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  • chronic bowel pain + extreme back pain + unknown others, someone help please

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    Old 06-26-2010, 07:43 PM   #1
    jacktwo
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    chronic bowel pain + extreme back pain + unknown others, someone help please

    1. 5 years ago I started experiencing extremely painful movements in my bowel / gut. the pain would last around 15 seconds and die down, and continue every minute. the feeling could be described the same as a heart attack, a stroke from 1 side of the gut to the other.

    2. this died down after 6 months. however I began to experience minor back pains. i assumed this was due to my lifestyle, therefore started gym and more excersise and less sitting down all day at the desk. this did not help. I have changed my chair at work and home 4 times - this has not helped.

    3. for 2 years now I have also experienced bowel movement while asleep. this might happen once every 2 months. i always make sure i have been toilet that day properly before going to bed. the movement is more like water / very fluid - not healthy / normal stools. im 23 years old by the way - definetely should not need a nappy at this age.

    4. 7 months ago, this shocked the life out of my almost - one day i woke up, spent an hour daydreaming watching tv, ate breakfast, went to the shower, and i then in the shower noticed that i had virtually no control over my left hand all of a sudden. if you hold out both hands, and flex your fingers up, clench a fist, or force your wrist upwards like you are making a wave sign - i could not do any of this with my left hand. i felt no pain, no feeling in the arm to suggest i broke something, my nerves connecting my left hand to my body just stopped. the hospital suggested prophyria - this was tested for, nothing found.

    5. present time - my back pains and gut aches have taken me by storm. everytime i eat anything, literally any food possible, my entire gut below my naval really hurts. it contracts with horrible pains and has a constant dull pain most of the time. i find that this is now the ultimate cause to my back aches, as they only ever happen when my gut is in pain, and the gut appears to experience pain when either i eat, or am stationary in a chair for longer than 1 hour. i am finding that the only way to avoid the pain is to never sit, never lie down in any position, always stand up and always stay active. any point i stop this, i get the pains all over again.

    6. some examples of the present - today i was in agonising pain from just eating some toast and having a glass of water. i decided to stop sitting down and stand up for 2 hours listening to iron maiden. i also did some push ups and stretches. i also took panadol extra. this temporarily stopped my pains. i was fine for the rest of the day until bed time. 10 minutes after lying in bed, it all started again. gut went into major pain, and caused my back to give me hell. this forced me to get out of bed and stand up yet again. i am so tired and want to sleep but i cant, lying down hurts at the moment.

    7. there is not a single day in the past 2 years at least where i have been pain free in either my gut, back, or both. normally the pain is constant and my mind has trained itself to accept it and deal with it since healthcare in the UK is pathetic and nothing ever gets done to help or fix the issue. however there have been some days where it has hurt me so much to the extent that I ran myself into a concrete wall and knocked myself out cold because i just couldnt take it. other days I have been turned into a maniac - running around the house in agony ripping up pillows, beating myself, tiring myself out to the extent that i end up fainting.

    8. over this long period of 4 years, the NHS in the UK have come up with the possibilities of... IBS, prophyria, bad posture = physio or osteotherapy, lack of excersize = gym more, excersize more, bad diet = eat better, x ray check on back - nothing found. I have done everything they have told me to do which they claim should resolve my problems. my problems are not resolved. i am still in deep pain everyday at random times and i believe there is something horribly wrong somewhere inside me and i am comming to the point of fearing for my life - when the pain is so much i try to control myself but i cant sometimes.

    9. everyday now is a giant struggle. i cant concentrate properly at work when i get it, i keep making mistakes. i work in IT and too many mistakes turn you into a liability rather than a resource - i could end up being fired simply for being sick and unable to focus properly. i wake up everyday cherishing every second i get pain free possible and praying that my pains later on wont be that bad.

    10. why am i here then? - im trying to seek a form of sanctuary, find some hope maybe from others here. this has been going on for so long, so far all GPs and doctors have either been inexperienced and not helped, stupid and not helped, or ignorant and sent me away on a useless prescription of pills that i dont think i need and never have helped.

    i am so desperate for help - please, someone help if you can.

    Thanks.

    Last edited by jacktwo; 06-26-2010 at 07:48 PM.

