Could I have chrons

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Over the past 20yrs I've had constant dioreaha. In the past 2 years I've had six operations on anal fistula's. I've also got more than a few common symptoms of chrons. Today I went for a colononscpy the doctor said the bowel and colon were clear. He took 6 biopsies which I will have to wait on the results for, I'm just wondering if anyone else have had the same issues and what the outcome was. Many thanks in advance for any help

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  • Posted

    I am sorry to hear of your health problems. But I cannot believe that that you have suffered so long and they have not come up with a diagnosis. I attend the local chrohns and colitis society meetings and am suprising how different sufferes symptoms are.Hope that you soon find out what the problem is.  I thake cholestyramine for my dioreaha and it works wonders perhaps your doctor could try prescribing this, if so I hope it helps
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    • Posted

      Thanks so much for your reply. My gp has not prescribed me anything. He has left it all to the surgeon who is not convinced it's chrons. I will just have to wait and see the results from the biopsies. One other question , sorry if I'm a pain. I keep getting a funny smell coming from my breathe recently and the side of my mouth cracks as if it's a cold sore which keeps returning as well. Could this be linked. Thanks again in advance

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  • Posted

    I certainly have not experienced any of these symptoms myself, but one thing I have learnt over the years is that all suffers experiece different symptoms, I believe that I have heard that there are differnt strains of crohns.which is why people get different symptoms.  I cannot believe that you have been suffering this long and they have not come up with a result yet. I hope that you soon find out so they can start treating it  Don't hesitate contact me again if I can give you some help, certainly let me know how you get on and when they confirm what it is you are suffering from. Take care.

     

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    • Posted

      Thanks again for your help. I will certainly let you know how I get on. It may be a few weeks as I'm not due back into hospital for my next fistula op until August

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  • Posted

    Hi Lesley. If crohns is suspected - they should also look at your small intestine as crohns can affect that too. I think there is a capsule endoscopy or a certain kind of ct/mri scan to look at it. xx
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    • Posted

      Thanks for your reply also. I just feel as if I'm banging my head against a brick wall. If it's not chrons I just wish they would diagnose what it is .

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  • Posted

    Hi Lesley, I've been "loose" for ~ 15 years, maybe more.

    More recently, I've had a lot of blood in stools, etc, and was also discovered to be anemic (8.0 mg), which is pretty low.

    1 month ago I had a Colonocopy and Endoscopy, with Biopsy  - nothing found.

    Literally today, I had an MRI on the small bowel/small intestine, as LooLoo refers to. Obviously no results yet. I may also have a Pillcam to swallow, pending what's found from the MRI.

    I've also lost ~ 14lbs in 2 1/2 months, but i think this is a combination of worry, reducing sugar/yeast, and potentially malabsorbtion of nutrients. Best of luck and please keep us updated.

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    • Posted

      Thanks for your reply. I see its not just me that's banging there head against a wall. Hope you get your situation sorted soon. I will post any updates I get .

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    • Posted

      Hi Chris/Lesley. I was diagnosed (after much banging my head against brick wall too) with colitis in nov 12. I am currently flaring again, & have a colonoscopy this afternoon. This flare is different to other ones I've had - no visible blood, but widespread pain which is worse before/during/after bowel movements. They have never looked at my small intestine before as they diagnosed colitis, then later bile acid malaborption too(which i take colestyramine sachets for-works wonders for largely controlling diarrea). I also have ibs(d) controlled by quality liquid probiotic daily & diet adjustment, & fructose malabsorption. The latter 2 conditions were only diagnosed beginning of 2015, as colitis cleared up but still had symptoms. nightmare trying to get properly diagnosed & appropriately treated for everything i have. In the back of my mind I am concerned they may find crohns(due to difference in symptoms mentioned above with this flare & no repsonse to max colitis meds last 4.5wks) when they scope me today - i am going to ask them to scope me as far down as poss - colonoscopy goes down to beginning of small intestine. going forward depening on what they find today I may well ask (if not suggested by them) for a capsule endoscopy or mri to look at small intestine. I do know they can tell colitis from crohns by looking at biopsies, but still think small intestine should be looked at with chronic conditions in the bowel to pinpoint exactly diagnosis. The bowel prep for colonoscopy has been terrible as it has been before-2 doses of moviprep one last night, 2nd this morning - last night watery diarrea about 30x for about 6hrs, this morning been going since 6.45am about 20x, just starting to settle down now at 8.55am - not as bad as last night. I only had 3 milky coffees & a cheese sandwich yesterday & nothing since!!! I don't know what's worse the prep or the scope!!! Please both of you, let me know how you get on with your diagnosis's. Take care. xxx

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    • Posted

      How did your colonoscopy go today??. I can sympathise with you about the prep for it . The drinks are disgusting ???? we might as well just sit on the toilet and drink them . Hope everything is OK with you. Please keep me updated to as it's nice to speak to someone in the same boat. Take care xx

