Not ibs as diagnosed by go!!!

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A few weeks ago I did a post about my doc diagnosing me with ibs even though I had blood in my stools, forward 4 weeks and I'm finally a stone's throw away from a diagnosis and it is definitely not ibs!!! I had a colonoscopy yesterday which found I had angiodysplasia which had been picked up on my last scope 3 years ago, but this time they also picked up sigmoid colitis, to say I am relieved is an understatement

I finally know it's not all in my head and I do have a genuine condition. I had about 8 biopsies taken and have to wait for a confirmed diagnosis from the consultant but I'm almost there and can now start looking at diet, medication etc!!! Sorry just needed to share as I'm just relived I have answers.

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  • Posted

    glad u have a diagnoses- after almost 4 years NOTHING here had every test- NOTHING--they think I am NUTS!!!!!  I have lost over 20 lbs---
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    • Posted

      Keep pushing for tests it took me 4 years in total to get the results I I got yesterday, best of luck to you x
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  • Posted

    Yipee!

    Yes, you can target specifically the issue(s). The angiodysplasia explains the bleeding, right? Will they be 'lasered' or something?

    And the colitis the pain and symptoms. Will you get specific medication for it? May I k indly ask which one? Is there a certain diet that helps?

    Oh it's wonderful not being dismissed anymore. And I hope with a good diagnose comes a good handling and relief of symptoms in order to enjoy life!

    All, all the best!

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    • Posted

      Hi Sanya. As you are such a fountain of knowledge on here, please can i ask you do you know what the ranges of calprotectin are in stool tests? all i know is that 50-100 is borderline positive, over 100 positive, but what does it range upto? mine was 280 recently, I just want to gage how high that is on some sort of scale, but i can't find anthing definitive on google. many thanks xx

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    • Posted

      Of course you might, but with subject to correction please. ;-)

      (my little know-it-all knowledge, hehe, is not complete either, but love to dig and ncbi is a great source, too. Just put in ncbi with your parameter in search, they have great studies in detail and show the pros and cons)

      Basics first:

      Calprotectin (a protein found in neutrophils = a type of white blood cells)  in stool is considered normal being under 50mg/kg

      (please always compare units, if same unit is used!

      µg/g is hence the same as mg/kg.

      Different labs might set slightly different cut offs for categories, what to call 'normal' or 'boarderline'wink

      50-150 mg/kg considered equivocal (in children - on our result)

      50-100 mg/kg considered equivovcal (in adults)

      100-250 mg/kg considered moderately high

      250-1000 mg/kg considered high

      >1000 mg/kg very high 

      and positive >150mg/kg

      Elevated fecal calprotectin indicates a probability of intestinal inflammation due to many causes, whenever you could find more neutrophils around: hence in infecious or inflammatory conditions.

      Values above 250mg/kg are even more predictive (especially in children) for IBD.

      But if you had for sure IBD and was in remission and a calprotectin screen showed then to be above 50mg/kg, this small value is already associated with a risk of relapse within 12 months (statistics).

      (Calprotectin can also be false neg, rarely but still.)

      So the value interpretation is to be seen in context, what it was previously, what is going on, as to why the raise.

      Now another basics:

      calprotectin is not a sole marker for IBD therefore. It goes up when ulcers happen due to NSAID use, bowel cancer even, colonic adenomas, coeliac disease or diverticulitis or infections (gastroenteritis).

      280mg/kg (µg/g) is elevated enough and clearly elevated, indication for further investigations for sure. It is not the highest value ever seen though.

      New IBD findings often have values over 300mg/kg.

      (study: 6 IBD confirmed patients: all over 200mg/kg calprotectin, all but one over 300mg/kg actually.)

      I give you some study results because you asked for 'values' to compare yours against.

      some examples:

      Final diagnosis was functional bowel disease caprotectin values found were: 61–547?µg/g (what a broad spectrum in values......)

      some IBS people test positive even not using NAIDS:

      overlap in people with IBD and a group with IBS: range for IBS 16–139?µg/g. (but the value is definitely lower)

      BAM does not raise calprotectin, so is no source of false positive result.

