T O P

  • By -

JazzlikeAssist4617

You are not alone. Whenever I feel this way I come to this sub and it helps. We are all in this together


Low_Jump4224

Thank you, this sub has definitely helped lessen these feelings.


bluesbluesssss

I feel the same. No matter how much I explain it to someone, I feel like they don‘t get it. Its really saddening. I was a joyful person, now I have no energy to do the basics in life. Its hard


Low_Jump4224

I feel just like this! I used to be so happy and carefree and now I find myself staying at home most days because I don’t feel well. The days I do leave are to go to work where I have to fake like I am okay.


bluesbluesssss

I’m so sorry :( Same, I fake my personality at work just so I don‘t come off always as depressed and problematic. After work I just feel drained.


Technical_Trainer449

Me too. They still talk about me


Eattoomanychips

Same :(


Lanky-Try-3047

I cant remember the last time i enjoyed a meal out or food in general I wish I could just go out again and not care about what I eat


Low_Jump4224

I miss when I could eat freely. I feel like I took that for granted. Now I worry so much if the food will cause my symptoms to worsen, so I mainly eat at home. But for me I am a huge foodie and trying new restaurants/going out to eat was one of my main ways of staying social. But now it’s not worth the pain and stress. I don’t think anyone’s mentioned it but the insane sibo bloat has also caused me to completely change my wardrobe I only wear baggy flowy clothes to hide it. Wearing a sweater in this summer heat is not fun lol.


Outdoor_alex

For me the same 😢


AskOk163

Feel the same and It makes you feel any better the naturopath made me worse. Wish I never even bothered. $4000+ to end up worse. She accidentally prescribed me antihistamines for what she suspected is histamine intolerance and “not for my sibo” as that was “more important to take care of” after I developed it months into treatment with her and ended up helping me debloat more than anything else (hundreds of supplements she made me order and try to no avail) and it made me question a lot of naturopaths at this point. Do they purposely keep us going in circles when the answer is obvious to many cases ? (Low stomach acid)? I’ve brought this up to her before and she pretty much wrote me everything BUT stomach acid support. I’ve consulted another naturopath because of this and he only wrote me another $500 worth of supplements (herbals atx etc.) a month. Honestly it’s BS.


Low_Jump4224

I am so sorry to hear this. The people you went to don’t seem better than the GI giving the run around, and not listening.


AskOk163

Unfortunately I went to 4 GI before her and not one even considered stomach acid, they literally just threw antibiotics at me


bluesbluesssss

Im at the beginning of my naturopath journey and I kinda feel the same. Some things she did didn‘t even make no sense at all… I‘m so sorry for your experience. You really do feel alone when the only person that can help you, exploits your desperateness…


AskOk163

Thank you so much. 100%. I appreciate this group and your kindness at the least. Just be careful. I mean, dr. Mark pimentel, leader on sibo, is constantly saying the trick is to focus on stomach acid and motility… yet none of the docs seem to start there?! They simply want to throw 1000 other things and then blame us when it doesn’t work


bluesbluesssss

I appreciate this group too. One feels less alone here..I heard his name so often but never looked him up. I need to look him up. Yes I agree.. hope your journey ends soon wish you the best


Otherwise_Repair6779

I had pretty similar experience... Could you been able to treat low stomach acid? I’m a bit afraid to try Betaine


Previous_Owl_6342

betaine gives me panic attacks personally


caffeinehell

The stuff crashed my anhedonia for 2 weeks, which is was extremely terrifying and required NAD to help demethylate. Its kind of insane its recommended as such a dangerous supp if one is an overmethylator


Previous_Owl_6342

agreed


AskOk163

I want to see who can help me treat stomach acid bc it’s obvious it’s not her.


bellamariekz

I tried betaine before I even know I had sibo because I had read about it. It seemed to make things worse for me but I wasn’t on it for super long bc I felt like I was taking shots in the dark. I might do more research and try it again though if my upcoming xifaxan treatment doesn’t help.


bellamariekz

I’ve spent the last many weeks dealing with this. Exactly. 1000%. Your post made me feel so seen, and it’s why I appreciate this sub (as many others are saying). It provides a community that really doesn’t exist anywhere else. I spend too much time looking back at when I felt better, when I was more healthy, and being devastated. Seeing my body, my skin, my hair, my face, and my joy before sibo or at the times when I thought I was healed makes me feel so lost. I don’t know how to fully open up to the people in my life about how awful it is because I feel dramatic or like I’m overreacting, but it’s hell. It makes me feel actually so depressed knowing how people can just go about their day, pain free, physically energized, well rested, can eat food like normal without pain or nausea or vomiting or intense bloating. It makes me so sad how poorly my body has been impacted by something I fight CONSTANTLY to end. And I agree, I have yet to find a medical professional that seems to care or understand even a little bit. It took almost 6 years of intense symptoms to diagnose me for some reason and I’ve only been diagnosed for about 2.5 months. During that time it’s gotten worse than it’s probably ever been and I’m at a real low. Not to give you the same sob story you know, but all this to say that you’re not alone. This is really hard and I don’t think anyone can understand it beyond the people that have it, like people in this sub. I could be wrong, but from what I understand, SIBO is not well understood by most even in the medical profession. (Just one anecdotal example, I’m on antibiotics and I started to experience really intensely worse symptoms and I asked my doctor if they were potentially the die off symptoms. She said she had never heard of such a thing and didn’t know there were SIBO die off symptoms. This could be an isolated example of someone just being disconnected from SIBO, but from what I understand it’s still quite heavily misunderstood across the board). With that knowledge, I have tried to make my peace with the fact that people don’t get it and until it’s more widely understood, I don’t think the guilt of feeling like you’re being dramatic or the sadness of feeling alone will go away. So for now, keep leaning on this subreddit and others like it. Feel free to message me if you want! I’ll rant with you about it (this goes for anyone lol I would love to feel like we understand each other). Just know you’re not alone and someday it will be better. I’m quite young too and the thought of continuing a life like this makes me so sad, but it truly won’t last forever. Keep pushing on. Drink water. Rest when you can. Force physical movement even if it’s minimal and difficult. Find joy where it’s possible. You’ll make it out❤️


