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Discussion Starter · #1 · (Edited by Moderator)
Hi!

This is the first time I am talking to other people suffering from this, kind of therapeutic, most people don't understand how much this sucks.

Honestly, I am not sure I suffer from IBD-D and wanted another opinion/direction.

(I've done pretty much anything I could think of with the doctors, crohns check, inflammation markers in blood, stool tests, PCR tests, Geneva PCR test, dieting, various antibiotics)

My (current) symptoms are:

  • Toilet approx. 5-7 times a day, its not exactly diarrhea though, just very sticky poo. It always sticks to the edge of the toilet. Sometimes smaller / bigger. Luckily for me, its not a surprise and I have time to get to a toilet.
  • Brain-fog is a constant, I always wake up tired, regardless of any thing prior. Honestly, I feel like I've lived with a 60-70% engine for the last couple of years I forgot what it means to be at a 100%.
  • Food - Doesn't really seem to affect much, I can eat Pizza, Sweets, and its pretty consistent. Doesn't seem to overly affect it. (I don't do these in excess, I eat generally fairly healthy)
  • Pain - I have no pain at all, which to my understanding is somewhat odd considering doctors say its IBS.
  • Mucus - I always have mucus after I eat, I don't think its normal. Like a semi-wet cough.
  • Tongue - Thick white coat, always present

Last week I started doing daily apple-vinegar enema (approx 1 litter w/ 3 tbsp of apple-vinegar) , once I managed to hold it for 15 minutes (took a few tries) I felt the best I've felt in 3 years (Last time was when taking antibiotics). Some things came up which weren't pretty (like a mucus-ball), I am guessing some old-fecal-matter that got stuck inside. It was as as if my engine is now running at 100%.

I tried to stop the enema to see how I would react and soon after I started slipping back, I know the symptoms, first the stomach starts signaling something "heavy" is going on. Then I start to feel emptiness/depressed, slowly it creeps up and I just feel like this life is pretty much on the edge of worth living. I get into this "empty stare" sort of thing. It was a horrible day after feeling so great. Last time I just charged through it till it "stabilized" and I just did the best I could. Has anyone experienced something like this? The depression kicks in so fast, within a couple of hours.

(I took inspiration from this post regarding enema - https://www.ibsgroup.org/forums/topic/159448-the-cure/ )

Here's my issue though, I am unsure how to move forward? Obviously I felt great so it has something to do with what's going on in my large intestine (most likely).
It could also be that "something" else is causing the digestion to misbehave and clearing it makes me feel better, who knows..

I am a little worried about doing 4x daily x 1 month enemas as it says in the post.

My main questions -

  • Do you guys also suffer from this creeping-depression? Its like my mind is just free-falling the dopamine levels (or some other hormone).
  • Is IBS-D a likely scenario considering how much the enema helped? No pain? I am not sure it matters much, it could easily be classified as IBD which really doesn't change much.
  • Do you have any experience with enema protocols that might help? Some details would be great as I worry about taking such medical liberty on my own.
  • I am considering trying a probiotic enema, any recommendations?
  • I used to take adrenal-pills and it really helped though made it question if its a good idea to take it long time. (Off the shelf)
  • Perhaps interesting, usually after going to the bathroom / having bowel movement I would feel much better, is this common?

Thank you for reading this,

Wishing you gut warriors the best of health, its a tough condition.

<3
 

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Hello nixaboo

It's good that you visited a doctor, because that way, you can eliminate other possible serious problems. I think it's always better to visit a specialist (gastroenterologist).

You don't mention anything about food allergies or food intolerance. Do you know if you have anything like that?

I have no experience with enemas. but to tell you the truth, I'm a bit concerned about using them so often.

There are many alternative treatments described in this forum. Why don't you start from something "lighter" ?

The depression - brain fog - tiredness you describe, could be due to vitamin deficiencies, which are often connected with IBSD. Check your vitamin levels and especially D3 and B12.

The semi-wet cough after eating could be due to stomach acid reflux. Did you mention that to your gastroenterologist?

