Possible SIBO and peristalsis issues

[Mystrys]

I'm apologizing ahead of this for the length but appreciate all who take the time. It's been quite awhile since I've checked in as life has been INCREDIBLY chaotic over the last few years. I'm coming up on my 5 year surgiversary in April and have felt very blessed to not have any major issues. I had only minor issues with constipation and pretty frequent evening nausea after meals. I relied on tiny Pepto sips to calm it. I do realize now, pepto is not advised for DS'r due the salicylates. Mostly life was great...Until last May. So,this is almost a year ongoing and I am losing hope we will ever figure it out. Feeling pretty frustrated for sure. I'll try to hit the high points quickly here:

Before May 2020 everything was completely normal and I was pretty freaking happy with my crazy, chaotic life. Then I came down with a menopausal related bacterial infection(vaginal). Never had one in my life and Gyno says it's due to menopausal changes and treated it with 7 days of oral Flagyl and then 14 days of inserted gel. After that it was the gel 1x weekly for the next 6 weeks. Everything seemed to clear up pretty quickly considering and I didnt think about it again. At that time I was still on my usual vitamins and probiotics as a side note. Fast forward to early July and I start having unusual and extreme bloating out of nowhere. It ramps up pretty quickly to the point that after an ounce or so of foods or liquids and I'm distended and it's beyond painful. I have been able to eat 6-8oz of food for several years now with no issues EVER! I start losing weight pretty quickly because I'm basically only able to sip on bone broth throughout the day and cant get much else in without extreme pain and bloating. I take my vitamins but cut all my other supplements and probiotics, all forms of any sugars/sweeteners(not hard as I have been Keto for almost 13 years) but all starches/carbs from all sources and all dairy. Anything I can think of that might be causing a reaction.
My DS surgeons office suggests a low FODMAP plan and they want to ride my case again about the keto/my fats. I cut my fats at the same time as all other food because....well...I'm really only able to get the broth in anyway. Fast forward to September and I'm still struggling and still losing weight. Surgeon refers me to my Gastro doc. I've already had a colonoscopy the year prior so he schedules me for EGD. He promises while he's in there he will do an aspirate test when I ask him about the possibility of SIBO. EGD turns up nothing and while I was out on his table, he "decided not to do the aspirate test because they're not really reliable". Tells me to do a massive elimination diet...how much more can I eliminate when I'm only on bone broth??
I complain to my surgeons office and the NUT at surgeons office squeezes me in to see my surgeon 2 days after EGD. That afternoon he had me on his table in the OR for emergency surgery because he thought for sure I had intestinal herniations possibly at anastomosis sites. He finds nothing but takes out my gallbladder while he was there for good measure. I'm furious.

Here we are... now its 5 months later, and I'm still having symptoms. They are not as bad I will admit. But I still bloat with EVERY SINGLE MEAL no matter the size/time. Still no sugars/starches/dairy,etc. I got myself a new Gastro doc@ Vanderbilt. I'm halfway through a script of Rifaximin he prescribed but it's not looking like its gonna be a miracle I wished it was.

Does ANYONE know WTH could possibly be going on? Can it even be SIBO from the Flagyl? It's the only thing that was unusual/different in the entire last year. I'm so frustrated and the massive anxiety and the panic attacks with this is getting to be unbearable. I really want my life back and I dont know what to do.

 

[southernlady]

Welcome back.
Sorry you are dealing with all this but I have nothing to suggest.

 

[Susan in Tennessee]

It HAS been a long time! I’m so sorry you’re in such misery with no answers. I had completely forgotten you are TN until I saw you mention Vandy, and I SURE had forgotten (if I ever knew) that you’re in Cookeville! I’m just down hwy 111 the other side of Sparta, about 30 miles from Cookeville. Cookeville is “the big town” we go to. . The Flagyl aspect does seem interesting. Have they ruled out blockages, or the condition where the bowel folds back on itself , the name escapes me... inter something. Over and over I’ve heard people who have strange things that stump their local doctors say that a consult with Dr. Ara Kesheshian in CA often was the answer to their prayers. I think he does phone and video consults after reviewing your records. Might be worth it.

Susan

 

[JackieOnLine]

I still bloat with EVERY SINGLE MEAL no matter the size/time.

I'm sorry to hear you are going through this and I hope someone can figure this out.

