Inflammation

[KatieW]

I've posted before, but to sum it up: I had c diff that was undiagnosed for over 2 months. My doctors kept telling me I had anxiety and IBS (even though IBS meds didn't work), and I had no idea the antibiotics I took could've caused c diff. Even had a colonoscopy and a GI Dr who was clearly not good.

New PCP tested right away for c diff. One round of vanco got rid of it. Lucky, right? Except for the fact that it's been 6 months since I tested l negative and I still have inflammation, loose stools, indigestion, excessive burping, food intolerances, wheezing after eating (lungs are normal), and lower stomach pains after eating. I lost 15 lbs before they caught it, and have luckily gained back 7!

I also had an exploratory lap for gyno reasons, and they noted my intestines were inflamed. My new GI ran all types of blood and stool cultures, only noting slight inflammation. He says it's not high and not concerning.

I feel like I can't eat anything anymore. Smoothies and soup give me watery D if I consume too much, I'm digesting way too fast (seeing foods from lunch in my next morning BM and not corns and such, I've seen strawberries and pieces of easily digestible food in it), and by meal 3 of the day, my lower stomach is in nots no matter how light and bland the meal was.

I take probiotics and fiber for bulking. I can't tolerate dairy so can't drink kefir or eat yogurt anymore.

Has anyone experienced inflammation for this long? I feel like it's not normal to be inflamed for 6 months++ on end with no relief, and only getting worse.

Unfortunately, there aren't many GI specialist near me, so switching is impossible without waiting months for an appointment. It took me almost 3 months just to get into this new one. I like him too, but I feel like no one truly gets post c diff and just keeps telling me I'm fine.

[AllisS]

"Inflammation" is very unspecific as a diagnosis; not sure it really means anything clinically. Since you don't live in an area with many specialists, you may want to get a referral to a major medical center where you could be evaluated by a team -- sounds like maybe that should include a motility specialist. (Motility refers to speed of transit of food through one's system.) Though traveling there could be inconvenient, it'd be preferable to local doctors just telling you you're "fine."

[roy]

Cant diagnose by internet and none of us are Drs but the wheezing is quite a clue.
Have you mentioned that to your GI?
It's an often missed symptom of GERD and occurs a few minutes after eating.
Add in all those other symptoms and you have typical upper GI acid reflux symptoms!
Dont forget probiotics are unregulated medication and added fiber that's not from food is also foreign to your body, DONT assume they are suitable for you.
No two people are the same and what helps one person might cause GI symptoms in another.

[KatieW]

AllisS - I agree. That's the issue I am having. I keep being told I have inflammation and nothing happens from there. I was put on an IBS diet, but IBS doesn't cause inflammation. I've heard often that IBS is the magic diagnosis band aid when doctors don't know. I will have to look into other specialists like you stated in a bigger hospital. I've been hopping around looking for answers for quite some time, so I'm just frustrated. Thanks for your reply and advice on doctors!

Roy - Trust me, I'm not looking for a diagnosis, just if anyone has had this same experience and advice in pointing me to help. The first GI diagnosed me with GERD and that was it. No advice on what to do, no meds, just "have a good day." I've told my GI that after their recommendations I haven't had relief, and all that they told me to switch the type of fiber. Sorry, I know no one can tell me anything, I'm just super frustrated that I can't get anyone to actually try and help me to feel somewhat better. This new GI tried once, and that was kind of it after the IBS diagnosis.

[AllisS]

You're correct about the IBS diagnosis -- it's a so-called "wastebasket" diagnosis and just means the doctor doesn't know what the actual problem is. While wheezing after eating could point to GERD (what's being called the "silent" or respiratory type), that, too, has become something of a wastebasket diagnosis. I've been told I have it, myself; it's starting to seem as though *everyone* has it, which would render it meaningless. As for fiber, that might not be the panacea for everyone; try skipping it for awhile and see what happens. I'd reiterate my original suggestion: try and get seen at a medical center with a digestive-diseases department. Some of the digestive symptoms that you describe don't fit the pattern of "silent GERD."

[NanciT]

I have to agree, sometimes it requires you to travel a bit further to a large medical center where there is a GI Team. If symptoms continue, it's worth it.
This can be very frustrating but if you do not improve you need to be your own advocate

Sorry you are going through this

NanciT

[KatieW]

AllisS- I actually stopped the fiber and cut my probiotic dosage in half and it seems slightly better. Still not normal, but back to where it was post c diff. I'll start my research on some hospitals this weekend! I agree and have always been frustrated with the IBS and GERD diagnosis. It was originally made by the first GI who didn't even test me for C diff after I explained my symptoms. He also "wasn't concerned" about my 15 lb weight loss in two months, hence the change of doctors. Thanks again for your reply!

NanciT - You're right! We are our best advocate majority of the time! I feel as though I've been through so many doctors, but if that's what it takes to get better, I have to try :) thanks for your reply!