      Calprotectin is a great screen, but again just one piece in the puzzle.

      Unfortunately due to its nature being blandly a protein of a neutrophile white blood cell, there is no range x-y for a certain disease to distinguish like table.

      All all the best!

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    • Posted

      duh, if only I could edit my post.

      Hope you still understand it. e.g. the " and >150 as positive" should have been deleted as mentioned beforehand and so on.rolleyesredface

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    • Posted

      Sanya, thankyou so much for this great info. i will save it on my email notifications so i have it for future ref if needed. it confirms what i thought about positive calprotectin can indicate poss coeliac or crohns also in the face of ongoing symptoms & a "normal limits" colonoscopy. I have managed to get my gastro consultant to do some further investigations retesting for coeliac (negative in 2012) & contrast mri small bowel (as never looked at entirely & in the face of current symptoms/calprotectin test, few other reasons too that could point to problems in small bowel. (without resistance following a stern letter to him i might add....). i do look at the ncib site sometimes through links when I'm looking for answers to things, the info is great on there as it is clinical & factual, but sometimes it's hard to find the pinpointed info/answer i require. Thankyou so much for your brilliant info again. You're very good & thorough with you answers on this forum to me & many others which i always read with interest. we are lucky to have someone so intelligent & able to read into things in such detail on here. xxx

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    • Posted

      You are too kind!!! blush.redface

      Jabbering on for so long can be annoying, too.

      But no one is forced to read, so.....biggrin...

      I continue to jabber, when I think neccessary....and that in English as a second language .... seems to make it a bit longer to express for me, too.

      My apologies at this point please.

      BTW:

      Make sure please to expose yourself to gluten before retesting in case it was an antibody blood test.

      There is also a genetic blood test for coeliac disease; when the gene is found (HLA DQ2 or HLA DQ8),

      it doesn't mean one has coeliac, only 1 in 10 (some studies say 1 in 30) is, but if it was not found (like in my daughter and her grandma was coeliac positive, hence she was tested also genetically even antibodies and biopsies were negative), then coeliac is excluded for sure.

      Best of luck for all your diagnostic testing that is coming up to find an answer and go from there!!!!

       

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    • Posted

      Thanks Sanya. yes my consultant checked with me that i am not gluten free at present, so all good. its an anti-tissue transglutaminase antibody test (ATTGA) on blood form & also: bone profile, crp, fbc,ferritin,folate,liver function,magnesium,urea electrolyte & creatinine, vit b12, vit d. i presume these other things are to look at poss malabsorption issues??? i take a daily multi vit, do you think i should stop this or continue with it - i am having my bloods done on monday. i thought if i keep taking it it may mask deficiencies, but on the other hand, it will show what my levels are normally like as I take the multivit daily.... what do you think?xx

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    • Posted

      Dear Looloo,

      yes, it depends which test, which test principle, and sample material.

      It also depends of the composition/dose of your supplement and gap between last intake and sampling:

      Best is, if you don't take a supplements at least 24h prior (better 48h) blood test. Then it should be all good.

      There is no need to stop 1 week prior blood test at all

      Since supplements are part of your daily intake, your food, it is very important, that your blood test can reflect that. 

      You actually want to find out, if they were worth taking. Exactly right.

      To avoid a wrong measurement via intake spike or influence chemically on a test (as Vit C is very well known for) the recommondation is to leave those supplements away for min 24h prior blood taking to be on the save side.

      Vit C leaves the body very quickly via urine, so it's fine.

      For your blood parameters you need to be fastened anyway for that very reason to be able to compare people's values with different diets and avoid wrong chemical reactions, too.

      You take orally (high quality, well listed ingredients) supplements in order to prevent deficiencies - you might copy a pure ingredient list to provide your doc with what and how much you are taking-

      because if you had guts, that are very bad with absorbtion, you still would suffer a lack in those since over the counter supplements are quite low in dose usually

      (to stay save in case one has enough in food anyway. Food is not food. Everybody has a different diet and everbody's body has to make the best out of it of what is offered and what is needed and what is too much. Water soluble vitamines are simply flushed out, the other vitamines always in very low concentration to be save. Surprisingly though is, even if a stomach misses the intrinsic factor for VitB12 absorption or disease in terminal ileum prevents absorbtion, there is an emergency 1% absorbtion in place, that even oral therapy remains effective. And that's what you want to do with supplements. No mistake there.)