Maybe you won't be able to completely cure this, but you could control it up to a point.

Hope I could be of a little help.

Good luck!!!
 

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Discussion Starter · #3 · (Edited by Moderator)
Hello nixaboo

It's good that you visited a doctor, because that way, you can eliminate other possible serious problems. I think it's always better to visit a specialist (gastroenterologist).

You don't mention anything about food allergies or food intolerance. Do you know if you have anything like that? (also there's no bitter taste or anything in my mouth so I suspect its not acid-reflux, maybe wrong)

I have no experience with enemas. but to tell you the truth, I'm a bit concerned about using them so often.

There are many alternative treatments described in this forum. Why don't you start from something "lighter" ?

The depression - brain fog - tiredness you describe, could be due to vitamin deficiencies, which are often connected with IBSD. Check your vitamin levels and especially D3 and B12.

The semi-wet cough after eating could be due to stomach acid reflux. Did you mention that to your gastroenterologist?

Maybe you won't be able to completely cure this, but you could control it up to a point.

Hope I could be of a little help.

Good luck!!!
Hi!

Thanks for the response.

I visited several Doctors/Specialists/all sorts of things, had CT-scan to rule out cancer, breath test for crohn, milk-intolerance test, blood tests, stool tests, PCR tests, calprotectin. They ran out of ideas and basically said this is IBS, deal with it. I will tell my gastro about the mucus next time, its not a lot though, just makes me wonder.

Oddly enough, the nutritionist they sent me to (which has many IBS cases) said it doesn't look like IBS to her.

I don't believe I have any food allergies, at least nothing I have noticed - I never found any link between what I eat and how I feel later on.

I did do bloodtests and its mostly normal aside from some minor B12 deficiency (which I take B12 for) - nothing to worry about though.

I totally agree regarding the enemas being a nuclear-option so to speak and I worry about it but nothing else seems to help sadly :/
It took me 5 years of this to even consider it as an option..

What kind of lighter options would you recommend ?
 

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Hi!

Thanks for the response.

I visited several Doctors/Specialists/all sorts of things, had CT-scan to rule out cancer, breath test for crohn, milk-intolerance test, blood tests, stool tests, PCR tests, calprotectin. They ran out of ideas and basically said this is IBS, deal with it. I will tell my gastro about the mucus next time, its not a lot though, just makes me wonder.

Oddly enough, the nutritionist they sent me to (which has many IBS cases) said it doesn't look like IBS to her.

I don't believe I have any food allergies, at least nothing I have noticed - I never found any link between what I eat and how I feel later on.

I did do bloodtests and its mostly normal aside from some minor B12 deficiency (which I take B12 for) - nothing to worry about though.

I totally agree regarding the enemas being a nuclear-option so to speak and I worry about it but nothing else seems to help sadly :/
It took me 5 years of this to even consider it as an option..

What kind of lighter options would you recommend ?
It is strange that you can't relate any specific food to IBSD outbreaks. The "usual" thing is to have some trigger foods that most of us have eliminated (or greatly reduced) from our diets. I.e, I avoid milk, milk cream, eggplants, raw spinach, beets, too much alcohol, etc.

What has worked for me in the past and for a specific amount of time, but has not cured me -of course- are the following :

a. A combined probiotics mixture (https://www.ibsgroup.org/forums/topic/353214-4-combined-probiotics-vs-ibs-d/)

b. Echinacea (https://www.ibsgroup.org/forums/topic/352652-echinacea-effect-on-gut-bacteria/)

c. Butyric Acid tablets (https://www.ibsgroup.org/forums/topic/357498-butyric-acid-tablets/)

d. Elimination of sugar from my diet

Many things that have worked for other people, had zero (and sometimes negative) effect on me. So, I think it's a unique situation for everyone.

Problem is that most GIs simply say, as you mentioned above ... "this is IBS, deal with it"

That's why this forum is a godsend for IBS sufferers, because we "deal with it" and exchange ideas and methods.

Stay strong and keep searching!!
 
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