Bowel symptoms & Colonoscopy : Update from... - Behçet's UK

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Bowel symptoms & Colonoscopy

GlastoGal
GlastoGal
21 Replies

Update from previous post after colonoscopy...

I have had bowel symptoms for 25yrs - frequent diarrhoea, cramping and urgency.

I have also had acid reflux and had endoscopy twice. The first time after daily heartburn then vomiting coffee grounds. This showed chronic inflammation, the doctor showed me on the monitor during procedure and told me he believes it was Barratts. However, the biopsies ruled out Barratts and I was diagnosed with GERD and commenced on Esomprazole 40mg daily for chronic inflammation.

The Behçets medications definitely irritate my GI tract - I’ve had abdominal pain and severe diarrhoea on Colchicine and Azathioprine and stopped both.

I commenced Cellcept end of May and within a month I was having regular bright red bleeding with bowel motions/diarrhoea. However, i didn’t have the stomach pain I did with the other drugs so have continued.

I was red flagged for colonoscopy after a Faecal Calprotectin test came back elevated and I had the procedure within 3 months, just on Sunday morning past. I had 2 bleeding motions and some abdominal pain above the belly button on Friday night and I thought this would be beneficial in showing what’s causing the bleeding and diarrhoea but nope.. the colonoscopy was ‘normal’!!

I am left wondering what’s going on as there wasn’t even a haemorrhoid to blame for the bleeding?? The doctor has sent some biopsies off to check for Microscopic Colitis.

I’m not sure what happens now if there will be further testing - surely they have to work out what’s causing the bleeding?!!

It’s a frustrating time having symptoms but normal test results and no confirmed answers!

21 Replies
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lovenothate

How very frustrating for you! I have the same symptoms and put them down to Behçets as the GI symptoms are so common in Behçets a lot of people have the same.

So frustrating for you though not to have a concrete reason. My gastroscopies showed general inflammation in the stomach (gastritis) and a small hiatus hernia responsible for the acid reflux (I’m on Omeprazole 40mg a day and certainly need it). On my colonoscopy and sigmoidoscopy the only issue was a rectal ulcer causing my bloody diarrhoea. Sometimes the blood is shockingly prolific! I do have steroid rectal foam which heals the ulceration up temporarily when needed.

I do hope you get some answers at some point, but please be assured that the symptoms you describe are common in Behçets, even if the doctors aren’t aware of this.

Sending you all the best,

Will.

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gillianTS

Hi GlastoGal

That's good news your test has come back clear they must now consider other tests to try and identify where the blood is coming from, a angiography test should be considered where contrast dye is injected into an artery and X-rays are taken to look for and treat bleeding vessels or other abnormalities. Also other imaging tests such as an abdominal CT scan, this might find the source of the bleed.

How long will it take for the results of the biopsies to get back to you?

Please keep us updated, I have a few issues ongoing at the moment and I am not sure if medication related or not, I have a colonoscopy beginning of next month.

Take care, Gillian

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GlastoGal
GlastoGal
in reply to gillianTS

Hi Gillian

Yes it is a relief that the test is normal as I have a strong family history of Ulcerative Colitis (grandmother, uncles, cousins) and was actually beginning to wonder was that my issue rather than Behçets! Now it seems not that and nothing else visible to explain either!

I assume it will be 2+ weeks for biopsies to come back but they will go to referring consultant so I’m not sure how quickly I’ll receive a review appointment. Everything is a waiting game!

Good luck with your colonoscopy - take the sedation! Hope you get some answers and keep us posted.

Take care, GG

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gillianTS
gillianTS
in reply to GlastoGal

Hi GlastoGal

This is what I do when faced with a waiting game for results from consultants I call their secretaries and explain how concerned and worried I am especially when things may not have improved, did this earlier this year and the consultant called me back in the evening to discuss the situation. I have had several consultants send messages back through secretaries and it works much better for me as I get extremely concerned and worry myself stupid, I now also ask for contact details at my appointments. I complained about reading a poster in rheumatology saying specialist nurse available for a huge list of conditions and not to worry about anything and call them, when I spoke to rheumatologist about support in between appointments she apologised, last week sat in my appointment was a specialist rheumatology nurse who is also going to be available to me too, she gave me her card when I was leaving and said to contact her if I needed to.

Yes I have chosen sedation too.

Take care, Gillian x

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GlastoGal
GlastoGal
in reply to gillianTS

Gillian, I will give it a few weeks for the biopsies to return then ring and check when I will be reviewed, take it from there.

You are so lucky to have a rheumatology specialist nurse available, we currently do not have one in situ I’m not sure if it’s a funding issue or what the problem is, however, from personal experience they would be a Godsend as my experience of shared care generally is that the GP can’t answer my queries and so emails my Rheumatologist but you never get a timely response, especially when acutely unwell!!

