Awful stomach pains

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I have had bad stomach pains, blood in the toilet bowl when pooping, chronic anal fissures and low b12 and folate levels for years now. I had a colonoscopy 2 years ago which showed a polyp, a 1cm ulcer and inflamation by my ileum, but I was told it was not bad enough to be classed as crohns disease....... Now I have to have another colonoscopy, when the fissures have healed. But in the meantime I am still in a lot of pain and discomfort, has anybody else had to go through a few colonoscopies before they got diagnosed with IBD? Thanks in advance 😊

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17 Replies

  • Posted

    Sooo sorry to hear about those symptoms. I've never had blood in the toilet. I've had fissures befor that had to be repaired surgically though. Wow , such pain. But the blood in the toilet would scare me to death , I think. I wish so much I had a suggestion for you but I don't other than another colonoscopy. So I'm gonna stay tuned to see who else has some info or sugestions for you.
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    • Posted

      ;-) re BLOOD.

      As scary as it looks, it can be just a normal wound due to hard stool passing through and ripping the mucosa open.

      I, even my teenaged daughter, had blood in the toilet from anus (not other reason). Nothing to be scared of, especially if it is light red. First thought is: fissures, haemorrhoids, especially if hard stool. Then further investigation goes on, because yes, it can be another reason.

      Just to prepare you, in case you ever have maybe some light red blood in the toilet on top of your stool, nothing to freak out straight away.

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  • Posted

    So sorry to hear.

    You are actually already diagnosed with ulcer and inflammation (polyp removed I guess) and yes, another ileocolonoscopy will show, if changes happened.

    The follow up is absolutely necessary so or so. Biopsies need to be taken.

    As to why your changes 2 years ago were not named IBD and treated with according medications, is maybe due to the fact, that there are inflammations and ulcers, that are not falling into the class of IBD, the macroscopic look and microscopic histology not fitting into IBD?

    Do you take NSAID painkillers? Did your stool get testetd for bacteria/parasites (PCR preferred)? Did you get tested for celiac?

    Could it be backwash ileitis? (fecal matter going back into ileum, which it shouldn't due to a valve) Do you have arthritis/some systemic disease, that can actually also effect GI?

    Have you had a gastroscopy? (due to low VitB12 level, it needs an 'instrinsic' factor in stomach to absorb VitB12. Of course it can also be malabsorbtion in the intestine. Rheumatoid med does it, too.)

    You mentioned 'ileum' location...Crohn can have multiple locations....

    What about a capsule endoscopy (to check whole small intestine, not just small distance after cecum into ileum)? Or are strictures feared?

    What about an MRI enterography? Please be direct and ask.

    I am not a gastroenterologist, but they are, with training and experience, they should be able to answer any question.

    Good, good luck.

    Yes, I think, it can take a second colonoscopy for IBD diagnose (or any diagnose that brings you closer to a working treatment), but no, I did not go through that personally, my daughter is.

    Ask for the histological report, let it be explained to you. Ask for further imaging and testing in order to get the correct treatment whatever it is.

    You need an answer and treatment for your bad abdominal pain. 'It's not IBD' is not good enough at that stage, is it. And who knows, maybe it is.

    All the best!!! Keeping fingers and toes crossed!

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  • Posted

    I've had 4, it's crazy, but you do get there, I was diagnosed with diverticular, however have to have colonoscopy repeated as a lot of mucus was found so could also be colitis x
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  • Posted

    Hi Imogen. So sorry to hear you longstanding agony. I know personally how painful fissures can be, I have colitis. It can take a long time to get diagnosed, often symptoms blamed on IBS. NHS gastroenterology services are also notoriously overwhelmed with demand, so tests, follow ups etc can make diagnosis lengthy. You have to do alot of pushing things along, especially if your off work ( I nearly lost my job spring last year because of how long it took to get treated following test after test etc). Did they give you any treatment/meds after your last colonoscopy? I can't believe they've left you since with nothing to help!!! xxx
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    • Posted

      Thumbs up I would give your answer (is 'vote' the same?)

      I wondered the same:

      they see inflammation in the ileum (ileitis) and an ulcer and leave her untreated, not even a trial of something.

      If ileitis was not due to Crohn (I assume they did take a biopsie and had a good microscopic look), why would they not give further clues, hence treatments, for all the many other reasons that ileitis can be caused.? 