 

[Mystrys]

It HAS been a long time! I’m so sorry you’re in such misery with no answers. I had completely forgotten you are TN until I saw you mention Vandy, and I SURE had forgotten (if I ever knew) that you’re in Cookeville! I’m just down hwy 111 the other side of Sparta, about 30 miles from Cookeville. Cookeville is “the big town” we go to. . The Flagyl aspect does seem interesting. Have they ruled out blockages, or the condition where the bowel folds back on itself , the name escapes me... inter something. Over and over I’ve heard people who have strange things that stump their local doctors say that a consult with Dr. Ara Kesheshian in CA often was the answer to their prayers. I think he does phone and video consults after reviewing your records. Might be worth it.

Susan

Hiya NEIGHBOR!!
You're not far from me at all really. And yes, being a Micropolitan for the Upper Cumberland, it is the hub for all the other surrounding counties. Boy.. It's sure been crazy around here during this whole nasty covid mess too!!
As far as ruling things out, Dr. Boyce did rule out quite a bit with all the tests and then when he was actually inside checking for intestinal hernias he had a good look around. I had just had the upper endoscopy 2 days prior and that ruled out a few issues as well. My new Gastroenterologist seems to be better suited so far and I was hoping the zifaxin he prescribed would be the answer. I have 5 more days on it, but I'm only seeing minor improvements at best. I might just need more patience, but it's a challenge since this has been going in for a year already.
It's funny you mentioned Dr. Kesheshian because I told my hubby back in November that I might be making a trip back to my part of the country to see him. (I'm actually from Washington state but born in L.A.) I think alot depends on my next set of labs as well. Those are due in April. But I am with you....it might very well be worth it. Thanks for your input. It is MUCH appreciated.

 

[Webmommy]

I am sorry you are going through this. This seems so hard.

Have you been tested for Chrohn’s disease or Irritable Bowel Syndrome? Celiac? Or bloodwork for other autoimmune diseases? I will also throw out there systemic thrush. Perhaps the Flagyl allowed a yeast overgrowth and you need Diflucan and more probiotics? I hope you find the answers you need.

 

[Mystrys]

I am sorry you are going through this. This seems so hard.

Have you been tested for Chrohn’s disease or Irritable Bowel Syndrome? Celiac? Or bloodwork for other autoimmune diseases? I will also throw out there systemic thrush. Perhaps the Flagyl allowed a yeast overgrowth and you need Diflucan and more probiotics? I hope you find the answers you need.

Thanks for all the thoughtful suggestions, but yes...been tested for all of it! Also had a round of Diflucan prior to the Flagyl but not after. I actually thought I had a yeast infection because I'd never had a bacterial infection before. But yes, tested for everything under the sun which is what led me to ask GI doc to do the aspirate test while I was under for the EGD. I'm so infuriated that he would tell me yes during the OR prep and then wait till I was under and mid procedure to decide not to do it. I lost all faith and trust in him at that moment.

I guess at this point,I will just finish my Rifaximin protocol and pray it continues to improve. I suppose in April, with my 5 year follow up and bi-annual bloodwork we will see if I'm having any symptoms of nutritional deficiencies. I pray not!!


Someone asked me today if I could have a reversal of the DS if the dysbiosis and motility issues were due to the shortened bowel. Well...prior to all of this I would have said NO, there is no reversal of a DS. Thats what I've always been told. But as of today, I'm actually reading that I might be mistaken in this understanding of our procedure. Does anyone here know of a DS'r having a reversal of the bowel portion due to medical issues or nutritional deficiencies?

 

[aaa]

Sorry to hear what’s been going on.

A poster named Tiffany Alvarado on FB is having a reversal with Dr. K. This is the link https://m.facebook.com/groups/2327794810?view=permalink&id=10158183027164811&src=email_notif

 

[Spiky Bugger]

I'm apologizing ahead of this for the length but appreciate all who take the time. It's been quite awhile since I've checked in as life has been INCREDIBLY chaotic over the last few years. I'm coming up on my 5 year surgiversary in April and have felt very blessed to not have any major issues. I had only minor issues with constipation and pretty frequent evening nausea after meals. I relied on tiny Pepto sips to calm it. I do realize now, pepto is not advised for DS'r due the salicylates. Mostly life was great...Until last May. So,this is almost a year ongoing and I am losing hope we will ever figure it out. Feeling pretty frustrated for sure. I'll try to hit the high points quickly here:

