New member Undiagnosed

Hi I'm new here so a bit uncertain on how to use the forum, also uncertain what I've actually got.
My story is - I was initially diagnosed with Irritable Bowel Syndrome about 20 years ago - intermittent flares of gut troubles, medication such as mebeverine and hyocine not fully effective but then it's difficult to say with flares and remissions, that otherwise occurred and subsided on their own agenda anyhow.
My bowel movements tend to variate between constipation and diarrhea (never been more than 4 times a day but can be on the bowl for 20 minutes or more passing at a time)
Have however had increasing fatigue and lower back-ache over last year and at the end of last a persistent and stronger flare up with symptoms of passing blood (done that little in the past which I put down to piles but this time was considerably more) and losing first half a stone in weight over some months and then half a stone in very short time (put it back on but have lost it again, which isn't great as there's hardly the pickings of a sparrow on me anyway). This coincided with a very stressful time of life as I am a home carer for elderly parents and my mother has recently completed treatment for lung cancer.
No identifiable food triggers as far as I can ascertain.

I went to see a different general practitioner doctor than the usual one I've seen and he got me to do a stool test and my calprotectin levels came back at 300. He referred me to a GI and they have put me down for a colonscopy and biopsies (which I have not had before). I am due that at the beginning of April. In the months whilst waiting I have been put on Omezaprole for acid reflux, which has helped that side of it a bit, also Hyocine stopped and now Mebeverine - takes edge a bit off cramps but hasn't stopped, but have also had other symptoms which may or may not be related to the bowel problems and perhaps simply 'run down'. Don't know but anyway these include outbreaks of boils, mouth-ulcers, dirty tongue and foul taste in mouth (quite probably bad breath :hallo3: ) dandruff, - All lovely attractive features! ) and even more fatigued - I work as a writer and illustrator when I get chance, but have had to force myself to rest up as I just feel like I have a vampire in my belly (which has got rounder recently) sucking the life out of me.

So basically just feeling fed-up, and mixed-up - I mean, I don't want a bad diagnosis from the colonoscopy but I also don't want to be just sent off as if nothing's wrong as I feel like I might have been for some while with the IBS diagnosis (which may still be the right diagnosis but ... - I just want some proper treatment so I don't feel so wretched so often, and I'm fed up with feeling like I'm moaning on but it's just that I feel like that I'm having to explain myself why I cannot do jobs sometimes and things and that I'm not just being lazy.

Umph!! Guess I just wanted to write some stuff off my chest! :yrolleyes:

Hi and welcome, i am also in the undiagnosed club and my story is similar to yours and has been put down to ibs, i got my galbladder out and its been a nightmare since, anyways just want you to know that i can understand what your going through, i have had endoscopy/colonoscopy, having anothe endoscopy today, all results have been clear so far, hope you get some answers from your tests xx

Hi. Thanks

Yeah, the limbo of waiting to find out and feeling rotten is literally a pain in the nether regions, but having read more of the other threads in the forum, there's many got it a lot rougher than me it sounds, so I shouldn't moan (shouldn't ... but still do a bit :devil: )

Wishing you Very Good Luck with the endoscopy and hope you get answers soon too and the right treatment so that you will feel much better, more of the time. x

Hello and welcome to the forum.

Out of interest has any type of other testing been done previously to find out what was wrong or was it assumed that you had IBS? Do certain foods make your symptoms worse and has your current doc ruled out potential other problems (like SIBO, Coeliac etc)? Have your vitamin levels been tested? Whilst not pleasant a colonoscopy can sometimes really help towards getting a diagnosis so I will be keeping fingers crossed that you will soon be getting some answers, please keep us updated on how you get on.

