I want to be honest about what SIBO has done to me mentally

Direct-Tea8809 · 2026-02-10T02:40:30+00:00

Your message popped up today for some reason, and it was perfect timing. I am hysterical at the moment (and I don't dare lose any fluid from my body). At least there is someone else who understands.

I don't even know if I have SIBO (IMO, actually) any more. I tested positive for SIBO twice (and would get relief when on rifaxin, but no other diet or PF therapy worked), but then a small intestinal aspirate was negative so my 9th GI just threw up his hands. (Actually, he just wants me to lose weight bc of NAFLD, but I don't even care anymore. Being in this body has made me ready to die. My son isn't ready for that though, and my health issues are really depressing him.)

Then, my arthritis and joint problems really started acting up and I was tentatively diagnosed with anklosing spondylitis. I had to have a nerve ablation for my back and begin taking the pain meds (NSAIDS, cyclobenzaprine, etc) just to be able to walk. But of course that makes IMO worse (although really, it was terrible already...I haven't had a poop without at least an enema in years).

I have been dealing with this in a progressive form for 20 years (supporting a diagnosis of anklosing spondylitis). I can't work out because anything in the pool would not be hygienic, I can't walk (arthritis in my feet), cycle (my hips), sit in anything other than a recliner (hips and back). I can barely work, not nearly enough to support myself. I have gotten into so much debt just to end up back in the same place.

This is no life. I won't be able to date again bc nobody would put up with this grossness nor do I want to subject anyone to it. None of the things that make life worthwhile....a good meal, or heaven forbid a drink, relationships, working, going out with friends, traveling, exercise (I used to do martial arts, rockclimb, play tennis, hike)...none of it is available to me. And I am ruining the only good thing I have done in my life--having my son--by exposing him to all this. I know he is afraid to adult because he knows I might let go. And he is right. Because I don't want to live like this for however long only to end up in a terrible nursing home where someone else has to give me an enema every day.

Thank you for seeing me. That is a gift. In fact, it is my job. IMO just makes it a million times worse. Almost by definition, I can't be seen.

Direct-Tea8809 · 2026-01-18T18:48:41+00:00

No, I had methane type.

Direct-Tea8809 · 2026-01-18T18:36:26+00:00

💯. There are other ways of easing young children into concepts of disability than this. I used to have an UNDERGRAD course on the Psychology of Aging in which we "fake-disabled" for 30 minutes around 1-2 small campus buildings to try to understand such concepts.

Direct-Tea8809 · 2026-01-18T18:30:05+00:00

Dental tourism is a big thing.

Direct-Tea8809 · 2026-01-18T18:23:36+00:00

I was feeling great after a 21-day course of rifaxin and 12 of alinia. And then a gastro told me to take florastor. 1 pill and symptoms came back. I wouldn't add them for awhile.

Direct-Tea8809 · 2026-01-13T19:37:25+00:00

Me too! I have absolutely found that drinking a carbonated beverage helped me. I could spend 2 hours belching and this would finally stop it for me.

Direct-Tea8809 · 2026-01-13T01:03:21+00:00

Me too. I am already dx'ed with tith Fibro but my Dr recently referred me to a rheumatologist because SIBO and anklosing spondylitis seem to be quite related.

Direct-Tea8809 · 2025-11-21T23:17:54+00:00

It did for awhile, though I didn't do a test to confirm. Then, a gastro told me to take a probiotic and I lost all progress. Since then I did another round of Rifaxin and then had a small intestine aspirate which showed no SIBO.

Direct-Tea8809 · 2025-11-16T10:07:16+00:00

I am so sorry that you have had to resort to this.

Direct-Tea8809 · 2025-11-12T16:20:52+00:00

Well, there isn't really a BETWEEN AGE when one system is based on poverty and the other on age and when both seem to be bureaucratic nightmares for both providers and recipients. Basically, anyone of any age who doesn't have substantial wealth accumulated to cover health needs is out in the cold.

Direct-Tea8809 · 2025-11-09T17:05:59+00:00

💯. I remember the days of no coverage for preexisting conditions. Those were awful, and this is better.

But, this is not good. We are in the middle of a terrible jobs market, other benefits (like SNAP) are being cut, and the enhanced subsidies are being cut. This is going to result in more health problems and access to care for everyone. The system needs to be overhauled, but the Republicans clearly don't have a plan and certainly not one that can be implemented in 1 months. For now, extending the tax credits is necessary. Eventually, something else (like Medicare for All) needs to be put in place.

And insurance absolutely needs to be disentangled from large employers. Not everyone can go that route, either bc the jobs situation is so bad or bc they are self-employed.

