No colon, no hope? Completely messed up guts, too much surgery, feeling exhausted

OP
R

rainbowdrops

Member
Joined
Jun 14, 2021
Messages
33
yw hmm yeh rare but could be Campylobacter Species and Guillain-Barré Syndrome (guillain barre)

regardless bacteria seems a likely reason for the gas right not sure what else. & if thats the case seeing as the hydrogen test was negative , hydrogen sulfide producing bacteria would be more likely (e.g campylobacter seems likely remaining since you mentioned it before, or another strain). so probably a good idea to avoid sulfur foods for a while. the bromelain targets many bacteria indiscriminately i think , it just eats away the surface molecules so they lose function. (maybe best to start on 1x 200mg to see if tolerated, product that doesnt have silica as an ingredient. that dose is enough in studies for a bunch of stuff. just assuming multi dosing would take care of pathogens faster)

& if u do also have the nerve damage causing dysmotility thats probably helped by restoring myelin. needed for proper nerve impulses.
so you'd wanna get more schwann cells going for a target,
actually bromelain has some effect for this also, at ~500mg a day human dose Antinociceptive and neuroprotective effects of bromelain in chronic constriction injury-induced neuropathic pain in Wistar rats

33% of calories as carbs is general recommend. carbs 4 calories per gram. you could even just use sugar in water 30g at a time a few times over the day, & rinse with fresh water after, for purest form while you are struggling tolerating food. ive been doing this with ulcerative colitis for a while with small intestinal ulceration that gets irritated by pretty much everything, split between sugar & wheat
By the way, I sometimes order form this site, but is maltodextrin a no-no?
 

Korven

Member
Joined
May 4, 2019
Messages
1,133
Hi! Thanks, it's hard to find people who've also been through it.

I've done various antibiotics in the past, probably too much, and I think my docs are very hesitant to prescribe me anything else, If only the rifaximin had been successful...
Low fodmaps means little fruit, honey etc, so I guess I'd have to rely on starch?

Thanks so much for the support! It means a lot. Been feeling very alone.

I understand, it can be somewhat difficult to get your doctor to "comply" with requests. Sorry to hear the rifaximin didn't do anything, did any of the other antibiotics have any positive effect? The guy in the interview said he got the most relief from using a combo of Augmentin and ciprofloxacin (though cipro has kind of a bad rap due to side effects/black box warnings). High dose oregano oil is another option to antibiotics that has worked well for me personally.

I don't think all fruits are high FODMAP, for instance orange is a low FODMAP fruit! Honey may be problematic though due to high free fructose, but sugar should be fine I reckon, it's just pure sucrose. An alternative to the strict low FODMAP diet is a "low fermentation diet" that is not as restrictive, but only limits food that are more likely to ferment in the gut. For more info see this PDF: https://www.siboinfo.com/uploads/5/4/8/4/5484269/low_fermentation_diet.pdf

No worries, I think it was an excellent idea of you to ask here for some support and guidance!
 

cs3000

Member
Joined
Jul 27, 2022
Messages
599
Location
UK
Man, that syndrome scares me. I did actually think I had it after the infection but never got any conclusive proof, can't say now whether I was just freaking myself out or not.

As well as cabbage and onion, any other sulphurous foods to keep away from? Are eggs OK?

It's been years now since the infection and no improvement, so I can't help but feel it's too little too late :(

Man, sometimes I wish someone would just tell me exactly what to eat, what time and how much lol. With the anxiety everything tends to overwhelm me, and I don't want to return to the days of tracking and weighing everything I eat, but I might not have a choice. I have plenty hunger but only realise hours later that I overdid it, and by that point I can't do much about it.
reading around its reversible but can take some years , i bet supporting myelin repair would accelerate that a lot

personally i dont get the hydrogen sulfide gas from foods high in sulfur amino acids , just stuff like onions broccoli some potatos tomato which specifically have sulphate The contribution of alliaceous and cruciferous vegetables to dietary sulphur intake (table 1 breaks food down, so column 3 sulphate)

so could test avoiding those for a week (if u eat any) & see if the gas is reduced. if the bromelain works might not need to

By the way, I sometimes order form this site, but is maltodextrin a no-no?
thats a simple carb so all good
edit: missed that its 2500 gdu per gram. similar strength to the one i take
 