     
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    Old 06-26-2010, 07:59 PM   #2
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    Hi,

    I am so sorry you are going through this terrible thing. I have not heard of this but I can only make a couple of suggestions at this point.

    I didn't see where you said you kept any sort of diary of sorts of what you ate. It could very well be food related but I am not sure. Maybe see an allergist. It could be a severe case of celiac disease? I am only guessing here.

    There was a thread on here about a food elimination diet I think, it was a very long thread and it walked you thru how to do it. I would try to find that thread.

    Raw foods come into my mind for some reason. Sorry I can't remember more but I take medications for my back that hinder my short term memory ...blah.

    I'm a retired IT government worker for the US fed gov. so I know what you mean, you need to be sharp these days! Lots of competition out there.

    I hope this helps, really do try keeping that diary, keep one for food and then keep one about the pain and other stuff. You are so tired you are having a hard time following what is happening now.

    CJ

     
    Old 06-26-2010, 08:13 PM   #3
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    Quote:
    Originally Posted by no34evr View Post
    Hi,

    I am so sorry you are going through this terrible thing. I have not heard of this but I can only make a couple of suggestions at this point.

    I didn't see where you said you kept any sort of diary of sorts of what you ate. It could very well be food related but I am not sure. Maybe see an allergist. It could be a severe case of celiac disease? I am only guessing here.

    There was a thread on here about a food elimination diet I think, it was a very long thread and it walked you thru how to do it. I would try to find that thread.

    Raw foods come into my mind for some reason. Sorry I can't remember more but I take medications for my back that hinder my short term memory ...blah.

    I'm a retired IT government worker for the US fed gov. so I know what you mean, you need to be sharp these days! Lots of competition out there.

    I hope this helps, really do try keeping that diary, keep one for food and then keep one about the pain and other stuff. You are so tired you are having a hard time following what is happening now.

    CJ
    hi,

    thanks for the advice. i will start that today and make up a long diary of everything that i eat and everything that happens. maybe if i showed it to a doctor and they read the whole thing it might answer a few things.

    i have gone for a blood test recently to find out if i am enimic, no idea what that is - something about bleeding and ulcers i think.

    when i go back to the GP i will demand that i get refered to a specialist, even if its the wrong one they can always refer me to someone else correct i guess.

    i`ll see what the gp says about the food. at the moment anything i stick down my throat causes it to hurt, it could be the best favourite food i like even - still hurts.

    thanks again!

     
    Old 06-26-2010, 09:34 PM   #4
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    Hi,

    I think they are saying you are anemic, low on iron. So you probably have blood in your stool or not getting your nutrition thru your food?

    Does it bother you when you eat/drink dairy products? Have you lost a lot of weight? Are you taking any vitamins/supplements?

    So you do know that you have ulcers? That could be causing the pain. So I would ask to see a gastrologists.

    CJ

     
    Old 06-27-2010, 04:03 AM   #5
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    Quote:
    Originally Posted by no34evr View Post
    Hi,

    I think they are saying you are anemic, low on iron. So you probably have blood in your stool or not getting your nutrition thru your food?

    Does it bother you when you eat/drink dairy products? Have you lost a lot of weight? Are you taking any vitamins/supplements?

    So you do know that you have ulcers? That could be causing the pain. So I would ask to see a gastrologists.

    CJ
    hi,

    i might be, we`ll find out from the blood tests i guess. i dont usually have stools when going to the toilet, it all comes out as thousands of small bits and mostly watery and very fluid. no blood to be seen.

    nothing out of the ordinary happens with any dairy products. i have checked this morning and shocked to see that i have actually lost quite a bit of weight. 2 months ago i was 66kilos, now i am at 60. i have maintained 66 for around 7 years and this is the first time i have dropped down below that.

    i dont take any vitamins or supplements because i simply dont know what to take and no one has told me to take any related to my problem.

    i might have ulcers however how do i get that checked?

     
    Old 06-27-2010, 07:34 PM   #6
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    Hi,

    A gastrologists can do some tests, one is where they put a camera either down your nose or throat (not sure which, sorry) and it goes into your stomach and they can look for the ulcer. I think they do it w/ mild sedation so don't worry about that.

