Need Help, Can't eat, so much pain.

Folk

Well-Known Member
So... I'm improving all my symptoms with a bunch of different treatments. The last one was HBOT, which brought a great pain relief (I talked about on the HBOT thread).

The only thing that keeps on ups and downs is my gut health. I've been diagnosed with SIBO last year. Treated with Xifaxan and Neomycin. I have a really strict diet and never cheat (No dairy excpet for kefir, no gluten, no sugar, no fruits (fructose malabsorption), no processed foods).
Somethings used to be ok for me like coffee and tea, but are not anymore, it gives me heart burn.

The thing is. 2 days ago I decided to try a açai bowl, that I made myself so it was pure Açai, Stevia, Kefir and some almonds. (Btw açai is very low in fructose, or fructose free)
I started feeling a mild stomach pain that went to get worse during the day and even worse after I had dinner. I slept with pain and woke with more pain. The other day I spent all day in bed, tried to eat a chicken soup at night and the pain got really bad again. Tried to do enema, which always help in those situations but didn't help this time. Couldn't sleep that day, and end up in the ER cause the pain was really intense. They didn't help much, just brought a mild pain relief, I went home and slept all day. I woke better but feeling my stomach really fragile. Tried the chicken soup again and there came the intense pain again.

So it's been 2 days without almost any food and water. IDK if it was the açaí or the stevia, both things which weren't in my main diet normally.
I'm just looking for some help with what to do now, or what might be happening inside me.
Just looking for some help as I know the doctors won't be able to help me and I'm both hungry and in pain.

The pain is like a punch in the stomach, or after I eat is like the food is stuck in the small intestine. Something like that.
 

madie

Well-Known Member
Two of my grown kids have had very strange, very painful stomach issues in the past year. Doctors never figured out the cause. It's possible that your fancy drink had nothing to do with the symptoms you're experiencing. Both finally got some relief with a medication for stomach cramping, which is incredibly painful. [I'm saying stomach, but I'd have to check with them if it was actually intestines.]

In any event, the important thing to focus on is fluids, and getting back to the ER for saline IVs if necessary. If you have a doctor you can call, I would alert him/her to what's going on. If you're underweight, double down on the carefulness.

I'm very sorry that you're going through this. Please keep posting.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
So... I'm improving all my symptoms with a bunch of different treatments. The last one was HBOT, which brought a great pain relief (I talked about on the HBOT thread).

The only thing that keeps on ups and downs is my gut health. I've been diagnosed with SIBO last year. Treated with Xifaxan and Neomycin. I have a really strict diet and never cheat (No dairy excpet for kefir, no gluten, no sugar, no fruits (fructose malabsorption), no processed foods).
Somethings used to be ok for me like coffee and tea, but are not anymore, it gives me heart burn.

The thing is. 2 days ago I decided to try a açai bowl, that I made myself so it was pure Açai, Stevia, Kefir and some almonds. (Btw açai is very low in fructose, or fructose free)
I started feeling a mild stomach pain that went to get worse during the day and even worse after I had dinner. I slept with pain and woke with more pain. The other day I spent all day in bed, tried to eat a chicken soup at night and the pain got really bad again. Tried to do enema, which always help in those situations but didn't help this time. Couldn't sleep that day, and end up in the ER cause the pain was really intense. They didn't help much, just brought a mild pain relief, I went home and slept all day. I woke better but feeling my stomach really fragile. Tried the chicken soup again and there came the intense pain again.

So it's been 2 days without almost any food and water. IDK if it was the açaí or the stevia, both things which weren't in my main diet normally.
I'm just looking for some help with what to do now, or what might be happening inside me.
Just looking for some help as I know the doctors won't be able to help me and I'm both hungry and in pain.

The pain is like a punch in the stomach, or after I eat is like the food is stuck in the small intestine. Something like that.
Wow.... I wonder if you're having motilty problems.....This can end up being a real problem because from what I heard when the stomach doesn't get food it tends to shut down. In the second part of a recovery story I'm going to post the Mayo Clinic talks about how common stomach problems are in POTS. The way they get over that is just keep eating..

Have you tried a laxative to just get that stuff out?
 

Edie

Active Member
So... I'm improving all my symptoms with a bunch of different treatments. The last one was HBOT, which brought a great pain relief (I talked about on the HBOT thread).

The only thing that keeps on ups and downs is my gut health. I've been diagnosed with SIBO last year. Treated with Xifaxan and Neomycin. I have a really strict diet and never cheat (No dairy excpet for kefir, no gluten, no sugar, no fruits (fructose malabsorption), no processed foods).
Somethings used to be ok for me like coffee and tea, but are not anymore, it gives me heart burn.