Last edited:
OP
R

rainbowdrops

Member
Joined
Jun 14, 2021
Messages
33
reading around its reversible but can take some years , i bet supporting myelin repair would accelerate that a lot

personally i dont get the hydrogen sulfide gas from foods high in sulfur amino acids , just stuff like onions broccoli some potatos tomato which specifically have sulphate The contribution of alliaceous and cruciferous vegetables to dietary sulphur intake (table 1 breaks food down, so column 3 sulphate)

so could test avoiding those for a week (if u eat any) & see if the gas is reduced. if the bromelain works might not need to


thats a simple carb so all good
edit: missed that its 2500 gdu per gram. similar strength to the one i take
Thanks so much for the advice, I've ordered some just now :)

I already don't eat cruciferous veg, onion, garlic, or tomato, but looking at generic information online protein sources such as meat, eggs, dairy are stated to be high sulphur, however they make up a lot of my diet and I feel pretty dependent on them. I also eat potatoes as I thought they were "safer" on this site... do you mean white potatoes?
 
OP
R

rainbowdrops

Member
Joined
Jun 14, 2021
Messages
33
I understand, it can be somewhat difficult to get your doctor to "comply" with requests. Sorry to hear the rifaximin didn't do anything, did any of the other antibiotics have any positive effect? The guy in the interview said he got the most relief from using a combo of Augmentin and ciprofloxacin (though cipro has kind of a bad rap due to side effects/black box warnings). High dose oregano oil is another option to antibiotics that has worked well for me personally.

I don't think all fruits are high FODMAP, for instance orange is a low FODMAP fruit! Honey may be problematic though due to high free fructose, but sugar should be fine I reckon, it's just pure sucrose. An alternative to the strict low FODMAP diet is a "low fermentation diet" that is not as restrictive, but only limits food that are more likely to ferment in the gut. For more info see this PDF: https://www.siboinfo.com/uploads/5/4/8/4/5484269/low_fermentation_diet.pdf

No worries, I think it was an excellent idea of you to ask here for some support and guidance!
I thought I was getting some skin numbness so it was stopped but thinking back I wonder if it was definitely the rifaximin... in any case, I don't think I'll be allowed it again.
Actually, I've managed to get a quick phone call with my GI specialist early tomorrow, so if you can think of anything to ask/suggest then do let me know! I only get to talk to her once in a blue moon.

I have pure oregano oil at home, because I didn't want any capsules with soy oil or anything, and of course I know not to go putting it straight on my tongue, but how much/ how do you think I should take for a chance for it to have an effect?

I've definitely been on cipro a fair bit before, along with metronidazole, but not sure if augmentin is available here.

Will look into the fermentation diet, thanks!
I've heard of some people even reacting to gelatin as apparently that can also be fermented, but I'd be really stuck if that was the case with me :(
 

cs3000

Member
Joined
Jul 27, 2022
Messages
599
Location
UK
Thanks so much for the advice, I've ordered some just now :)

I already don't eat cruciferous veg, onion, garlic, or tomato, but looking at generic information online protein sources such as meat, eggs, dairy are stated to be high sulphur, however they make up a lot of my diet and I feel pretty dependent on them. I also eat potatoes as I thought they were "safer" on this site... do you mean white potatoes?
in that table they dont have sulphate , just mentioned because of sulfur containing amino acids. which in my experience is different

yeh some potatoes have sulphate content and also take longer to digest. one of the foods i noticed can cause the excessive hydrogen sulfide gas so i stopped which is annoying because 1. they're on fleek 2. source of decent potassium . i think red potatos (not sweet, red skin potatos) digest faster so could be better but idk sulphate content
 
Last edited:

frannybananny

Member
Joined
Apr 26, 2018
Messages
703
Good for you. Congratulations.



In terms of foods. Really well cooked food. Simply easier to digest.

Rice pudding
Broths and soups
Eggs
Omelettes
Mashed potatoes
Stews
White fish
Well cooked rooted vegetables
Cooked apples or pears or berries
Ice cream as tolerated
Gelatinous soups
Milkshakes if tolerated


Small, frequent meals vs bigger ones. And get your nutrition from food not liquids.


@Rinse & rePeat is a great chef. Maybe she can guide you to some easy to digest recipes.
OP said they are trying to slow down digestion not speed it up or make it easier.
 

Momma

Member
Joined
Dec 15, 2022
Messages
694
Location
USA
OP said they are trying to slow down digestion not speed it up or make it easier.
Yes. I hope some of my ideas will help her with what she reached out for. Easier means non irritating; not quick.
 