      Electrolytes have to be kept in a very tight range by body anyway no matter what you offer via food and drinks,

      one just must make sure, to drink normal good water enough.

      At pathology they always ask you which medication you took since every medication can impact a test simply by its chemical reaction or not so simply actually muddling with e.g. blood clotting for real (not a false result).

      You can tell them when your last supplement was taken, too, if they wanted to make I  note, but I doubt it.

      In short:

      Avoid VitC and all other supplements prior any lab test please 24h minimum (VitC influences stool tests that look for occult blood, it muddles with urine dip stick or blood tests especially for some glucose reactions)

      folic acid: your intake should be less than 800µg per day via supplement.

      If it was more, let your doc know please (in case it masked a Vit B12 def)

      No calcium supplement 48h before a bone scan.

      Your bloods should reflect levels of your normal life

      and if your normal life is with oral supplements, then be tested with those supplements please, just not 24h intake (better even 48h) beforehand.

      That's all.

      Best of luck!

       

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    • Posted

      Thanks again Sanya for a brilliant reply. i think what i'll do is get my bloods done on tuesday (its a walk in blood test at hosp not appt) & I won't take any supplements on mon or tues am (i've already taken todays (sunday). then it should, like you say not give any false spikes & reflect more normal everyday levels. thanks again. xx

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    • Posted

      Tues morning fasting blood sounds like a good plan with no supplements on Monday, but on Sunday. Perfect!
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    • Posted

      Hi Sanya. can you help me at all here? i am awaiting results of my pillcam endoscopy which should be any day now. i think you know my history, but to recap: i have colitis, bile acid malabsorption, ibs-d, fructose malabsorption - all controlled with meds/diet. after quite a good year of having all my bowel problems under control, my symptoms detiorated in may - 5-8bowel movements a day at least 60% diarrea, constant lower abdo pain that gets worse the more bm's i have, only let up at night when i go to bed. extreme tiredness, & backached regularly. also just had a bout of shingles/chicken px recently(doctor thought it was a mix looking at all rashes/locations). i had a positive calprotectin test 280, negative coeliac test, "normal limits" colonoscopy & removal of another polyp(all ok), normal contrast mri, & now waiting for my pillcam results. my concern is if my consultant comes back with nothing found - then what further tests/investigation can/should be done to get to the bottom of my symptoms? i don't want to live a life taking painkillers that don't do enough for the pain to get me back to work/normal life, i want treatment to make it better. any suggestions sanya would be truly appreciated as i want to be "armed" with what to do next when my consultant rings me anyday.  thankyou in advance.  xx

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    • Posted

      Hi Looloo! 

      Nice to hear from you!!

      You are going through so much. It's horrid, it's constant, daily.

      BTW, chicken px and shingels are anyway completely the same for you as a patient = herpes varicella infection. Usually once infected (if naturally or vaccinated) those viri stay life long along your nerves. The lower the immune system, the more likely they regrow in numbers, along nerves = shingles.

      Also mild chickenpox - bit of rash but no other symptoms- after first vaccination/infection is possible when in contact with wild strain, only few typically very infectious blisters should form.

      Shingels due to location along a nerve just hurt like hell. (I hope you did not have it full blast)

      Mild chickenpox rash doesn't hurt, but is highly infectious (so is the saliva) and if passed on to pregnant non-immune women a real huge problem for the fetus.

      Breathing in the virus is enough to get infected, no need to touch or speak to  in direct conversation.

      In German they are called 'wind pox' because they are so infectious/contagious, that an infectious person can infect you from ca10m away = carried by the wind.

      That's what one has to take care of most:

      who to have contact with and not to mingle amongst strangers (e.g. shopping) as long as being really knowingly contagious. Shopping can get a real trap for pregnant women, for wee babies/newborns. Once they are older, usually no problem, hardly a way to excape them anyway but the timing is important. Don't get me started on 'pox parties', people do not understand the difference and danger, even well meant.

