This is a hard update to write. We’ve been really silent on the blog, and not because we wanted to be, but because we’ve had a really crazy couple of months.
At the beginning of September, Chris got really sick. When I say sick, I don’t mean a cold or even the flu, it was unexplainable, excruciating abdominal pain anytime he would eat. He spent almost 3 weeks in two separate hospitals and had a ton of diagnostic tests done, all which had come back normal, even though he was in severe pain. We had to do our own research and search for a doctor willing to treat him based on speculation. Finally, we did, and thankfully he’s feeling better and better every day. Chris and I have been talking after this whole ordeal, and we can’t get over how surreal it feels. In the beginning of September, Chris spent most of his days in bed, in horrible pain anytime he would try to eat anything. After several ER visits, he was admitted to Wentworth Douglass Hospital for almost a week. They didn’t find anything, and sent him home where he continued to get worse. We decided to seek help elsewhere and drove down to Massachusetts General Hospital and Chris was admitted for two weeks. Still, they couldn’t find anything major, told us his organs were just sensitive and discharged him. Finally, after a very long fight, we got the procedure we had been requesting for over a month and it worked! During this time, I was definitely in survival mode, trying to care for Lexi and make sure things were ok at home while also trying to be with Chris as much as possible. Now that Chris is home and recovering, we are starting to get back into our normal routine.
I wanted to go into a little more detail of everything Chris went through. With so much going on, we had a hard time keeping all of our friends and family in the loop on every detail. On September 6th, Chris woke up suddenly in the middle of the night in severe pain. We couldn’t explain it. He waited all night and by 6 AM, caved and decided to go to the ER. At the ER, the found nothing and sent him home. The next day, the pain was still excruciating, so he went back to the ER. Again, unable to explain it, they sent him home. Chris wasn’t improving, but instead was getting worse. He waited a day and then went back to the ER and this time he was admitted to the hospital..which also happened to be my birthday :(. Chris spent 4 days in our local hospital where they ran a whole battery of tests and couldn’t find anything obvious. They concluded that Chris was experiencing muscle spasms and sent him home with antispasmotics. The medication seemed to be working in the hospital, and we were really hopeful that it would just take a few days to get into his system. Instead, over the next few days, his condition worsened. Chris couldn’t eat food without having severe abdominal pain and spent the following days in bed. We ended up going back to the ER a final time because he was in so much pain. That was the worst experience I have ever had. The doctor basically acted as though he was there seeking drugs and suggested that he speak with a therapist. In the following days, I felt constantly sick. I didn’t know what to do for him. The hospital, the many doctors he saw, had all failed us and Chris was getting worse.
Up until this point, I had been pretty hands off with Chris’ care. I even brought sewing projects for Lexi’s winter clothes to work on while I sat in his room. I was fully trusting that the medical system would diagnose him and treat him. After 4 ER visits and a hospital stay, I started to realize this was not the case. For the next week, I made it my mission to figure this out. My nights were spent researching conditions that matched Chris’ symptoms until around 2:00 AM, then sleep for a few hours, wake up, take care of Lexi and then repeat. There was no way I was able to sleep anyway, as my husband, who also was unable to sleep, writhed around in constant pain. I spent a lot of my research focusing on the upper right quadrant of the abdomen which contains the liver, gallbladder, pancreas and biliary tree. I knew that he had his gallbladder taken out in 2016 and had experience very similar symptoms to what he was experiencing now. I requested all of his records from two years ago and started combing through them. I found that after his cholecystectomy in 2016, he also needed an ercp and sphincterotomy because he had a back up of bile and sludge. Finally, during one of those nights of researching, I found something. I was so excited! Sphincter of Oddi Dysfunction matched Chris’ symptoms identically. And, even better, his experience from 2016 also matched. My excitement over this discovery was quickly subsiding the more that I learned. Basically, there are 3 types. Types one and two have clear findings on lab and tests results. However, in type three Sphincter of Oddi Dysfunction, all test results come back normal and the only evidence is right upper quadrant abdominal pain. Because of this, doctors only treat the symptoms with medication and some doctors don’t even think the condition exists. Unfortunately, Chris was falling into this elusive type three category. Every test that he had had up until this point was normal. I knew we would have a lot of barriers to overcome in getting correct treatment for Chris, so I started researching doctors who had experience with this condition. We live in New Hampshire, and there were absolutely no doctors in our area. However, we also live extremely close to Boston, and I found one doctor specifically with experience in this condition. We knew we weren’t getting anywhere with Doctors in New Hampshire, so we decided that we needed to go out of state.