OP
R

rainbowdrops

Member
Joined
Jun 14, 2021
Messages
33
in that table they dont have sulphate , just mentioned because of sulfur containing amino acids. which in my experience is different

yeh some potatoes have sulphate content and also take longer to digest. one of the foods i noticed can cause the excessive hydrogen sulfide gas so i stopped which is annoying because 1. they're on fleek 2. source of decent potassium . i think red potatos (not sweet, red skin potatos) digest faster so could be better but idk sulphate content
Ah, checking that table again sadly some of the veg I have in my garden that I actually like such as carrot, parsnip, radish and of course that potato are on there... I really thought root veg would be a better option, otherwise surely that just leaves me with rice. But I will try the bromelain of course, and see how I go from there.
Seeing as all foods seem to cause gas for me I wouldn't know what was due to sulphate and which weren't, I guess.
 

Peatress

Member
Joined
Dec 1, 2022
Messages
3,556
Location
There
I've craved collagen for years, even after gaining some weight. Originally it was pigs's feet but I do already have quite a bit still nowadays, in various forms. Maybe it's my ehlers danlos? As in, my body doesn't make its own collagen properly, although diet wouldn't fix that.
Another consideration is the amount of antibiotic use, ciprofloxacin being problematic for collagen


It can also block thiamine



It's difficult to know what is due to ehlers danlos and what is due to medication use and malnutrition.
 
Last edited:

Ecureuil77

Member
Joined
Mar 1, 2018
Messages
11
Thanks so much for the advice, I've ordered some just now :)

I already don't eat cruciferous veg, onion, garlic, or tomato, but looking at generic information online protein sources such as meat, eggs, dairy are stated to be high sulphur, however they make up a lot of my diet and I feel pretty dependent on them. I also eat potatoes as I thought they were "safer" on this site... do you mean white potatoes?
Hi rainbowdrops, did you see my message about bromelain and surgery? I think you must have missed it. It's on page 2 of the discussion.
Please take a look. You cannot be too cautious.
 

cs3000

Member
Joined
Jul 27, 2022
Messages
599
Location
UK
Hi rainbowdrops, did you see my message about bromelain and surgery? I think you must have missed it. It's on page 2 of the discussion.
Please take a look. You cannot be too cautious.
aye good shout just incase
in humans 1g with food didn't reduce fibrinogen (for clotting)
https://link.springer.com/article/10.1007/s11655-016-2521-2

but "Bromelain is effective at inhibiting 6-11% of thrombus formation in blood vessels at an oral dose of 60mg/kg bodyweight in rat mesenteric vessels."

& in rats showing inhibited fibrinogen a lot, when injected https://www.thieme-connect.de/products/ejournals/pdf/10.1055/s-2006-960949.pdf they also administered it orally after , but only mentioned a clot dissolving ability with that , rather than preventing clot formation.

but another human one showed mild effect increasing clotting time from 38 to 46 seconds
https://pubmed.ncbi.nlm.nih.gov/10523679/
As to coagulation parameters in plasma of healthy donors, the activated partial thromboplastin time was increased from 38 to 46 sec, leaving prothrombin time and plasminogen unchanged.
&
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6397736/
Studies that evaluated the effect of bromelain on isolated human platelets in vitro showed that bromelain prevents thrombin-induced platelet aggregation [1820]; thus, it has the potential to increase the risk of postoperative bleeding. However, no hemorrhagic disorder has been reported following the use of bromelain in humans.
In our study, bromelain did not increase the frequency or the severity of postoperative bleeding in the case group compared to the placebo group. Only one patient in the bromelain group reported severe bleeding, which occurred during the first night after the surgical procedure and following the use of only one dose of the drug. The bleeding stopped spontaneously and did not recur during the next days; therefore, it cannot be related to bromelain intake. However, care must be taken not to prescribe bromelain for patients with coagulative disorders or for those using anticoagulants. In suspected patients, coagulation tests should be ordered prior to the prescription of bromelain. Bromelain administration (500 mg/day) can effectively decrease pain in patients after FGG. Bromelain has no negative effect on postoperative bleeding and may enhance wound healing.

maybe the injection in rat studies makes a big difference vs taking it orally.
as the oral study showed a milder 6-11% effect like the human study showing 20%.

so likely mild effect, but probably best to stop in advance to be on the safe side
 
Last edited:

Similar threads

O
Replies
82
Views
13K
Back
Top Bottom