u/Plane-Role-8902

Hey y’all! First off let me say thank you to this community, you are a real support in tummy troubling times.

I’d like to lay out my situation and see if anyone is in the same boat or has any ideas of what to do next. the U.S. healthcare system is so siloed and slow and it’s really frustrating.

I‘m a 39 yo cis woman. I’ve had major GI issues since my early 20s. It all seemed to start when I was studying abroad in France in college (notable things about that trip: ate a lot of new foods, had to go on antibiotics for bronchitis). I was a very tiny 20 year old but I started boating so badly I looked 7 months pregnant and had serious constipation issues start.

Through my 20s and 30s the same issues continued off and on. There were periods when I’d feel ok but never 100%, and periods were I’d be miserable (bloating, constipation, nausea, abdominal pain). I went to a GI specialist in my early 20‘s who basically said all tests are normal, take Miralax. So I did and it helped a bit. In my early 30s I went to another GI specialist and they diagnosed me with IBS-C. Colonoscopy normal. we did an antibiotic trial to see if treating for SIBO helped at all, it didn’t. Their recommendations were take miralax or try Linzess (my insurance didn’t cover it so I didn’t take it) and try a low FODMAP diet.

I started with a nutritionist for the low FODMAP because I had no clue how to go about it. Low FODMAP actually helped for a while! I had many weeks where I felt almost normal, which was so freeing! Also, I can’t say enough about how helpful and informative nutrition counseling was. I Identified and cut out my worst triggers: gluten, legumes, brassica (e.g. broccoli), alliums (e.g. garlic and onions), and lactose.

All was well-ish for about 2 years until I started bloating again. Same symptoms as before but with a lot more diarrhea, upper abdominal pain, and increased acid stomach with reflux. We are now at the point where I am back at GI specialist. So far they have put me back on Miralax and have done a CT scan (besides evidence of constipation, nothing of note was found). I have an anorectal manometry appointment set up at the end of the month. Of my own accord I’ve put myself on a diet restricted to just the foods I know I can tolerate very well, which is mildly helpful but not sustainable because it’s really restrictive!

What else should I be asking the new GI specialist to look into? Should I push for another colonoscopy and upper GI endoscopy? What other tests have helped uncover the underlying issues for y’all?

For those with similar issues what have you tried that was helpful?

Again, many thanks to you all! I see the same sentiments of frustration and grief repeated over and over in this sub and my heart goes out to all of you. Good luck 🩷 I wish it were better for us all.

Hey y’all! First off let me say thank you to this community, you are a real support in tummy troubling times.

I’d like to lay out my situation and see if anyone is in the same boat or has any ideas of what to do next. the U.S. healthcare system is so siloed and slow and it’s really frustrating.

I‘m a 39 yo cis woman. I’ve had major GI issues since my early 20s. It all seemed to start when I was studying abroad in France in college (notable things about that trip: ate a lot of new foods, had to go on antibiotics for bronchitis). I was a very tiny 20 year old but I started boating so badly I looked 7 months pregnant and had serious constipation issues start.

Through my 20s and 30s the same issues continued off and on. There were periods when I’d feel ok but never 100%, and periods were I’d be miserable (bloating, constipation, nausea, abdominal pain). I went to a GI specialist in my early 20‘s who basically said all tests are normal, take Miralax. So I did and it helped a bit. In my early 30s I went to another GI specialist and they diagnosed me with IBS-C. Colonoscopy normal. we did an antibiotic trial to see if treating for SIBO helped at all, it didn’t. Their recommendations were take miralax or try Linzess (my insurance didn’t cover it so I didn’t take it) and try a low FODMAP diet.

I started with a nutritionist for the low FODMAP because I had no clue how to go about it. Low FODMAP actually helped for a while! I had many weeks where I felt almost normal, which was so freeing! Also, I can’t say enough about how helpful and informative nutrition counseling was. I Identified and cut out my worst triggers: gluten, legumes, brassica (e.g. broccoli), alliums (e.g. garlic and onions), and lactose.

All was well-ish for about 2 years until I started bloating again. Same symptoms as before but with a lot more diarrhea, upper abdominal pain, and increased acid stomach with reflux. We are now at the point where I am back at GI specialist. So far they have put me back on Miralax and have done a CT scan (besides evidence of constipation, nothing of note was found). I have an anorectal manometry appointment set up at the end of the month. Of my own accord I’ve put myself on a diet restricted to just the foods I know I can tolerate very well, which is mildly helpful but not sustainable because it’s really restrictive!

What else should I be asking the new GI specialist to look into? Should I push for another colonoscopy and upper GI endoscopy? What other tests have helped uncover the underlying issues for y’all?

For those with similar issues what have you tried that was helpful?

Again, many thanks to you all! I see the same sentiments of frustration and grief repeated over and over in this sub and my heart goes out to all of you. Good luck 🩷 I wish it were better for us all.