On Tuesday night, September 23rd I drove Chris down to Boston in the pouring rain. Once we were in the ER, a doctor examined Chris and went over everything he had been through the past month. I explained that he had his gallbladder out in 2016 and went through the exact same thing. Then the doctor said something that made my mouth drop. He said “yes, we’ve seen this before, sphincter of oddi dysfunction is rare but can happen. Lets keep him over night and get the GI doctor in to examine him.” I couldn’t believe it, first they knew about this condition and second, he was finally going to get correct treatment! The ER at Mass General was a crazy experience. Once your examined by the ER doctor, you are then sent to observation, which is basically just a giant waiting room that all the patients sit in together. Some are getting IV’s, and some are laying in beds anywhere they could fit. We happened to be sitting next to a woman who had quite obviously just taken drugs. She kept picking up the phone, calling her mom to cuss her out and then abruptly hanging up on her. We spent almost 40 hours in the ER before finally being admitted.
Finally on Wednesday, Chris saw the GI doctor but unfortunately, it was not as easy as the ER doctor made it sound. She was not interested to hear our thoughts on what we thought was wrong with Chris. They admitted him, and ran a ton of different diagnostic tests. During the two weeks he was there, we asked for an ERCP many times. Each time, we were told no because Chris’ test results were all normal. Also, during that time, I found out the doctor that we specifically had come to Mass General for was now with a different hospital. We came to a point where we realized that Chris was not going to receive the treatment we wanted him to get. He was still so sick but after being there two weeks we decided that it was best just to be discharged from the hospital and come home, where we would keep searching for a doctor to treat him. The hospital diagnosed him with visceral hypersensitivity, which was so absurd, and put him on a bunch of different antidepressants and neuromodulators. The medications didn’t help, they just made him feel like a zombie all day long. Chris was still in pain and unable to eat.
Once Chris was home from Mass General, the plan was to see one more local doctor, and if that didn’t work, we were planning on traveling to Indiana. Chris just couldn’t function on the medications he was prescribed and the pain was debilitating. The doctor who we scheduled the appointment with was actually the same doctor who did the procedure in 2016. It was our last hope to get the procedure we had been begging for. Before the appointment, I was so nervous and so fearful that he would brush off our concerns like all of the other doctors we saw. Once we were in the room with the doctor, all of our fears vanished. The doctor briefly went over his notes and then said “I spoke with Dr. Chung on the phone and they weren’t sure what else to do with you. I agreed to do the ERCP. I don’t know if it will take your pain away, but we’ll see.” We couldn’t believe it. We didn’t even have to ask for the procedure, he just agreed to do it. At checkout, we scheduled the procedure for exactly a week later and waited anxiously.
In the few days leading up to the procedure, I became filled with doubt. I wondered if I making the wrong decision by pushing so hard for this procedure. The reason that we couldn’t find a doctor to do the procedure was that it is really risky. I’m not a doctor, and since his test results were all normal, we pushed for this procedure based on our own theories. If Chris experienced any of these complications, it would be my fault. However, my gut kept telling me we had to at least try. The day of the procedure finally came and we were so hopeful. We checked in and Chris was taken back to pre-op. The procedure only lasted a half hour and afterwards the nurse came in the room and told me that the doctor found papillary stenosis and stenosis in his bile ducts. He preformed a balloon sweep to expand the ducts and preformed another sphincterotomy. Once he did that, bile came spilling out. I was so relieved I wanted to cry!
The next few days after the procedure, it was hard to tell if the procedure was successful in providing him pain relief. The gas that they pumped into his chest was really painful and it took a few days to dissipate. It has been about a week and a half now, and Chris is feeling a lot better! He can eat again! Chris is still having a little bit of pain in that area of his abdomen and we are hoping that his body just needs more time to heal. We have a follow up in a few weeks with the doctor and I cant wait to find out the doctor’s thoughts on the whole ordeal is and what the official diagnosis is.
Honestly, the past few months have been really hard to process now that we are on the other side. It feels surreal to think about everything that Chris went through. This past week, we have been focusing on getting back into a routine and getting Lexi a lot of one and one time with Chris. We’ve also had lots of family dinners – something we haven’t been able to enjoy in 2 months! Not only are we following up with the GI doctor, but we are also working with a naturopathic doctor and a nutritionist. What I have learned about this condition is that it’s chronic, and unfortunately will probably be something that Chris will have to manage for the rest of his life. We are focusing on prevention and hoping that by following an optimal diet and lifestyle that we can somehow keep this condition at bay for a long as possible. It is still so baffling to me how Chris’ medical history was so blatantly overlooked at both hospitals by so many different doctors. Its also amazing to me how flippantly his condition was taken as well. Chris couldn’t eat food and was in extreme pain, yet it was acceptable to send him home and advise him to see a therapist? As his wife, who had lived through this experience with Chris nearly two years earlier, the problem was obvious. The medical system is not what I thought it was. The lack of compassion that we experienced was very disheartening. These two months were such an eye opening experience to what so many people with chronic conditions go through.
I wanted to end this update by thanking all of our friends and family. Both my parents and Chris’ parents sacrificed so much time to take care of Lexi, and stepped in to help me with daily household tasks that were falling behind. So many of you visited Chris in the hospital, and if you couldn’t make it in person, texted him to check in or just encourage him. I knew we had a good family, I just didn’t know how good!