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

[rainbowdrops]

First, I need to ask that people don't simply tell me I shouldn't have had surgery in the first place. Hindsight is a wonderful thing, and I was young and trusting of my surgeon/ doctors. I now have little to no confidence in my own decisions and was diagnosed with PTSD, anxiety and depression at various points due to all my hospital experiences and failed surgeries, and I aready live with soul-crushing regret. I just want to find some semblance of normality, but I feel like I am beyond broken. Please be kind.

I'm 32/F, living in the UK. I've been reading posts here for a while, but couldn't bring myself to seek much help because I felt overwhelmed by the number of issues I was dealing with, and didn't know what I should be prioritising.

I did at least manage to resolve 13 years of hypothalamic amenorrhoea by eating more, gaining some weight and trying to develop better body issues. I had been told by my OBGYN doctor that it couldn't be done, but I wouldn't take no for an answer.

I had my large bowel completely removed at 18 due to ulcerative colitis, as I had lost too much weight to start my uni degree (which also kicked off my hypothalamic amenorrhoea), and so resorted to drastic measures. Some of the remaining ileum was made into an internal "j-pouch" to act as a reservoir and stand in somewhat for the colon. I seemed OK for a while but in my 3rd year I got very weak and it turned out I had a fistula from my anastamosis site had formed and I had multiple surgeries to attempt to repair it, but most failed and I had to stop my studies. Eventually one surgery seemed to work but it meant losing more small bowel as the j-pouch was remade. I then had another fistula, this time to the vagina. I've spent the past few years going through so many surgeries to attempt to repair, but each time has been soul-destroying, as the fistula would open up again. I don't seem to have crohn's disease but it does look like a have a form of ehlers danlos, which may be contributing. It also makes my bowel very mobile, and while waiting for my "main" surgeries, due to the NHS delays and covid I have had to have a lot of operations in the interim to fix my ileostomy (which I need as long as my fistula is active), which would often retract inwards, cease to work or block, or even prolapse all the way out, like a scene from a horror film.

I thought I'd found some relief with cutting out carbs a few years ago, and I think some aspect of it did help, but I developed campylobacter poisoning one day and since then I've had the most horrendous gas no matter what I eat. After eating I have to lie on my side for the build-up of gas to come out, and it's brining me down so much, let alone the fact that the gas is so loud and I have no control over it. I had a negative hydrogen breath test on the NHS but haven't been able to find much other help. I did go on a course of rifaximin but thought I was getting numbness so it was stopped. The low carb couldn't be continued indefinitely because I was developing real fears about eating carbs and my periods were not coming back, so I knew I needed to reduce the stress on my system. Also, my fat digestion has got really bad after so many bowel resections that if I didn't have carbs I wouldn't have a source of energy. I also seem to get vaginal thrush during my cycle.

I'm at such a loss as to what I should eat. I need something to slow my bowel down, i.e. starch/soluble fibre, or else I'm constantly losing fluid and everything eaves the ileostomy too fast (except the gas, which stays building up). I know well-cooked starch with coconut oil is sometimes recommended for those without SIBO, but I don't know at all if this rules me out. I can't get testing even privately because I'm told the results would be unreliable with me having a stoma (?). I don't want to cut out carbs again because even in my low carb times the gas was very bad post-campylobacter, and I've spent years learning to like carbs again, which helped bring my periods back.

In less than a month we'll be trying for probably my last shot at reconnecting my small bowel together, and I'm terrified that all the gas I get now will force the fistula open again, bringing years and years of effort to nothing. I really don't think I have the strength to do this over and over; my life has been on hold for over a decade and I'm so tired of it.

Does anyone have any idea of what I can eat to subdue all this gas and calm my tummy down? I get the feeling there are mechanical issues but my doctors can't help me at all (I'm still waiting 18 moths and counting for a phone appointment). Low fodmap diets prohibit honey and a lot of fruits, so that confuses me even further.

Thanks

 

[Peater]

I am so very sorry to read about everything you've endured. I wish I was knowledgeable enough to offer more than my sincerest thoughts of recovery for you.

All I can think of is Camphosal, by haidut, but I have no idea at all if it is suitable for you, only that it 'disinfects' the digestive system.