AB
xx

Hi im also new to this forum, but when I saw your question I had to reply, Literally every single thing you are describing to me screams crohns disease. like you i went undiagnosed for a very long time and part of me was too scared to have the colonoscopy as to be honest i freaked my self out on google etc, I was sad but relieved when I found out I had crohns disease. Its really not as bad as you think and the medication I am on now is only for 3 months and Ive already done one month and am feeling much better almost no symptoms! I had the bleeding, weightloss(no matter what I ate) ,the worst heartburn constantly and was omezparole too, I had haemorroids which were very sore too and either constipated or diarrhea, not to mention the extreme constant fatigue! since being diagnosed with crohns last month after my colonoscopy I actually think it has changed my life for the better I have never been eating better, am at a good weight( compared to what I used to be ,constant takeaways, zero excersise, generally feeling down and tired, drinking alot) and I am feeling much more positive and have a lot more energy now. Like you too i went through an extremely stressfull and hard time last year and at the time i thought I was dealing well with it, untill bam this year i developed all these symptoms and I honestly believe that the stress my body underwent last year took its toll on my body and only came out this year through crohns. they say stress can trigger Crohns for most people and may no appear for months or even a year later! so try and keep yourself out of stressfull and upsetting situations and Im sure even some of your symptoms will subside worry only makes it worse, which I learned the hard way. Even if you dont have crohns grief and stress take a huge toll on your body, far more than we could ever imagine, and all the anger and stress has to be released some way or another.Im not saying by any means I gave myself this disease because they say once you get it its always been in your system and they dont know the cause, but the one thing that certainly triggers it or makes it worse is stress and trauma. hope this helps! but you could not have described me a few months ago better from what you are saying!

Hi there and welcome.

Like Daz, I'm thinking Crohn's disease as well, especially with the elevated fecal calprotectin level. Hopefully it's something more acute but I'm glad you're going in for the colonoscopy soon.

Please keep us updated as to what they find and how you're doing. We're here for you.

Hi and Thank You for the replies - very much appreciated!

I suppose it was just assumed that I had IBS as the symptoms were initially and for the most part 'typical' of that with intermittent flares of constipation and loose movement. I have not had the tests you mentioned AB, only things they kept doing repeatedly was blood tests for anemia, diabetes and overactive thyroid - all of which the results keep coming back fine. Following the quick weight loss and bleeding I got the stool test done as well as bloods and following the faecal calprotectin levels result, I was then referred for further investigation.

I got put on the omeprazole as acid reflux got worse, regurgitation of food was constant - like a cow repeatedly chewing cud! :ylol: I did a short while ago start spitting blood, which obviously was of concern as I thought not both bloody ends literally, I did have a lot of mouth ulcers at the time and thought that may be the cause, but despite not having a sore throat as an indicator, it turns out that I've got laryngitis - which thankfully would account for the blood. The throat issue could apparently however be due to acid irritation from the reflux. The omeprazole hasn't stopped it entirely but has certainly helped.

I've never pinpointed any food as a trigger, though not unexpectedly during a loose or gassy phase, leafy greens and other veg can intensify those symptoms. Cheese makes me vomit, but I really really hate cheese so that's probably the reason as I don't respond negatively to other dairy products. :eek2:
Stress definitely though is a trigger and an intensifier, and much as I want to avoid that, seems to have been searching me out one way or another recently. Been a rough run, and like you Daz, I thought I was coping really well, but bam! when the belly aches and blood and all that kicked in and with that irritating lack of energy, just knocked me for six and I felt on a much lower ebb, but vicious circle - brain dragging down body dragging down brain...
But anyhow, just got to crack on as best as possible and fingers crossed the investigations will lead to more effective treatment and improved feeling of health. It's really good to hear that the diagnosis and treatment has given you a much better quality of life, Daz

Various google searches for questions and symptoms kept bringing me back to various threads on this forum and I hovered outside for a little while, but I'm really pleased that I joined, as it's been good to be able to talk through the stuff with people who have been or are going through the same and in many cases much worse situations and read what others have to say.

Thanks again and I wish you all much healthier and happier times. x

Got my first Colonoscopy tomorrow and three hours and five minutes after my introduction to Picolax ... and five minutes after thinking 'Well, that's not working' ... whoosh and whoah, man that's intense!!! :eek2:
Hmm methinks it's going to be a pretty long night! oo:
Ah well Lord of the Rings is on telly ... :yrolleyes:

Good luck for tomorrow, hope it goes well, dont be disheartened if it comes back normal, mines did and im still undiagnosed, now waiting to see a specialist gi instead of surgeons looking after me!

Ps i felt great for a week after the colonoscopy prep!

Wishing you all the best for today and will be keeping fingers crossed that that the scope will be able to confirm what is going on.