    Blood isn't always visible to the naked eye in the stool.

    Make sure you have a written list of questions/concerns when you go to the Dr. Its so easy to forget, make sure to mention the weight loss.

    Keep us posted, ok? Are you talking to your friends and family about this stuff? That helps as well to have an advocate, I like to take someone with me when I go because I get so overwhelmed with info plus I can get kinda ditsy!

    CJ

     
    Old 06-28-2010, 03:58 PM   #7
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    Quote:
    Originally Posted by no34evr View Post
    Hi,

    A gastrologists can do some tests, one is where they put a camera either down your nose or throat (not sure which, sorry) and it goes into your stomach and they can look for the ulcer. I think they do it w/ mild sedation so don't worry about that.

    Blood isn't always visible to the naked eye in the stool.

    Make sure you have a written list of questions/concerns when you go to the Dr. Its so easy to forget, make sure to mention the weight loss.

    Keep us posted, ok? Are you talking to your friends and family about this stuff? That helps as well to have an advocate, I like to take someone with me when I go because I get so overwhelmed with info plus I can get kinda ditsy!

    CJ
    hiya,

    i`ll definetely keep everyone posted, ive had more advice and help here than from anyone else so far!

    gastrologist - on the list for when i go to the docs. im going to make an appointment for this wednesday, if he doesnt have the blood test back then i`ll make another 1 again the following week.

    i have a bit of news about all this though, i think...
    for past 3 days, ive noticed that anytime i am adding pressure to either my gut / stomache, or back, i get the pains. so.. when sitting down my gut is obviously squashed, and my back is pressing against the chair. and when lying down to sleep on my back like i normally would... this has been agonising for 3 days now. ive not managed to get much sleep at all.

    im also noticing that eating normal sized meals like a breakfast / lunch / dinner causes my gut to play up when digesting and then the same scenario occurs. so ive basically given up meals and just snack all day. im eating as healthily as possible however little as possible and very often all the time, allowing me to avoid meals and avoid the pain - but of course this contributes to more weight loss and isnt normal.

    so now i basically am getting the full force of the pain everyday when lying down. lying on my front doesnt help. i can feel the spine sort of bent down pressuring there so it still causes the pains. ive tried giving up pillows to have my back as straight as possible but that doesnt help either. i can also feel tenderness and the pain starts from the gut when lying down because im flat and that stretches the gut / stomache a bit.

    maybe i am riddled with tumors in various places.

     
    Old 06-28-2010, 08:54 PM   #8
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    I would recommend 5-6 small meals throughout the day. Maybe sleeping in a recliner would help or sleeping on your side. I wouldn't fret/worry over the tumor thing. Could definitely be a inflammatory bowel problem for sure, you just never know. Keep writing everything down.

    CJ

     
    Old 06-30-2010, 10:58 AM   #9
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    Quote:
    Originally Posted by no34evr View Post
    I would recommend 5-6 small meals throughout the day. Maybe sleeping in a recliner would help or sleeping on your side. I wouldn't fret/worry over the tumor thing. Could definitely be a inflammatory bowel problem for sure, you just never know. Keep writing everything down.

    CJ
    hiya,

    blood tests came back, went to the docs again and its confirmed im bleeding from inside my stomache which can only mean an ulcer.

    yesterday going to the toilet my waste was jet black colour which also is a sign according to the docs, so ive been given the go ahead to call up anytime if it happens again for an immediate endoscopy, in the meantime i am on omeprazole pills and taking double the standard dosage.

    oh well, finally got a solid answer at least! now i have to google endoscopy.

     
    Old 06-30-2010, 06:05 PM   #10
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    hey, yeah this is that test I was talking about where they put the camera down your throat I believe. So did they put you on a bland diet? Nothing spicey, defiintely NO black pepper I remember that. My best friend had one and it was treatable via medications and she is fine now.

    SHe used to take anacin (aspirin product) before going to bed when she had been drinking a lot of beer...bad move.

    So stay away from aspirin too. Don't want to do any thinning of the blood right now.

    This is fairly good news I think, don't you?