Before May 2020 everything was completely normal and I was pretty freaking happy with my crazy, chaotic life. Then I came down with a menopausal related bacterial infection(vaginal). Never had one in my life and Gyno says it's due to menopausal changes and treated it with 7 days of oral Flagyl and then 14 days of inserted gel. After that it was the gel 1x weekly for the next 6 weeks. Everything seemed to clear up pretty quickly considering and I didnt think about it again. At that time I was still on my usual vitamins and probiotics as a side note. Fast forward to early July and I start having unusual and extreme bloating out of nowhere. It ramps up pretty quickly to the point that after an ounce or so of foods or liquids and I'm distended and it's beyond painful. I have been able to eat 6-8oz of food for several years now with no issues EVER! I start losing weight pretty quickly because I'm basically only able to sip on bone broth throughout the day and cant get much else in without extreme pain and bloating. I take my vitamins but cut all my other supplements and probiotics, all forms of any sugars/sweeteners(not hard as I have been Keto for almost 13 years) but all starches/carbs from all sources and all dairy. Anything I can think of that might be causing a reaction.
My DS surgeons office suggests a low FODMAP plan and they want to ride my case again about the keto/my fats. I cut my fats at the same time as all other food because....well...I'm really only able to get the broth in anyway. Fast forward to September and I'm still struggling and still losing weight. Surgeon refers me to my Gastro doc. I've already had a colonoscopy the year prior so he schedules me for EGD. He promises while he's in there he will do an aspirate test when I ask him about the possibility of SIBO. EGD turns up nothing and while I was out on his table, he "decided not to do the aspirate test because they're not really reliable". Tells me to do a massive elimination diet...how much more can I eliminate when I'm only on bone broth??
I complain to my surgeons office and the NUT at surgeons office squeezes me in to see my surgeon 2 days after EGD. That afternoon he had me on his table in the OR for emergency surgery because he thought for sure I had intestinal herniations possibly at anastomosis sites. He finds nothing but takes out my gallbladder while he was there for good measure. I'm furious.

Here we are... now its 5 months later, and I'm still having symptoms. They are not as bad I will admit. But I still bloat with EVERY SINGLE MEAL no matter the size/time. Still no sugars/starches/dairy,etc. I got myself a new Gastro doc@ Vanderbilt. I'm halfway through a script of Rifaximin he prescribed but it's not looking like its gonna be a miracle I wished it was.

Does ANYONE know WTH could possibly be going on? Can it even be SIBO from the Flagyl? It's the only thing that was unusual/different in the entire last year. I'm so frustrated and the massive anxiety and the panic attacks with this is getting to be unbearable. I really want my life back and I dont know what to do.

I have SIBO…or something…and the ONLY THING that keeps my distention, bloating and diarrhea under control is FLAGYL. My gastro would appreciate my being off it completely. I just can’t get there.

I try to titrate down to zero mg but then become symptomatic again. I seem to function best when I get down to only 500 mg/day…250 in the morning, 250 about 12 hours later. If I go below that, in about two or three days I develop all the symptoms which do not resolve until I spend a week or two treating all of those symptoms with maybe 1500 mg of Flagyl daily.

Then I start titrating down again.

I feel some of your pain, and apologize for pooping on your theory. But, as usual, with DS…YMMV.

 

[Webmommy]

Thanks for all the thoughtful suggestions, but yes...been tested for all of it! Also had a round of Diflucan prior to the Flagyl but not after. I actually thought I had a yeast infection because I'd never had a bacterial infection before. But yes, tested for everything under the sun which is what led me to ask GI doc to do the aspirate test while I was under for the EGD. I'm so infuriated that he would tell me yes during the OR prep and then wait till I was under and mid procedure to decide not to do it. I lost all faith and trust in him at that moment.

I guess at this point,I will just finish my Rifaximin protocol and pray it continues to improve. I suppose in April, with my 5 year follow up and bi-annual bloodwork we will see if I'm having any symptoms of nutritional deficiencies. I pray not!!


Someone asked me today if I could have a reversal of the DS if the dysbiosis and motility issues were due to the shortened bowel. Well...prior to all of this I would have said NO, there is no reversal of a DS. Thats what I've always been told. But as of today, I'm actually reading that I might be mistaken in this understanding of our procedure. Does anyone here know of a DS'r having a reversal of the bowel portion due to medical issues or nutritional deficiencies?

By tested I mean biopsies for Celiac and Chrohns because bloodwork alone can give false results. Also by overgrowth of yeast I mean in your intestines and not something you need monistat for. I had systemic thrush last summer and it was a nightmare and I felt terrible. The treatment was a nightmare for my guts too. But that’s unfortunate your doctor didn’t do what you agreed. Can you go back and ask them to do it again?