      I really hope that this time they get to the bottom of cause of her macroscopic existent problems and find a treatment.

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    • Posted

      Yes Sanya, I can't believe they haven't followed up from Imogen's colonoscopy results 2yrs ago - we'll wait & see her reply... The longer things are left untreated with IBD the more damage can occur. I have to say your replies are fantastic -factual & detailed - are you are nurse? I have a complicated spectrum of colitis, ibs-d, bile acid malabsorption, & fructose malabsorption. Having another colonoscopy in 10days as colitis flaring again presently, but bit worried in back of my mind poss crohns, as no blood this time, more widespread lower abdo pain, & not responding to max 5asa's last 4wks. Previous flares have had more rectal involvement & blood.No steroids yet , as they need biopsies 1st. xx
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    • Posted

      medical scientist, 11 year work experience in very different fields (but home-stay mum currently with very sick child-hence I take the time to be on internet currently- and I had my own share of tumors and other health problems; experience teaches you a lot, too. I hardly know what docs know, but I think I can read results and med texts bit easier. My native language is not English, so please excuse mistakes and expressions)
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    • Posted

      Dear Looloo,

      Oh my, you do have a complicated spectrum of colitis

      and you just taught me something: bile acid malabsorption (BAM)

      - I had to read about how to diagnose BAM (didn't do this in lab) and different forms (1,2,3).

      I love NCBI pages btw to read about. "The majority of these (BAM) patients will respond to bile acid sequestrants and budesonide, a steroid with high first-pass metabolism in the liver, can help both conditions [Bajor et al.2006b; Ung et al. 2000a]"

      Budesonide seems to be a steroid with the least systemic side effects, working topical, doesn't go that much into blood stream.

      Has this been offered to you for treating BAM?

      (5-asa treats inflammation, from Crohn to inflammed anus/rectum, doesn't it? But you are not diagnosed with any IBD yet, right? You get this for other e.g. rectal = blood, inflammation? The oral 5-asa version seems to be a bit harder on system in order to get asa not absorbed, but working topically in gut unless it can be put in as suppository locally if only locally around rectum needed, it won't reach any other area. These additions for oral ingestion seem to be responsible for side effects: like abdominal pain (?).

      I am sure you are an absolute expert in your condition and treatment.

      But from the few sentences I have a knot in my brain now, because

      a) you are diagnosed with BAM and fructose malabsorbtion

      b) not treated for BAM (?)/ fructose can be avoided

      With these two diagnoses I would not even call it IBS-d, since BAM is the reason for symptoms, right?

      People with BAM often have microscopic colitis, also explaining the diarrhea, but need to address BAM in treatment rather than colitis.

      That's where I have a real knot now of how 5-asa should help you with BAM.

      ?? But what do I know.

      Fingers crossed for you, your colonoscopy and its biopsie findings! 

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    • Posted

      Hi Sanya, many thanks for your detailed reply. To give you a better picture:

      1) colitis diagnosed nov 2012. on 5asa's & courses of oral steroids for several flares. no steroids at present flare as have impending colonoscopy in about 10 days.

      2)ibs-d diagnosed when colitis in remission. managed well by diet adjustment in sync with gastro dietician, quality liquid probiotic symp..ve taken daily.

      3)Bam diagnosed early 2015 as same symptoms as colitis, but colitis "clinicically" in remission (biopsies). well controlled with colestyramine sachets twice daily.

      4)fructose malabsorption diagnosed early 2015 well controlled with diet adjustment in sync with gastro dietician.

      diet adjustment includes no fibre like brown bread,cereal, seeds. hardly any veg/no fruit as most comes out as it goes in-can't digest plus the fructose problem. I tackle diet insufficiencies with a multivit plus a ester c vit c capsule (easy on digestive system).

      I also have another episode (5th since 2002) of suspected kidney stones at present having passed 7 small fragments/gravel since end of may & am under urology at present with ct scan next week.

      My colitis has been flaring again since mid may, but I am slightly worried about crohns in back of my mind now, as I have had no blood with this flare as previously, but it is not responding to max dose of 5asa's almost 4wks (was on a maint dose of 3.75g, now on 6.75g last 4wks) & the pain is more widespread in the lower half of abdomen, but not so much the rectum(as it has previously). 60/500 cocodomol 2 or 3 times daily only takes the edge of pain & does help slow my bowels down. This is how I'm managing it until they do my colonoscopy, when I should know more afterwards. my faecal calprotectin was raised at 280, it has not been abnormally raised before even when flaring - strange..... Thankyou for your input sanya. Your daughter is very lucky to have a diligent mum like you to be on the ball with her medical matters. xx

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    • Posted

      Thank you!