CamphoSal - Liquid Camphoric Acid + Salol

As many readers know, Peat has written extensively on the benefits of antibiotics and on keeping the GI tract as free of bacteria as possible. Bacterial overgrowth in the colon alone is already a problem due to the production of endotoxin, but in hypothyroid people this bacterial overgrowth can...

raypeatforum.com

 

[gaze]

high dose progesterone may help everything, including the depression and trauma, a carrot salad may help bind the excess gas and lower inflammation, emodin from cascara sagrada may help, aspirin and vitamin k2 may help stabalize the inflammation. orange juice is relatively easy to digest and can provide energy.

 

[Momma]

I did at least manage to resolve 13 years of hypothalamic amenorrhoea by eating more, gaining some weight and trying to develop better body issues. I had been told by my OBGYN doctor that it couldn't be done, but I wouldn't take no for an answer.

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.

 

[Xin]

Wouldn't getting an ileostomy instead J-pouch help?

I've done a lot of research on this subject and it seems like the Ileostomy is always better than the Pouch in terms of complications and quality of life in general.

 

[Rinse & rePeat]

Does anyone have any idea of what I can eat to subdue all this gas and calm my tummy down? I get the feeling there are mechanical issues but my doctors can't help me at all (I'm still waiting 18 moths and counting for a phone appointment). Low fodmap diets prohibit honey and a lot of fruits, so that confuses me even further.

Thanks

What an awful situation for you @rainbowdrops. Why do they say you can’t have honey, because I sure think a high numbered Manuka honey would be what I would go for.

 

[alephx]

Sorry to hear the issues you are dealing with, hope you find some improvement in our suggestions.

Mine is carrot salad, all the way. Make sure you're getting enough B vitamin and avoid iron-fortified bread/wheat/flour at all cost, I believe many gut issues come from it. Natural bread is a wonder for B vitamin and B vitamin flora while iron makes the bad bacteria grow. That's why milk has lactoferrin, to bind the iron and protect the baby

 

[cs3000]

I did at least manage to resolve 13 years of hypothalamic amenorrhoea by eating more, gaining some weight and trying to develop better body issues. I had been told by my OBGYN doctor that it couldn't be done, but I wouldn't take no for an answer.

I developed campylobacter poisoning one day and since then I've had the most horrendous gas no matter what I eat. had a negative hydrogen breath test on the NHS but haven't been able to find much other help. I did go on a course of rifaximin but thought I was getting numbness so it was stopped. The low carb couldn't be continued indefinitely because I was developing real fears about eating carbs and my periods were not coming back, so I knew I needed to reduce the stress on my system. Also, my fat digestion has got really bad after so many bowel resections that if I didn't have carbs I wouldn't have a source of energy. I also seem to get vaginal thrush during my cycle.
turned out I had a fistula from my anastamosis site had formed and I had multiple surgeries to attempt to repair it, but most failed and I had to stop my studies. Eventually one surgery seemed to work but it meant losing more small bowel as the j-pouch was remade. I then had another fistula, this time to the vagina. I've spent the past few years going through so many surgeries to attempt to repair, but each time has been soul-destroying, as the fistula would open up again. I don't seem to have crohn's disease but it does look like a have a form of ehlers danlos, which may be contributing. It also makes my bowel very mobile

I'm at such a loss as to what I should eat. I need something to slow my bowel down. I don't want to cut out carbs again because even in my low carb times the gas was very bad post-campylobacter, and I've spent years learning to like carbs again, which helped bring my periods back.

In less than a month we'll be trying for probably my last shot at reconnecting my small bowel together, and I'm terrified that all the gas I get now will force the fistula open again, bringing years and years of effort to nothing.

Does anyone have any idea of what I can eat to subdue all this gas and calm my tummy down? I get the feeling there are mechanical issues but my doctors can't help me at all (I'm still waiting 18 moths and counting for a phone appointment). Low fodmap diets prohibit honey and a lot of fruits, so that confuses me even further.
Thanks

. worth checking out bromelain, could work well (extracted from pineapple juice)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8778819/

some experimentation to find the right dose as it can help motility in constipation, but also prevent diarrhea if its driven by pathogens because it merks them, through cleaving their surface proteins
noticeable effect could kick in by 1-2 weeks
could test 200mg x2 a day at first then x3 if goes well (empty stomach / between meals, Time is a good uk brand without any dioxide fillers)

