Undiagnosed and feeling alone :(

[jessicagrace]

My story is an ongoing one that is starting to make me feel depressed and alone. At 19 I dont think spending so much of my time poorly is the best way to lead a teenage life but I have had to accept that I am not a normal teenager and that hurts, especially when nobody I know understands what Im going through.
My story begins 3 years ago when I was 16. I had just come back from a 2 week holiday in Rhodes and I stuffed myself with pizza, chocolate and pretty much every unhealthy thing I could find. A few weeks after my holiday I had these burps that tasted just like rotten eggs, they were foul! A few hours later I had awful diarrhoea that left me feeling so weak an unwell that I assumed I had some sort of sickness bug, especially as it lasted for a week. On my way to college a week later I once again had the burps which were followed with agonising pain radiating from my upper mid section to my upper right section under my ribs. I phoned my mum begging her to take me to my GP who concluded I had a gallbladder infection and put me on antibiotics. A few weeks later that same pattern emerged, burps, pain, vomiting, diarrhoea. However the pain was getting worse with each attack, but everytime my GP put me on antibiotics and left it at that. After a year my mum paid for me to go private and after an emptying scan it was discovered that my gallbladder wasnt working fullstop. A few months later I had it removed and thought all my troubles were over.
9 months passed with no symptoms and no pain, apart from constipation that left me not going for 2 weeks, but to to me this wasnt a big deal. Then the horrible day came that I had my eggy burps, I burst into tears knowing exactly what was to come, but this time it was so much worse. The pain was horrific I couldnt move, I was vomiting and had my diarrhoea once again. My mum called the ambulance because she had never seen me so bad. At the hospital they gave me oramorph, which I threw up in a heartbeat and left me to it. After an hour of running back an forth to the toilet and holding myself in agony I left the hospital. The next attack I had I was taken to another hospital where this time I was given morphine straight into my veins and the pain went in about 2 minutes. My doctor then gave me pethidine to take when I have my attacks as no other tablets have ever helped not even morphine tablets or codeine tablets.
At present I am awaiting an MRI on my small bowel next week to search for crohns, although my gastro doctor doesnt think it is as my blood works were totally normal. I am so fed up and just want answers.
I am on a liquid only diet that consists of 3 fortisips a day and thats all. I am to scared to eat food as I live in fear of my attacks. The liquid diet is because a motility test shows that i digest food slower than I should.
I just want answers so that I can start to fix whatever is wrong and move on with my life. I want to start uni next year but how can I when I am as poorly as I am
I just want support and to know that Im not the only one whos going through this, I am so low at the moment and just need someone that understands to reach out and talk to me

 

[Gculk]

Rhodes is tropical, you probably have some sort of parasite. This is reinforced by the fact that you have 'eggy' burps - it means you've got something digesting your protein before you get to it. Proteins have sulfur in them which when metabolized give off H2S or SO2, rotten egg smelling chemicals.

Don't worry, you're not alone. But lucky for you, there's a good chance IMO that you'll be leaving the ranks of the afflicted soon enough.

So yeah, it seems like your doctor didn't check for parasites?

Nathan

 

[jessicagrace]

Would a parasite stay in my system for 3 years though? Im in the process of waiting for the results of a helicobacter pylori test thing at the moment but apart from that I dont think parasites have been tested for. My blood results do show that I have raised levels of LFT in my liver when I have my attacks but thats about it really and normally I have a raised white blood cell count aswell. I think the thing that scares me the most is the pain its absolutely horrific :/

 

[Gculk]

Yes honestly. Many of those buggers stay around basically forever if you don't treat them. It's not for certain, but honestly I'd say that it's a reasonable bet. Especially since you had what appeared to be an infection that knocked out your gallbladder.

At the same time, it very well could be something else such as Crohn's.

How often and long are your attacks?

 

[jessicagrace]

They were occurring about twice a week before I started my fortisip only diet and the attacks last for hours and the pain gets worse as the time progresses, I haven't had an attack in about a month but I'm not eating and my medication has been increased aswell

 

[Gculk]

Hmm.

I would keep pushing on - the eggy burps indicates that you have to have SOMETHING metabolizing protein in your upper GI. So you have some sort of hitchhiker. It just matters if it is the one causing the attacks, or just a me-too infection.

So yeah, I would say keep pushing to get more testing for some GI infections or Small Intestine Bacterial Overgrowth.

Best of luck!

Nathan

 

[dannysmom]

welcome jessica -
I am sorry you have so much pain. Do you have a date for the MRI yet? Have you had any scopes done? I would think you need an upper endoscopy and colonoscopy. I hope you get answers soon.

 

[jessicagrace]

Thankyou for all your help Nathan its nice to have support from a fellow undiagnosed

Jeanne my MRI on my small bowel is tomorrow and I had an upper endoscopy 3 years ago that came back normal but that was before my symptoms got to the stage they are at now. Not had a colonoscopy but think I am going to try to get my doctor to schedule one after my MRI.

 

[Maree.]

My son (10) is undiagnosed and we've spent a lot of time in third world. So doctors do wonder about parasites. Next steps for him are Upper endoscopy, MRI & pill cam.

But his GI has said if none of those show the cause that he wants to give him a broad spectrum anti paresite/anti bacterial antibiotic to kill anything that might be lurking in his system but not showing up on tests.

