Share Facebook
Crohn's Disease Forum » General IBD Discussion » Functional Dyspepsia???


01-03-2013, 06:32 AM   #1
tlc-x
Undiagnosed Teenager
 
tlc-x's Avatar
 
Join Date: Dec 2011
Location: England
Functional Dyspepsia???

Hey friends,

I had a hospital appointment with my specialist today. He diagnosed me with Functional Dyspepsia which is a Functional Bowel Disease.
He said it basically means i'm 'pre crohn's'. They've done loads of tests, including scopes but haven't actually found anything to cause all of my symptoms.

Functional Dyspepsia is where I have all the symptoms of Crohn's but they can't diagnose the Crohn's because they've not got the evidence to diagnose it. He said FD can lead onto Crohn's Disease being diagnose in many years to come when my symptoms are worse than they are now. Can they really get worse?! And when my FD develops into CD, I can have the tests done to diagnose it as CD.

FD means I am showing all the signs and symptoms of inflammation and ulceration, but like I said, they've not found these things yet to be able to diagnose crohn's. I can be in just as much pain as a person with CD, they literally just can't find the ulcers to diagnose. Which really sucks and i'm not sure how I can be in that much pain and vomit all the time and have really bad D and so on, without them being able to find anything??? Confused.


I was just wondering if anyone else had heard of this or been diagnosed with it? Thoughts, opinions?
__________________
~ Tasha.
~ Seventeen years old.
~ South of England
~ All my cousins, aunts, uncles and grandparents have either CD or UC
~ Fifth year of not living my life properly due to the symptoms
~ Endoscopy, colonscopies, MRI scans, ultrasound scans, blood tests, biopsies, urine tests and so on!
~ Been on so many different medications and nothing actually helps
~ Latest diagnosis is 'Functional Dyspepsia'

01-03-2013, 08:17 AM   #2
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
This sounds confusing to me. "Functional" bowel disorders are, like you say, where there are symptoms but no objective evidence of disease - like Irritable Bowel Syndrome. Functional dyspepsia would be where there are symptoms of indigestion but no inflamation or anything else that could cause it has been found.

The bit that confuses me is that you were told it could lead to Crohn's. I've never heard of functional disorders being precursors to any disease - by definition they aren't associated with other diseases. Of course it's possible to be diagnosed with a functional disorder which then turns out to be Crohn's - many people get told they have IBS and later find they have Crohn's, but that's because of a misdiagnosis - of not getting the right tests done - rather than because the disease itself progresses.

So unless you've not been tested enough to know for sure whether you have Crohn's or maybe some other condition, I wouldn't think this means you're going to develop it (and if you do, it wouldn't be connected to having had functional digestive problems previously).

I have heard of some people having awful symptoms on a par with Crohn's but with no disease being found. Are you getting bleeding or fevers or weight loss? These would suggest you have something more going on. But pain and diarrhoea can be really bad without having Crohn's. Wouldn't functional dyspepsia refer to stomach problems like heart burn rather than diarrhoea? Like acid indigestion but without any ulcers? If it's dirrhoea that's functional I would have thought they'd tell you it was Irritable Bowel Syndrome.
In any case, functional problems can be bad, and you deserve to have them taken seriously and have doctors help to get them under control as much as possible.

But my completely unproffesional understanding of this (i.e. I'm just going by what I've read and heard over the years, so don't take my opinions as fact) this seems an odd thing for the specialist to have said - not the diagnosis in itself, but the idea that it could turn into Crohn's later. I hope I've understood correctly that this was what he was saying.
01-03-2013, 08:48 AM   #3
Ihurt
Senior Member
 
Join Date: Mar 2012
Location: United States

My Support Groups:
Funstional dyspepsia effects the upper stomach and gut. I do not think that any doctor can say that having functional dyspepsia is pre-crohns. There are a lot of people who have dyspepsia. All dyspepesia means is that your stomach is not functioning right. It can also mean you have H-pylori as well that can cause dyspepsia.

You can have inflammation with dyspepsia, and it is most often due to the bacteria H-pylori. I am assuming they checked you for this right??? I am also a but confused as I have never heard of functional dyspepsia being a pre-cursor for crohns disease. I honestly think there are A lot of diseases , even inflammatory that can affect the intestines other than crohns disease. The doctors do not know much about these gut diseases really. It is just so complex. For instance, my mom had SEVERE inflammation of her stomach for years. They finally found out she had a rare disease called meinetriers disease of the stomach.

