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Old 03-25-2011, 02:02 PM   #1
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Unhappy Undiagnosed (Digestive?) Disorder

Hello there, I am 18 and new to this site. I hope to maybe find some advice or support from your lovely community. My story is quite a long one and rather complicated. I dont want to bore you all with the details right now, but if anyone would like to know more then I will post at a later stage.

It all started when I was a young child, about 5 years old. Tummy pains, sickness. They would come and go. I spent alot of time in the medical room during first and middle school. I had my last bought of vomiting when I was about 13 (still not sure what caused it) and I was very poorly for about a week afterwards.

Then a bit over 3 years ago things started to get worse. I have always been a low weight (either on or below the underweight line) but I lost about 6kg. This was due to nausea, loss of appetite, and abdominal pain which caused a fear of food. But since last year I have been forcing myself to eat as not to lose anymore weight. But as far as my weight goes it is around the 37kg mark right now. Not good!


Here are my symptoms I can think of right now:
- Upper Abdominal Pain (sore/burning/aching/*****ling/'stitch' feeling/or just hurting!)
- Back Pain (Seems to be related to the abdominal pain)
- Nausea
- Constipation (Not typical though)
- Poorly Formed very soft stools
- General Lower Abdominal Pain
- General Abdominal Discomfort
- Big Abdominal Bloating
- Tiredness/Tire Really Easily
- Feeling of Fullness Quickly Whilst Eating
- Mouth/Tongue Ulcers
- Hair loss
- Cold Hands and Feet that go Blue/Purple/Blotchy
- Really Sensitive to Heat/Cold
- Leg/Feet/Toe/Hand/Tongue Cramps
- General Body Aching
- Food Intolerance (Milk, and maybe another?)
- Some Chest Pains
- Sometimes food comes back into throat (NO VOMITING)
- Sometimes have shortness of breath/Find it hard to breathe
- Sometimes Upper Lip has Blue Tinge
- Osteoporosis

And More Recently (In the past couple of weeks)
- Sore Throat
- Uncontrollable Burp After Everything I Eat or Drink (Even Water)
- Feeling Dizzy
- Oily Film on Water after bowel movement

FOOD MAKES ABDOMINAL PROBLEMS WORSE

Up until now no one has believed me. I have been shurgged off that all my problems are entirely nutritional and if I 'just ate' then everything would be fine. (As I said loooong story) But I do eat, I am eating, alot. And it hurts like hell! It is definitely not making any of these symptoms go away.
I recently (beginning of March) moved doctors surgeries and asked for a private referral to a gastroenterologist (the 4th one I've seen). I had my first appointment with her yesterday and she was lovely! Listened to me, my symptoms and seems to want to help. Horay!! She sent me off for an ultrasound today of my upper abdomen, but I think it was pretty normal I am just waiting for the report now. And not sure what will happen next.
(I have had an endoscopy and colonoscopy last year July 2010. It only showed mild chronic gastritis and non specific inflammation).

In the meantime though, the pain and feeling so ill is becoming unbearable. And I'm not sure how much longer I can force myself to eat this high amount of food. The pain is bad, as is the nausea and with no appetite its becoming very hard. But I cant afford to lose any weight!!

As you can imagine I am becoming desperate and to the point where I am getting so scared that I'm not actually going to wake up in the morning. Which is horrible. I just feel that ill.

Last edited by Staryel; 03-25-2011 at 02:03 PM.

 
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Old 03-26-2011, 02:46 AM   #2
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Re: Undiagnosed (Digestive?) Disorder

Hi Staryel
You poor thing, you seem to be going through a lot. I too have had ongoing nausea, it is very draining. Mine started at the end lof November and continued up until very recently. I am still undergoing tests to find out what the cause was. Up until recently it was my only symptom but in the last few weeks I get these strange little "niggles" in my upper abdomin, never that painful nor do they last any length of time but they freak me out as they are now accompained with very loose stools. I had a CT scan on thursday past so Im awaiting the results, my ultrasound was all clear and I am awaiting an endescope. I believe I may now need a colonscopy too. Just wondering did you ever get tested for h-pylori? I did back in January and proved positive which the doctor assumed was the cause of my nausea. I underwent the treatment but the nausea continued for a few months. Although my nausea is now gone, it did come back last week for a few days so I know it can rear its head at any time! I cut out caffeine and alcohol, I was certain cutting out the cafeeine helped eliminate my nausea but then I was proven wrong last week when it came back. I think I too will have gastris and now wondering if I have maybe something going on in my colon, hopefully just IBS. I hope you get the answers you need, I too had to go down the private route to get some answers from a specialists, I am due my 2nd follow up appointment next week, however not sure how effective he has been so far, as to date he dismisses my condition as not serious and possibly just functional dyspepsia - which is having the symptoms of an ulcer without the actual ulcer. The loos BM and little pains in upper tummy have only started since my 1st meeting with him so will be interesting to see what he makes of my new symptoms. I am still waiting on the CT results, the waiting is a nitemare!
Hope you get some answers with your new gastro lady, goodluck