I hope it doesnt come to that as he had a cause of Augmentin last month and it made him really sick (loss weight, drop in white blood cell count) so I dread to think what a heavier duty antibiotic might do to him.

 

[dannysmom]

Hi Maree & Jessica -
Danny tried a medication called Alinia which is used for lots of parasites. Maybe you can try that too.

 

[Maree.]

Thanks. Will keep that in mind if nothing shows up in the set of tests he's about to have done.

 

[CatherineM]

Hey u sound just like me. I had my gallbladder removed but still had yucky burps afterwards. Turns out I have gastritis n bile reflux. But I am getting tested for crohns. My blood work was fine at first. Abnormal liver results can also occur with crohns I was told. Iv had a colonoscopy which was fine and had a MRI on Friday so waiting on results. Had u done a stool test? The facael calprotectin stool test is what has shown my consultant there's defo something going on. I do understand how tough it is tho, I'm going through the same stage. Painkillers don't do much, sometimes I need quite a bit of morphine. It's nasty, but keep on at ur doctors xx

 

[jessicagrace]

Thankyou Maree I will definitely try to push for more tests regarding parasites

CatherineM I don't want this to sound odd but I am so glad to have finally found someone with such similar symptoms as me. How long was it after your surgery that you had your burps and pain back? And no not had that particular stool test done but am waiting on the results from a parasite stool test and also MRI results. Keeper posted on how you get on with all your results

 

[Maree.]

Fecal Calprotectin is a measure of inflammation. I've come across several people who had this show inflammation when none of the other stool tests did. For Liam it is also the only stool test that has ever come back with a non normal result (694). This is definitly a test that's worth discussing with your doctor.

 

[CatherineM]

Thankyou Maree I will definitely try to push for more tests regarding parasites

CatherineM I don't want this to sound odd but I am so glad to have finally found someone with such similar symptoms as me. How long was it after your surgery that you had your burps and pain back? And no not had that particular stool test done but am waiting on the results from a parasite stool test and also MRI results. Keeper posted on how you get on with all your results

Its so tough so find people who are similar. I had my gall bladder removed 4 years ago, I am now 25 and started getting burps and stuff abOut a year after but I was still getting pain but was told post op. Have u had an endoscopy? That's what noticed I have gastritis and bile reflux. The feacal calprotectin is the one test that the doctors are going on so it's worse getting that done. The now think that the bile reflux was hiding the possible IBD. Abnormal LFTs can be cause by crohns. Deffo push on at the docs. Iv been so unwell for 2 years and often in hospital for pain management. Can understand the stress it causes xx

 

[Maree.]

My son (10) has had bile reflux since January, still a problem despite taking a daily PPI.
His other symptoms stomache pain lower down, headaches and dizzyness, failure to grow started back in September. His last GI was quite focused on the reflux his current one says that it's just a distraction.

His current GI's theory is all his other symptoms relate to malnutririon (failure to absorb nutrients for unknown reason) & the Reflux is just over feeding as we've been pushing to many supplements and extra calories which are overloading his stomach. Sadly, only time and more tests is going to show whether he's correct about that.

It is so incredibly difficult to get to the bottom of what's going on when there can be multple different things at play that are interacting with each other. Persistance seems to be the key in working out what is going on and if your getting no where I think it can be healthy to get a 2nd or 3rd ... opinion from someone who'll look at the issues with a fresh set of eyes.

 

[jessicagrace]

I think the test for inflammation definitely sounds like a good one to have and I had never heard of it before. Maree I hope all the best for your son, I struggle with all of this at 19 so at 10 I think hes amazing, because being undiagnosed and tested for everything and anything is not easy to go through at any age.

CatherineM it is so difficult and causes so much stress not knowing whats wrong and the waiting is starting to get to me. You have to wait so long for test results and for tests to be scheduled that you lose hope of ever getting your life back. I had an endoscopy when my symptoms first started and it came back normal, but 3 years later and my symptoms are 10x worse and i am throwing up bile on a weekly basis, yet my doctor does not think I need an endoscopy and he says I dont have ulcers. In other words he doesnt want to schedule expensive tests on me :/ The temptation to go private is growing more and more everyday because I am wasting my life worrying about this condition

 

[Traumanurse]

If your Doc won't do the endoscopy, ask about "Small bowel follow-through. May have another name where you are. You drink Barium, then they take X-Rays and do a floroscopy as the barium moves through. This is about the only way they can look at the small intestine besides the camera pill. Unfortunately the endoscopy can only see just past the stomach, and the colonoscopy can only see to the end of the large intestine. As far as I know, they haven't invented anything to "see" the middle. The bad burps, pain, and diarrhea were common for me at the early stages of my Crohns disease. My symptoms started in my lates 20s very infrequently, but hit with a thud when I turned 40. I really think they need to see what's happening in your small bowel.
Good Luck, and I wish you all the best! Sometimes it just helps to put a NAME to it all!

 

[josephd]

i have a lot of the symptoms as many of you noted. I had a colonscopy and an egd that showed some gastritis and small polyps, I have had gerd and several years ago had a lap choley. even after that I had continued urq pain and I felt like the docs were blowing me off. until I had a capsule endoscopy and they had found several erosions in my small intestine. I was glad they finally did the capsule endoscopy. I had some blood work done a few weeks ago and I had elevation in some antibodies. I see the gastroenterologist on Monday. my rheumatologist started me on sulfasalazine and I have not yet had any relief in my pain or bloating.