. also best to avoid onions / sulfur rich foods broccoli cabbage etc ,
initially until youve cleaned out the gut. as they feed some high gas producing bacteria assuming they are in your small intestine. (i know you mentioned negative breath test but i dont think hydrogen sulfide gets picked up on those only hydrogen so its insufficient)

campylobacter consumes sulfur & hydrogen and produces hydrogen sulfide. doesnt feed on carbs
bromelain is a mix of enzymes that contain sulfur amino acid , but should be irrelevant considering action on the bacteria they hit

numerous therapeutic effects (Figure 3), including antimicrobial [16,49,50], anti-inflammatory [30,51], anticoagulant [52], anticancer [53,54], antiplaque [55,56], and antiulcer properties [50]. Furthermore, it is also beneficial for wound healing [57,58,59,60], dermatological disorders [19], post-surgery recovery, enhanced antibiotic absorption [1], treatment of osteoarthritis [61], sinusitis and diarrhea [17]. Recently, bromelain is suggested as an antiviral agent against COVID-19 due to the inhibition of different versions of SARS-CoV-2 [62]. [Bromelain treatment has a characteristic of "attacking" mainly necrotic tissue, while healthy tissue seems unaffected]. Some of its therapeutic mechanisms are discussed below.

bromelain may hinder bacterial growth by hydrolyzing some peptide bonds in the bacterial cell wall [14]. When bromelain digests the surface proteins, the cell wall is damaged, allowing the cell to leak, swell, and open [1]. Bromelain also inhibits the growth of some bacteria by preventing bacterial adhesion to specific glycoprotein receptors on the surface [1,48]. Furthermore, bromelain inhibits enterotoxin production of Escherichia coli (E. coli) and prevents diarrhea caused by E. coli [17]. Bromelain shows antimicrobial activity against both Gram-positive and Gram-negative bacteria, including E. coli, Aggregatibacter actinomycetemcomitans (A. actinomycetemcomitans), Porphyromonas gingivalis (P. gingvalis), Streptococcus mutans (S. mutans) [56], Bacillus subtilis (B. subtilus), (S. aureus), Pseudomonas aeruginosa (P. aeruginosa), Proteus spp., Acinetobacter spp., … [1,63]. Additionally, synergistic use of bromelain and antibiotics increases the antibacterial effect due to increased absorption of antibiotics induced by bromelain, leading to better drug distribution in the microbes [1,17]. Bromelain has also been reported to act as an inhibitor of fungal pathogens.

Bromelain is well tolerated and considered a safe nutraceutical with no serious adverse effects [30,65]. It has already received FDA approval for clinical use as an orally administered anti-inflammatory and anticoagulant therapeutic [52]. Its oral administration is well tolerated even in high doses (up to 3 g/day) for prolonged therapy periods, even up to several years [11]. It has a very low level of toxicity [48]. The lethal dose (LD50) for intraperitoneal administration is 37 mg/kg and 85 mg/kg for mice and rabbits, respectively, and 30 mg/kg and 20 mg/kg for intravenous administration [65], with no immediate toxic reactions [25]. Daily oral administration of 500 mg/kg of bromelain did not provoke any alteration in food intake, growth, histology of the heart, kidney and spleen, or hematological parameters in rats [25]. After daily bromelain administration up to 750 mg/kg no toxicity was observed in dogs after 6 months [17]. No relevant side effects have been observed in humans at doses of up to 2000 mg/kg, even with prolonged oral administration [65]. However, clinical trials have reported some side effects, mainly gastrointestinal (i.e., diarrhea, nausea and flatulence), headache, tiredness, dry mouth, allergic reactions, and bleeding risk, especially in individuals treated with other anticoagulant drugs [17,61,65].

https://journals.asm.org/doi/10.1128/iai.62.9.3773-3779.1994

Three-day-old monolayers were inoculated with Campylobacter jejuni 81-176. Cell association and invasion were inhibited by 0.3 and 0.5 M concentrations of various sugars, including D-glucose, D-mannose, and D-fucose. However, there was no inhibition with the corresponding L-sugars, indicating physiological specificity.
The inhibition of cell association with phloridzin was less pronounced. Furthermore, there was no inhibition with cytochalasin D, vincristine, or vinblastine. Treatment of cells with bromelain also caused reduction in the number of C. jejuni binding to cells. A nonmotile aflagellate variant of C. jejuni also showed reduced invasion. The results of this study are consistent with energy-dependent invasion mechanisms.

could help

 

[rainbowdrops]

I am so very sorry to read about everything you've endured. I wish I was knowledgeable enough to offer more than my sincerest thoughts of recovery for you.

All I can think of is Camphosal, by haidut, but I have no idea at all if it is suitable for you, only that it 'disinfects' the digestive system.

