Son undiagnosed for almost a year, would really appreciate some advice
Posted , 8 users are following.
Hi there,
My 19 year old son has been suffering with debilitating nausea, upper abdominal ache (sometimes lower), indigestion, bloating, weight loss, extremely low energy levels, very low blood pressure for the past 10 months. Before this he was extremely active and happy, now he can barely leave the house. he was referred to a gastroenterologist and has been tested for Addisons disease, infection and celiacs (although it doesnt seem related to his diet). The results of barium follow through, abdominal ultrasound,MRCP and CT scan on brain all came back clear. It's months between gastro appointments and so frustrating not to have a diagnosis. He's tried PPIs, IBS medications, anti depressants as well, but nothing seems to help.
Cant stand seeing him like this and becasue of his age the doctors don't take it seriously when it's completely ruining his life. I' ve had to fight and complain to get every test he's had done carried out, as left to their own devices he'd have had two appointments with the gastro in 10 months. Not sure where to go from here though, the next appointment with gastro is in 4 months time, meanwhile he's still so ill.
Any advice appreciated
0 likes, 26 replies
claire52087 Sandy39
Posted
I've been going through the exact same thing since August last year! I was told mine was gastroenteritis at first, that didnt go away so I was back to GP they then took a urine, blood and stool sample and results come back that I had h.pylori, they put me on 2x lots of antibiotics which didnt help.. next they sent me for full abdominal ultrasound that was completely fine (other than cysts on my ovaries which are being looked into and have nothing to do with the issue of my stomach) then last night i had an endoscopy (what a horrendous experience that was) but apparently that looked normal too! they took a biopsy to see if i still have h.pylori infection.. but like you I'm also at a loss and ddont know where to turn. starting to think it's all in my head because nothings being found.. sorry about long post!
Sandy39 claire52087
Posted
So sorry you're going through this too. Reading up on it, the endoscopy does sound like it can be a horrendous experience, especially when it doesn't give any answers. It's just so difficult, because you can't begin to treat anything until you have a diagnosis.
My son was also tested for h. Pylori but he didn't have it, because at first they thought it may have been an ulcer. Stay strong and don't let them fob you off with the whole, "it's all I your head" thing. You know your body better than anybody else and you really have to keep pressing them to get anything done. Like you, each time a test comes back negative I breathe a sigh of relief, then I look at how ill he is and think, now what?
pippa58442 Sandy39
Posted
Has he had an colonoscopy? Has he tried a food diary and has he had stress recently? Has IBS been considered?
Sandy39 pippa58442
Posted
No, he hasn't had a colonoscopy. He does keep a food diary, but only ate a very bland diet for about six months, just boiled rice and grilled chicken breast as the nausea is so overwhelming that his appetite has decreased a lot.
Can IBS be this bad? He has tried colpermin, silicolgel, probiotics, antibiotics and domperidone for the nausea, none of which seem to have helped.
pippa58442 Sandy39
Posted
IBS can be very severe and stress makes it worse. Colpermin can actually cause reflux and it is worth checking the medication leaflets for the probiotics, antibiotics and the anti nausea medication to see if they cause nausea. Antibiotics in particular can cause nausea and vomiting. I can't take some antibiotics because of this.
IBS itself can cause nausea and loss of appetite. I experienced nausea with my IBS but my appetite was fine. I had mild to moderate, constant, daily symptoms for three and half months. The pain changed in type, location and severity throughout the day depending on how stressed I was about my symptoms. No food triggered my symptoms but stress did. Occasionally, I had severe pain. After diagnosis, my anxiety calmed down and so did my IBS.
Has he noticed if any foods trigger the symptoms from doing the food diary? Sometimes change of diet can upset the gut and cause nausea too. Does he experience constant pain or come and go pain that moves about and changes in type? I had dull, stabbing, deep grinding and sore to touch pain.
Courtney1110 Sandy39
Edited
Hi Sandy,
I'm 25 and have been dealing with very similar symptoms for the past 2 years. I saw you mentioned that you were making your son chicken as part of his bland diet. I remember eating chicken used to make me feeling nauseous. My nutritionist at the time gave me a digestive enzyme to take to help digest the protein. I was told I didn't have enough acid to digest the protein. Has he had any blood tests? I had mine done and my pancreatic enzymes came back elevated.
Sandy39 Courtney1110
Posted
Thanks for the response, I'm going to get a print out of the tests he had done, because some of them were 10 months ago now and he's literally had so many of them I'm not 100%sure if his pancreatic enzymes were tested. Did this solve the issues you were having?
Courtney1110 Sandy39
Posted
You're welcome! I know this is a hard thing to go through. Unfortunately it did not solve my problems. I think it stumped my doctors even more. One gastroenterologist I went to ended up telling me that sometimes enzymes come back elevated for no reason. I hope you and your son figure this out soon!