What is this thing you call SIBO? Part 2

Disclaimer: I will be discussing some sensitive stuff in my posts…. If you cannot handle blood, mucus, bowel movements and other bodily functions, this blog may not be for you. For the guys reading, menstrual cycles will be discussed. My hormones were so affected by this that it must be added. Fair Warning! Also, remember I am not a medical professional. I am writing about my own experiences and what has worked for me. Please consult a medical professional with your own health concerns/needs.

Disclaimer 2: In this blog, I discuss my own personal journey of becoming diagnosed with SIBO. It was a long and, honestly, ugly one. I am sharing my own experience of the condescending treatment I received from doctors. I do not discredit any of these doctors, their knowledge, or experience. We are all human.

I am not a writer, but I have a lot to say!

“Am I simply a vehicle for numerous bacteria that inhibit my microbiome? Or are they hosting me?” Timothy Morton

Initially, when things began to go wrong (or should I say when I really noticed something was not right), I was already in physical therapy for my hip. Remember, I mentioned I had pain in my lower right side that radiated to the tip of my hip bone. It was strange. I could do all my exercises at PT without any limitations or inducing the pain. They were stumped! I agreed to dry needling. I had no issues with the procedure and went on my way. That night is when the burping started and did not stop! So of course, I associated this burping with the dry needling. I couldn’t understand it but since it started on the same day…well, I assumed it was a correlation, right? I know I was grasping for anything that could explain what was happening to me. At another time, I will discuss everything I believed contributed to my downfall.

As each day went on, I started to feel sicker. I was starting to have a burning feeling in my throat and pain in my ears. This went on for a few weeks. About a week before my daughter’s wedding, I had to leave work early. I felt extremely weird (to this day I still cannot explain it). This fog just came over me and my throat and ears had so much pressure. I went to urgent care. GERD was the diagnosis and Nexium was prescribed. I should mention that I am not a person to take medicine. I would rarely even take Tylenol. Years earlier, I had two episodes from serotonin syndrome and it really scared me from ever taking pills again. Believe me, my doctors would say, “I would prescribe you something, but I know you will not take it”. I will discuss serotonin syndrome in another blog. It is something people should know about. It is a very scary syndrome.

Since my daughter’s wedding was just a week away, we had family visiting for the big day, and Thanksgiving right after, I took the meds. I didn’t want to, but I felt so awful. I had an appointment scheduled for the next day with my own physician. We will call her the troll from now on. I don’t like being mean but there has been a long history of issues with her. Trust me, I changed doctors soon after this. My appointment had already been scheduled because my physical therapist needed me to get an MRI of my hip and, of course, going through the military for medical care, you must have a referral for everything. She ordered the MRI and when I told her about the urgent care visit and the prescription, she then changed it to Prilosec. Like a good patient, I started taking the meds daily. The downward progression was so fast. I was walking around like a zombie. I was a middle school librarian at the time and among many responsibilities’, hall duty was one of them. I couldn’t even stand. I had to lean against the wall and practically sit on the floor. Just thinking about all if this brings back so many memories of the uncomfortable feeling I felt at the time. Of course, all this was being blamed on the stress of the wedding. Believe me it had nothing to do with the wedding.

The wedding came and went. Thanksgiving came and went. Each day brought another symptom. It got to the point where I was out of breath from walking a few feet. Forget even trying to walk up the stairs. I felt like I was drugged out. I couldn’t really hear people. I had no reason for being anxious other than feeling sick, but I felt like my body was in overdrive. My in-laws left the house at 6:30 AM the day after Thanksgiving. As soon as they were out the door, I looked at my husband and said, “Take me to the ER”.

I tried to tell them how I felt but it was just so hard to explain. My labs came back normal, so I asked them to do an ultrasound to check my gallbladder, which they agreed to do. About 5 years before, I had stomach issues (I will discuss my history later) and a CT scan had been done. They found my liver to be partially fatty, but my labs were okay. The fatty portion was not over a certain percent, so they said I was fine. Five years later, my ultrasound still showed a fatty liver. The only thing the doctor did say, and he showed my husband that when he brushed my skin, I was welting which he thought was a histamine issue. My discharge orders were to keep taking the Prilosec and, of course, see my doctor.

Yup, back to the troll. Now mind you, I am going in to see her because of my ER visit and because I felt like I was on my death bed. She walks into the room and states, “Oh you have a torn quadricep muscle and if PT doesn’t fix it, you have to go for surgery”. I guess my MRI of my hip came back!