CamphoSal - Liquid Camphoric Acid + Salol

As many readers know, Peat has written extensively on the benefits of antibiotics and on keeping the GI tract as free of bacteria as possible. Bacterial overgrowth in the colon alone is already a problem due to the production of endotoxin, but in hypothyroid people this bacterial overgrowth can...

raypeatforum.com

Thanks, if anyone in the UK has purchase and used this for GI issues, please let me know

 

[rainbowdrops]

high dose progesterone may help everything, including the depression and trauma, a carrot salad may help bind the excess gas and lower inflammation, emodin from cascara sagrada may help, aspirin and vitamin k2 may help stabalize the inflammation. orange juice is relatively easy to digest and can provide energy.

I'm under the assumption that I've managed to normalise my hormones a little, as at least I've had periods again since late last year. Not sure if I should mess with it by adding more progesterone, any thoughts? I have some utrogestan pessaries I was prescribed due to my low bone mass when I had HA, to be taken with oestrogen patches, but HRT was making me feel pretty lousy with side effects. Would exogenous progesterone suppress my own endogenous production at all?

I intermittently try the carrot salad but I think the raw carrot irritates my GI tract and causes more gas. Is there any way to make it more tolerable?

Emodin is pretty expensive when I look it up, how much and how long would I need to take it for?

I tried aspirin a few months ago at very low dose but got petechiae on my legs so got worried and stopped. Maybe I didn't have enough K2?

Fruit juices tend to right through me, would love to drink more juice though Could it be the fructose?

 

[Jonk]

Thanks, if anyone in the UK has purchase and used this for GI issues, please let me know

I'm in Sweden, but I have tried it. No issues ordering from Ideallabs to Sweden anyway. I would say it's pretty mild in it's effect, but I've read others having more success with it.

If I were in your shoes I would contact someone like Mike Fave, I think he goes by the user @CLASH. I haven't hired him myself but he's had quite severe gut issues himself. He is a nurse, and is very much aligned with the pro-metabolic approach to health. Not that I'm in a position to give you his resumé lol, but if I were in your shoes with potentially very accute issues, I would definitely contact someone who has a lot of experience in the field. You can check him out on the Energy Balance podcast on Youtube etc. Seems like a really knowledgeable guy. Look him up.

 

[TradClare]

could you find a dairy farmer and get raw milk? I recall a story about a farmer who had to live on milk since swallowing lye as a child and having an extremely constricted esophagus. I know it's the other end, but my point is he lived a long and healthy life just having a quart of raw jersey milk at for each meal as he was unable to swallow any other food. I imagine you could begin this way at least and maybe go from there?

 

[rainbowdrops]

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.

Thank you Momma, low insoluble fibre seems least likely to block my ileostomy. Do you think carb restriction would help or should I just be plentiful with the starches? Of course I can have them with coconut oil.

Apples and pears are supposed to be high in sorbitol, but I really want to be able to eat some fruit. I'm craving gummy candy like crazy, so maybe my body feels it needs the fruit sugar?

 

[rainbowdrops]

could you find a dairy farmer and get raw milk? I recall a story about a farmer who had to live on milk since swallowing lye as a child and having an extremely constricted esophagus. I know it's the other end, but my point is he lived a long and healthy life just having a quart of raw jersey milk at for each meal as he was unable to swallow any other food. I imagine you could begin this way at least and maybe go from there?

Hi, I've bought local raw milk before but it made me very gassy. A shame because I really crave milk and I could do with the cacium

 

[rainbowdrops]

. worth checking out bromelain, could work well (extracted from pineapple juice)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8778819/

some experimentation to find the right dose as it can help motility in constipation, but also prevent diarrhea if its driven by pathogens because it merks them, through cleaving their surface proteins
noticeable effect could kick in by 1-2 weeks
could test 200mg x2 a day at first then x3 if goes well (empty stomach / between meals, Time is a good uk brand without any dioxide fillers)

. also best to avoid onions / sulfur rich foods broccoli cabbage etc ,
initially until youve cleaned out the gut. as they feed some high gas producing bacteria assuming they are in your small intestine. (i know you mentioned negative breath test but i dont think hydrogen sulfide gets picked up on those only hydrogen so its insufficient)

campylobacter consumes sulfur & hydrogen and produces hydrogen sulfide. doesnt feed on carbs
bromelain is a mix of enzymes that contain sulfur amino acid , but should be irrelevant considering action on the bacteria they hit

https://journals.asm.org/doi/10.1128/iai.62.9.3773-3779.1994

could help

I'll look into this, thank you. If I can at least start some bromelain before the surgery it might have some effect.