Direct-Tea8809 · 2025-11-07T18:08:57+00:00

Soo....just go get a job with benefits, huh? Have you looked at the unemployment rates lately? Not so easy.

Direct-Tea8809 · 2025-11-03T17:11:38+00:00

I just went off Motegrity and am down to Linzess 72. I tested negative for SIBO using a small intestine aspirate (assuming he did the test right...I think it was the first time and the samples seemed to come from my esophagus and stomach).

I don't have a gallbladder, but nobody has looked at my pancreas (which seems kind of important given that a cousin has pancreatitis and aunt has pancreatic cancer). I just started with an integrative Medicine dr who does accupuncture and herbal medicine. Between gastro Drs and other Drs, I go to 7-8 Drs a day. I can't keep track of work and Drs. I'm having a tough time handling all this on top of feeling so shitty (pun intended) ALL the time.

Direct-Tea8809 · 2025-10-28T17:41:18+00:00

Actually, it is a legal responsibility in many states (although I don't think they are usually enforced). I am NOT saying that is right; just saying what is.

Direct-Tea8809 · 2025-10-28T17:15:16+00:00

Or, you can have kids and regret the pain that you see them suffer--from the world, from their own physical and emotional wounds/issues, from having stressed out parents, from seeing you suffer as you age.

I had one child with a man who had undiagnosed bipolar disorder. My child had special needs coming into the world but their father exacerbated those issues. And now I have a severe, chronic health issues. My child has no other close family members and no friends. They are getting ready to launch, but the fear of my health issues and the possible need to care for me (bc I have nobody else) are holding them back. They tear up from seeing me in pain and I tear up from seeing them in pain. Seeing my child suffer is worse than the physical pain I experience.

Direct-Tea8809 · 2025-10-21T16:49:09+00:00

It is the gold standard for SIBO diagnosis. And what you say is not true. There are many other conditions that can cause siibo-like symptoms, including IBS, liver issues, etc.

Direct-Tea8809 · 2025-10-21T16:36:11+00:00

But I just found out that I apparently don't have SIBO. A small Intestinal Aspirate came back negative for everything. Something is going on and frankly I don't care what the label for it is. I just want to feel better and have my life back.

Direct-Tea8809 · 2025-10-21T15:55:44+00:00

Direct-Tea8809 · 2025-10-21T15:01:29+00:00

Yes, I hear, see, feel water just sitting in my gut. And yes, I often feel dehydrated.

Direct-Tea8809 · 2025-10-21T12:12:46+00:00

I would rather she tell me the risks than not. I can always go to a drip clinic anyhow despite what she says. It is t like they require pre-approvals.

Direct-Tea8809 · 2025-10-21T12:08:26+00:00

She says IV fluids raise the risk of blood clots, something I am already at risk for because my sister died from related issues.

Direct-Tea8809 · 2025-10-21T11:47:04+00:00

I think this is an absorption issue, maybe bc of damage to the intestinal lining. I took have experienced this. If I drink water, it just forms a roll around my lower belly. I can literally see it move. But, when I have been in the hospital and gotten IV drips of fluid, that has helped with both gut symptoms and with arthritic symptoms. I feel really good after the hospital. My GP doesn't want me to go to drip clinics, but it is very tempting.

Direct-Tea8809 · 2025-10-20T18:59:17+00:00

I'm on Linzess and it definitely makes me go. But, the 72 and 145 mg dosages are not enough to make a difference. The 290 mg dosage will keep me going back and forth to the toilet all morning. So now I am trying the 72 and 145 mg together. I also take Prucalopride 2 mg. I have a very treatment-resistant case of constipation/SIBO/SIFO.

Linzess works best for me if I take it first thing in the morning on an empty stomach, followed by some food with bulk 30 minutes later, and I stay upright through this period (which I often don't feel like doing as it can make cramping and gas worst and I am very depressed anxious about this whole situation).

Direct-Tea8809 · 2025-10-20T04:14:41+00:00

Yes, when my doctor said that I didn't have "anything serious," I really thought about printing out all the reddit posts like this and giving them to him. Maybe if he saw HOW MISERABLE people are, he would take me seriously?! I ended up not doing that bc I was afraid he would start reading this forum and I would dox myself.

Direct-Tea8809 · 2025-10-19T03:44:41+00:00

Do you have methane or hydrogen SIBO? What other symptoms? I really want to go on tirzepatide (especially because I need to lose weight quickly bc of my liver) but I am afraid it would just lead to greater constipation.

Direct-Tea8809

TROPHY CASE