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Misdiagnosis/answers/advice

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RTurner23

Hi everyone.
Hopefully I can get some advice, any would be really appreciated as i’m so fed up.
I was diagnosed with what they say is IBS in July last year. I had a colonoscopy done in June of this year due to new symptoms- constant blood (dark/maroon/sometimes almost black), in stools, weight loss, severe stomach pain. They took 4 biopsies all came back normal, as did the scope- surgeon found no inflammation. So I was then referred to an IBS nurse who I’ve been seeing regularly every 3 months. I have had no relief. Still feeling constantly awful. Also experiencing pain on my left side mostly now. I had some banding of internal hemmerhoids done in October, but I am STILL getting very dark blood in my stools. Still losing weight and over the past 4/5 months my energy levels have been horrendous I am so tired all the time. My IBS nurse says when I see her on the 14th she’ll arrange for me to get a flexi sigmoidoscopy done if I’m still having symptoms. I was just wondering if anyone might be able to shed some light on what might be going on? I’m 23, female and live in Scotland UK. Many thanks!!
 
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eleanor_rigby

Location
Cheshire, England, United Kingdom
RTurner23 said:
Hi everyone.
Hopefully I can get some advice, any would be really appreciated as i’m so fed up.
I was diagnosed with what they say is IBS in July last year. I had a colonoscopy done in June of this year due to new symptoms- constant blood (dark/maroon/sometimes almost black), in stools, weight loss, severe stomach pain. They took 4 biopsies all came back normal, as did the scope- surgeon found no inflammation. So I was then referred to an IBS nurse who I’ve been seeing regularly every 3 months. I have had no relief. Still feeling constantly awful. Also experiencing pain on my left side mostly now. I had some banding of internal hemmerhoids done in October, but I am STILL getting very dark blood in my stools. Still losing weight and over the past 4/5 months my energy levels have been horrendous I am so tired all the time. My IBS nurse says when I see her on the 14th she’ll arrange for me to get a flexi sigmoidoscopy done if I’m still having symptoms. I was just wondering if anyone might be able to shed some light on what might be going on? I’m 23, female and live in Scotland UK. Many thanks!!
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I would probably say there’s no point getting a flexi sigmoidoscopy. If the blood was coming from the lower end of your colon it would be bright red. Plus you have already had a negative colonoscopy. My advice:

1. Get blood tests done - check your iron levels and check to see if your blood is clotting properly
2. Do stool sample fecal calproctectin test.
3. Do an upper endoscopy to check the upper part of your small intestine - dark red blood will usually be coming from high up in the GI tract - from the stomach or upper small intestine. I should also add that dark/black blood in stool is considered a medical emergency and I would consider getting medical advice about this.
4. Do an MRI with contrast to get a full view of your small bowel
5. If all the above fail to show anything get a pill cam
 
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crohnsinct

Well-known member
^ THAT! Agree whole heartedly.

The fecal calprotectin test is an easy test. I am not familiar with your healthcare system and how hard it might be to get the test. It is an excellent test that measures inflammation specific to the GI tract. It helps differentiate between organic causes (IBD, etc) vs. functional causes (IBS, gastroparesis etc).

A colonoscopy can only view the large intestine and a very small part of thhe ileum. IBD can affect your entire GI tract from mouth to anus. There is a lot that can't be visually inspected with a colonoscopy so definitely pursue upper endoscopy and imaging as even an upper endoscopy does not visualize much of the small bowel. An upper endoscopy can also screen for Celiac although I don't think you bleed with Celiac but I have no experience there so don't take my word.

Good Luck! The road to dx is long for many. Just keep pushing until you have answers and a plan.
 
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RTurner23

I’ve had bloods done around 3 months ago- only thing that showed up was low folic acid. Furthermore, my GP practice has tried to carry out a decal calprotectin test but are pretty terrible so didn’t do it properly and have since said they don’t have the facilities to carry it out.
I should say I think what I thought was black blood was actually undigested food (my bad), again today though their was a lot of bright red/slight maroon coloured blood. I am assuming she wants to do flexi sigmoidoscopy due to pain in my left side. I don’t think the NHS in the UK would do a camera pill endoscopy tbh.
 
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RTurner23

Thank you very much for your reply. I’ve sent a reply to another user about the above. Been tested for celiac twice and came back negative both times. I am just frustrated now as I think their is something more than just ‘IBS’, I am not saying I want it to be IBD obviously it I just do not feel right at all.
 
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eleanor_rigby

Location
Cheshire, England, United Kingdom
Your GP shouldn’t be carrying out the fecal calproctectin test. You hand the sample into the GP and they transport it to the hospital and the hospital’s pathology lab and will analyse it. You could bypass the GP surgery entirely and hand the sample in at the hospital. I think you need maybe a chat with a different GP at the surgery for clarification regarding this. It’s a very cheap and useful test. Your IBS nurse would also be able to sort out you doing one I’m sure.