I was so sick on Azathioprine and my GP didn’t know whether I should stop or continue and it took a week to get a response.. eventually my Rheumatologist rang me after I emailed him directly and complained about having no one to seek urgent medical advice from in a timely manner!

We just keep on keeping on!!

GG x

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Lorrie

I do feel for you as I'm in the same situation. I've had 3 endoscopies, 2 colonoscopies, a sigmoidoscopy & an ercp & all have come back as normal. They too biopsies & they showed nothing either. After being under the gastro team for 18 months they have now discharged me & said it's all to do with tge Behcéts Disease. Like you I already knew that but would like to know what starts these symptoms off so I can try & avoid further outbreaks. Stay positive & remember you are not alone with the problems this awful disease causes. We are all here to support & encoyrage each other. Best of luck in the future. XX

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GlastoGal
GlastoGal
in reply to Lorrie

Hi Lorrie

They gave you a good check over!! That’s reassuring that you haven’t something else to deal with on top of the Behçets but it doesn’t resolve the symptoms!!

I guess there is a concern that chronic inflammation can lead to cell damage becoming cancerous and when we become complacent that this is just a reaction to Behçets we accept it as normal almost, so long as it doesn’t mask further damage!

When I had my endoscopy and the doctor told me he though I had Barratts he gave me lots of printed information to take home and read. He told me I would have to have lifelong surveillance scopes annually/biannually as I would have a higher risk of developing stomach cancer... then the biopsies came back showing chronic inflammation but NOT Barratts. I was diagnosed as chronic GERD, prescribed Esomprazole for life and DISCHARGED!

I was in total shock! I spoke to my GP and said I’m concerned that one minute they may want to keep a close eye on my inflammation then the next never review me again?! She just said the inflammation was chronic but was ‘repairable’ with the Esomprazole however, Barratts cells have irreversible damage which increases the cells chances or becoming cancerous- so it seems as long as I keep in these tablets my inflammation ‘should’ be controlled!

You can only take the experts at their word or you would dwell and worry yourself (even more) sick!!

Regards, GG

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Lorrie

You really have been given mixed messages. It must be worrying & frustrating. Seems we've both been discharged without a satisfactory solution to the problem. I do hope things improve for you & the symptoms subside. Take care of yourself. XX

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GlastoGal
GlastoGal
in reply to Lorrie

I think the doctor carrying out the endoscopy shouldn’t have told me that without the biopsy results!! However, I can only assume that such a doctor who is carrying out these procedures so regularly has a good idea from the naked eye how chronic the inflammation appears - he showed me it on the monitor compared to the pinky normal surfaces!

Still if he had said nothing I’d have been none the wiser!! X

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Lorrie

I agree it does cause unnecessary concern when they tell you things like that. They showed me the areas of concern on the monitor too. I think we just have to accept that with this disease these added problems are going to rear their ugly heads at times & we have to cope with them as best we can. I must admit I have seriously had enough of cameras being poken into places they shouldn't be & hope we never have to go through the discomfort again in a hurry. All the very best to you in your recovery. XX

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Lara1

Hi GlastoGal,

I too have been suffering with gastro symptoms due to chronic inflammation. I’ve had 2 endoscopies this year and a colonoscopy. The interesting finding of the first endoscopy was that I have eosinophil esophagitis. I had damage of the esophagus with plaques. I’ve had difficulty swallowing for many years so now I finally found out what it was. My gastro figured it was that during the endoscopy but he confirmed the diagnosis by biopsy. He gave me Jorveza, some sort of steroid but a newer drug and quite costly that really helped and on the second biopsy the esophagitis was under control. The second finding was a helicobacter pilori infection which was causing inflammation in my stomach and a lot of acid. Has your gastro checked for this? It took longer to find the right treatment for this bacteria as it was resistant to 2 common antibiotics. I also took Nexium and Pentazole, both very good proton pump inhibitors. So my suggestion is to ask your doctors about these other conditions. My colonoscopy was also negative, I don’t have bleeding, but mostly bloating, pain, colon spasms. My guess would be that you had some sort of ulceration but by the time you got your colonoscopy it was gone.

Good luck with your biopsy results!

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TomTomC

I’ve had all these procedures and all these symptoms since 20’s now late 30’s (diagnosed in 20’s) and continue to, in the end mine turned out to be Behcet’s caused enteric neuropathy caused gastroparesis and Intussusception, when my bowel completely blocks. The gastro Dr’s obviously worried about the Intussusception, as it’s an emergency and mine does it a couple of times a month, did all the other tests to rule out everything else. They were very puzzled. Saw it in MRI barium). Wanted to do surgery. I lived with this for years slowly getting worse, using prednisone regularly, with all the other Behcet’s physical symptoms, but then it started to attack my brain and other nerves and couldn’t talk properly, stopped being able to feel I needed a poo or push, couldn’t empty bladder properly, lost my short term memory was very confused. Personality changed. Couldn’t follow tv show. Even now I have to watch tv with subtitles and sound, I got better but I’m no where near the person I was. This was over a year ago still on 20mgs of Prednisone.

