Anything to try?

[DarkDane]

I havent really introduced myself and im pretty bad at these things, but here it goes.

Loving stable home growing up with occasional outburst, no one is perfect. Always got sick quite easily and one thing led to another with more severe problems starting at 12-13 stomach issues, chronic fatigue, skin issues. And it got really bad 4 years ago when it came to the point were i could not process food anymore, can still eat, just can't really obtain nutrients. This is slowly starting to lead to premature aging and I can no longer study what I love. Will try to go before the year is out, hopefully as soon as possible. I havent told anyone this time, as last time i was put in the psych ward 1,5 years ago.
I think i realized since 12 that i would go a lot earlier do to my health. And also by my own hand.

Im very happy I found this forum, it has been a great support since i wasent able to tell anyone.

Since i probably have a couple of weaks left, do anyone know something worth trying, like food, experience etc.?

 

[JimFord99]

What is your condition if I may ask? Is it cancer?

 

[DarkDane]

Doctors dont really know, but doctors here are also miles behind other countries.
What i have confirmed is

Allergies
Asthma
Chronic inflamation of eyes and mouth
Slow gastric motility + SIBO
Joint pain
Chronic fatique
Malarbsorbtion due to SIBO
Eczema
Nerve pain from stress and depression due till body being under excess stress

So i decided to check out while i still can walk and talk normally.

 

[JimFord99]

You are not by any chance allergic to certain foods, such a nut or wheat intolerance? Did you do an allergy test? just a thought.

 

[SinisterKid]

Hi and welcome to SS.

Its difficult to suggest anything before knowing some of your likes and dislikes. Have you drawn up a bucket list of anything you would really want to do before you die?

My son took to me to Old Trafford a few years ago. It was a great day out. I mentioned to him that I went as a boy and the place was a dump, but that I would love to see the new stadium. So as a reward for doing a lot of work for him, he paid for a day out there. Then he framed the tickets, a photo, the VIP pass and gave them to me as a birthday gift. I knew nothing about any of it. I would love to visit the Nou Camp, home of Barcelona FC.

Anything like that appeal to you?

 

[DarkDane]

I tried every diet on the planet, schedules, fasting, rifaxamin for SIBO and so on, i got better and then just right after spiraled further down. The chronic joint pain never disappeared. Fought for the last 4 years constantly while studying, but now it spiraled down even further and I realized it wont get better.

Hi and welcome to SS.

Its difficult to suggest anything before knowing some of your likes and dislikes. Have you drawn up a bucket list of anything you would really want to do before you die?

My son took to me to Old Trafford a few years ago. It was a great day out. I mentioned to him that I went as a boy and the place was a dump, but that I would love to see the new stadium. So as a reward for doing a lot of work for him, he paid for a day out there. Then he framed the tickets, a photo, the VIP pass and gave them to me as a birthday gift. I knew nothing about any of it. I would love to visit the Nou Camp, home of Barcelona FC.

Anything like that appeal to you?

A fine suggestion, im not the biggest sports fan, but there is actually a castle i want to see, which I had completely forgotten about.
Dont really have a bucket list, i wanted to see some of Japans historic sites in northern japan, but i dont really have energy to travel that far.

 

[gingerplum]

What's the bowel obstruction? I feel like this could be surgically correctable, and the slow motility could be medically managed.

Chronic inflammation that's localized to eyes & mouth?? Ever treated with steroids? Boy, I'd love for you to be evaluated by a really first-rate immunologist.

Someone as young as I'm thinking you are deserves every possible chance to at least physically feel better.

Hi and welcome to SS.

Its difficult to suggest anything before knowing some of your likes and dislikes. Have you drawn up a bucket list of anything you would really want to do before you die?

My son took to me to Old Trafford a few years ago. It was a great day out. I mentioned to him that I went as a boy and the place was a dump, but that I would love to see the new stadium. So as a reward for doing a lot of work for him, he paid for a day out there. Then he framed the tickets, a photo, the VIP pass and gave them to me as a birthday gift. I knew nothing about any of it. I would love to visit the Nou Camp, home of Barcelona FC.

