I am brand new to this and I can relate to all of this. In 2014 I had surgery for compressed celiac and superior mesentery arteries. During surgery they found it was due to my diaphragm 'smushing' it. Called it MALS. Difficult surgery/recovery. Symptoms went away and then in 4 months the pain was back. Tests showed arteries narrowed again. I also have Chronic Fatigue Syndrome and was in remission, however the surgery and following stresses brought it back. I continued to have pain, at this time my dad suddenly passed, (devastating to me), I was POA and had my mom with beginning dementia. I finally went to a natural pathic doc. She diagnosed the SIBO right away with breath test. Problem-couldn't afford medicine. Took almost a year to get some. Took Xifixam, helped a bit, but 2 days off at most, all symptoms back. Also having 'artery' pain, hard to distinguish now which pain is for what. Tests showed I had to have another surgery for arteries, however I was not physically strong enough for another open surgery. I also was caring for my mom and that would not work. We decided to put 2 stents in. Much easier surgery!!! Still continue having pain. Did get a GI dr. I had ulcer, and another breath test, positive for SIbo, tried other antibiotics and finally xifaxim again. Same results. Was going to go back for endoscopy and see about SIbo and my mom suddenly passed from a stroke. It was hard to get appts with my GI, so switched docs, this one, kept saying pain is from artery and can't get rid of sibo due to low blood flow. I said well what about my sibo, and he gave me some other antibiotic, didn't work. My surgeon says not from arteries, so I got another great GI doc. did another sibo test, positive did round of Xifaxim, same results, then she wanted me to take another round, but this was much later. Doing all my research, you do meds, then retest right away to check levels again and so forth. I moved and she was leaving practice so no point in wasting expensive meds with no one to follow up and she wanted me to go to mayo. I was already referred for vascular, but no insurance at that time so I couldn't go . I am now at Mayo, doing testing. I don't know how much my dr. believes in sibo. She did make me feel like since I always had stomach issues, this was just stress. My stomach issue previously were nothing like this. I had the breath test but it was 2 hours only and glucose. Not going to tell results accurately. All studies show test must be at least 3 hours. Gases don't hit large intestine until 2nd hour and then colon. Also it must be lactulose. My test came back negative, and clinical correlation whatever that means. I emailed the dr. and explained how glucose doesn't hit the last 12-15 feet of small intestine let alone the rest. She did not comment on it. If I had known that, I wouldn't even have done it , waste of time and money.
I am sure most of you know the feeling, tired of being your own doctor. I have done so much research, My friends and husband say I should be an MD by now. But you know when you are sick everyday, afraid to eat, and then you finally get a diagnosis, but no one can help you, you do what you can to try to feel better and learn more.
I can tell you that sometimes ginger tea, but real ginger, helps nausea. I also have a prescription for promethazine, but can make you sleepy. A non sleepy one is Zofran.
A great website is DR. Allison Siebecker. She is an expert on sibo. I get all types of info. I recently watched a live sibo event, they called summit, which was amazing. There were drs, nutritionists, life coaches, it was great. I learned a lot.
Another thing I didn't mention is that scar tissue from surgery can also lead to sibo, if in abdominal area. All of this began after my surgery in 2014. Also have your dr. check for vitamin insufficiencies. There is malabsorption from the sibo. Herbal meds as well as the antibiotics work well together.
There are many different underlying reasons for Sibo, sometimes you may never know, but you have to get rid of the bacteria, and then heal your gut. Now if I can get someone to help me with that, that would help!!
Thanks for listening.
If anyone received good help at Mayo for sibo, please let me know. I would appreciate it.