Dyssynergistic Defecation

Posted by jgallegos1123 @jgallegos1123, Jun 21 8:37pm

Hey all, recently found this. It's wonderful to connect with others.

So long story ahead; sexually abused as a kid, was diagnosed with constipation years afterward, been dealing with it since I was 12ish. A few years ago, I Deployed (im in the military) and had the worst case of constipation ever. afterward non stop pain and discomfort.

Fast forward. I return home, swap GIs. Get 3 hemmeroid bandings, no luck, still pain. Get menometry, sigmoidoscopy, and defectography done - dyssynergistic defecation type 3.

I started physical therapy, and that was nearly 2 years ago. I'm still struggling; hered everything I've done:
- tried a variety of diets
- tried linzess, trulance, military, miralax, you name it.
- Physical Therapy with internal work for 2 years now
- Biofeedback Therapy once a month, the closest place was 3 hours away, for 6 months - I could paddle the balloon, but still couldn't "feel" it
- paid for a $500 pelvic floor at home program
- dialators, wands, all sorts of exercise equipment, and at home therapy bed

Currently, I struggle with my pelvic floor freaking out with every little bit of stool and gas. I do an hour of at home therapy, wand therapy, and dialation, im currently on 290 linzess and it basically gives me Diahrrea. I'm at my wits end, about to ask for an Ostomy to take the stool and gas out of the equation; any help?

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Oh gosh I'm so sorry. I've been on a somewhat similar path with lifelong issues with C. On 290 mg Linzess but need to also use Miralax and senna, and still there are issues.... I'm about to try a new med but more about that in a minute.

Among the tests that you had done, did you have a sitz marker study? I understand they've already diagnosed dyssynergic defecation, but did they rule out slow transit throughout your entire GI tract?

I recently was diagnosed with an autonomic nervous system problem that is notorious for causing GI problems including impaired motility. After I brought up microbiome questions at my last GI visit, my GI doctor ordered a SIBO/IMO (small intestinal bacterial overgrowth/intestinal methanogen overgrowth) breath test and I was off the charts positive for IMO, methane-SIBO. There's a vicious causal loop here because slow transit sets up the gut for a bacterial imbalance, and methane is known to further slow down transit.

So this is just to say make sure your doctor has ruled out all possible issues that could be involved in your case. My IMO is not the explanation for my lifelong slow transit issues, but it sure hasn't been helping the situation. I don't think my GI doctor would have ordered the breath test had I not brought up questions about food absorption/intolerance, and microbiome problems that might be involved.

And if all your tests have been focused on just colon (large intestine) issues, what about possible small intestine issues?

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If it is SIBO you can try herbal OTC meds. Oil of oregano, berberine ( which can cause diarrhea, so stay close to toilet) and neem. They have been shown to work better than the antibiotics they prescribe for it, which insurance won’t pay for and is stupidly expensive.
Also SIBO has been known to return and have to be treated all over again.

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Not sure if a Sphincterotomy would be something you would consider. I had a nightmare trip to the Mayo 2 years ago and they refused PT, advised against Botox, against stimulation implant in the back and they just offered a colostomy bag immediately. I had a Sphincterotomy over a year ago and I think I would have dropped over dead if I didn't have that finally done in Mexico. I am sorry the balloon PT didn't help. I may still pursue that here in a couple of weeks.

I went to the Mayo and I begged them to also examine my back... they refused to do any EMG tests. I have been convinced my spine had something to do with it. Anyhow, my circulation went bad in my legs the year after and two years later I had a double lumbar fusion with two titanium disk now and trying to heal. My pelvis wasn't sitting right I could tell. It has been 14 weeks since the operation.

I never did get the proper PT with balloon because not many people want to offer it. Kegels wasn't going to fix it... I had surgery for blockages by adhesions and an appendectomy in 2022. Currently I am using MiraLAX daily, stool softener and magnesium.
I met another person on Reddit and they took their entire colon out and they have had many more health issues since... so that makes me weiry.

My situation was so dire for 6 years I didn't sleep due to the internal pressure. My surgeon in Mexico cut my sphincter 50 percent and I had tried to encourage him to do the opposite side because I think I would even be better. The Mayo told me to definitely not do that procedure and completely ignored me. It has 100 percent been the right thing to do. I asked multiple Drs.

I still need a multi level cervical fusion and I have issues in my thoracic as well.

I would stay clear of the Mayo due to my horrible experience. 22k in billing on tests to my insurance with zero help and they did tests for things i wasn't there for. Then in Mexico my large surgery of double fusion, hospital stay and some PT has cost that same amount. I actually had something done to correct my health.
This severe nerve compression was completely trashing my pelvic floor and my legs.

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Profile picture for samclembeau @samclembeau

If it is SIBO you can try herbal OTC meds. Oil of oregano, berberine ( which can cause diarrhea, so stay close to toilet) and neem. They have been shown to work better than the antibiotics they prescribe for it, which insurance won’t pay for and is stupidly expensive.
Also SIBO has been known to return and have to be treated all over again.

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@samclembeau What dose and duration do you use for the herbals you mentioned? Do you take all three at the same time? I have seen protocols combining two at a time, but never all three. Thanks 🙂

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Profile picture for jlstjohn @jlstjohn

@samclembeau What dose and duration do you use for the herbals you mentioned? Do you take all three at the same time? I have seen protocols combining two at a time, but never all three. Thanks 🙂

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@jlstjohn I think it depends on what type of sibo you have - methane dominant or hydrogen dominant. neem and berberine for hydrogen and oil of oregano for methane (add garlic extract)
others say to take all three, plus garlic extract if it is methane. I see some herbal sibo meds on the market but have not looked into those. I just started so I am still researching what works and in what amount, but some say pick one berberine 1500mg 3 times a day, neem 600 3 times a day or oil of oregano 1000 3 times a day. Plus Allicin (the garlic extract) 900mg 3 times a day.
I also take atrandal
good luck

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Thank you for taking the time to reply. I have seen similar dosing from various resources. Most say to stay on them for 4 weeks. Best wishes to you, too.

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