Anything like that appeal to you?

Not to derail the OP's thread, but... your son fucking rocks. Jeez, mine's a surly malcontent. Lucky you, I'm jealous!!

 

[DarkDane]

What's the bowel obstruction? I feel like this could be surgically correctable, and the slow motility could be medically managed.

Chronic inflammation that's localized to eyes & mouth?? Ever treated with steroids? Boy, I'd love for you to be evaluated by a really first-rate immunologist.

Someone as young as I'm thinking you are deserves every possible chance to at least physically feel better.

Thank you for caring, ive tried the prokinetics for the bowel which helped but gave some serious side effects. A lot of the medication for the immune system makes you even more tired and there is nothing for the joint pain since they dont really know what causes it.

And in the end it has caused a depression that probably started at 13, the only thing that was enjoyable was spending time with a loved one that is no longer in my life.

 

[gingerplum]

Thank you for caring, ive tried the prokinetics for the bowel which helped but gave some serious side effects. A lot of the medication for the immune system makes you even more tired and there is nothing for the joint pain since they dont really know what causes it.

And in the end it has caused a depression that probably started at 13, the only thing that was enjoyable was spending time with a loved one that is no longer in my life.

I'm so sorry; I read SIBO as "small intestine bowel obstruction," not bacterial overgrowth, that's why I was inclined to think it needed surgery.

I don't know anything about SIBO, but I'm going to read about it. I do care, and I'm so sorry you have to deal with all of this.

 

[Fragile]

do you also have very stretchy skin and joints? asking because your symptoms sound like a condition called ehlers danlos.

 

[sleepy dog]

Not a doctor or anything. Just to give a different perspective for you. It sounds like maybe a severe allergy and rheumatoid arthritis. Just to give you feedback. It probably sounds stupid to gingerplum or anybody else trained in medicine. Could it be a perforation somewhere in the digestive system?

 

[DarkDane]

I'm so sorry; I read SIBO as "small intestine bowel obstruction," not bacterial overgrowth, that's why I was inclined to think it needed surgery.

I don't know anything about SIBO, but I'm going to read about it. I do care, and I'm so sorry you have to deal with all of this.

I have read I dont know how many medical papers now and it all seems quite hopeless, and it also wont solve the joint problem. But thank you for looking into it.

do you also have very stretchy skin and joints? asking because your symptoms sound like a condition called ehlers danlos.

That has been ruled out, also no stretchy skin.

Not a doctor or anything. Just to give a different perspective for you. It sounds like maybe a severe allergy and rheumatoid arthritis. Just to give you feedback. It probably sounds stupid to gingerplum or anybody else trained in medicine. Could it be a perforation somewhere in the digestive system?

It did start as digestive problem when i was younger which they called IBS, they dient know better at the time, its not a real diagnosis, just means they dont know what is wrong.
RA has also been rules out, they have no clue about the joints. I have been to every possible specialist, its something either very rare or unknown or its in the early stages

 

[sleepy dog]

The perforation thing is called diverticulitis. Sometimes doctors can't find a cause and then one doctor is smart enough to test for parasites and discovers the answer. You aren't going to get any relief if they won't run tests and try some medicines. Its not like they would be trying anti-psychotic drugs. Have you taken antibiotics?

 

[DarkDane]

The perforation thing is called diverticulitis. Sometimes doctors can't find a cause and then one doctor is smart enough to test for parasites and discovers the answer. You aren't going to get any relief if they won't run tests and try some medicines. Its not like they would be trying anti-psychotic drugs. Have you taken antibiotics?

They ran many test and scanned my intestines, nothing abnormal, they really dont have a clue where it comes from, except slowed motility and SIBO, was on rifaximin for sibo only worked a bit.

 

[Deleted member 1465]

I have been on prucalopride for slow motility. There is also linaclotide but it's tough to get. Ironically domperidone is also a motility enhancer.