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Thu, Sep 5 6:51pm · IBS Relief at Last in Digestive Health

I would be interested! I have a dx of SIBO, but what you got is what so many of us need! Someone to work with us. and then yes, things can get better! I was just talking with someone on another thread how so many of us get the "learn to live with it", when it is often possible to get relief… but it's not simple, it's a process that requires, time; communication and practitioner and patient working together. GI docs are not interested in that.

And finding a dietician who is educated and interested in these problems is not much easier. I have not found one.

Thu, Sep 5 6:45pm · Intermittent fecal/sulfur breath odor in Digestive Health

Sounds like we are coming from the same place 🙂
It is difficult.. but that is why (in my case) I thought going to a major center would help.
I agree with your conclusions I talked about, and it's true. You have to find a doctor who is interested enough want to investigate your problem and learn, or be open to you bringing them information (i.e. in my case I have gotten a good treatment protocol from a major center that specializes in my problem, and just asked the doc if we could try it – it's from a major center, based on research, not from some unknown quack). I was ecstatic when I met Dr. Neustatter, who says there is so much to know nowadays, so much information, even one doctor can't know it all! I thought my doc would be happy that we had something to try. Instead, apparently it "offended' him and he is just ignoring me now, not responding to any messages through that portal system we are supposed to use to communicate. I asked him for a prescription for something that he had even listed as a possibility, and it's been 2 weeks and I've heard nothing. In the meantime, I'm suffering, and he knows it, because I told him. That's just brutal! I can't even believe it!

And sadly, that has also been my experience, if you try to stand up for yourself, or disagree with them (and I am very diplomatic, try to be polite and sensitive), you get branded a "problem" patient, and yes, you are the problem.

I'm glad (from the sound of you – that you still have the 'fight' in you, and haven't given up! We know our bodies! There is help out there. It's a long journey in getting to it, and you have to find it all on your own.

I'm going to have to read back to try to understand your history/ problem if I can, and if any of what I've learned applies to you I'll pass it on. You are not the "problem", and don't ever let anyone make you feel that way! This is a problem with our healthcare system, and you are not alone, in fact; your experience is all too common.. hence Dr. Neustatter's website and book.

Well, good luck trying to get help from Mayo.. let me know how it goes. I don't think they would want to send someone from outside the clinic b/c I guess they would think that wouldn't be good for their image (when actually I would be impressed by that). All the competition and 'politics's. I think you have to go get that help, but you can certainly try and see.. and yes, I agree they should! I know I even mentioned to my Dr I would be happy to switch to another doctor if he found me too "difficult" (I didn't want to say my case, I was trying to give him an easy 'out'.. and maybe I'd get someone more interested in my problem, that's fine. But he just won't answer me at all, he's just shut me off. That's really frustrating, when I feel I was going out of my way to be 'nice' to him, and you know what, I shouldn't even have to do that. Now I don't even know what is going on.

So where are you at? Do you have more appointments? Have you written to anyone asking for help, have you gotten any answers?

Thu, Sep 5 7:17am · Intermittent fecal/sulfur breath odor in Digestive Health

Hi @pbleonar2 I haven't had time to read what your problem is – but I just finished 2 (separate weeks of evaluation/consults at Mayo – and am VERY disappointed, rather disgusted; in fact. They actually did diagnose my problem – or what seems to be a big part of it, and while I know from my own research and info that other centers make available to the public – that my problem is quite treatable.. and in many people, good resolution of symptoms can happen…. in fact. I've had a positive response to the first round of antibiotics I was put on. however, from what experts in this area do, I should have a little longer course, and possible another AB, based on the type of bacteria I have. However my GI doc, who is a Fellow, appears to have no interest in "fixing me", nor looking at any of the research or information from a major center that Specializes in SIBO., nope, he wants me to go to a "chronic pain program"… and as you say, "learn to live with it'! I'm thinking ,, WHAT? You're giving up already? I haven't even had a chance to go through a decent treatment protocol, and i wrote these concerns to him along with the fact that I am getting sick from the Miralax he wants me to take (BAD for SIBO), which I told him before… he thinks constipation is causing my pain.. I KNOW it isn't.. I now know the SIBO is likely making me constipated at times.. but now I have diarrhea thanks to his "treatment". The he got mad because I was asking him to many questions on the portal (I thought he might want feedback on how I was responding.. I asked for a prescription for something for my SIBO protocol that he actually suggested, and 2 weeks, I can't get him to answer.