Thanks :smile:
Had the Colonoscopy and it came back 'normal'. I think he did say that there was some inflammation but no signs of any ulceration or other anomalies, so the biopsies are going to be tested for a possible bacterial /viral cause. So mixed feelings - obviously extremely pleased that there were no polyps, tumour or serious disease found but just so hoping that I won't just be cast back into the IBS 'put up or shut up' feeling situation that lingered for too long and that I can either just improve or get better treatment for whatever so I feel and look more 'normal' and not so ill and exhausted so much of the time. Touchwood!

The scope was pretty painful, just had the gas and air, but got through without sedation, Don't think the cameraman was the steadiest driver though, certainly kept clipping on the bends! I told him he wouldn't win any prizes on a carnival wire loop game! :yrolleyes:
But could've been worse.
And I did get to bring home some rather fetching photos of inside my intestine ... lovely shot of the 'roids - my next facebook profile picture I reckon :eek2:

Did the doc say where the inflammation was and how much?

Now that's a point of confusion as the scope guy was foreign and I couldn't always follow his accent and I was just keen to get the hell out of there so didn't clarify, but I will know more when the actual GI gets the scope and bioposy results. But what I think he said was, when I mentioned my fecal calprotectin count and he said that looking at my large intestine, the results could've been higher than 300. Which I obviously took to suggest inflammation as that is what calprotectin indicates. But it is possible that I may have misheard or misunderstood and a proper answer will hopefully come with the GI's summary.

So yes, obvious relief but still unanswered questions- why the bleeding, raised calprotectin and an increase in pains, if the situation in there is IBS?

Also thinking about the procedure now have more questions, I'm wondering why my bladder hurt so much during the C-scope (though it was painful all round at certain parts I thought I was going to pee myself, but didn't as my bladder felt really hammered). I googled to see if the bladder feeling was common and apart from a comment in a thread in this forum I found nothing mentioning that.
It's also occured to me that I thought I'd get pain in my lower back during (which I get a lot of trouble from constantly but had associated to the bowel problems) but all the pain was felt from the front, so I'm starting to wonder more.

Also another thing, though still got a bit discomfort from the procedure and still the lower back ache, my actual guts in another way somehow feel better than they have for a while, and I'm wondering whether it is simply relief of getting the procedure over and there being no signs of malignancy or whether the prep cleaning me out has flushed out some toxicity or something?

When will you be seeing your doc for the biopsy results? How are you feeling today?

I will be notified by post and if the biopsy results don't reveal anything, I've been told that the consultant will not require to see me. I'm not really impressed by that procedure as it would give the impression of the problems being 'imaginary', when they certainly aren't.

I am actually not feeling too bad at all today, still some aches in belly but nothing significant and still achey in bottom of back. But regular enough BM.
Not much energy still but not feeling as badly fatigued as I have even a week or so ago. Be glad if health continues to move in right direction, but don't want to get lulled and caught out by a sudden flare up again, so still want answers and better medication than the IBS tablets or dietary change advice or something.

My mood is fair, obviously very relieved that there was no malignancies found in C-scope.
Bit fed up with having bowels on the brain though! - even my cat has got toilet troubles and has been at the vets for a week getting daily enemas for chronic constipation!! So I've been googling there tonight on catfood dietary advice and stuff!
And last night I kept dreaming, waking up and then dreaming again about C-scopes!! Bizarre. :ymad:

How are you??

I agree that to be given the results in the post is not the way it should be done at all, I always have an appt to see my doc after any test to discuss what has/hasn't been found. I would definitely pursue getting an appt to discuss the results properly in person.

I am doing well thank you, a bit tired but that will be down to my six week old and night feeds lol.