    CJ

     
    Old 07-05-2010, 06:55 PM   #11
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    Hey Jack just wondering if you had your endoscopy yet? Plz let me know. Concerned. CJ

     
    Old 09-12-2011, 06:41 AM   #12
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    Quote:
    Originally Posted by no34evr View Post
    Hey Jack just wondering if you had your endoscopy yet? Plz let me know. Concerned. CJ
    hiya,

    sorry for not getting back for a long time. ive found the problem, i have crohns disease.

    so everything i described i am having problems with is just that - i have crohns.

    i eventually went for a ct scan and it showed it all there. problem is it is so bad and spread across a large section of my smaller intestines going up to the entry of my larger upper intestine, so surgery to fix it is a complete no sadly. i have to keep taking azathioprine for the rest of my life, and iron pills everyday, and a b12 injection every 3 months for the foreseeable future.

    i am actually a lot better now and dont feel any of the pains i did before. i do however worry a lot about my diet, since im not able to eat much of anything thats healthy / good for the body as it will cause an attack on me, all the foods i am eating are just lots of carbs and protein mostly. so i dont know how thats going to affect my life expectancy. i still am quite tired and weak on a daily basis, but i am getting fatter and keeping weight so thats good!

    i just dont think i`ll be living as long as i had hoped, i cant expect to reach the 80s without any greens or vegetables in my diet, and neither do i want to force eat it and make my crohns flare up as that itself is more threatening than the food - the doc said if i am not careful and keep abusing the strict diet and keep having attacks i could end up with a hole somewhere in my gut - which is of course instant death if i drink or eat something and causes that hole to tear even bigger, i would just end up poisoning myself effectively.

    so thats the update! i am glad though that im not sick anymore, just have to be extremely careful from now on.

     
    Old 09-12-2011, 09:15 PM   #13
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    You really should join a crohns message board and find out more about crohns. yes foods can cause problems and every one of us with crohns find that some foods cause us problems and another person with Crohns can eat that food and have no problems. Food does not cause crohns! Crohns is a auto Immune disorder disease.. I have had Crohns since 1968 and have had 3 bowel resections. I can eat green vegtables ,any vegtable actually, salads. But let me eat Very much meat beef pork and it cause cramps and I find it just hard to digest..
    As to foods causing a hole in your bowel and eating more food making the hole bigger? That makes no sense at all. Your body sees you intestines as a foreign body and orders the immune system to attack it so to speak. This cause inflammation. if the inflammation continues for months that can cause a hole... Do some reading on this so you understand it better. Glad to hear your feeling better.

     
    Old 09-13-2011, 06:55 AM   #14
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    Quote:
    Originally Posted by gardenandcats View Post
    You really should join a crohns message board and find out more about crohns. yes foods can cause problems and every one of us with crohns find that some foods cause us problems and another person with Crohns can eat that food and have no problems. Food does not cause crohns! Crohns is a auto Immune disorder disease.. I have had Crohns since 1968 and have had 3 bowel resections. I can eat green vegtables ,any vegtable actually, salads. But let me eat Very much meat beef pork and it cause cramps and I find it just hard to digest..
    As to foods causing a hole in your bowel and eating more food making the hole bigger? That makes no sense at all. Your body sees you intestines as a foreign body and orders the immune system to attack it so to speak. This cause inflammation. if the inflammation continues for months that can cause a hole... Do some reading on this so you understand it better. Glad to hear your feeling better.
    hiya,

    i have had the chrons for 3 years undiagnosed, no treatment and with major attacks and problems throughout that time until now. the damage caused to my gut is extensive throughout and it is still inflamed. its much better now of course however i still have to be careful what i eat. i have found though that i am the opposite to you, greens, vegetables and so on are what causes my flareups to occur. stuff like potato, high carbs, starch, steaks and things like that are pretty much the only thing i can eat without experiencing any problems. so each to their own i guess. and yeah i know its a genetic thing, i dont blame myself for getting chrons now that i know i could not have done anything in life to prevent it.

     
    Old 09-13-2011, 07:13 PM   #15
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    Re: chronic bowel pain + extreme back pain + unknown others, someone help please

    Did you have to have surgery to remove some bowel? resection surgery? or is the meds helping the inflammtion? You just have to go by trial and error eat what agrees with you..

     
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