      Ah good, you are treated with sequestration for BAM.

      Once there is a reason found (you have 2 - BAM and fructose malabsorption), doesn't the IBS diagnose falls since IBS is a 'diagnose' when nothing like BAM is found actually, to give symptoms a name, peace of mind, that nothing happens if nothing is treated.

      BAM is one of the differential diagnoses for similar symtoms like IBS. Hence if BAM positive it's not IBS-d anymore?

      Enlighten me please as why you are labelled 'IBS-d' still even BAM perfectly explains these symptoms and needs treatment, additionally to malabsorbtion.

      To the other symptoms and calprotectin positive (now 5asa makes perfect sense), I am really feeling for you since it must be so much pain and seems such a complex picture.

      A colonoscopy is really indicated. Hard to wait for it, isn't it.

      Has a capsule endoscopy ever been done to have a look into the whole small intestine?

      I hope all will be good and treatable. (Maybe even with Budesonide additionally?)

      Best of wishes!!!

       

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    • Posted

      Thankyou Sanya. The ibs-d is still there according to my gastroenterologist & gastro dietician as if I eat certain foods they cause diarrea/do not digest properly(even while on the colestyramine) & waves (not constant) of abdominal spasming/cramping(typical ibs symptoms). Along with process of elimination/trial/gastro dietician I have reached a "knowing" status of my diet along with quality probiotic to control the ibs. The reason I am worried about poss crohns now is no response to 5asa's max, no visible blood, much less rectal involvement (all more common in crohns than colitis). I though the same as you actually regarding the small intestine - they have never looked at it - only the colon. When I go for my colonoscopy next sat, I will ask them to go as far down as possible to look at the beginning of the small intestine, & depending on what they find take it from there going forward(eg ask for capusle endo). Since I was diagnosed in nov 12, I have always found myself having to push gastro dept for looking at different possibilities,& like many people was initially just fobbed off with ibs only. Since my problems began, I've had to endure months of pain, time off work nearly resulting in me losing my beloved job. At one point I had to make an informal complaint through the PALS service of the hospital(patient advisory liaison service) for so many reasons including incorrect recording of biopsies!! I am not a confrontational person but had to do something. Since that my relationship with my gastro consultant & processes have been much better. I think they often lose sight of what a patient is going through;gravity of ongoing symptoms & effect on basic life. xxx

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    • Posted

      Oh yes, you are so right

      and I am so sorry, you have the need to push and ask and keep recordings (as we do too for that very reason).

      An ileocolonoscopy should aways be state of the art, if possible.

      Still, it does not cover the whole small intestine. Why I am so annoying with that is, that a friend of mine was diagnosed 'IBS', actually brushed off as IBS, colonoscopy normal, calprotectin normal, stool normal, breath tests neg, until after years one had the brilliant idea of capsule endoscopy...and she had multiple, very tiny areas of IBD in the small intestine, with strictures. ...and all was clear from then on.

       

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    • Posted

      It's a fairly young examination

      with the disadvantage of NO BIOPSIES,

      no real time continuous view with possibility of staying at a spot or going back to, 

      and far more time intensive = costly. (Not to speak of a capsule that has to be thrown away and has to possibility of getting stuck in very rare cases)

      It's an addition,

      but cannot replace conventional ileocolonoscopy or gastroscopy; good for small intestine and only that one, all other parts are much better off with conventional gastro-colonoscopy.

      It depends on findings and symptoms, if a capsule is indicated.

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    • Posted

      Hi Sanya/Portacrean. I think when IBD is suspected, it should be standard to colonoscopy for colon & capsule to check small intestine too. I was told my IBD nurse capsule only looks at small intestine (I've read somewhere the battery runs out before it passes completely through colon which is why it only looks at small intestine). They should check both at the start in case of small intestine involvement regardless of colonoscopy being good or bad for the very reasons Sanya said above. damage in small intestine could be ongoing in small intestine if not looked at because they just concentrate on colon largely. Actually writing this makes more inclined to push for capsule endo if they do not suggest it themselves.....

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