 

[Mystrys]

By tested I mean biopsies for Celiac and Chrohns because bloodwork alone can give false results. Also by overgrowth of yeast I mean in your intestines and not something you need monistat for. I had systemic thrush last summer and it was a nightmare and I felt terrible. The treatment was a nightmare for my guts too. But that’s unfortunate your doctor didn’t do what you agreed. Can you go back and ask them to do it again?

Sorry, thanks for the clarification. Yes I had biopsies during my last colonoscopy in October. All negative. As far as an overgrowth of yeast, I dont believe I really have the symptoms for that. I guess I could always be wrong. What were your symptoms? What was the treatment?
I CAN ask my new Gastro I suppose. But at this point no one seems in a hurry to go back in and do it.

 

[Webmommy]

Sorry, thanks for the clarification. Yes I had biopsies during my last colonoscopy in October. All negative. As far as an overgrowth of yeast, I dont believe I really have the symptoms for that. I guess I could always be wrong. What were your symptoms? What was the treatment?
I CAN ask my new Gastro I suppose. But at this point no one seems in a hurry to go back in and do it.

Celiac is a biopsy during an EGD.

I had it in my breasts, mouth and guts. So thrush times a million! It made me MORE gassy and my whole guts just felt puffy, sore and irritated more than usual. My mouth and tongue was sore and I had obvious ulcers in my mouth. It can be wherever you have moist areas so it can itch, burn and be raw looking. Some people can have itchy ears though. I had a month of Diflucan because we kept exposing each other and had this compounded ointment for thrush. Everybody had to be treated though the baby had Diflucan and my son had a stronger one and my husband had the nystatin mouthwash. The kids had nystatin ointment. They steal each other’s drinks and our’s too so it was a pain to get rid of.

Sometimes I don’t wait for my doctors to suggest something. I straight out ask them “Can we do ____?” I know some people feel uncomfortable with doing that considering the power dynamics of the doctor patient relationship but al they can do is say no and then you can find someone else who will help you.

 

[Spiky Bugger]

By tested I mean biopsies for Celiac and Chrohns because bloodwork alone can give false results. Also by overgrowth of yeast I mean in your intestines and not something you need monistat for. I had systemic thrush last summer and it was a nightmare and I felt terrible. The treatment was a nightmare for my guts too. But that’s unfortunate your doctor didn’t do what you agreed. Can you go back and ask them to do it again?

This is my life.

I am somewhat antibiotic dependent. So eventually, I need to battle yeast/candidiasis. Almost everywhere. I have Nystatin oral and Diflucan tablets and Monistat or something similar. Right now, I need a dose of the Nystatin and the Diflucan.

And I swear, when this happens I itch on my arms and my torso and my head and most everywhere and yet I have doctors who say that itching is not a symptom.

Big boy cow poopoo. (bullshit)

 

[Webmommy]

This is my life.

I am somewhat antibiotic dependent. So eventually, I need to battle yeast/candidiasis. Almost everywhere. I have Nystatin oral and Diflucan tablets and Monistat or something similar. Right now, I need a dose of the Nystatin and the Diflucan.

And I swear, when this happens I itch on my arms and my torso and my head and most everywhere and yet I have doctors who say that itching is not a symptom.

Big boy cow poopoo. (bullshit)

When I was being treated for it I soon discovered that candida is becoming resistant to treatment. So I HAD to have a multipronged approach to getting rid of it including the purple gentian violet. My little girl was so sick and has a fever and swollen glands in her neck! When I finally got her to open her mouth you could see the cottage cheese look on her tongue. Her gums were swollen too. My son’s mouth bled when he brushed his teeth. That’s how bad it was. It was in my milk ducts too. It is SO hard to get it out of there. Everything had to be cleaned and then disinfected. Or ran through the dishwasher. Pain in the butt.

I think those doctors are wrong and they never used to even acknowledge systemic yeast overgrowth awhile back. So this a gap in their knowledge. Itching is one of the ways of knowing thrush is on your nipples when breastfeeding. We also normally have yeast cells on our skin, hair, air etc. so why wouldn’t it become overgrown and itch?

 

[southernlady]

Sometimes I don’t wait for my doctors to suggest something. I straight out ask them “Can we do ____?” I know some people feel uncomfortable with doing that considering the power dynamics of the doctor patient relationship but al they can do is say no and then you can find someone else who will help you.

This right here. It’s a hard dynamic to overcome. As DSers, we have to learn to do this.