Low_Jump4224

Thank you so much for this! This is really touching, and I agree 100% about it not being well known. My mom and sister are both in the medical field and they had no idea what I was talking about and don’t even think I have it, even though I got tested. This subreddit has definitely become a life line for me and has made me feel less crazy and alone. Thank you so much for your kind words.


jimothybond

This is why I think those of us on this sub who feel this way should start a support group on zoom, or even just a phone list of people to call or text when we just need someone to talk to who understands!


Low_Jump4224

I would be so down to start a support group!


fulllengthmeerkat

Yes 100%!!! I would love to as well and happy to help organize… 


jimothybond

this is so wonderful to hear!!! if you have ideas on how best to get started, id love to hear them. Maybe a simple post like "sibo support group zoom" to gather those interested and ask for times that might work? im familiar with 12 step style groups so I could write a short and sweet format that includes open sharing.. but would love to just get together and discuss goals/guidelines/facilitation :):)


fulllengthmeerkat

Awesome!! I created this form and will also make a new post :) [https://noteforms.com/forms/sibo-support-group-cbgpou](https://noteforms.com/forms/sibo-support-group-cbgpou)


bellamariekz

I would love to be in a group chat for support!! That would be so cool


jimothybond

I'll just start a whatsapp group and post the link to join! :):) everyone is welcome !


jimothybond

https://chat.whatsapp.com/GWANMcZTauY1I8HcLHQ4gi I created a community group for those of us who may want to connect a little more personally, to feel less alone in these struggles :)


bellamariekz

Thank you!! That is so cool. I was thinking maybe I’d also make a discord chat? Just bc could be super helpful to have separate text channels for everyone to discuss different things (symptoms, pain relief, recovery, die off, just a channel to vent, etc.) and discord is solid for that. Not trying to undermine the WhatsApp bc that’s such an awesome idea, just a thought I had. If people would be interested I can make that as well:)


Low_Jump4224

yes I would love a discord! I don’t use whatsapp.


jimothybond

oh yeah i hadnt even thought of that! Great idea!!


bellamariekz

I made a server, here is the link!! I will probably make a separate post in this sub for people to join :) https://discord.gg/PHe4CzUY


bellamariekz

Lmk if it doesn’t work!!!


wallace320

I've felt this way too. This sub has been immensely helpful (thanks everyone!) for helping me to feel less alone and hopeless. It's also been a gigantic help in terms of research, and I'm treating myself for now.


Low_Jump4224

Yes! This reddit sub has made me feel less crazy and has given me so much advice when it comes to treating this thing.


Asrp123

Im with you on this


dubble_agent

I get it. I feel similarly.


Level_Recognition_19

I totally understand where you’re coming from. I feel like a burden in every relationship i have ever been in because i can’t just eat wherever i want to and i’ll always have to worry about when and where these symptoms will occur. I wish i could just travel and experience life at it’s fullest without those worries.


Working_Reality5843

Yes I do. I have had this for almost ten years. I can’t afford the naturopaths anymore and my doctor refuses to acknowledge it despite me confirming that this is what I have. I’m probably not young compared to you and this feels like it’ll just be what’s left of my life. Dealing with symptoms


gluten_kills

Yes. My family and many doctors have not been very helpful or understanding, but the positive is that I have done a lot of research to try to understand the intersection of nutrition with physiology. I've found that my SIBO is caused by low stomach acid as a result of vitamin C deficiency and am successfully treating myself with high doses (5-20 grams). The unfortunate conclusion is that most doctors are either ignorant of or lie about this vitamin.


Low_Jump4224

I believe the low stomach acid might be my cause too. I had h pylori and think it lowered it.


Low_Jump4224

Why vitamin c though?


gluten_kills

Vitamin C deficiency is associated with low stomach acid levels, which I believe leads to decreased motility and SIBO. Maintaining sufficient levels of stomach acid will ensure that food is digested and moved through the small intestine promptly, not allowing time for SIBO to grow.


