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Think i have had this a long time, not diagnosed yet but what a kick in the gut literally

Hi everyone
I have had gut problems since i was young, they said gastro something back then, i was put on zantac at some point and was on that for 20 plus years, I am 53 now, recovering from a TBI and from gall bladder removal last year that caused pancreatitis, about two years after i had my TBI my guts started hurting again and i started asking more questions from my doc, he did a blood test then told me i had IBS, I had problems with my gut a long time, he said to to eat certain foods and that would help it, back then i told him about these attackes on my right side, like a fist in my upper gut and sick to my stomach, i saw 4 more gastro docs, after that each one said a different thing, the first one started off with wanting to do a endoscopy and colonoscopy, i asked if i needed that for IBS? he said i might have IBD, sp i explained after my TBI i was told i should not go under unless its critical, i might not wake up, when i had my gallbladder out last year i wouldnt wake up, my son sat and watched it all, my sister to, she said i turned yellow my bp was 90 over 40, my temperature was 93, the nurses were rushing all around, they could get blood from my finger, i did wake up obviously lol, I was having gall bladder attacks two and 3 times a week, i went to ER for them once, sat in ER for over 12 hours before being seen by a doc or nurse, i told the doc please scan my right side here its like a fist, he said no you have a belly ache go see a doc, dang i was mad, couple years after that my left side started hurting also i keep telling my docs this stuff they tell me to eat lentils and beans and veggies, i tell them about the attacks and the left side now hurting, they said eat more veggies gave me diet paperwork, keep in mind i had now lost almost 80lbs. I went from 205 to 126 at one point i was 116lbs after gall bladder surgery, im back to 132 or so, then this last november i had my back go out and my guts hurt like heck, felt raw, was feeling sick mostly at night after dinner, decided i needed all new docs, enough was enough, i found a great GP who also works with internal medicine, I found a great gastro doc who really seems like he wants to find out whats going on, he wants to do the colonoscopy at a hospital that has a really bad rep, when he heard what had been going on he started running all kinds of tests, my GP said my liver enzymes were high, but said everything else looked ok, the gastro doc ran a stool test his nurse called me and said you tested positive for crohns, i went what? i begged for an explanation she said no wait for your doc visit next week. so i see him, he says he looked at a CT with contrast from when i had my gal bladder attack and it did not show anything that looked like crohns, the only thing they saw was minor colonic wall thickening, he ordered a colonoscopy anyway which i am about to schedule, i need to know at this point. my GP said to go on a low residue diet for now, i been eating lots of cereal and pasta with ketchup, i get minor pain or cramp kinda thing some of the time a good bowel movement or passing gas can make it feel a little better. i had seen 4 gastro docs before this one, i found out later only one was an actual gastro doc, the others where NPs, either way, i guess im here because im concerned about all this, im mad, I have to raise my child, im a single Dad with a great kid, i need to be around allot longer for him, my pain mostly is in my left side, from the center along the lower edge of my rib cage, when i have pains if i feel or hear my stomach gurgle it usually feels better, it feels like something is putting pressure from the inside of me, it happens mostly at night after dinner when i sit down to relax, what do you folks pains feel like? does this sound like crohns?
 
i was really hoping for some kind of response, i dont have my first colonoscopy to see if its crohns for another 4 weeks, so i sit here with stomach pains in the mean time, wondering if i have this disease, most of my life i was told eat more fiber, you have IBS, and i would try all these new diets thinking it would help me, my pain or cramping is really only if i site down or lay down, although laying down if i lay just right the pain is mostly gone, my stomach pains come mostly after dinner about 7 oclock or so once i have sat down for an hour or more, i been just standing up all night or at least most of it. In the mornings i feel much better, since i been on this low residue diet since January, this diet is giving me constipation, i drink a bunch of extra water and that helps, but this honestly feels like i got gas and it wont come out, then at some point every night my guts start just gurgling like gas moving and the pain seems better after that, My pain is mostly on my left side just under my rib cage, when its worse it seems to be in the center left of the bottom of my ribs, and and most on my left side just below my ribs, i have never had any chronic diahrea, and since my guts been hurting its been mostly normal looking bowel movements, when i changed to low residue my bowel changed color and is mostly pale brown, normal looking, it doesnt look like constipation but its hard to go i guess is the only way of saying it, straining, etc, but then again i go wether i have to or not, once in the morning one during the day but i never really feel like i have to go just very crampy. hard to explain
Does any of this stuff sound like crohns to everyone? please any opinion is welcome
 