The thing is. 2 days ago I decided to try a açai bowl, that I made myself so it was pure Açai, Stevia, Kefir and some almonds. (Btw açai is very low in fructose, or fructose free)
I started feeling a mild stomach pain that went to get worse during the day and even worse after I had dinner. I slept with pain and woke with more pain. The other day I spent all day in bed, tried to eat a chicken soup at night and the pain got really bad again. Tried to do enema, which always help in those situations but didn't help this time. Couldn't sleep that day, and end up in the ER cause the pain was really intense. They didn't help much, just brought a mild pain relief, I went home and slept all day. I woke better but feeling my stomach really fragile. Tried the chicken soup again and there came the intense pain again.

So it's been 2 days without almost any food and water. IDK if it was the açaí or the stevia, both things which weren't in my main diet normally.
I'm just looking for some help with what to do now, or what might be happening inside me.
Just looking for some help as I know the doctors won't be able to help me and I'm both hungry and in pain.

The pain is like a punch in the stomach, or after I eat is like the food is stuck in the small intestine. Something like that.
Your IBS symptoms are very familiar to me. I've had FMS for 21 years and I received mega help from a Naturopath Doctor. You can read my blog on Health Rising '17 years under the care of a Naturopath Doctor for Fibromyalgia' click Home and scroll down to supplements. Many of my gut problems were resolved by different treatments. Hope this information will be of benefit to you. You may need a good 2-phase digestive enzyme such as Panplex. Being aware of foods that are bothering you and illuminating them from your diet is a great first step, and you're already doing that. Wishing you better days ahead.
 

Folk

Well-Known Member
Wow.... I wonder if you're having motilty problems.....This can end up being a real problem because from what I heard when the stomach doesn't get food it tends to shut down. In the second part of a recovery story I'm going to post the Mayo Clinic talks about how common stomach problems are in POTS. The way they get over that is just keep eating..

Have you tried a laxative to just get that stuff out?
I thought about it Cort but I was afraid it would cause even more pain. Still thinking about....
I don't think I have POTS though... I can stand for hours with no problem, just having to sit some minutes for the lower back pain sometimes.

Your IBS symptoms are very familiar to me. I've had FMS for 21 years and I received mega help from a Naturopath Doctor. You can read my blog on Health Rising '17 years under the care of a Naturopath Doctor for Fibromyalgia' click Home and scroll down to supplements. Many of my gut problems were resolved by different treatments. Hope this information will be of benefit to you. You may need a good 2-phase digestive enzyme such as Panplex. Being aware of foods that are bothering you and illuminating them from your diet is a great first step, and you're already doing that. Wishing you better days ahead.
Hey thanks, gonna read that.
 

Folk

Well-Known Member
Two of my grown kids have had very strange, very painful stomach issues in the past year. Doctors never figured out the cause. It's possible that your fancy drink had nothing to do with the symptoms you're experiencing. Both finally got some relief with a medication for stomach cramping, which is incredibly painful. [I'm saying stomach, but I'd have to check with them if it was actually intestines.]

In any event, the important thing to focus on is fluids, and getting back to the ER for saline IVs if necessary. If you have a doctor you can call, I would alert him/her to what's going on. If you're underweight, double down on the carefulness.

I'm very sorry that you're going through this. Please keep posting.
Thanks for the reply.

I'm not underweight, but I can become very easily if things keep going like that.

What was the medication your kids took btw?

I just sent my USA doctor an e-mail. I'm afraid he'll tell me to take another course of Rifaximin, which will take a while to get here, or say I need to see a gastro, which I know won't help me here in Brazil.
 

Who Me?

Well-Known Member
@Folk I don't know where you get your rifaximin but you can get it without an rx from Clearsky Pharmacy. Not sure how long it would take to get there though.

Have you thought of cromolyn sodium? Seems to be the cure all for now for mast cell stuff. I have relief from a lot of my gut pain since being on. I still have motility issues but it isn't as bad if I watch what I eat.
 

Folk

Well-Known Member
@Folk I don't know where you get your rifaximin but you can get it without an rx from Clearsky Pharmacy. Not sure how long it would take to get there though.

Have you thought of cromolyn sodium? Seems to be the cure all for now for mast cell stuff. I have relief from a lot of my gut pain since being on. I still have motility issues but it isn't as bad if I watch what I eat.
I can get a RX, the problem is to get it from Canada to Brasil.

How do you use the Cromoyln sodium? Nasal spray?
CAuse I guess my Dr. suggested me but I couldn't find in pills just nasal spray and he said nevermind then. (I'm not sure if I'm thinking about the right thing)

PS: Just checked Clearsky Pharmacy, their pricing is equal as canada princing! and it seems that they ship to Brazil. hehe Thx for the info, do you knou if they are legit?

PS2: They're not accepting credit card at the moment :| I'll have to figure it out how the other payments work... perhaps bitcoin.
 