      After 60 yrs of age its actually recommended to do a h.varicella immunisation to boost the IgG without obvious sickness to prevent shingles from breaking out. But there are always the odd one out and no one shoe fits all.

      Anyway, getting side tracked. ;-)

      how did you go with the pillcam?

      How was the swallowing? When did it come out? Any discomfort in the stomach until it was passed on into guts?

      It's a great tool, isn't it.

      It really should show the surface of all your intestine very well, ulcers, stenosis, I hope they give you some pics. It's very interesting to look at.

      As to what to do I am a bit empty in my brain (yes!), because the pillcam is really one of the last options we still have on our list (and not done yet), but our calprotectin level is 0.

      If the calprotectin level was up, I would ask for medication trials like IBD patient receive, if that made sense and was an option. There is an inflammation that this white blood cell protein is found in the first place. How to tackle the inflammation in general.

      The problem: those 5 ASA and equivalent treatments (have a search for IBD treatments, there are quite many it seems, but I have zero experience) are horribly expensive and I suspect no one gives it just like that for a trial.

      Like I would have wished for a iv. immunoglobulin trial treatment, 2 in 3 weeks apart to see, if our symptoms were GI autoimmune disease related. This seems one way to treat them. Of course immonoglobulin is a human product = infection risks = expensive = hard to get, hence no way to get the hands on for a trial.

      A trial - my argument - if not contradicted due to other medical issues, is always diagnostic as well: if it worked or not.

      We had a 3 month+ neuropathic pain trial and did not work. At least the pregabalin we ease out now, keeping Amitrtiptyline for the night (for a better sleep). Would Amitriptyline be something? It's meant to help with abdominal pain (not for depression as it originally was labelled for).

      If anyone reading this has an idea, we would be so, so happy to hear about it.

      In our desparation I ordered L-Glutamine.

      Looloo, I am very sorry to say, that I am pretty much helpless and not useful for any suggestions, that could be a real good 'arming' for consultation.

      I am not sure if I was happy or not to find something with the pillcam. I guess it depends, WHAT is found.

      I wish you all, all the best!!!!!!!

      Kind regards!

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    • Posted

      Hi Sanya. thankyou so much for your reply. i was afraid you might say there isnt really anything else for my g.consultant to try if nothing found on pillcam results......but, if you say that, than i am confident that is the case & i can't be easily fobbed off by my consultant. i am afraid if he doesnt find anything on the pillcam he will do what alot of other consultants do - fob me off with ibs as he doesnt know what's causing my symptoms. i am so convinced this is not ibs, as i have ibs-d & when i get bouts of it it is not constant-it usually occurs when i've eaten too big a meal at xmas or too much chocolate in one go(like more than 8chunks) & the pain is spasmy,twisting,crampy, so i know the difference of what ibs pain is like. what i get is constant abdo pain as soon as my bowels wake up after i get up, & the more bowel movements i have the worse it gets.  i have tried amitryptilline before when i had rectal fissures caused by symptoms which helped after a couple of weeks of starting with the pain, but they made me so groggy/woozy the next day i only used them until the fissures healed up with rectogesic ointment in sync.  i recently had amitryptilline 10mg nightly when i had the shingles for nerve pain - again after 2wks of starting it helped, but made me so woozy the next day i stopped a week after the 2nd course of anti virals finished. i dont know if i had gone longer or to a higher dose if this would've helped with my abdo pain, but the grogginess the next day would not help my aim of getting back to work as soon as possible. another lady on here mentioned nortriptyline has gotten control of her ibs - the diarrea, the pain, but i have a feeling that may be the same group of meds as ami, i havent looked it up yet.  i just feel i dont want a life on meds that cover up symptoms, i really want to get to the bottom of it & treat it properly, like if there was crohns in the small bowel, they can give you meds to treat that area. i am already on 5asa's for colitis which are controlling it (normal colonoscopy), my consultant won't try me on immunosuppressants as presently there is no evidence to support that apart from my positive calprotectin stool test.   i will try to get in touch with him, now I've read your reply Sanya. thankyou so much again.  xx

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    • Posted

      You speak from the bottom of my heart!