I better wait until I have a clearer idea what's been grumbling my guts before I try other remedies I guess, but thanks Rosemary, I may ask you more details about the ultimate Aloe at a later time. Good to hear it is helping you out a lot

I spoke too soon about feeling better - had a rough night, kept waking up with strong headache, feeling nauseous, a bit confused and drenched in sweat. I wondered though whether I'd cooked and eaten a dodgy prawn last night! Tasted good but the last mouthful was horrible for some reason, but I'd spat it out.
And today got another sudden and intense sweat, with mental confusion, dizziness and nausea. It passed quickly and I have had the same experience in the past several times - always passing quickly (though sometimes may happen a few times in short succession) and then may not happen again for months.
I've mentioned it to doctors a number of times and in association to my guts as I suspected there may be some connection with the feeling of nausea. But they've all just looked at me and said stuff like that sounds odd, but have never suggested a cause, so I've no idea if it is connected.
It is peculiar and unpleasant but thankfully it is quick-passing and does not occur regularly. My sister and her boyfriend witnessed it today and said I suddenly looked 'green around the gills' and the sweat was running off my brow.

Congratulations on the new addition to your family AB and hope you get some good rest!

Please keep us updated on how you get on, when roughly were you supposed to hear from the hospital about the scope results.

Thanks. I'm not sure exactly when I'll get the results but hopefully not too long. If I don't hear soon I'll contact my General Practitioner to chase it up.

Hey, glad your colonoscopy looked clear, mine did too and after i got another upper endoscopy that also came back clear i was told i just have to live with the pain, emmm hell no so i have been reffered for a second opinion, keep pushing you know your body!

Thanks F~
Still waiting on my biopsy results. My GP hasn't got them yet either,
I dunno, my guts have felt better (though not totally right) since the prep, so I'm wondering if some toxin has been flushed out.
If it turns out to still be IBS - then fair enough with that diagnosis, so long as I get more effective medication and also proper answers regarding the bleeding, weight loss and also the continued fatigue. Also some sort of treatment for that. I've put up with sporadic rotten guts and still will, but I cannot afford with current life situation to be so physically and mentally drained so much, so I want that sorted and not just brushed away.

With the bleeding and inflammation found on other testing I really can't see how the docs could say you have IBS, they need to properly explain this symptoms for you.

Still having a runaround to get my biopsy results, I still hadn't heard anything after nearly a month with some chasing up inbetween, so rang the GP surgery again yesterday, no results received so was told to ring the GI's secretary.
So I did, she'd seen the results, wouldn't tell me but said she'd fax them to the GP's (why they hadn't already been sent if they were there all this time, I've no idea. So rang back the GP's surgery - yes results had been faxed over but the doctor hadn't seen yet, ring back tomorrow.
So today I went in person, wasn't given the results but was informed the doctor wants to see me - luckily there had been an appointment cancellation this Friday, otherwise I'd have had had to wait another week to two weeks to get an appointment and find out!
Crazy! What a carry on, I've always supported the NHS (and couldn't afford to go private anyway) but with this and several other unrelated experiences in the last couple of years I've seen a mass of different problems now happening in the British national health service!! :frown:

Anyway!! I should get my results on Friday ... maybe!! :confused2:

What a palaver! I hope the appt Friday will finally get this sorted for you.

Got the results, well sort of - the biopsy results did not show anything.
Which is good and bad - Very good obviously as don't want no nasties; bad in the sense that I'm still not feeling that hot really (though definitely better than I did a few months back) and would still like answers to certain questions.

The doctors are inclined still towards IBS and stress combination, but are at a loss for the bleeding and the high calprotectin count, which they aren't regarding as a false positive, but suggest that the inflammation and bleeding may both have been down to a passing infection or possibly a small tear in the bowel lining. But basically don't know for certain.

I've been prescribed Amitriptyline. It's more commonly used as an anti-depressant, which is handy as I'm feeling pretty fed up now! :yrolleyes:
Hopefully it will do the trick whatever.

Is the blood bright red or darker? Has your small bowel ever been checked out? Have you got a follow up appt to confirm whether things have improved or not?

AB
xx

Hey apac, i'm glad they haven't found any nasties, that is good news, i have been through similar to you, all my scopes are clear , mrcp clear, my surgeon told me i have untreatable ibs and was advised amitriptyline too, but i refused coz i tried it before and it didnt work for me, i have gone for a second oppinion and the new gi is looking towards slow colon transit, it all makes sence, i start on a trial treatment in a few weeks so i'll let you know How i get on?
Hope you dont give up, if your in pain you need answers xx

Did the doctor discuss repeating the calproc test? If he's putting it down to passing inflamation would at least be good to recheck the test to see if that supports that idea.