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    • Posted

      Hi Lesley. thankyou for asking how I am. I'm tired & tender inside today, & had enough last couple of days with the prep & scope, trying to give myself a break for 24hrs from it all before i look at everything & try & decide what i need to next/who to get onto medically etc. I will post you properly mon or tues when i feel a bit better & have thought about it all more. xxx

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    • Posted

      Hi Lesley. Feeling bit better now after the weekends events! Need to hoover, but going to leave it another day as still a bit tender inside with all the poking about, biopsies taken, & they removed a small sessile polyp in the ascending colon. little bit worried about this as sessile ones especially in the ascending colon have more"nasty" potential in them, but it was less than 1cm(bigger than 1cm higher risk). have to wait for biopsies 2-3wks now. the report said "otherwise quiscent mucosal appearances throughout" which i am VERY surprised at given my ongoing symptoms/pain - again have to wait for biopsies to see if any inflammation/changes that cannot be seen by naked eye. I am going to ask for mri on small bowel as a few things now lead me to think this should be looked at. 1)when i did the prep for colonoscopy, i had not eaten for 29hrs, & had some 60+ bowel movements of watery diarrea with the 2 doses of moviprep, yet when they scoped me, they had to flush the terminal ileum with water as there was still faeces there obscuring view!!! What??? (terminal ileum being where small bowel meets colon). 2) from the 2nd bm of day onwards if its not diarrea, stools are very regularly thinner & pain with bm's regularly increases from 2nd bm onwards (making me think stool from further back - thinner??) 3)this is the 2nd polyp i have had removed within 3.5yrs - 1st one hyperplastic polyp in left colon, this one in right & sessile polyp. what if there is a polyp(s) in small bowel - never looked at small bowel? 4)no visible blood with this flare as previously with colitis (more common not to have blood in crohns) 5) rectum not really affected with this flare as previously with colitis(more common not to affect rectum in crohns) 6) elevated caplprotetin level in stool test 7)still on colestyramine sachets for bile acid malabsorption so not that causing diarrea/abdo & back pain. Sorry this is lengthy, I have to push gastro dept all the time to get progress, so have to analyse things. What do you think Lesley? xxx

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  • Posted

    I have replied to you twice, my screen goes black and I loose the novella I have written to you, sooooo frustrating!!! I too have been sick since 2001 and have been diagnosed with fibromyalgia along with bladder disease called IC for short. My chief complaint all these years other than the pain have been severe gastro symptoms. I have had my gallbladder removed and had surgery to repair a hiatal hernia, I thot my problems were solved then I continued to get sicker and sicker loosing 60 lbs in 5 months this year. I have had 4 colon/endoscopes since 2012 with zero results. My blood test revealed in April I was slightly anemic and had a slightly high WBC count. In the past I have had anemia so bad I had to have a blood transfusion and never really got any answers as to why or where this blood loss was going. I've also had a history of low vitamin d and b12, high inflammation markers and high liver enzymes. Because my sy,proms mimic Fibro and IC no one has taken me seriously and keep screaming IBS. I recently discovered feces coming from my vagina, it happens randomly. I think I now have urine coming from my rectum. I live in the southern United States so might I say we are a little "behind" in the medical community than the rest of the USA and I have to travel 3 hours just to see a specialist who if I'm lucky will give me 10 minutes of their time even with what I described above there is much more to tell just not enuf room on this page. I have also had barium enema at this stage n none of my test reveal anything they can't even find the fistula, I know they r doubting my claims, but I know I have wiped and pulled feces from vagina (so disgusting) and of course I freaked because I had no idea this could happen to a person, now with this new discovery, and all the symptoms I have that mimic crohns,  and test (other than blood work) that show nothing I can't get any answers. My question to you is how did you discover your fistula, I am assuming they found yours because you said rectal right? I am at the end of my rope, I am in so much pain and have so much fatigue I've hardly even left my home in 2 years, I've about given up any hope I will ever know, anything you can offer or anyone following this please reply, I have posted on this forum and received no replys. I am living on pop sickles n crackers I don't know what else it's going to take to get some answers other than dying of starvation,mthanks Kelly 

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    • Posted

      This is all so confusing to me so if I understand you right you are having all of the symptoms of Crohn's disease you have a fistula so what is your understanding of what has caused your fistula to happen. My gynecologist and my md both told me my kind of fistula called a rectovaginal fistula can only be caused by one thing or occur when these things go wrong and that is at childbirth (my boys r 24 and 27) so this is not my case, hysterectomy gone wrong (mine was 12 years ago and that went fine) or IBD now take that factor in I have all the symptoms of Crohn's n blood test levels abnormal I can't get a diagnosis of Crohn's and start getting some treatment b4 it's too late!!! Do you have any idea what has caused yours?

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