If I were you, I would totally go on a different diet if you already have not. I would focus on eating whole organic foods as much as possible. Eating lean meats like roast chicken or turkey and fish. I mean you obviously will have to play with the diet to see what works for you. What have you tried in terms of helping your dyspepsia??








Hey friends,

I had a hospital appointment with my specialist today. He diagnosed me with Functional Dyspepsia which is a Functional Bowel Disease.
He said it basically means i'm 'pre crohn's'. They've done loads of tests, including scopes but haven't actually found anything to cause all of my symptoms.

Functional Dyspepsia is where I have all the symptoms of Crohn's but they can't diagnose the Crohn's because they've not got the evidence to diagnose it. He said FD can lead onto Crohn's Disease being diagnose in many years to come when my symptoms are worse than they are now. Can they really get worse?! And when my FD develops into CD, I can have the tests done to diagnose it as CD.

FD means I am showing all the signs and symptoms of inflammation and ulceration, but like I said, they've not found these things yet to be able to diagnose crohn's. I can be in just as much pain as a person with CD, they literally just can't find the ulcers to diagnose. Which really sucks and i'm not sure how I can be in that much pain and vomit all the time and have really bad D and so on, without them being able to find anything??? Confused.


I was just wondering if anyone else had heard of this or been diagnosed with it? Thoughts, opinions?
01-03-2013, 10:38 AM   #4
tlc-x
Undiagnosed Teenager
 
tlc-x's Avatar
 
Join Date: Dec 2011
Location: England
I understand what you both have said and do agree with you. It doesn't make sense and I was confused also that it could lead to Crohn's but then I guess that if it "leads" to Crohn's then I probably misdiagnosed as nothing to lead to Crohn's, it's just something on its own. I think he might have said that (just a guess) because all of my cousins, aunts, uncles and g'parents have Crohn's and all started their symptoms in their teens and eventually got diagnosed as adults in their 30s/40s. I'm following all of their patterns.

How do you test for the H-Pylori thing? I don't know if I have or haven't been tested for it.

I am seeing a dietician sometime in the next year (waiting lists!) and hoping they'll be able to help.

I'm most frustrated with the fact that I get told I have one thing, then another and so on and getting told the wrong things and most of all, not being told how to cope with the pain, vomiting, D.

Yes, I get fevers and have had bleeding in the past. No weight loss or gain though (except the damn boobs that won't stop growing!!)

I have tried different diets, cancelling out different foods and drinks. I make sure I exercise as much as I can when i'm not too poorly. I sleep most of the time. I have gotten rid most stress in my life - not all, obviously but as much as I can.
01-03-2013, 01:20 PM   #5
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
That makes a bit more sense about your relatives having it - if perhaps he meant that you may yet develop Crohn's because it's likely to be inheritted in your case, 'though I'm still not sure why he would tie it to your present symptoms if there's no signs of Crohn's yet.

There are medications that could help your symptoms that you could talk to your doctor (maybe a different doctor would be a good idea!) about. There are anti-diarrhoea meds like Immodium (also called loperamide) and Lomotil (also called co-phenotrope). There are anti-nausea meds too. A GP should be able to prescribe these things for you.

It sounds like you're doing the right things, and perhaps the dietician will be helpful. You can always ask your GP to refer you for a second opinion if you haven't found the first specialist helpful.
01-03-2013, 02:28 PM   #6
Ihurt
Senior Member
 
Join Date: Mar 2012
Location: United States

My Support Groups:
To diagnose H-pylori they usually do an upper endoscopy and take a biopsy. H-pylori can cause irritation to the stomach and even ulcers in some people.

If your doctor knows you have a strong family history of Crohns disease then I would think they would look more into it or at least I hope they would. I think they dont like to hand out a diagnosis to easily unless they know for sure you have it. Does anyone in your immediate family have crohns( i.e brothers, sisters, or parents?) I also think that since some of your relatives have crohns it just kind of pre-disposes other family members to any kind of Gut issues. I know my mom had a rare disease called Meinetriers disease and also my mom had mucus colitis as well. I now also am having gut issues so I think it does kind of run in families.

I guess you could get another opinion, but they would just likely run all the tests you have had over again. It seems like this disease is hard to diagnose, I mean they want concrete evidence before they label you with this disease. Likley for insurnace reasons. I mean once you have a diagnosis like that, it can make it impossible to get life insurance and even regular insurance.