      I am happy to trial and error meds, but yes, the 'cover up' meds are not really what we like long term. Of course. If they have to do something with e.g. inflammation successfully or we simple have no solution.

      BTW my daughter is on 75mg Amitriptyline before each bedtime! It's meant to make her drowsy enough for a good sleep. It works if the pain is not higher than 7/10, but if it was higher as it is too at times, she is a poor tired bundle in pain.

      75mg sounds a lot compared to 10mg. She is quite tired during the day too. But she also has hardly good sleep. Catch 22.

      For sleep we also trialed expensive Melatonin, the 'natural sleep hormone'. Didn't do anything.

      Somehow I hope they find something on the pillcam. Can you keep us posted please (or privately if too much www)?

      I said to my daughter even, look, even if it was the worst finding, any finding can be tackled at least and if it meant cutting out a part of the small intestine, nothing is worse than the helpless unknown.

      These continuous pains (cramping) are horrid.

      We got a Zomig trial (?) which cannot be taken continuously anyway even for cover up symptoms if it helped a miracle. So I am really not sure about it.

      glutamine is just an essential amino acid, a protein building block, that we need to eat.

      I fall for all kind of traps (?) now, really, desperate to help somehow. Well, I do read about it, some things like colon irrigation do not get my consent.

      Body builders take glutamine for muscle forming.

      Apparently - not sure - it should not only help muscle growth, but also digestive and brain health.? How it can heal ulcers I don't know. I just know, I will trial it since we eat it anyway, just not in those amounts. It's not a medication, it's just an aminoacid.

      So...I feel ok mixing this now into a drink and wait and see, as usual.

      We trial acupuncture and herbal teas (new one is disgustingly bitter). They do something, generally, like the handsweating has stopped, but the cramping is fully uninfluenced by general approaches.

      That's why I think you or my child have something physical going on, some real issue, a visible issue, but the correct imaging not found yet.

      One more thing came into my mind since I still try to push for it:

      MRI angiogram and venogram of the abdomen or wherever it hurts in case pain was some ischaemic issue. (any MRI does not cover blood supply, veins, different protocol. Has to be specific indication and best at a vascular radiologist)

      Something for your consultation in case pill camera is ok? ;-)

      All the best Looloo!

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    • Posted

      Hi Sanya. thankyou so much for your reply again - you are a sweetheart. I'm so sorry for your poor daughter - on 75mg of ami??? she must feel dreadful the next day....

      when  i get to tthe point everyday where i can't tolerate the pain any more i take cocodomol, but it makes me woozy & drowsy. if i take the max 60/1000 on alot of days, i can't even drive so have to be aware of my medical appointments. on a pain scale of 1-10 it only knocks off about 2points, but its better than nothing & does slow my bowels a bit. its no way to live on an ongoing basis, & doesnt relieve the pain enough to get me anywhere near being able to get back to work. i wish there were some more effective painkillers wwithout the drowsy effect.

      the pillcam was fine - i looked like a bus conductor for the day with the data recorder strapped to my side like a small overbody handbag. haven't seen the pill come out but then it'd be hard to see with the consistency/frequency of what i produce daily.!!!

      didnt get a phone call back from my g consultant yesterday-i've phoned his sec again this morning who said he will probably call me this pm - she did give him the message.  i will of course let you know the results.

      i googled the l glutamine - web md had some good reviews from ibs/ibd sufferers, so depending on what my consultant has to t say, i will ask hime about it.

      i'm quite certain this is a bowel issue as the pain gets worse with more bm's & i get diarrea daily, but thankyou for the suggestion about the mri angiogram.

      Thanks again Sanya, i'll be in touch soon.

      xx

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    • Posted

      sorry about the punctuation/added letters here & there, my laptop has a habit of randomly cutting out (dodgy power adaptor) so i typed it as quick as i could(3rd time!!!)

      i also agree with what you said about hoping they find something/having to poss have surgery as it would be  a solution rather than a constant cover up.

      xxx

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    • Posted

      I did not even notice. (I have a cursor, that get's stuck constantly. Ah the technology).

      Really curious about findings.

      Best of luck!

       

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