I told the urgent care Doc (I had so much diarrhea I was really dehydrated).. she said, get a different doctor, and go to Cleveland Clinic.. She said that's what Mayo does.. you see the people in training.. that's why you don't see anyone who "specializes" you your problem (I don't know the initials.. it would help if people write things out maybe. if you don't know SIBO, I will). I've heard Cleveland Clinic is really good for GI problems from several other people, so I'm thinking of going there next.

It's probably not popular b/c this is Mayo's site, but maybe the feedback is something they need, and if they want to improve their GI care, they'll listen. It's terrible I (and my insurance company) have paid them over 20K , and I'm on the internet coming up with my own treatment protocol, found a SIBO diet from Cedars-Sinai in LA (they sent me to a dietician who knew NOTHING, told me to eat three times a day and eat a lot of Fiber (EXACTLY the opposite of what us SIBO people should do… LOW fiber for us), so she gave me BAD advice.

I hate to say it, but after 3 bad experiences, I'd move on. Don't know where you live, but Cleveland Clinic is in midwest, so maybe close. The SIBO centers are on east and west coasts, I'm trying to see if I can get someone local to write scripts for me. But it's really sad.. that there is treatment for me.. and the doctor won't write the scripts.. and I told him I was miserable… on Aug 21. This is substandard care, IMO.

And no, I don't want to "live with it", that was why I came there.. I have a treatable problem, and I think there are other things that could be ruled out. The GI Fellow also didn't have correct information about some other things.

Other places, you make an appointment with a specialist, and see them. I wouldn't mind seeing a Fellow (someone still training) if they were open minding and wanted to learn and were open the idea that there is so much to know nowadays one doctor can't even know it all, and work with me… HE could actually learn a lot too, which is what he is supposed to be doing. But he doesn' t give a damn (sorry can I say that), it seemed to fit. After all, he doesn't get paid for answering questions on the portal. I should drive 4 hours and make an appointment, so he can charge me $400 to write a prescription. That is crazy.

You can't change people, if the docs aren't taking you seriously they aren't going to change. Like the one I saw. I don't bother to waste my time. Cut your losses. I learned the hard way, spend too many years with docs like that, and all I did was lose years of my life. Check into the Cleveland Clinic… you shouldn't have to beg for decent care.

Good luck and I'm with you..
Oh.. FYI.. I just met a retired Family Practice doc who has SIBO (my problem) and was looking for info.. I sent him my collection (I've done a LOT of research).. he's actually written a book and has a website calling "managing your doctor".. it's all about what i've been kvetching about .. and he agrees is a huge problem with the medical system.. he wants to help people learn how to be their own advocates , how to be assertive about getting care… …I just ordered it, looks fabulous! You can also write him on website.. doesn't look like many people do, but he's interesting in hearing stories from people who have had to basically help themselves b/c the system didn't….

https://managingyourdoctor.com/

Thu, Sep 5 5:32am · Fecal Matter/Microbiota Transplant FMT in Digestive Health

Thanks a lot @kanaazpereira , hopefully they will return! Over the years I've heard comments about people having this with good results, but I don't see a lot about it from the medical community, and no one has ever suggested it, but I'd really like to learn more….

Wed, Sep 4 12:19pm · Fecal Matter/Microbiota Transplant FMT in Digestive Health

I don't know anything about but am also curious – can I ask what diagnosis/condition you are dealing with/think about this for?

Tue, Sep 3 2:40am · Slow transit constipation and surgery in Digestive Health

Good thought, tiss! I was going to ask her about that. I'm kind of pro SIBO now, BUT the incidence of SIBO and IBS going along together is so high (and I believe getting higher as more is being learned). I was thinking about that especially since her problem started after an illness… and possible infection.. I believe there was one there. I think SIBO should always be considered in chronic constipation IBS without a cause.. because there is a cause… they just don't know what it is most of the time.

Tue, Sep 3 2:35am · Chronic Upper Abdominal Pain without an answer in Digestive Health

I'll be back later to say more (if you are still here).. but after hearing "prozac for functional stomach pain", I'd be hearing the door slam on my way out of that office…. and onto finding a new Doc. Hello – Prozac is NOT a pain med, despite the fact that doctors who can't find a cause for someone's pain like to think it is. Don't waste your time. Once they have that attitude they aren't looking for an answer any more. There's more than one doctor in town (and if there happens not be be.. you can travel!!

Mon, Sep 2 11:06am · Mesenteric Panniculitis or Sclerosing Mesenteritis in Digestive Health

oops, that was "for" doing this, in regard to my reply to you! Hey, however is in charge, we need an edit function for the comments! I do, anyway, for all my typos! 🙂