I hope you get some answers soon...










I understand what you both have said and do agree with you. It doesn't make sense and I was confused also that it could lead to Crohn's but then I guess that if it "leads" to Crohn's then I probably misdiagnosed as nothing to lead to Crohn's, it's just something on its own. I think he might have said that (just a guess) because all of my cousins, aunts, uncles and g'parents have Crohn's and all started their symptoms in their teens and eventually got diagnosed as adults in their 30s/40s. I'm following all of their patterns.

How do you test for the H-Pylori thing? I don't know if I have or haven't been tested for it.

I am seeing a dietician sometime in the next year (waiting lists!) and hoping they'll be able to help.

I'm most frustrated with the fact that I get told I have one thing, then another and so on and getting told the wrong things and most of all, not being told how to cope with the pain, vomiting, D.

Yes, I get fevers and have had bleeding in the past. No weight loss or gain though (except the damn boobs that won't stop growing!!)

I have tried different diets, cancelling out different foods and drinks. I make sure I exercise as much as I can when i'm not too poorly. I sleep most of the time. I have gotten rid most stress in my life - not all, obviously but as much as I can.
01-03-2013, 03:28 PM   #7
tlc-x
Undiagnosed Teenager
 
tlc-x's Avatar
 
Join Date: Dec 2011
Location: England
Gosh, another opinion? I've lost count of the amount of doctors and specialists i've seen in the past five years of being ill! This specialist is the best one i've had. I'd have to go to a hospital in another part of the country to see someone else because i've seen all the specialists in my county/town.

My sister has shown problems with her stomach in the past, but nothing really ever came about that because she just couldn't be bothered to deal with it and brushed it off. I guess it wasn't that bad then? I'm not sure. My brother, well, i've watched him eat undercooked meat and he was fine - if that was me, i'd be ill for a month! My dad does get a bad stomach occasionally but also has never done anything about it and my mum is fine, just like everyone else, she gets the odd day of a bad tummy. Why am I the only one in my immediate family?!

Take immodium and have some antisickness tablets but it's never enough to stop the pain or help any of the symptoms. I've been on so many different medications too. I feel like i'm basically just being diagnosed off by doctors in hope that i'll accept the diagnosis and suddenly get better.
01-04-2013, 05:28 AM   #8
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
I go to London (other side of the country for me) to see specialists (not for Crohn's, for another, far rarer, more complex illness). People come from all over Europe to go to London hospitals. You most likely won't be referred to anywhere like that as it's only for the most rare conditions, but people do travel all sorts of differences to see specialists.

I've seen more specialists than I can count (I have multiple medical conditions). If you get new or worsening symptoms that can justify a new opinion. Maybe you could ask the specialist to explain a bit more what he meant? Will you have a follow up appointment with him?

Re. insurance - medical insurance doesn't matter in this country. You will have to pay more for travel insurance if you ever go abroad though, and you may have problems if you ever want private insurance rather than use the NHS. I think it's better to have a diagnosis, and doctors don't tend to shy away from making diagnoses official here.

I think there are a lot of people who have a frustrating time getting dianosed - I did, it took years. You have to make sure your expectations aren't too high - it's likely that the diagnostic process will be drawn out, and there's always the possibility that treatment might not be available for your condition, or there may be treatment that can help but not cure. (Which will probably be the case if you do have Crohn's.) I think it helps to try to find a balance between focussing on your illness - seeing doctors, trying different meds and therapies, maybe researching for yourself if you find that useful - and making sure you focus on other areas of your life too - don't put everything else on hold.
01-04-2013, 08:30 AM   #9
xX_LittleMissValentine_Xx
Moderator
 
xX_LittleMissValentine_Xx's Avatar
 
Join Date: May 2009
Location: Reading, United Kingdom

My Support Groups:
Ah, I feel your frustration! I don't have much advice or knowledge in terms of your diagnosis but just wanted to say sorry its been so hard for you and you still don't feel like you have the answers. I hope the dietitian will be helpful for you x x
__________________
~Holly~
Diagnosed with CD March 08 at 17
Currently on:
Infliximab

Past:
Pentasa
Prednisolone
Azathioprine

My blog: http://hollysbloggyness.blogspot.com/
Reply

Crohn's Disease Forum » General IBD Discussion » Functional Dyspepsia???
Thread Tools


All times are GMT -5. The time now is 03:14 AM.
Copyright 2006-2017 Crohnsforum.com