I was under the impression that the campylobacter reeked havoc on my small bowel (was bleeding etc), but then cleared by itself, however the toxins released damaged my enteric nervous system and now I'm all messed up. So I thought that the issue could be long-term dysmotility in the absence of the pathogen. Are you saying the campylobacter is still present? It was late 2020 when I got sick.

And other gut cleaners recommended? I have oregano oil here but it's pure, not in capsules. Also peppermint oil.

 

[rainbowdrops]

I

Wouldn't getting an ileostomy instead J-pouch help?

I've done a lot of research on this subject and it seems like the Ileostomy is always better than the Pouch in terms of complications and quality of life in general.

I actually have an ileostomy right now, and have had them on and off for many years. However mine are prone to retracting and blocking, which necessitates further surgery and a huge amount of stress and pain. The gas is also utterly humiliating, I'm totally fed up with it. Should my reconnection surgery fail then the only option is to go back to the ileo but I don't have unused space left on my abdomen for one.

 

[rainbowdrops]

What an awful situation for you @rainbowdrops. Why do they say you can’t have honey, because I sure think a high numbered Manuka honey would be what I would go for.

I was under the impression honey is a fodmap due to high fructose?

I'd appreciate any recommendations for recipes! I crave gummy sweets and marshmallows constantly but don't know if my body is craving sugar because it needs it or due to stress, or candida or something. Is there a way to get sugar in without it upsetting my tummy?

 

[Jennifer]

could you find a dairy farmer and get raw milk? I recall a story about a farmer who had to live on milk since swallowing lye as a child and having an extremely constricted esophagus. I know it's the other end, but my point is he lived a long and healthy life just having a quart of raw jersey milk at for each meal as he was unable to swallow any other food. I imagine you could begin this way at least and maybe go from there?

This.

@rainbowdrops, I’m very sorry for your suffering. GI disorders are terrible to live with. I’ve had GI issues ever since my spine collapsed and squished my intestines so that I can’t handle a lot of bulky foods now without suffering painful trapped gas in my colon, severe cramping and gastritis. Given your lack of a colon, have you tried getting the majority of your calories from low fiber foods such as milk, fresh cheese, meat/gelatinous broth, coconut water, fruit juice gummies and/or juice with collagen in it? A milk fast is my go-to when my intestines get wonky on me and like you, juice used to go right through me until I started adding marine collagen to it and making fruit juice gummies with it. I’m not sure if it was due to the fruit acids irritating my intestines or the lack of bulking to slow it down, but the collagen/gelatin worked.

 

[Momma]

Thank you Momma, low insoluble fibre seems least likely to block my ileostomy. Do you think carb restriction would help or should I just be plentiful with the starches? Of course I can have them with coconut oil.

Apples and pears are supposed to be high in sorbitol, but I really want to be able to eat some fruit. I'm craving gummy candy like crazy, so maybe my body feels it needs the fruit sugar?

Definitely stay away from the fruit fibers. A side of applesauce just to test when you are ready. But, my hope is you can begin to tolerate more and more easy to digest carbs. Yes. Eating more carbs with your protein and fat is ideal.

White sugar? Eat foods even with white sugar. The extra calories will be good for you and help those cravings. Example: room temperature milk (as noted above) with added sugar. Puddings. Custards.

 

[rainbowdrops]

This.

@rainbowdrops, I’m very sorry for your suffering. GI disorders are terrible to live with. I’ve had GI issues ever since my spine collapsed and squished my intestines so that I can’t handle a lot of bulky foods now without suffering painful trapped gas in my colon, severe cramping and gastritis. Given your lack of a colon, have you tried getting the majority of your calories from low fiber foods such as milk, fresh cheese, meat/gelatinous broth, coconut water, fruit juice gummies and/or juice with collagen in it? A milk fast is my go-to when my intestines get wonky on me and like you, juice used to go right through me until I started adding marine collagen to it and making fruit juice gummies with it. I’m not sure if it was due to the fruit acids irritating my intestines or the lack of bulking to slow it down, but the collagen/gelatin worked.

Raw milk made me very gassy, regular milk seems the same. Maybe it's the lactose? I wish I could pinpoint things that I could tolerate more but literally anything I eat gives me the excessive gas discomfort, even previously totally OK foods such as meat. I think the campylobacter, plus of course all the surgeries, messed up my motility and I'm at my wit's end trying to find some way to normalise things. I will try to make more fruit gummies though.