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GlastoGal
GlastoGal
in reply to TomTomC

Hi Tom

Sounds like youve had a really terrible time!!

Thankfully my bowel never gets compacted it’s just diarrhoea most of the time.

You’ve obviously got neuro BD aren’t you on anything combined with your steroids?

Wishing you well in your journey.. I’m off to google these terms (as you do!)

Regards, GG

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TomTomC
TomTomC
in reply to GlastoGal

Yes, I’m about to start plasma exchanges. So fingers crossed that helps. I always had bowel problems with the Behçet’s, diarrhoea and blood and mucus, still do. Agonising cramps.

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Jules6663

My daughter has huge problems with her bowel, she’s had numerous colonoscopy’s. Endoscopys. Capsule test recently, numerous biopsy’s. everything shows as normal.

She’s in constant pain started on mmf a few months ago. Takes 20-40 mg of pred a day which is the only thing which helps. She’s been on every medication on the list in the last 4 years. Including huge amounts of pain killers. I do wonder if the medication makes things worse.

She has just been ok’d to go on Biological drugs by self injection. I’m praying this means other meds can start to come down to see if it helps.

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GlastoGal
GlastoGal
in reply to Jules6663

Hi Jules

That’s really interesting!

The blood with motions has become more common for me since starting MMF.

I’ve been steady on 5mg oral Prednisolone during most of this time.

I’m not sure what the next step will be after the biopsy results, whether they will do further tests etc.

I am going for a private PET Scan soon so hopefully this may offer more information.

I’d be interested to know how your daughter gets on with the biologicals, if it eases her symptoms and pain?!

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Jules6663
Jules6663
in reply to GlastoGal

I’m praying it’s the big answer, we’re lucky she has an amazing neuro he has in my opinion saved her life. But every time she goes on new meds especially the mmf it’s supposed to be the answer and it never is.

The bio’s are getting towards the end of options it’s taken two years for the CofE b’ham to agree to them.

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GlastoGal
GlastoGal
in reply to Jules6663

Jules, I’m still not diagnosed - been working under ‘presumed’ Behçets diagnosis for a year now and other than steroids have not found a drug to reduce the joint pain and fatigue- I’ve had bowel symptoms for years and I’ve just put up with them after a colonoscopy around 8 yrs ago was ‘normal’ and I was discharged without any further testing!!

I’d had occasional oral & genital ulcers for years also but wasn’t til I had the strep throat, erythema nodosum and severe joint pain that it all came together as possibly Behçets.

I’m in Northern Ireland so still haven’t got a referral to CoE as my Rheumatologist wanted to do his own tests and biopsies first.

It’s very frustrating being passed between hospital departments rheumatology, gynae, Ophthalmology, dermatology and gastro/surgical and still have no definite answers or successful drug treatment.

Hopefully I’ll soon get referred to CoE as I believe they start their own investigations to diagnose themselves!

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Jules6663

They CofE units are not that good, we’ve been very frustrated by ours and most people seem to be. They even had a bowel specialist who spoke to Faith as if she was putting it all on. She had an ulcer which the bowel woman said she couldn’t see.

It was after removed by our local hospital and was huge but all testing came back as inconclusive as it always does.

We’re lucky only an hour from Birmingham one, but doubt we’d still be going if further. One lady last time we were there was from Bath and had stayed at a hotel the night before, it was a repeat visit because they had lost her previous blood tests.

It’s a very frustrating time for sure.

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GlastoGal
GlastoGal
in reply to Jules6663

I’m sorry you’ve had a bad experience.. I guess I’m holding onto the belief that the Behçets specialists will be able to tell me one way or another if it’s definitely it right this or something else - there are so many diseases with similar/overlapping symptoms but I’m beginning to realise they generally follow the same drug pathway.

Ive had the same issue with my biopsy Jules, everytime I had an ulcer they couldn’t fit me in on time to have a biopsy! Eventually I had a 2wk old ulcer biopsied (I’ve read the biopsy should be done within the first 72hrs!!)

It’s a battle advocating for yourself and my biggest issue is that I have MANY symptoms but each department are only interested in their speciality and I find the GP doesn’t really know what to do with me in the interim!

Stay positive that we will find relief soon! X

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Niki318

I also experience the same symptoms with my Bechets along with bleeding, I also experience menstrual abnormalities along with the GI abnormalities.

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