My story

Hi all,
I am new to the site , and I just wanted to share my story in case anyone is going through the same problems. I currently do not have a definitive diagnosis, and like many others have been in this limbo land for about a year now .
It all started with upper left pain under the ribs; sharp , hard to pin point and would literally have a mind of its own . Sometimes would hurt after eating , sometimes not , etc. Drs initially said too much stomach acid . So prescribed medication for that , which didn't really do much . Long story short , got worse and more persistent, so was referred to specialist who ordered endoscopy. This came back completely normal , still more pain . Other symptoms at this point were weird; bouts of sickness and migraines , splinter hemmorages on my fingers , all very non specific.
So was sent for ct scan and colonoscopy; again all completely fine . Diagnosed with ibs and maybe inflammation of the ribs (sorry can't remember wat it's called).
At this stage case closed for me , it must had been ibs after all , still in pain but not too bad.
Out drinking on a bank holiday Sunday as you do woke up next morning ,
Pale , faint , and everytime I went for a bowel movement there was dark purple blood there. The pain in the same spot it's always been in , was intense. this went on all day so I took a trip a n e. Admitted,and diagnosed with gastratitis ( although no scans were done )and was told to come back in three weeks for an endoscopy.
Still in pain after three weeks so at this point was sure the test would show somthing ; of course absolutely fine .
Either gastratitis had healed or it wasn't that ; you can imagine how I felt about this .
This is probably the six month mark where things started going down hill really. Chronic diarrhoea; episodes of blood stools , lasting weeks at time;severe sharp pain again in the upper left area.
Dr ordered stool test(came back abnormal )and also with bloody stools etc said it more than likely IBD, n probably crohns. so referd back to specialist .
He agreed with gp and has now sent me for a capsule endoscopy as he thinks my small intestine is most likely where the trouble is .
I read a lot of posts about other people's struggles to get a diagnoses : I meen does this sound familiar , does it really take over a year to get a diagnosis?
At the moment I'm off work , currently having a bad flare up , the pains seemed to have evolved and I now have really severe mid/lower abdo pain that is quite frankly horrific and waking me up in the night.
Sorry for the long post ; any advice or just general thoughts would be appreciated as I'm at the point now I don't know whether it's crohns, small bowel crowns that's spread further down , or somthing worse.
Anyway thanks in advance .

Hello and welcome to the forum,

I'm so sorry to read you are going through all of this but I'm really glad you've found us, everyone here is friendly and supportive and we are all in the same boat.

Unfortunately your story is not an uncommon one, it very often takes a while to get a diagnosis with IBD as there are so many other illnesses that mimic the symptoms and it can often be passed off as a tummy bug or IBS. I personally went without a diagnosis for almost 5 full years so I understand how frustrating and scary this can be. I know at times it can feel like no one believes you and that maybe its all in your head or you're exaggerating the severity but everyone here understands how traumatic these illnesses can be and how unpredictable each day is. You're not alone now.

The Pill cam should help to see any inflammation in your small bowel, although it can vary from person to person with regards to how much they actually see. They usually work up until about the top of the large bowel so it shows the part of the intestine that can't be looked at by endoscopy or colonoscopy. Don't be disheartened if it does come back clear as it could just be it stopped working before it got to the point where your inflammation starts, so if that does happen then request a colonoscopy or some imaging suck as an MRI scan to look at the large bowel too.

With regards to the nausea, are you on any anti-sickness? I have been taking Metaclopramide for the last 3 years and it has worked well for me, I have just been switched to Cyclizine and ondansetron is also an option but usually the last one to try so you could ask your GP to give you something to help this. I also drink peppermint tea and eat ginger biscuits to help when feeling sick and this helps a little. Are you on painkillers at all? During flare ups I have been told to take Paracetamol 4 times a day and then can add in something stronger as and when needed. Stay away from NSAIDs like Aspirin or Ibprophen. I personally have used Cocodamol (not at the same time as paracetamol), plain Codine, Tramadol and morphine (not all at the same time) depending on the degree of my pain, these are all fine as long as you watch out for constipation and use them sparingly. For the cramping you could ask to try buscopan or alverine citrate, peppermint is also really good for this.

Make sure you are getting regular blood tests to check that you are not becomming nutrient deficient, particularly in iron if you are regularly loosing blood. I would also recommend keeping a diary of what you eat and your symptoms so that you can see if there is any correlation between certain foods and increases in pain etc. Keep a note of any changes in your symptoms such as an increase in pain and keep a pad handy to write down any questions as and when you think of them so that when you next see your doctor you can make the most of the appointment.

I hope this helps somewhat, are all in this together so please don't be embarrassed and remember there is no such thing as a stupid question so please ask away if you have any further questions or concerns. We may not have the answer to everything but we will at the very least be able to share our own experiences and be a shoulder to lean on.

Thank you for the advice and insightful information it's very much appreciated. I actually just take paracetamol ATM , as anything stronger either makes me blocked or causes cramps .
I've been offered to start the steroid treatment but am unwilling/anxious to begin as I don't want to jeopardise any further testing I'm bout to have . Last thing I want is it to work , n the tests again don't reveal anything .the consultant also agrees on this but obviously if it gets really bad then il have to start .It really is a catch 22 situation. Ultimately from my experience and reading others and yours , this is very complicated and notoriously hard disease to diagnose. It's crazy to think you went 5 years before your diagnosis, that must had been really tuff; this is the hardest part for me not knowing .
I have taken note of your tips and ideas for keeping food diaries , etc , this somthing I'm gunna have to plan n get the wife to organise for me I think lol .
I'm also going to try the peppermint tea out ; as you can imagine coffee doesn't seem to agree with me that much these days and from going black no sugar twice a morning to completely having to stop I really do need to find a replacement.
Again thanks for the info

In my case my diagnosis was complicated by me having other health issues but yes it was a very frustrating time for me and it's more common than many realise I think.