I can understand your frustration my son (10) has been unwell all year. Only test so far that showed anything Calproc 694, Colonoscopy & Barium Follow Through X Ray normal. Calproc retest four months later was normal so passing infection has been suggested in his case too.

If you've not yet found the Undiagnosed Club section, it's worth checking out http://www.crohnsforum.com/forumdisplay.php?f=75
Lovely bunch of people all in the same limbo land, with some indications that suggest possibly IBD but struggling to get a clear diagnosis of what's wrong.

:ymad: Umph! Wrote out a reply there and somehow deleted it grrr :ymad:

Ok try again...
The blood was bright red so was fresh or originating not far inside. No blood since late December thankfully. It was January I got the Calprotectin test.
No follow up appointment with the GI, No repeat of Calprotectin test suggested.
I've been told to see how the Amitripyline goes and to make another appointment with the GP if I feel no better / worse.

I've only been taking the Amitripyline a couple of days and my guts aren't flaring right up, so too early to say how they'll work there. But for last couple of days I've felt totally zonked out which could be down to the tablets (which when I've got trouble with fatigue, isn't really the best side effect),
Also early days, but as they are generally prescribed as an anti-depressant, they haven't made me feel jolly!!

I'm sorry to hear about your son, Maree, that Calprotectin test result was high!! I hope they find out what's going on there soon and give him the right treatment so he feels much better, poor kid.

Good Luck with the new treatment Franceshop!!
Do please let me know how you get on with it.

Forgot to answer - had small intestine investigated as far as the colonoscopy can get into ileum.

mouth ulcers a clear sign of crohns had them before diagnosed in 2006.

Only got a couple of mouth ulcers now and they're not hurting at all.
Couple of month ago got a sudden and sore gobfull. They were put down to me being 'run-down'

Not been on for a bit so I hope everyone is doing well

Update on my situation. The Amitriptyline seems to be helping my guts, still getting some symptoms some days but a lot lower grade. It's not proving painful to eat or have BMs as was frequently the case before - which on the former is just as well as my appetite has increased upon it. So here's hoping that whether the gut problem is IBS or IBD or viral or bacterial or poison or whatever, that the tablets do the trick and that I'm not being lulled by a remission. Now to get my throat sorted, got a flare of ulcers on the back of my throat that is taking a while to heal. The doctor is diagnosing something viral, but has not been specific as to what, but has suggested tackling it medication free (except for occasional paracetamol if required.

So touchwood!

Will be keeping fingers crossed for you hun.

Thanks, and fingers crossed for you and everyone too

Over a year since I last posted. The amytriptyline I was prescribed for IBS (after my last colonoscopy was not conclusive for anything else) has been doubled in dose twice as initially it seemed to be keeping flares down but then they would break through. Being on that medication though has bulked my weight up, which in my case is no bad thing.
Also on hyoscine butylbromide for cramping (which aren't particularly effective) and omeprazole for GERD.

But for the last couple of months my flares have been increasing in both intensity and regularity and persisting longer. In the last weeks I've had numerous incidences of bloody diarrhea - stopping and starting again, the most persistent bout lasting for four days. Mainly bright red blood but a little darker the last time. Tested negative for salmonella, also no inflammation indicator on blood tests (though both the stool and blood tests were taken during a short remission as waiting time to see a doctor was over two weeks).

Other symptoms - abdominal pains (varying from a mild dull ache to painful cramps to short sharp shooting pains), lower back ache, fatigue, and sometimes weird nausea spells that last a few seconds but consist of mind confusion, heavy sweating and a strange deja vu / sickly feeling. Those odd spells tend to be months apart but when they happen may occur several times that day.
Another thing is that several times when I've flared up, I've also been treated for throat infections occurring at the same time.

No calprotectin tests have been conducted since the first one of nearly 300 over a year ago, but I have again been referred to a hospital specialist with the doctor thinking a high chance of having another colonoscopy conducted (If I do have to have another one I will push for getting a sedative this time as the last one was very painful.) But my initial appointment is not until mid-December. Waiting times are increasing but I cannot afford to go private.
So again in a limbo of not feeling too hot and waiting to see what will happen.