Lifelong Gut Struggles.... Has anyone else felt like giving up hope?

I was diagnosed with IBS-D for the last forty years. Many colonoscopies and endoscopies and except inflammation and a hiatal hernia found nothing new. I gave up gluten 14 years ago and that has helped a lot also dairy. But there are still days I can't leave the house. As it happens Chinese food is the hardest thing I can eat. Unless the soy sauce is gluten free and the noodles are rice and not wheat. I can do Thai or Vietnamese because most of everything is made with rice. I also have PI which is Primary Immunodeficiency kind of like the Boy in the Bubble but not as bad. Since most of our immunity is in the gut that could also be the cause of my GI problems. I do infusions of other peoples antibodies in the form of blood plasma but that just helps with bacteria or viral infections not gut problems. I just signed up for a Webinar session with Dr. Mark Pimental the world expert on IBS from Cedars Sinai in Los Angeles for the latest in IBS and Sibo. It's next Thursday. Maybe I can find out something new, but do now have high hopes.

We ran out of diet soda and I bought these teas. Green lemon and ginger peppermint and a tea called smooth move with senna. The green tea is really helping with me. Has only been about 2 weeks with no diet soda. No caffeine withdrawal. Green tea helping with my allergies. My GI issues are improving too. I had my dose of lamotrigine changed and reduced to lamotrigine ER 100mg. I am very close lab value wise to hyperthroidism. I have reduced my stress. And made dietary changes as well. I will be working on this more. I had a cholestecttomy in October 2014 so the bile entering my GI tract has been an issue too.

A good resource for IBS and SIBO is the work of Dr Mark Pimental at Cedars Sinai. He recommends not eating for 4 hours between eating anything to allow the MMC time to push your food through your GI system, since peristalisis stops when new digestion begins. He also suggests a low fermentation diet, which is similar but less limiting than low FODMAP. Trio test diagnoses SIBO; rifaximin and pepto bismol work well for me with H2 and HS producing bacteria in my gut.

I have been on my journey for more than four years. Since Jan 2021 actually. My solutions change, my gut changes. I maybe have 3-4 different problems affecting my gut/elimination/digestion. I focus on home remedies -- food, supplements and lifestyle (most drug choices are limited and don't seem to match my needs, but I am willing to try them) Just keep at it. You will learn, with medical help or not, what makes your gut work better.

Yes, I am on Creon, a LOW FODMAP diet, 6 small meals a day, no alcohol. My gut issues pretty much destroyed a lot of my self-esteem and my financial life, romantic opportunities, and I also lived abroad a long time, with hopes of returning. With the incredible expense of Creon, the US economy has seemingly only worsened over the last 6 years (for my field, and I work across three interrelated fields), it is depressing. I really do get it.

May I ask how one signed up for that webinar? That sounds really interesting. If you do find anything out, would you share it here please? Thank you so much! I can’t take much more of this.

Actually I just finished with the webinar. Basically Dr. Pimental states that almost all IBS D or C are caused by SIBO. And a lot of that is caused by having food poisoning at some time that started the whole process. Actually I did have food poisoning in France in the early 70s and I have had this problem for years and years. He also gives all of his patients breath tests and antibody tests. He does send out the latest papers he wrote free of charge. I don't exactly know how you go about getting them. But I imagine online somewhere.

Go to the Creon website, google it and get the Savings Card .

I’ve been tested for SIBO Many X & was negative.
I took the Xifaxan antibiotic for it anyway . It helped once , 9 years ago but then took it 2 more x & no help . I suffer chronic 7 diff digestive illnesses for 11 years daily . Seen 5 GI Dr’s , had over 20 tests done ☑️. Tried everything under the sun 🌞 they make . Eat tiny ( hate eating ) and healthy. No life to speak of anymore. So I’m not sure that Dr. is right about food poisoning/ causing IBS ?

Is that applicable for noncitizens in non-Western / modern countries? My understanding is that it isn't. I reached out once and that was the response, but maybe it depends on the country? I appreciate the reminder.