 
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Staryel (03-26-2011)
Old 03-26-2011, 08:36 AM   #3
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Re: Undiagnosed (Digestive?) Disorder

Hey, thanks for your reply, I really appreciate it

Sounds like you've been through some tough stuff too! Nausea is nasty in it's own right and alot of people dont seem to understand that. They dont realize how much of a big deal it can be.
I did have the Helicobacter pylori test last June and it came back negative. It was also negative in the Biopsies in July when I had my endoscopy and colonoscopy. Strange that you still had some nausea even when being treated for that.
Goodluck with your 2nd visit. Make sure you tell the dr your new symptoms and dont let him fob you off!! Goodluck with the results also. What were you having tested, do you know? Is there anything specific they think might be wrong? I know, the waiting is stupidly ridiculous!! Why these things have to take so long, I really dont know!

Woke up this morning feeling very sore in my upper abdomen. I'm guessing from the painful ultrasound yesterday. Managed some lunch this afternoon, but I got some nasty sharp pains in my upper right abdomen afterwards. It seems to have subsided for the time being. Just left with general abdominal and back pains atm....

 
Old 03-26-2011, 09:06 AM   #4
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Re: Undiagnosed (Digestive?) Disorder

Hi There your symptoms sound very much like mine.
I was treated for H. Pylori two years ago. Told it was gone last year. Had endoscopys, colonoscopys, c.t scan and others, Revealed small Hiatus Hernia/Diverticulitis (no surgery required).
Now I have all your symptoms, especially Gas/Bloating, feel like I will burst during the day. Nausea is common place everyday.
I eat well, enjoy my food, but have lost almost a stone in weight, don't know where its gone to.
I see my consultant in Apr because of weight loss/loose bowel.
I hope you get some answer to your condition, me too.
At the moment I have just started Aloe-Vera Juice. PPIs don't help.
So many people seem to have Stomach Problems.
Have you considered CANDIDA, Ive had it in my mouth before, (NASTY) thing. I wish you the best. Solofelix.

 
Old 03-26-2011, 07:52 PM   #5
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Re: Undiagnosed (Digestive?) Disorder

Some, but not all, of your symptoms sound a lot like what I suffered with for years, which was gallstones. I wish you health & wellness.

 
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Old 03-27-2011, 12:38 AM   #6
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Re: Undiagnosed (Digestive?) Disorder

Had Ultrasound to check Gall Bladder (no problem ) there.
Keep Well,
Solofelix

 
Old 03-27-2011, 11:13 AM   #7
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Re: Undiagnosed (Digestive?) Disorder

Thanks again for the replies. It's nice to be able to talk to people who understand and/or are going through the same kind of things

solofelix - Sounds like you have been through alot too! Goodluck with finding answers, I hope you get the diagnosis and treatment you need. No, PPIs dont seem to help me either.... Aloe-Vera juice, I think we had some of that a while ago, but I was too scared to try any incase it made me worse. How have you been finding it? No I haven't really thought about Candida in that past, thanks for mentioning it, I'll have a read up. Goodluck and all the best.

HelgaInMO- the ultrasound didnt seem to show any gallstones in ym gallbladder, but thank you anyway All the best to you too!!

Hmm, so I have been thinking back to my ultrasound and I feel rather stupid. I found the whole thing very painful, but I never once said Ouch whilst in there! I was scared that if I moved the results might be messed up. Now I'm thinking if I had told the doctor I was in pain perhaps it would have been significant? And then since then I have been rather sore in my upper abdomen. As if it didnt hurt enough already!!
Argh, its just me stressing over nothing probably....

Thanks everyone for taking the time to read

 
Old 03-27-2011, 02:39 PM   #8
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Re: Undiagnosed (Digestive?) Disorder

I've had digestive disorders for as long as I can remember - worsening in the last 10 or 12 years.
I had a few negative ultrasounds for gallstones, but later had a different procedure (can't remember the name??). It's a nuclear medicine type scan that determines if the gallbladder is functioning properly.

It turns out, mine wasn't. I had my gall bladder removed, hoping that this discovery would be the miracle I'd been waiting for.

wasn't.

My search for relief continues...

I do think you should ask your doc about this exam, though! Perhaps it will help you!

 
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Old 03-27-2011, 03:19 PM   #9
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Re: Undiagnosed (Digestive?) Disorder

Hi aprilinparis sorry to hear about your digestive problems. And sorry to hear that the removal of your gallbladder didnt help either I really hope you find answers soon.

I think you are talking about a CCK test? I've been looking it up and it sounds scary!! How did you find the procedure, if you dont mind me asking? I'm really not good with needles and stuff, they make me go--->

I'm going back to the GP tomorrow, not really sure what to say though...

