The good, the bad, and the ugly

Since I’ve last updated everyone, I have some good news and some bad news. I’ll start with the ugly/bad first so we can just get it out of the way and be on to the good!

The ugly:

My doctor broke the news to me that she was leaving not only the practice, but the state all together. I did love her and I will always be thankful for her because she was the first doctor who made me feel heard. She was also easy to get a hold of and super eager to make sure we got to the bottom of everything going on with me. Unfortunately, her husband was unable to find a job here so they are off to Portland, Oregon. I have agreed to meet with a new doctor at the practice (I see her on Monday) but I am not opposed to seeking a home in a new gastro’s office as I need to feel comfortable and well taken care of by my gastroenterologist.

Right before my doctor left, I had a breath test to look for SIBO (small intestine bacterial overgrowth). When she messaged me to tell me that I had IEM (Ineffective esophageal motility) she said that my test showed up negative for SIBO and I was pumped!!!! That would be my first negative test/good news in years. That good news didn’t last very long. She messaged me a few days later to tell me that while my test was negative for SIBO, it was positive for IMO (intestinal methanogen overgrowth). IMO is a bit of a beast. Basically, it means that I have microorganisms that produce methane or methanogens in my small bowel and colon. Methanogens aren’t quite bacteria, they are something called archaea (I won’t even bother explaining the difference between these guys and bacteria because it is sooo scientific and even I don’t understand it). I gotta tell you though...it’s a pretty weird feeling knowing you have tiny living things inside of you that produce methane gas. Definitely something I had to wrap my head around. IMO is very easily misdiagnosed as it’s symptoms align with so many other digestive issues. I don’t know if you remember, but a few posts back I mentioned that I was supposed to have this breath test done LAST SUMMER but because of covid it got pushed back several times. I believe I also said that I would be super pissed if this whole time I had tiny organisms living inside of me this whole time. Well...cue the super pissed because that is exactly what has been going on.

What is IMO?

It is considered a motility problem (so no big surprise that I have it). Basically, the archaea cause: malabsorption, food rotting in the stomach (my GP also does this, so double whammy there), food not emptying/traveling through intestines properly and food not exiting the body properly, pain, constipation, and gas. Methane gas can also be super harmful to the insides, causing more damage to nerves/intestines etc.

What am I doing about it?

My doctor put me on two antibiotics: neomycin and rifaxamin.

There is some controversy over this treatment as it wipes the gut biome completely clean which could be really, really good or really, really bad (seems like this is the case with any and all treatments for digestive disorders).

I went back and forth for a few days debating on if it was the right thing to do. I feel like after my surgery, I overthink all decisions related to my health nowadays.

In the end and after hours of research and wormholes, I decided it was worth it to at least try.

I had to take 5 pills a day (and not just any pills...gigantic pills that were the size of a small toe. For someone who has disrupted swallowing...that was super not fun).

I was on the meds for two weeks...it was a bit rough. It tore me up inside. It hurt to swallow them and then I felt them as they slowly worked their way through each part of my digestive tract and just as I stopped feeling them...it was time for another dose.

I won’t know for sure if they worked until I have another breath test done, so stay tuned for more info.

The bad:

More bad?

Unfortunately, yes…

Before my doctor left, she suggested I may also have something called LPR (laryngopharyngeal reflux) which essentially means that the acid reflux is now affecting my vocal cords and upper airway. She suggested I see an ENT for this, which I did. The ENT told me to see a gastro sooooo I guess I will be bringing this up with my new gastro next week. My ENT said that I am already on treatment for reflux and there isn’t much they can do since we don’t know the true root of the problem. LPR is also a beast but it does explain why my throat hurts all the time, why I lose my voice frequently and why I get a wet cough after eating or drinking or at night.

The good:

SO EXCITING that I can actually share good news with you guys. Someone said to me the other day (regarding my blog) “When will there be good news?” and it really got me thinking. My answer to that would probably be….I have like 78 dysmotility disorders and at any moment shit could go wrong and I feel the symptoms to some effect on the daily. The severity, intensity and duration of those symptoms are unknown. So the bad may happen more often than good and that is just the nature of digestive issues BUT….

I have been off of the antibiotics for a little over a week and now and I have been feeling GOOD. I hate to even type this because I feel like I’m jinxing myself (don’t worry...I knocked on wood 45 times before writing this). The beginning of the summer was super rough for me and it was also not fun being on the antibiotics but I’m going on almost two weeks of feeling like my old self again. With that being said...I still can’t eat a big huge meal late in the day and I still have my basic symptoms (nausea, bloat, difficulty swallowing). I was able to go to Florida and spend 6.5 days with my brother and future sister-in-law. They took me out to lunch, ensured that they were stocked up on all my safe foods, and my brother cooked me the best damn scallops I have ever had in my life. I floated in a pool every day. I walked on the beach at night. I drank a few miami vices.I binge watched the olympics. I even broke out some synchronized swimming moves (which I haven’t really done since I left the sport right after high school). It was amazing. I’ve been home for a few days now and my Florida luck has carried over. I in general feel lighter, happier...I feel like me! I will continue to pray, knock on wood and tell the universe that this is going to continue for a long, long time to come!

My daily mantra when I wake up is:

I have survived 100% of my bad days, so whether I feel good or bad...I’VE GOT THIS.