An introduction and some advice on tests

[MrRoper]

Firstly hello everyone, I have been lurking for a few days here trying to make some sense of my situation and have decided to come out of the closet so to speak and ask a few questions.

Firstly a bit about my situation, I am a 37m who has suffered with abdominal/ digestion issues for 7 years now.

The onset was very sudden and I remember the day it all started. My symptoms are as follows

Constant discomfort on the LLQ with constipation and diarrhoea and huge amounts of gas :eek2: also large amounts of bloating

Intermittent pain on the LRQ with a bubble feeling that accompanies mild nausea and has to be massaged to relieve (lots of gassy churning noise when I massage the area)

No hunger or appetite at all, I have to force myself to eat.

A strange inner feeling of malaise almost like a virus feeling

2 years of chronic hives which only now reappear when cold

Recently I am getting lots of bone pain and lots of pain in my finger tips and under the nails, also I have clubbed fingers but I'm not sure if I have had these all my life or not

Huge fatigue, I basically go to work then sleep in the evening.

About 2st of weight loss

I have had lots of tests that have all come back negative including

Endoscopy
Colonoscopy
SBFT (the first of these they thought they saw inflammation so I was asked in for another one which was clear)

Like so many I have been given the ibs label however nothing has helped for that and they are now thinking this is an anxiety disorder.

I am gluten free now, and that does seem to have helped a little (especially the bloating)
I KNOW something is wrong and I am determined to find out what this is as it has a grip of my life now!

Sorry about the ramble! Onto my questions, as the NHs have left me to my own devices I have decided to throw my own money at this, I have researched the pricing of both the pill-cam and an mre scan and would like to know which people think is the better option to try and get some answers?


Also any other suggestions would be great

Thanks in advance :smile:

 

[Cat-a-Tonic]

Hi Mr. Roper, welcome to the forum and the club. Some of your symptoms jump out at me, particularly the unintentional weight loss and the clubbed fingernails. Those are NOT part of IBS, and clubbed fingernails in particular can be a sign of IBD (Crohn's/colitis). My understanding is that clubbed fingernails can form over years of malnutrition/malabsorption, and with IBS you wouldn't have malabsorption as the intestines are physically normal, but you would with IBD as there is inflammation & scar tissue present and the intestines are not physically normal. So I'm glad you're looking into further testing as it sure doesn't sound like IBS (or an anxiety disorder) to me.

As for the two tests you mentioned, I had the pill cam but not MRE, so I can't speak about both. The pill cam is a very good test to have, although mine came back normal/negative so once again I was at a diagnostic dead end after that one. The pill cam might carry a bit more risk, as there is a very slim chance it will get stuck as it passes through you. I don't know of any risks associated with MRE - it's not like CT scan, there's not radiation involved. If you have any metal implants or anything like that then of course you wouldn't be able to do the MRE, since MRI machines use big magnets, but other than that I don't know of any risks. There is a "Tests for IBD" sub-forum on here, have a look around that part of the forum as you might find more info than we're able to give you here in the Undiagnosed Club.

Good luck with it! Please keep us posted on which test you end up going with, and how it all goes for you. I hope you can get some answers soon!

 

[MrRoper]

Cat, many thanks for the quick reply love the pic as well, I have a soft spot for black cats!!

I will look into the tests on here, the pill cam seems to be a good option however it is very expensive compared to the mre scan, I just don't want to have a test and then question the results straight away if they are negative!

I also agree about the clubbing but i just dont remember when it started! I could have Had It since childhood :s

 

[Cat-a-Tonic]

The pill cam is expensive here too and insurance doesn't always cover it, so I completely understand. It doesn't seem to be totally reliable, either. One of the people who used to post regularly on here had several pill cams - one of them showed a lot of ulcers in her small intestine, but the others came back completely normal. So it's not a 100% accurate test (it came back normal for me too but I definitely wasn't feeling normal at the time I had it done, so I do wonder if mine might have missed something). I have had a regular MRI (of my liver) but not MRE. The MRI itself was an easy test, I didn't have to do prep or drink anything foul. I did have to have IV contrast injected, and I actually had a bad reaction to it, but I was told my reaction was rare.

Anyway, I'm rambling now. I hope you can get some good info about both tests and figure out something that would work both diagnostically and financially for you. Good luck!

 

[tots]

Mr Roper-

Following an earlier flare I started getting hives and welts whenever my skin got cold! It gets pretty bad at times. Its can really be a problem.

Lauren

 

[Gculk]

Woah! Aside from the hives, and the specific severities of your pains I have... A shockingly similar story. My constant pain is lrq, intermittent lower/mid left.

Most everything else is exactly the same except I'm 21 and haven't had time to get malabsorbtion .

Please keep me updated. I'll also send ya if I hear anything 'cause the cases are so similar.

Do you feel almost like you get blocked up on the lower right? That's how I get, that's when I need to almost massage to get the poop out! :lol2:

 

[MrRoper]

Cat,

I just need some closure at the moment, I know something isnt right and im sick of being told to 'live with it' To be honest this isnt a life at the moment!

tots, I had the Hives everyday for two years, they were horrible, but I was told again that I just have to wait for them to go..thank god they did although when its cold I get them back on my hands

Gculk,

that feeling is exactly it, I feel sick when it happens, and can push what feels like air bubbles around and hear stomach noises. after about 20 - 30 mins of massage the discomfort seems to go!

