBS started a few weeks after I went cold turkey from Prozac so delayed withdrawal symptoms (what with Prozac having a long hard-life) could have been what kicked it off, and it possibly abated once the withdrawal had concluded.

    I'm sorry that you have had such a history of tummy problems, that sucks to go from anorexia to IBS. Yes, the FODMAP thing left me a bit cold too, it didn't seem that there was much left (apart from yummy birdseed). I'm sure I read somewhere that IBS isn't even diet-related, though there are always foods that are higher-risk.

    I hope you manage to enjoy your time in Ireland in spite of nasty IBS.

  8. #8

    Re: Newly Diagnosed... Can't cope with this...

    Quote Originally Posted by aimlesswanderer View Post
    It definitely helps to find a good GP. They're usually hard to come by and difficult to get an urgent appointment with though.

    Rennies should be fine, they usually settle things a bit. I'm sorry Amitryptiline didn't work for you, I'm not sure whether it did for me. My IBS started a few weeks after I went cold turkey from Prozac so delayed withdrawal symptoms (what with Prozac having a long hard-life) could have been what kicked it off, and it possibly abated once the withdrawal had concluded.

    I'm sorry that you have had such a history of tummy problems, that sucks to go from anorexia to IBS. Yes, the FODMAP thing left me a bit cold too, it didn't seem that there was much left (apart from yummy birdseed). I'm sure I read somewhere that IBS isn't even diet-related, though there are always foods that are higher-risk.

    I hope you manage to enjoy your time in Ireland in spite of nasty IBS.
    Thank you, well, touch wood, my stomach has been a lot better this week so I'm hoping I'll have a good week this week coming up too because I go on Saturday! Fingers crossed!

    Hope you have a good week yourself!

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    EliStarrz*

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