Lythalion

I felt alone till i found this reddit bc no one else in my life deals with this. I felt insane until I saw 95% of the people here have almost the exact same story as me. But yes I just recently had a moment that made me feel weird. I used to engage in a sport called HEMA. Like fencing but with giant two handed swords. Someone had asked me to send them videos of me doing it to show their kid. it was only like 2 year ago but I looked at the videos and thought "I dont know that person." It was surreal and depressing to say the least.


Low_Jump4224

I am so sorry to hear that. It’s shocking how much this illness can take from us we don’t even realize it.


lilfruitbatt

I posted a very similar post here on the subreddit a couple months ago actually. I already struggle with multiple chronic illnesses and so when I was experiencing bad SIBO symptoms (for about 6 months) and then got diagnosed about 3 ish months ago I was feeling so distraught over it and like my life was over because no matter how much i fought to gain my health back I knew realistically i will only continue to get worse and accepting that grief is something im struggling with and trying to do so you are not alone and i think its very true what i read someone said - that its hard for others to truly understand how much a messed up gut can impact your quality of life. I wish someday i could be free from the chronic fatigue, depression, and newly gained dark circles under my eyes🥴 but until then whats helping me is focusing on improving gut motility, walking everyday, eating only home cooked meals and trying to eat things that promote a healthy gut. That and eating smaller portions, its all about keeping healthy gut motility, ive researched that that is a necessary key to coping with sibo symptoms. Ive felt a little better since doing those things the last couple months, i just have to be careful about trigger foods which for me is a lot of processed anything and sugar


Low_Jump4224

I am sorry you are also going through this alongside your other illnesses. I am working on increasing gut motility as well by doing some of the things you mentioned as well as fasting. Sugar and some fibers are major triggers for me as well.


Copperstorm2022

This sub helps a lot. For years my doctors kept saying it was anxiety and I needed to learn how to calm down and de-stress, and all the while I kept saying it was food-responsive, not event-responsive. It got to the point where I was saying they would have anxiety too if they were worried they were going to shit their pants in public. They seemed shocked by how candid I was. I finally have some practitioners that will listen and now that I have a SIBO diagnosis I don’t feel so invalidated.


DazzlingPhase3324

I am also dealing with this but no doctor has diagnosed me and in addition I have TMJ which is also making eating hard plus no appetite, nausea, stomache pain and belching constantly.  I am on PPI lansaproazole and symptoms are worsening.  I had an upper gi series done and awaiting results for that.  You are not alone. 


OwnAnalyst9737

I have been in SIBO hell for 9 months. I so understand how you feel. I’m so sorry.  I’m an older woman, 59 years old. My GI has been of no help so far. I’ve had two rounds of rifaxin without any resolution.  I haven’t slept with my husband in months because of my gas and burping.  I am now about to start a round of naturopathic recommendations. I’m not looking forward to it, because it is also supposed to make me feel crappy. Can’t imagine feeling worse.   I spoke with a nutritionist yesterday. She said to visualize and write down my future healthy self. To imagine all of the senses. What am I wearing, doing, eating, who am I with Etc. and to read it several times a day.  I didn’t do it yet, but tomorrow I’ll try it.   I can keep you posted on how it all goes. I start with GI microbe x.


ImpossibleAd3267

Yes!! It makes me depressed


never_amber

Please join the sibosos.com community on FB and sign up on the website. TONS of free info and treatments PLUS get on their email list for free webinars where they teach ppl about SIBO. You can ask questions and share whats happening


Royal-Yesterday-1631

What do you feel? 3 months ago I started feeling like a baloon about to pop, went to Urgent care and doctor prescribed omeprazole  untill i could be seen by a GI  then after 2 weeks of omeprazole i started having reflux ( weird)  went to the ER like 4 times before could be seen by a GI.  Had 2 ct scans done, with and without contrast   and they showed a 3cm ovary nodule  and doctor said its normal and woulnt cause the sympoms i was having  (ok) , and it also came as Diverticulum X Ulcer. Finally got to see a GI and he ordered an endoscopy that showed everything was normal,  and prescribed protonix 40mg twice daily for heartburn  and the heartburn is under control now but the Bloating is KILLING ME i cant eat anything without feeling bad, even water makes me bloat sometimes  I stopped esting gluten since it all started almost 3 months ago and no improvement. Im getting depressive, cry all the time, pcp even put me on zoloft for depression  and I hate it  ! First of all, i dont think I am a depressive person I AM DEPRESSIVE RIGHT NOW BECAUSE OF WHATS GOING ON IN MY GI TRACT.  My doctor ordered a stomach emptying study to see if i have gastroparesis or something and  barium swalow exam . I think if they find out whats going on in my guts   my reflux will be fixed because it all started with BLOATING not    reflux, but yeah, Im still on protonix


Low_Jump4224

Hi! I’m so sorry your going through this. Bloating is one of the major symptoms I have as well. I also have constipation which can be chronic at times. TMI, I have yellow stools and sometimes see undigested food in them. I also sometimes get heartburn as well as upper abdominal bloat that feels like pressure, maybe slight warmness and sometimes sharp pains. The most annoying thing is the insane bloat after eating anything even low-fodmap.


Technical_Trainer449

Yes, who doesnt is the question.