Yes a pill cam is unlikely to be funded on the NHS hence why it is a last resort when everything else is negative. But the NHS will be able to sort you out with an upper endoscopy and MRI with contrast. Especially if you get an abnormal fecal calproctectin result.
 
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RTurner23

My Fecal Calprotectin test was carried out by a hospital, and the results were not understood at all by my GP surgery- they did not have the knowledge/experience to understand the results and I went to 3 different doctors. So that was useless. I will probably now wait to see my IBS nurse on the 14th of December to sort everything out.
 
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eleanor_rigby

Location
Cheshire, England, United Kingdom
OK that is totally baffling. Well you can request from the hospital what number was your fecal calproctectin and post on here and we can tell you what it means! It’s as simple as that not sure what your GPS difficulty was. Maybe bring this up to your IBS nurse as if there is blood in your stool as you say this will be captured by the fecal calproctectin test and can rule out IBS immediately and also should ensure a referral to a Consultant gastroenterologist who will carry out the above tests I mentioned.

Just to advise as well the bowel can cause referred pain. So although you have pain on your left hand side, the cause of the pain may be somewhere else. For example although my disease is where my appendix used to be, when I am in severe pain it is in the centre of my abdomen between my ribs. Just something to bare in mind as a possibility.
 
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RTurner23

Thanks so much. I really really appreciate all your advice, I am hoping my nurse will give me some answers when I see her in a few weeks. I am just wanting to get better. This has been going on for too long. It’s so frustrating at the age of 23. 😴😐
 
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eleanor_rigby

Location
Cheshire, England, United Kingdom
No problem! It’s good to be armed with knowledge so you don’t get dismissed. Just to advise as well your IBS nurse should be able to look on the system and see what number your fecal calproctectin resul was. If it is above 50 it’s abnormal and you can say to her that rules out IBS.
 
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RTurner23

Sorry folks for the gross information, but I’ve got awful diorrehea this morning with some blackish bits in it- would this be blood or not? I am not sure what to do now. Feeling pretty cold/feverish too, and again pain in my left side.
 
Sophabulous

Sophabulous

RTurner23 said:
Phoned NHS 24, got an appointment at out of hours at 3:15pm (UK time). Will see how it goes from there.
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Hi there

Sorry to hear what you’ve been going through. I had quite similar symptoms to you and I was diagnosed (finally) at 24 so I can completely relate to what you’re going through!

I think you did exactly the right thing getting an out of hours appointment, you definitely need to be seen by someone else. It sounds like your GP surgery isn’t the best which doesn’t help ☹

Let us know how you got on x
 
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RTurner23

Hey. That’s me out! Right. He did a rectal exam as well as a tummy exam. Their was no blood on examination which is good, nothing to worry about. BUT my rectum and tummy are very tender. Their are STILL 5 internal hemmerhoids so they could be where the blood is coming from. I told him Laura wants me to get a flexi sigmoidoscopy, and he says that is DEFINITELY necessary. He also wants me to get my bloods done, and urine sample on Monday as they did one there and it showed infection. He is writing to my GP to advise all this, and will push for me to get a scope done again. He says it’s shocking this is still going on and is so sorry for me. He says I can’t go back to work till I’m better, so he’s going to ask the GP to give me a sick line. So relieved I am FINALLY getting listened to.
 
my little penguin

my little penguin

Moderator
Staff member
A flex sig is not a full scope
It only looks at the very bottom of the GI tract and not much at that
Flex sig only looks at the rectum and sigmoid colon
It doesn’t look at ascending /descending /transverse colons or Terminal ileum / caecum
Which is where most Crohns is found
It’s very rarely in the rectum

Please push for a full colonoscopy upper and lower
Plus MRE imaging /pill cam


Good luck
 
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eleanor_rigby

Location
Cheshire, England, United Kingdom
MLP - she has had a colonoscopy which was negative.
Yes a flex sigmoidoscopy is exactly the same procedure as a colonoscopy except it doesn’t go as far through your bowel. So a colonoscopy is superior as it will look at everything a flex sigmoidoscopy looks at plus the rest of your colon and terminal ileum as well. So you have already had the areas checked with the colonoscopy, the flex sigmoidoscopy would basically just be a repeat procedure just not as in depth. I guess it’s worthwhile in case anything was missed but then why not just do the full colonoscopy again if that is the concern? Sometimes I think medical professionals are just at a loss and say random things. The NHS money would be better spent on an MRE or upper endoscopy - or indeed any NEW/DIFFERENT test for this lady now. Don’t give up keep pushing for answers!!
 
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RTurner23

Thanks so much everyone. Totally agree with you Eleanor_Rigby. I will see what happens on Monday now when I visit my GP. Although the out of hours doctor did assure me he’d write to them to push for a flex sigmoidoscopy and blood tests as well as urine sample. Hoping my GP surgery FINALLY takes me seriously.
 