In terms of pain relief, if you feel you do need something stronger then your GP can prescribe some gentle laxatives like laxido to help keep your stool (poop) soft and easy to pass, so keep that in mind if the pain is getting out of hand.

I agree with the above. Also, there is a section in here called Undiagnosed Support Group or something similar.

Hi guys-
I didn't know whether to start a new thread or continue on this one as it includes my history but there's somthing that I'm unable to stop thinking about and also research doesn't really seem to shed any light on it . My pain as always been upper left . It all started upper left . Endoscopy clear.When I was admitted to hospital with a lot of pain and blood , was told gastratitis ( without any sort of tests) , endoscopy three weeks later , all clear .
If it was either gastratitis or a stomach ulcer surely either/both endoscopys would had shown something . I mean three weeks after a bleeding stomach would surely still be sore ? I was in pain that day too....both times perfectly normal /and very healthy looking even I think I was told.
My doctor agrees and thinks it's my small bowel ; hence the suspected crohns diagnoses. Plus my abnormal stool test and my bloody Cohn like flares for past months, so I it does sound correct.
I just want to find out people's opinion on wether there is still a chance it could still be my stomach and it's somehow been missed both times .
I don't know whether this is just the anxiety, but I'm always concerned my pain is too high .
Thanks for any input or advice

There is a chance it could be they stomach. The bloody

There is a chance it could be the stomach. The blood would have me lean more towards IBD.

Thanks ronroush! Yeh I'm leaning more towards this also so is consultant and gp. I've never been sick with any blood either which I'm told is common with bleeding ustomach ulcers ??

Not sure about the stomach ulcers but I do know it is common with IBD.

Hi Wilbur,

I too am very new to this, just being diagnosed with Crohn's in the Terminal Ileum a couple of months ago.

FWIW I am attributing my upper-left side pain to trapped wind in the upper-left Colon as it feels much too far from my TI and I have read that small-bowel Crohn's often comes with more trapped wind in the Colon.

I agree with your strategy of trying to manage without meds until you have had all possible tests done. The last thing you want to do is hide the problem.

Good luck.

Welcome to the forum Wilbur
The one thing I've truly learned from a couple decades with this illness is it effects everybody differently and it can take along time to get real answers and once you get those answers that doesn't mean everything's gonna be fine.I hope you soon find some relief.

Thanks guys for the info and support very appreciated .

Hi , just wanted to give an update . I actually had the capsule endoscopy on Monday which to be honest wasn't too bad .
Luckily, ( don't know if that's the right word at all lol) I was bleeding that morning , so im very optimistic they should see where it's coming from . I handed the Device back into the hospital on Tuesday afternoon, and this morning , Thursday , my original consultants secretary has rang me and told me the dr wants to see me on monday ?
Which means the different consultant who was in charge of this procedure had looked at it ,probably on the Wednesday , and then contacted my on going consultant that same day .??
To be honest I'm really anxious about this ; through the past year of tests etc, I've learned to be patient as things take time and they are frankly , very slow. So to hear back this quick am I within right to be worried here?
Any input would appreciated.
Thanks

Wilbur007 said:

Hi , just wanted to give an update . I actually had the capsule endoscopy on Monday which to be honest wasn't too bad .
Luckily, ( don't know if that's the right word at all lol) I was bleeding that morning , so im very optimistic they should see where it's coming from . I handed the Device back into the hospital on Tuesday afternoon, and this morning , Thursday , my original consultants secretary has rang me and told me the dr wants to see me on monday ?
Which means the different consultant who was in charge of this procedure had looked at it ,probably on the Wednesday , and then contacted my on going consultant that same day .??
To be honest I'm really anxious about this ; through the past year of tests etc, I've learned to be patient as things take time and they are frankly , very slow. So to hear back this quick am I within right to be worried here?
Any input would appreciated.
Thanks

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I don't have an answer but I wish you the best.

Hi all, just an update , capsule endoscopy results were clear ...sigh mixed feelings from this . But with positive stool test and blood consultant still thinks it could be ibd . He also sais possibly ibs still , although let's be fair I don't think he really knows. Is putting me in for a colonoscopy again ; my question to you all is if I already had a clear colonoscopy before would this one be any different( although I hadn't started bleeding at that point). I'm starting to feel at a loss now , so many tests all clear , maybe I just have to accept it n move on . On one hand I'm reassured it's nothing too serious on the other I've been in pain for a year and passing blood for 6 monthes. A diagnosis would sort a lot of things out like work , explaining it to everyone etc ; sigh.... I meen does this really sound like ibs , I just don't buy it...

I am sorry they are having so much trouble with a diagnosis. Keep pushing until you get an answer. Maybe they haven't got to the area of the intestines where the problem is. I know a couple of years ago they told me that besides Crohns I had IBS. I was still having symptoms so they repeated the same test and found out it was the Crohns after all.

I never got any proper diagnosis either. Still I have plenty of medical records that show something is wrong with me. I hope you get an answer but don't hold your breath. I think most of the time the doctors are guessing just like us.

All the best and wishing you well,

cmack

Thanks guys!
Another question I'm trying endlessly to search on the internet; if I've had a clear endoscopy, a clear pill cam and I go onto have another clear colonoscopy, can this still be some form of IBD. Can the consultant diagnose me on high calprotectin test, chronic blood in stool and chronic pain in abdomin alone.

I have talked to many people before who went through all the tests available and came up clean. There was still clearly some kind of bowel disease though. Some people are eventually diagnosed with Crohn's on symptoms alone. Ultimately the norm is the doctor runs you through the whole battery of tests first and then has to make a judgment call.

cmack