Sorry to hear you are suffering. I am guessing the stool test came back with high inflammation and that is why they are thinking Crohn’s. A colonoscopy will answer that question hopefully for you. You don’t have to be put under for it but it is uncomfortable- I had to have pethidine as it hurt like hell - but I know others have been fine.
It might be worth looking at IBD AID diet which starts with lots of soft textures and easy digest food- as may be a narrow bit of intestine causing the pain?
I hear what you say about needing to be well for your little one and hope you get answers soon
Best wishes
 
it was weird really, for the past 15 years they tell me IBS, now i get a stool test the nurse tells me it was positive for crohns, then when i see the doc he says hes not so sure its crohns, he said i had a scan with contrast last year and everything looked ok, they noted minor colonic wall thickening but no one ever told me that, they told me i had gallstone pancreatitis, i am on a low residue diet right now, i eat rice chex cereal with lactaid milk, i have yogurt and rice chex for lunch then pasta with butter and salt for dinner, i eat about 6 vanilla wafers for desert, i eat next to nothing, through this time i have lost about 80lbs, im down to skin and bones now. does my pain sound like crohns pain? its upper left side and it does seem better when passing gas or a bowel movement, last night was bad though, nausea last two days then last night a cramp or pain that would not quit on my left side, and i rarely if ever have loose bowel, this morning though i did, but it feels somewhat better now, then this morning i felt wiped out, i have been watching my temperature for infection but i have another weird problem as well, my temp most of the time is around 95 or 96 so its hard to judge, after all this the doc scheduled my colonoscopy as routine? i been in pain since November 23rd does this all sound normal to folks? does all this sound like crohns? everything i have read sounds lie the pain is in the wrong spot and i dont have chronic loose bowel, in fact some times its the opposite since they put me on this low residue thing, most of the time it looks textbook, never seen any blood in stool myself either.
 
Does this makes sense? if i stand up all day which i am currently doing, i stand up doing things or just stand there watching tv after dinner, as soon as i sit down my left side cramps starts, i was given dicyclomine for pain last week which i have not tried, the last two days where tuff, last night was strange also with pain and then relief by morning, i had the shakes felt like i was sick most of the day, checked my temp this morning it was 95.1 which i know sounds strange but low temps started after i had my TBI about 8 years ago, in fact thats when this stuff seemed to start getting worse,
upper left side pain starts in the center runs just under my rib cage, when its a hard cramp its there also, i dont get right side pain, the did do a upper GI with smal bowel and said everything looked good. Im so confused with all this stuff, i just want to eat food, real food, im tired of being in pain all the time, oh yeh, if i stay walking around or even just standing my guts feel ok most of the time, i dont have any chronic loose bowel if anything its normal looking at least according to online stuff, does this sound like crohns or panreatits?, no one has checked me for that even though i had it real bad last year, almost exactly a year ago in fact when my gallbladder failed and they removed it, they said i had scarring in my pancreas and liver from my gallbladder, i was having gallstone attacks sever times a week that were bad, but it got let go for over 4 years of that. Oh yeh if i tryto eat anything else i do get more severe cramping and pain on my left upper side, does this sound like crohns? i keep reading its mostly right side and belly button level, i dont have that that i can tell,
 
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How are you doing, any progress? Your diet sounds miserable I was wondering if getting a blender and doing soup and smoothies would give you a chance to get some healthy food down without hurting? Maybe a referral to a dietitian but I guess they will need the outcome of your colonoscopy first?
Best wishes
 