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Who Me?

Well-Known Member
@Folk. Clearsky is legit. Maybe they take western union? Contact them

I got my doc to rx cromolyn powder and I make my own oral solution. It doesn't come in pills. I have a thread here somewhere where I talk about it. I'll look for it.

The nasal spray is OTC. One is nasalcrom. The other is by Health Guard where you get more doses for about the same amount of money.
 

madie

Well-Known Member
[QUOTE="Folk, post: 23395, member: 44"
What was the medication your kids took btw?/QUOTE]

They took dicyclomine, which I see is prescribed for IBS, so you probably already know about it.
 

Folk

Well-Known Member
@Folk. Clearsky is legit. Maybe they take western union? Contact them

I got my doc to rx cromolyn powder and I make my own oral solution. It doesn't come in pills. I have a thread here somewhere where I talk about it. I'll look for it.

The nasal spray is OTC. One is nasalcrom. The other is by Health Guard where you get more doses for about the same amount of money.
Yeah, just found my conversation with the doctor and he did recomend cromolyn at some point... He said if I could get by insurance or with a cheaper price here in Brazil I could do it, otherwise would be too expensive (as you said in your thread).

So the cromolyn powder is working as good as Gastrocom for you?
Can you tell me the name of the pharmacy you get to see if they send to Brazil?

Thxx :D

Ps: I'm better now... Could eat a normal meal just right now. Just some mild disconfort on the stomach, it shall pass.
 

Who Me?

Well-Known Member
I don't know if the pharmacy I got it from would ship to you, takes a trip to the PO and customs forms call some local compounding pharmacy and see if they can get it to you?

It is working fine. The only difference between mine and the rx is I'm saving $100 by having the dose prepacked in vials.

This is one place I originally found

Cromolyn powder to make your own
Clarks Pharmacy Mark Clark
15615 Bel-Red Rd
Bellevue Wa 98008
425-881-0222

I'm getting mine from Steven's Pharmacy. Maybe talk to Charles, he's the owner.

http://www.stevensrx.com

Glad you can eat.
 

Folk

Well-Known Member
Thanks for the support guys, I appreciate it.

Thankfully I'm back to normal and this was just another wonderful mystery from this disease full of surprises.
 

Who Me?

Well-Known Member
Thanks for the support guys, I appreciate it.

Thankfully I'm back to normal and this was just another wonderful mystery from this disease full of surprises.
Been there. When it happens you can't help but think "is this my new normal?"

It's easy to freak. So glad you pulled through.
 

Folk

Well-Known Member
@Who Me?
Do you have any specifications for the cromolyn powder? Milgrams or something?

I found a pharmacy that compounds and ships to Brazil I would just have to tell my Dr how to prescribe it for me.

Thanx!
 

Who Me?

Well-Known Member
@Folk . When I called the pharmacy in Washington they told me 1/8 tsp was 150 mgs. I told that to my doc and how it was RX'd ro get the jar of the powder

But when I contacted the pharmacy I got it from it was totally different. He said I had to put 1/2 tsp in 100 ml and then 5 ml was 100 mgs. Or something like that. Wrote it down.

So it depends on how the strong the powder is. You need to find that out. Ask them what you have to do to get 100 mgs per dose

My turn to be In a crash. Ugh
 

Merida

Well-Known Member
Two of my grown kids have had very strange, very painful stomach issues in the past year. Doctors never figured out the cause. It's possible that your fancy drink had nothing to do with the symptoms you're experiencing. Both finally got some relief with a medication for stomach cramping, which is incredibly painful. [I'm saying stomach, but I'd have to check with them if it was actually intestines.]

In any event, the important thing to focus on is fluids, and getting back to the ER for saline IVs if necessary. If you have a doctor you can call, I would alert him/her to what's going on. If you're underweight, double down on the carefulness.

I'm very sorry that you're going through this. Please keep posting.
Just 2 months ago I had a very dark red brown urine. My liver/kidney tests were fine. But then I discovered pictures of porphyria urines that matched perfectly. Please check this out. Acute intermittent porphyria causes awful abdominal pain. My urine was tested the following week , but by then it was clear and normal again. The test was negative - not surprisingly.
 

Merida

Well-Known Member
@Folk
Are you any better? After trying everything imaginable Miralax and magnesium helped me. I try to alternate. I was so sick with no bowel movement and pain that I had a Medtronic Interstim implanted at a large medical center. Didn't work. But also, I have a long redundant colon that has twists and kinks, and can telescope. ( also diverticula - no nuts or seeds) Acupuncture did help the GI issues, and helped a large sigmoid-rectal ulcer heal.

My friend has had some success with slippery elm.

Sometimes I just can't even get my head around what we go through.
Hugs.
 

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