Oh yes and probably should have mentioned this. A few weeks ago my mum had a suspected biliary colic attack and has suspected gallstones, but she's waiting for an ultrasound (on the NHS) to find out. Also my mum's sister (my auntie) and my mum's mum (my gran) have digestive problems too and we all share quite a few symptoms. Perhaps it could be something running in the family?

Thanks

 
Old 03-27-2011, 03:46 PM   #10
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Re: Undiagnosed (Digestive?) Disorder

Perhaps it DOES run in the family... ??

The test I had was a HIDA scan. It may be the same as the CCK..?

It wasn't difficult. I had to eat some radioactive oatmeal (weird, huh?) before the test.

They had me lie on a table of a scanning machine. After about an hour of scanning, the tech injected something that he warned would cause me to feel nausea for a few moments. That was the only unpleasant part... and it really was just a few moments. NOT scary!

Best of luck to you!

 
Old 03-28-2011, 01:36 AM   #11
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Re: Undiagnosed (Digestive?) Disorder

HI Aprilinparis,
Interesting the Gall Bladder removal wasn't the answer to your problem, I read on another site someone said the exact same thing.
My gallbladder result was fine, but I was found with Endoscopy/Colonoscopy to have small Hiatal Hernia and Diverticulitis.
I still believe all my stomach issues resulted from the treatment for H.Pylori.
Do you mind letting me know just what your symptoms are.
My own are Gas/Bloating, Nausea and a dragging sensation in my stomach( behind my bellybutton )area. No heartburn but often get Hiccups for no reason.Loose bowel in the morning.
Yes! I do wonder if it runs in families as my son has some symptoms.
It's great to be able to support one another in this way.

All the best, Solofelix.

 
Old 03-28-2011, 01:52 AM   #12
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Re: Undiagnosed (Digestive?) Disorder

Staryel,
Have you considered Candida as a problem. I have lost a stone in weight, have to see my consultant in April. I also get thrush in my mouth. Search Candida (nasty ) thing.
I'll continue with the Aloe Vera and Grapeseed extract for another week. Aloe Vera is a good all round treatment, found no problem with it.
Solofelix. ( P.S I am only 7 Stone in weight!!)

 
Old 03-28-2011, 02:58 AM   #13
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Re: Undiagnosed (Digestive?) Disorder

Hey solofelix
Funny I am now thinking my symptoms could be a result of h-pylori treament. I had ongoing (daily) nausea from end of Nov 2010 - early March 2011. It seems to have left now. I finished my h-pylori treatment at end of Jan but my symptoms of nausea only at that time continued. Now the nausea has left within days i started to get little pains in my upper abdomen, never too sore, feel more like a stitch and last only seconds but my BM are now pure mush (sorry TMI), diverticulusis has crossed my mind.... Im taking the aloe vera too. I just wish I had the results of the CT scan, im not a very patient patient!

Just wondering, how would candida present itself other then thrush in the obvious places?

Is is great to hear from others in similar situation.

 
Old 03-28-2011, 05:31 AM   #14
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Re: Undiagnosed (Digestive?) Disorder

Are You taking the Aloe Vera Digestive Aid Juice. It is specifically for that region.
A CT scan as far as I know would not show up Diverticulitis, mine was found with Colonoscopy. Google Candida Symptoms and you will see how many (NASTIES) it can present. A high antibiotic treatment e.g (H.Pylori) can cause Candida as it Kills of the good bacteria as well as the bad. Are you taking probiotics.
Solofelix.

 
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Old 03-28-2011, 05:31 AM   #15
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Re: Undiagnosed (Digestive?) Disorder

Hey everyone

Just got back from the doctors, all worn out now! Wasn't really much she could offer me. Got results back from a recent blood test - everything fine. And I have no UTI either. She wrote me out a prescritption for some anti-nausea pills called Metoclopramide, but have looked on the side effects and I'm not too sure. Plus they have lactose in them (have a diary intollerance/allergy). I was also prescribed the 10mg dose. But that should only be given to people 60kg and above. 5mg should be given to those who's weight is between 30kg-59kg.... So, I'm not sure if I'll take them. Anyone else tried them before?


aprilinparis - yes I think the HIDA scan and CCK are the same thing. The procedure sounds similar. I'm just such a chicken when it comes to hospitals. Thanks, wishing you the best of luck too!

solofelix - I dont seem to have any obvious CANDIDA, but as newbe asked, can it be in less obvious places? Like inside or something?? Somewhere not visible perhaps? Good to hear about the Aloe Vera, might be worth a go. Goodluck with your appointment in April!!

newbe - Maybe you should mention diverticulosis when you see the specialist? The change in bowel movement doesnt sound like a good thing. Have you changed your diet at all recently? Goodluck!!


So glad I found these boards when I did, I think I would have lost my mind by now! It may be a silly question, but what keeps you going through everything? Like, what keeps you sane?! Sometimes it can just be so hard to keep going on when you can't see an end in sight....

Take care everyone

 
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