At this point, I broke down. Are you kidding me? FYI - I didn’t need surgery and I have no idea how it became torn. According to the physical therapist, this is an injury I would have remembered. Back to the troll…Luckily, she was able to get me into a gastroenterologist that day at Walter Reed. Yes, the Walter Reed that the president gets his care. Keep this in mind! Initially, the doctor I saw seemed very understanding and I was shocked he listened to me. He stated he wanted to do an endoscopy but since he was a fellow, he had to have his colleague come in and go over the treatment plan. Remember, I am adopted and for 47 years of my life I had no medical history. This has always caused health anxiety because I like to be in control. Well, I told them that I recently found my biological family and although I do not know my history well, I knew my biological mother had esophageal cancer. Now, don’t they always tell you to reveal as much information as you can to your doctors? I told them, and they shot me down, “you don’t have esophageal cancer”. Okay… I didn’t say I had it; I said a family member did. The was the start of the condescending attitude towards me. So here is what they tell me they want to do…

Inject my sternum area with a steroid. Say what? They gave me some weird explanation of muscle wall pain or something. So, I said no. Many years ago, I had a steroid injection in my foot, which led to a major foot surgery because the injection ate away at the fat pad on the bottom of my foot. They truly insisted that they thought this would work. They persuaded me to do it. Now, the second doctor that came in had decided I didn’t need an endoscopy and that I did not meet the criteria of having GERD because I was not a middle-age fat white guy. I kid you not. He told me to continue taking the Prilosec and email them between Christmas and New Year’s. That was about 3 weeks away.

I went about my life for the next few weeks. Pounds were shedding off. I was getting sicker every day. I was down to eating 4 foods and waking up every hour at night in complete panic. I did what was asked and emailed them. I begged them to help me. No answer. I decided to stop the medication because it just seemed like it was making me worse. If you have ever tried to come off a PPI (proton pump inhibitor), you will know that you will have a rebound effect. This is when your body starts to over produce acid. OMG, did I feel so much worse… but I knew I had to just get through a week or two of weening myself off the drugs.

Well, what could go wrong now? One day I am getting out of the shower and I happen to look in the mirror. Remember I have a history of steroid injections eating away at my

tissue? Yup, history repeats itself. I had, what it looks like to be, a second belly button in my sternum area. Why do I listen to these people? About two weeks after I emailed my doctor, he calls me back. Meanwhile, within these two weeks, I called and left several messages. He agreed to the endoscopy because I lost 20 pounds. As we were getting off the phone, he had the nerve to say, “what are you going to do when the endoscopy comes back normal?” Excuse me? If I could have jumped through the phone and slapped him, I would.

During the several times I had called the clinic to get my doctor to call me back, they agreed to make an appointment with another gastro doc. I did go see this doctor before my endoscopy. I asked him if I could get a SIBO test and he flat out said you do not have SIBO. At this point, I had no bloating, and I didn’t have diarrhea. See, I confidently believe that these doctors do not understand this disease. You ask, “Well don’t they specialize in the GI tract?” Hmmm, you would think they would have great knowledge of the subject. You will soon learn that there are only a few that truly understand it, a few that accept it but think you need one round of meds to take care of it, and others who look at you like you have two heads when you bring it up. The only good thing that this doctor did was cancel the colonoscopy part of my procedure because he just didn’t think I could handle the prep with my weight loss. I was down to 95 lbs. at this point.

After my procedure, they explained that they didn’t see much, other than some mucus in my esophagus. No hiatal hernia…thank you! I was to get my results in a week. Well, a week goes by and another trip to the troll happens. I needed another PT referral and I updated her that the procedure went well. She spits back “well just because they said they didn’t see anything doesn’t mean that everything is okay” and walked out of the room. Wow! You say this to a person with health anxiety? I can’t tell you how many times I walked out of these appointments just shaking my head. She told me that I needed to see a therapist. Well, if you look at my chart, you will see that I am already seeing a therapist due to working through the trauma from my adoption.

About a week later, I get a message on my cell phone from the GI doctor. I will never ever forget this call. You tell me, does this sound like a good medical practice? He leaves a voicemail message that he has my pathology results… I have a strange pathology in my esophagus and I must come back in 3 years. HOLY SHIT! Now this takes the cake! How do you leave that kind of message on my phone? And what about now…do I just walk around for 3 years feeling sick and wasting away? I called the clinic back multiple times to speak with him. Yup you guessed it…he did not call back for a week. During that week, he did email me the results. I had intestinal metaplasia with no dysplasia. So basically, Barrett’s esophagus. When he called back, I asked him “how do I have Barrett’s when I don’t have a history of acid reflux” (remember I am not a middle-aged fat white guy). He laughed and said I have no idea. I put my foot down and demanded the SIBO test and he offered a 24-hour PH and motility study. Oh, what fun times!

At this point, I have done my research. I hate not knowing things and I always go into my appointments with the knowledge I need. So here is a glimpse of the types of SIBO.

My last post discussed SIBO and its symptoms. What I shared was a quick glimpse into what myself and most people experience, but by no means was this an exhausted list. For me to go into the some of the symptoms, you need to know more about the three types of SIBO. Remember, SIBO is a misplacement of bacteria. Bacteria causes gases as part of its normal process of digestion, so if these gases are being produced in the wrong area you will have pain, inflammation, and bloating (among many other things). This inflammation can cause a lot of harm to your small intestines and intestinal permeability (leaky gut) can occur. Leaky gut can causes fatigue, arthritis, headaches, skin issues, nutrient deficiencies, memory loss, depression/anxiety, food sensitivities and also lead into autoimmune disorders.