my diet is horrible actually, but i found that i am also dairy intolerant, i was put on a low residue diet for 3 months i was in pain every single day, I ate rice chex and lactaid milk 2 to 3 times a day, or i would have pasta for dinner with just a little salt on it, i got fed up with it and simply stopped, i had a turkey sandwich with mustard and ketchup, did not make symptoms worse or better so i been eating turkey sandwichs. I started drinking extra water also, something is calming down allot, i had a few days i had zero cramping on my lower left flank. if i read it right folks with crohns dont have flares that last 4 months, IBS has flares that last 4 months, i have no blood in bowel, i do get really fatigued when this happens and thats gone also, im sleeping again at night, it still seems like if i sit down it gets worse if i stand up it i dont notice it. its really confusing honestly, i hae trying to diagnose myself but this happened in November, and the prior year i had my gallbladder fail and for the previous 5 years i was having gallbladder attacks sometimes a couple a day, i ended up in ER and multiple docs and they all said eat more fiber lol all 5of them missed my gall bladder failing, they said after they removed it last year i also had gall stone pancreatitis and that it may or may not go away, but my doc says my pancreas is functioning so, also my doc said i have high liver enzymes but i was also on Zantac for 30 years, yeh you heard thhat right 30 years, then they recalled it. i hope to have answers after may 10th, thats my hospital date for the colonoscopy. I am dreading this one, im dreading if they dont find anything and if they do find something, both outcomes are not good, one is a bad disease the other means i will keep having this happen
 
Had my colonoscopy, they said my entire examined large intestine was normal and found a singular erosion in my terminal ileum,
They sent it out for biopsy, any one have an opinion on this? they found only one, i have never had pain on my right side my pain is all left sided.
IS this how it starts? could this be from 7 years of gallbladder attacks and then getting pancreatitis ? am i grasping here?
 
Had my colonoscopy, they said my entire examined large intestine was normal and found a singular erosion in my terminal ileum,
They sent it out for biopsy, any one have an opinion on this? they found only one, i have never had pain on my right side my pain is all left sided.
IS this how it starts? could this be from 7 years of gallbladder attacks and then getting pancreatitis ? am i grasping here?
Hello, I hope you are doing well. Did you get the biopsy results?
 
no results yet been 2 weeks, i do know it can take 3 weeks, this is driving me crazy, if its crohns lets get treating this if its not they need to find out why i have pain all the time on my left side.
 
no results yet been 2 weeks, i do know it can take 3 weeks, this is driving me crazy, if its crohns lets get treating this if its not they need to find out why i have pain all the time on my left side.
I can relate, mine is similar to what you have, it's generally on the left, except I have diarrhea too, when I walking I almost don't notice it because of that I am not sure if it's crohn. My colon looked good, but biopsy results showed non-specific mild inflammation, probably I will have to get a colonoscopy again. Try to be calm, I hope we'll get through this, and please let me know when you get your biopsy results.
 
I will post in here when i get my results, allot of this makes no sense, my colonoscopy showed a normal large intestine and a singular erosion, which could be anything. its just strange my bowel habbits are textbook, i get occassional loose bowel but not full on diahrea and even then most of the bowel is normal a litte in the beginning or end and im like clockwork every day some times twice a day, never had blood in stool just pain in my left side. they used to tell me it was IBS, if this is IBS holy crap folks are underestimating what IBS can do
 
ok got my results back from the biopsy, says it came back as benign, so from what i read i have a TI erosion with not being crohns i hope, i have not heard back from my doc its been 3 weeks i just got a letter from the hospital about the biopsy results.
anyone have any clue what they will do next? what does this mean? how do they fix this, is it going to get worse or better? if its benign i just got one?
anyone have any ideas?
 
ok got my results back from the biopsy, says it came back as benign, so from what i read i have a TI erosion with not being crohns i hope, i have not heard back from my doc its been 3 weeks i just got a letter from the hospital about the biopsy results.
anyone have any clue what they will do next? what does this mean? how do they fix this, is it going to get worse or better? if its benign i just got one?
anyone have any ideas?
How are you doing, did you get any diagnosis?
 
Nope no response form the docs yet, in fact not a word been two months, i left a message for an appointment and have not gotten a call back, not sure if this is how docs work but this seems very much out of whack
 
How are you doing, did you get any diagnosis?
Nope no response form the docs yet, in fact not a word been two months, i left a message for an appointment and have not gotten a call back, not sure if this is how docs work but this seems very much out of whack
 
Nope no response form the docs yet, in fact not a word been two months, i left a message for an appointment and have not gotten a call back, not sure if this is how docs work but this seems very much out of whack
How do you feel, how is your health, your pain currently?
 
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