 

[marjory2020]

I could give you my advice on this, but I really think it's better to stick with your doctors for a medical basis for the treatment you pursue. It's hard to get a diagnosis for crohns or colitis or even get a doctor who's knowledgeable about these things, but it's worth it.
I really wish there was a way to incorporate a doctor's voice into these online forums, but since there isn't -- yet! -- I would really try to hunt around as long as you can for as many doc's opinions as possible about your specific set of symptoms.

 

[MrRoper]

Marjory,

Firstly thanks for the response, I suppose another option is to be referred for a private gi consultant for what would be a 3rd opinion? I think i have exhausted my NHS options.

Do any uk'ers know if I can demand another referral? I have already had a second option which dismissed my symptoms as IBS

 

[Astra]

Hiya Mr Roper
and welcome, where about are you in UK?

It makes me angry, but that's a long boring story!!
Your first port of call is the GP who has to comply.
This is a relatively new procedure which is up and running now.

http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx
It's hard, been there, done that, many times, oh the old chesnut aka IBS (It's Bull Shit)
Be assertive, persist and insist, it's your right.
If you go private you'll probably end up with the same consultant and an empty pocket!
Good luck
Joan xxx

 

[MrRoper]

Hi Astra,

I'm in Preston so not far from you really! My issue at the moment is that every consultant I now see, sees my records and tells me to stop worrying and that I have ibs, and my anxiety isn't helping. I understand that this is a bit of a moan but how do you convince these people that you 'know' it's something else!?

My hope with going private was that they wouldnt deny tests as I would be paying but obviously I would be happier not having to pay!!

 

[Astra]

It's very hard, I tried for 15 years!
I got a new GP who took me seriously and when I got my dx I framed it!
I now have an excellent gastro team at Whiston hospital, about 35 mins from you.
All you can hope for is a clean slate, no info in records to compromise you.
Registering with a new GP might help with this.
In the meantime keep a food diary, document everything, start writing times, symptoms etc.
This table will help

http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm

you don't lose weight with IBS
I'm not saying it doesn't exist, but it's an umbrella term that they use when they can't be arsed investigating any further!
xxx

 

[MrRoper]

Many thanks for the advice, I already keep a food diary, however my diet is seriously restricted anyway. Gluten free did make a big difference so I thought this might be coeliac but the improvement was short lived

I am seeing my doctor again in two weeks, and I am going to demand a referal to a dietician, and also try and get referred again to a GI. And if that doesn't work then I will demand a private referal.

One strange thing looking at the chart is that I was mostly constipated then about 6 months ago that has shifted to regular loose-ish bm's ( sorry to much info I know!!)

 

[Astra]

This is my personal opinion.
Symptoms such as diarrhea and constipation can be reduced with diet, but Crohn's is inflammation and I don't believe this can be reduced by changing diet.
Left to it's own devices inflammation = narrowing = strictures = obstruction
That's my personal experience and I nearly died cos of it!
One indication of my obstruction was constipation.
Say for instance if there was inflammation going on and your doc gave you steroids, and it worked, then you haven't got IBS?
good luck with it all, stay strong xx

 

[Rebecca85]

No such thing as TMI on here!

It might be worth you 'starting again' with your GP and going with a different symptom at the front of your mind. For example the bone pain or fingernail clubbing. See what tests they order for those, and they might refer you to a different specialist who will approach your symptoms in a different way.

I was suffering big time with fatigue (napping every afternoon for an hour or more, then sleeping through all night), along with other niggly symptoms like tingly fingers. But whenever I approached my doctor with the fatigue, I got 'it's your Crohn's (even in remission) 'you're anaemic' (but iron tablets didn't help) and 'you're depressed' (well of course I flipping am, have you tried being chronically ill with no answers coming forward?).

When I went to him with the pins and needles in my fingers, I got a referral to a neurologist and an answer at last- and one that explains the fatigue too.

 

[fosterschick]

welcome to the forum , i have found it the most amazing port of inforamtin and support , i feel for you its a hard battle getting diagnosed , i am in a similar boat ibs all the way yet my my GP and bowel nurses are 99 percent certain its crohns but like you the consultants all seam to read the notes and back each other !!!
astra... could i ask is that correct that i could go to a different hospital and would they have access to my notes or would this be a clean slate so to speak ?? .

good luck mr roper keep on with it x

 

[Astra]

Yes it is right but you've got to ask your GP first, he has to comply.
I don't know about records and whether it would be a clean slate or not, I would hope so, otherwise it's futile.
xxx

 

[fosterschick]

thanks astra , my GP is fabby if only he could do all the tests lol , i will defo ask him and i would have thought he would be ok as it was my GP that explained that my consultant was not very happy that i went through PALS to have my wait time to be reduced as it was 23 weeks for an appointment !!! .... thanks ther is hope lol !! xx

 

[dannysmom]

Thanks for sharing your story and please keep us posted. Do you know where on the Xray they thought they saw inflammation? Maybe the MRE is worth trying to get a better look. My son had both (MRE & pillcam) and neither led to a diagnosis. Did your colonoscopy include a biopsy of your terminal ileum? Is your blood work all normal too? (ESR, CRP, thyroid, B12, iron ...)
Good luck!!