Hydrogen: This is the most common type of SIBO. People who have this type have an increase in hydrogen production and usually have symptoms of loose stools or diarrhea.

Methane: This type is different because it is not bacteria but archaea (single cell organism with no nucleus). People who are dominant in methane usually present with constipation. This one is harder to treat.

Sulfide: Initially, this type could only be diagnosed by evaluating symptoms. Now, they have a way to test for this just like the other two. People with this type of SIBO have diarrhea and rotten egg smelling gas.

The three types all have their own characteristics. You can have just one or a combination of them. I’m lucky enough to have a combination of hydrogen and methane. Insert sarcasm emoji.

That was your science lesson, so you understand how my test could turn out. My 24-hour PH and motility test was first. If you have not had to go through this, count your blessings. This test requires you to swallow a probe and it stays in place for a half hour while they have you drink water to measure the pressure when you swallow. They are looking to see if your esophagus has the motility it needs to move food and drinks to your stomach appropriately. You are awake for the whole procedure. Once they remove the tube, another tube is inserted into your nose and down into your stomach. It is left in place for 24 hours. It is attached to a box that records data. So, up until this point I could only eat like 4 foods. But, for this test they wanted me to eat a bunch of foods to see how I react. So, you want me to eat and swallow with a tube down the back of my throat into my stomach? Okay? It was extremely uncomfortable. I went back the next day to have it removed and I had to wait for my results. A week later I learned that I did not have acid reflux and my motility was fine.

The next week I went in for my SIBO test. This test requires you to do some prep work beforehand. Twenty-four hours before the test, you could eat plain chicken and rice (maybe even eggs). This wasn’t hard to stick to because I didn’t eat much anyway. You had to fast for the twelve hours before the test. It is a breath test and it is 3 hours long. Initially, you blow into a balloon and the gas content is measured for a baseline. You drink a lactulose solution and then drink every 20 minutes after you blow into the balloon. I should have known that something was wrong after the first 20 minutes. The tech told me that I didn’t need to blow so hard into the tube. I was blowing into it just like I did on the baseline test.

I must not have read the part that explained (nor did the technician tell me) that the lactulose solution was a laxative. We left Walter Reed three hours later. I felt like I always do...sick. That afternoon I decided to go to Target. Now, this was a big mistake. I am embarrassed even be talking about it. So, I was at the register paying…and then… the waves start. You all know those waves. Those cramps where if you don’t make it the restroom in .2 seconds… Well, I basically shit myself on my way out of Target. At this point, there was no use in going to the restroom. I just needed to get home to my own shower and a clean pair of clothes. Literally, I can’t make this shit up!

The following week was my appointment to receive my results. The clinic called and asked if I could come in early. I always take my husband to my appointments now because, believe it or not, these doctors treat me better when he is there. I just knew they were going to put me in a strait jacket this time. They called me in for my vitals. Then, my doctor came in and got my husband and took him to his office without me. Here it comes… they are conspiring and signing my papers to commit me. I walked into the office and my husband is smiling. I am about to throw up because at this point, I hate going to any medical appointment. My doctor then asked me about all the yogurt I had eaten back before I got sick. Well, I didn’t tell you that I probably ate, like, 50 Oui yogurts in about 20 days because I needed the jars for a school project. Life of a teacher. Certain probiotics are not good for SIBO. You are putting more bacteria into an area that is already out of balance. So, I told him about it. It was in my history from before because I research everything, and I knew this was a factor if I had SIBO. Finally, he says “You have SIBO and you have extremely high numbers”. I started crying…. not because I wanted this awful condition but because I finally was validated. They had been telling me for months there was nothing wrong with me. For 6 months, I had felt like I was on my deathbed. I asked him what kind and he said both methane and hydrogen. I looked straight at him and said, “I need the antibiotics Rifaximin and Neomycin”. The rifaximin is for the hydrogen and the neomycin is for the methane. Initially, this man was extremely humble. Honestly, I believe he truly felt bad for me. But when I told him I wanted both antibiotics (which is standard of care for this condition), he would only give me the rifaximin. Neomycin is a nasty antibiotic and can cause hearing loss. I do understand the hesitation to order this but the leading GI in the field of SIBO has research to show that this should be the standard of care. He said with my history of medication he wanted to see how I reacted to the rifaximin and we could eventually add it in. I had to email him to let him know how everything was going and he will put the additional prescription in…I believe I have heard that before.

To be Continued….

P.S. I put in a lot of sarcasm in my personal story and I can laugh about some of these situations now. At the time, I was at my breaking point and wasn’t sure how I would make it through an hour never mind a whole day. For anyone reading this that feels this way, remember you are strong and there are brighter days ahead. I still have days that I throw a pity party. This past Christmas was my third Christmas not being able to eat holiday food. It’s a struggle everyday but I must put all this into perspective. I know my limitations and I have found my new normal.

Live Healthy. Be Happy.