Jabee

Jabee

I really think you need to get your small bowel imaged. I have small bowel crohn’s and it shows up on upper endoscopy or a CTE. Colonoscopies show virtually nothing. It sounds like a lot more than IBS is going on, especially with low folic acid. They can also do an upper GI x-ray series with small bowel follow through. That can pick up any narrowing of the small intestine. It always mystifies me that doctors don’t look at the whole intestine before they rule out crohn’s. Did the after-hours doc put you on antibiotics for a possible UTI? Gosh I hope your doctors start to help you.
 
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RTurner23

Hi Jabee. No he didn’t put me on antibiotics as he says they can make bowel issues (such as diarrhoea like I’ve been having), worse. I think he wants me to see GP about that and see exactly what it is then take it from there. I’m hoping my GP might suggest an upper endoscopy too as well as Flexi Sigmoidoscopy. Oh they are a useless surgery. Have been palming me off with ‘just IBS’ for past 18 months. :(
 
Sophabulous

Sophabulous

I agree with Jabee wholeheartedly.

Hopefully with today’s developments they will start to take you more seriously, let us know how it goes x
 
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RTurner23

Thanks everyone. Will keep you all updated 😊 I am relieved he’s given me (going to arrange for my GP) to give me a sick line for work till I get myself sorted. I work in a care Home, so my job is quite stressful as well as being physically demanding at times too which I cannot handle atm with how low my energy levels are. X
 
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RTurner23

Hi everyone. So, went to my GP the day. Due to the computer system being down she was unable to see the letter that the pout of hours doctor sent! 😡 Again, I had to explain everything to her and she was not very understanding. She said to get bloods done, which I could not do due to computer system being down it meant apparently nurse couldn’t determine what bloods she needed to do!! I then had to hand in a stool sample. And as for the sick line I’ve to self certificate for the first 7 days (it’s the law in the UK). She said to me ‘your colonoscopy and biopsies were clear so it’s obviously not ulcerative colitis’ (I thought you could still have a clear colonoscopy with UC). So she is not writing to the surgeons for me to get a flexi sigmoidoscopy, instead she is writing to a gastroenterologist... is this good news or not? So fed up of this now. 😞😐😴
 
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RTurner23

Also got woken up at 2am with severe severe stomach pain, if they are going to tell me ‘that’s just IBS’, I am going to crack up.
 
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RTurner23

I doubt it, my GP just said ‘I know you’re uncomfortable and I’ll do my referral but because you’re not suspected of possibly having cancer it could be a few months wait but I’ll do my best’.
 
Jabee

Jabee

My wonderful GI recently re-located his practice and semi-retired. I called one of the docs who took over his practice at the hospital where he used to be located for a prescription refill and was told she wouldn’t prescribe without an office visit and her first opening is July 2018! Seriously? Fortunately I can get my GP to prescribe it for me, but I’m having some issues and need to get an endoscopy. I laughed out loud! For you it’s definitely not just frustrating but could mean you just get sicker. For UC a colonoscopy will show the inflammation, but not necessarily with crohn’s. Can you get an urgent referral rather than a general one? Or can you switch GPs to one who listens better? So sorry to hear this.
 
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RTurner23

Hi Jabee. It’s so frustrating isn’t it? I know exactly what you’re going through. Unfortunately I don’t think I can get an urgent referral as they don’t think my case is serious enough. Honestly. Because my investigations (biopsies, rectal exam, colonoscopy), was all clear they will not urgently refer me as ‘I’m not at risk of cancer’. There’s actually been no more blood in my stools (that I can see, although I know you can get some that isn’t visible to the naked eye). I’m guessing that’s why they want a stool sample to do a feccal occult test. Sorry for the tmi. I would change GP but since I got diagnosed with ‘IBS’ 18 months ago, every GP at that surgery has palmed me off. Like I say, to get woken up at 2am from a peaceful sleep through extreme pain is not normal to me for a 23 year old!
 
Scipio

Scipio

Well-known member
Location
San Diego
Jabee said:
My wonderful GI recently re-located his practice and semi-retired. I called one of the docs who took over his practice at the hospital where he used to be located for a prescription refill and was told she wouldn’t prescribe without an office visit and her first opening is July 2018!
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That's ridiculous! She can't accept an appointment any sooner than 8 months from now? I've never heard of such a thing. Time to dump that doc and move to one that will actually see you in a medically-reasonable timeframe.
 
Jabee

Jabee

Scipio:

I’m seriously considering it. The only issue is that I would have to switch hospitals and all my other doctors are at that hospital (my insurance isn’t hospital based or anything, but my records are there). I did see someone else—once—who decided (without any tests) that I didn’t have celiac disease or crohn’s which would be nice, but scopes and blood tests have confirmed both! Continuity of care is pretty important for chronic issues, I think. I actually asked the assistant with whom I was speaking what I should do in case of an emergency and she said I should call the on-call GI, which doesn’t exactly work during office hours! I finally decided to think the whole thing was hysterical rather than get annoyed. Good thing my sense of humor kicked in!
 
my little penguin

my little penguin

Moderator
Staff member
Jabee
Continuity of care is one thing
But not getting an appt for 8 months is ridiculous
Without seeing your GI then your not getting much care at all

Hope you find a new GI soon
 
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