Category: Sjogren’s Syndrome (Page 3 of 23)

This is going to be one of those posts that I wish I had access to during some critical decision making times over this past year. I did more Google searching about this topic than almost anything else I have ever researched in regards to my health and when it came to personal experience stories, there wasn’t much to choose from.

So this is my little contribution to the world today in the hopes that it can help someone else who may also travel down this particular path. If you’re not interested in a good gallbladder story, no worries, I will get around to writing something different soon.

This story begins in February 2014. I was working at a church function one evening when all of a sudden I began to have sharp pain from the upper middle of my abdomen radiating to my right side. It was a pain I had never experienced before. I ignored the pain as my husband and I had Valentine’s Day dinner plans we were looking forward to. About an hour later, we were in the car on our way to dinner and the attack was so bad, I thought I was having a heart attack. I asked him to pull into a fire station because I honestly thought I wasn’t going to make it to an emergency room. That resulted in an ambulance ride to the hospital where I was told maybe I had gastritis and to follow-up with my gastroenterologist (GI). My blood work was fine, as was my heart. And nobody bothered to do an ultrasound or any other scan. Within a few hours, the pain subsided. Within 48 hours, the pain was pretty much gone.

I saw the GI doctor who was following me for other autoimmune related GI issues. I had an abdominal ultrasound done a few months before because it was discovered in 2008, during a scan for something else, that I had a cyst on my gallbladder, so I was getting ultrasounds every six months just as a safety precaution to make sure the “cyst” wasn’t growing.

All was well until around May 2015. I started to notice that I was getting fuller quicker when I ate and my bra and pants seemed tighter, even though I was losing weight. I also noticed that I would get that mid-upper abdominal pain (also called epigastric pain) once in a while, sometimes after I ate and sometimes randomly. I wasn’t overly concerned about it because as an autoimmune patient, there is always something wacky going on in my body. Some things end up a big deal and some just end up going away by themselves. However by June, I decided it was worth a call to my gynecologist. I was forty-four years old and the same exact age as my mom when she was diagnosed with ovarian cancer.

For those of you who don’t know, ovarian cancer is known as a silent killer because the initial symptoms are so vague and includes symptoms such as bloating and feeling full quickly while eating. I went in for an exam and had a pelvic ultrasound which showed that everything in that arena looked good. Whew!

By July though, I was feeling worse and experiencing issues with nausea for the first time. I made another appointment with my GI doctor. A few days later I had lunch and got that epigastric pain that was more intense than it had been. It was right after eating a salad with grilled chicken and some salad dressing. My husband and I had plans to meet friends for an evening out so I sucked it up and went.

I was feeling a little better by the time we got to the concert and proceeded to eat a cheeseburger with a side salad and rice. Within fifteen minutes I was in the bathroom vomiting and I honestly don’t remember too many times in my life where I’ve been in that much pain. Same pain, epigastric and radiating to my right side, under my ribs. I STILL stayed at the concert, however after throwing up again, I asked my husband to take me to the emergency room. By the time we drove the ten minutes there, the pain was out of control and extended all the way around my right side into my back.

In the emergency room, where I honestly thought I was going to die from this pain, I was given nausea medicine and several doses of narcotic pain medication, which helped tremendously. The attending doctor thought I was having gallbladder attacks and scheduled me for an abdominal ultrasound the next morning. I was given prescriptions for pain and nausea medicine, told to call my GI doctor for an appointment ASAP, and sent home.

And that’s when the fun really began (note sarcastic tone here!)

I just never bounced back. I had the ultrasound, which was negative and saw the doctor. He thought it was either a stomach issue or my gallbladder. To me the gallbladder seemed more like the culprit because 1. I’m a nurse and 2. I had lost a lot of weight, which can precipitate a problem with the gallbladder and 3. I had an autoimmune disease that causes inflammation, and that includes in the gallbladder. Meanwhile, I revamped my diet even more to cut out as much fat as I could in case it was my gallbladder.

So the doctor sent me for a HIDA scan. A HIDA scan is a nuclear medicine study that evaluates how well, or not well, your gallbladder is functioning. I thought for sure that this scan would tell us either way if the problem was gallbladder related or not.

Not.

Despite the fact that I felt significantly more pain during the test, which apparently can be an indicator of gallbladder troubles, my scan came back inconclusive. Typically, the ejection fraction of the gallbladder is considered normal it it is 35% or greater. Mine was 32%. Based on that, the doctor decided that the issue was not my gallbladder. He offered me two options: to do an endoscopy which would look at my stomach or see a surgeon to get his opinion on the matter.

Well, if someone tells you that it’s not your gallbladder, to me the next logical step would be to check the stomach, especially since some of the pain was in that region. So I checked myself into the hospital, got sedated, and had an upper endoscopy done. The results were normal.

A few days later I was starting to feel better, only to have that abruptly change for me by the following week. I had nausea, pain under my right ribs, pain in my mid-upper back and stomach area, my pants and bra didn’t fit, and I felt pretty unwell in general. Eating was becoming more and more of an issue as oftentimes I would feel sicker after eating. I called the doctor back. He told me he didn’t know where to go from here. Since people with Sjögren’s syndrome can have a stomach motility disorder called gastroparesis, I asked him about that. He didn’t think that was likely, but really had nothing else to offer me so I was scheduled for a gastric emptying study.

The results were normal.

He told me this at my follow-up appointment and then, all of a sudden, told me he thought the issue was my gallbladder. Like, out of the blue, despite no new information since the previous appointment where he told me it WASN’T my gallbladder.

OK, so this is where we are going to take a brief pause in the story. At this point, I knew I was in a mess and to be honest, my trust level in my GI doctor had taken a nosedive. While I respect the fact that medicine is not always an exact science, I wasn’t confident enough in his diagnosis to put myself under the knife. I was so frustrated and I didn’t know where to turn. Also at this time, I was being interviewed for a new part-time job. For a year and a half I had been working as a substitute school nurse, but this was my chance at a part-time school nurse position, which would be the first time I have worked on a regular basis since going out on disability in 2008. Needless to say, it was a big deal.

I decided to go ahead with the interviewing. I also discussed the situation with my super fantastic rheumatologist who also thought it was likely to be a gallbladder problem. She referred me to a GI doctor in Boston and I also set up an appointment with a general surgeon for his opinion. While gallbladder surgery these days has become routine, it would be anything but routine for me. If I had surgery, I would have to stop one of my autoimmune medications (the one that actually helps some) and I would have to consult with a hematologist because of my history of blood clots in my leg and lungs.

I ended up getting the job. The day after I started the new job, the surgeon told me he wanted to remove my gallbladder, like now. I was so upset. I felt like we’d been screwing around (for lack of a better term) all summer with this issue and now that I had this great opportunity, I felt stuck. What do I do? September and October at a new school is the absolute worst time to be out of work. So, I decided to tentatively schedule the surgery for my Thanksgiving break and meanwhile get a third opinion in Boston. I went to Boston and saw the new GI doc. He was great. He understood the dilemma I was in, but felt like because of this mysterious gallbladder cyst and my symptoms, it was worth the risk of doing the surgery. I felt like with all the information I now had, surgery was the next right step.

I never made it to Thanksgiving week.

During my pre-op appointment in October with the surgeon, it was decided that it would be to my great benefit to have the surgery sooner. So I let me boss and co-worker know and I was able to take off two weeks for the surgery and recovery.

Best decision ever.

On November 4th a had a laparoscopic cholecystectomy done. Now, as a nurse who has taken care of KIDS who have had this surgery, I really thought that two weeks off from work was overkill and that I would be up and around within a day or two. However the surgeon advised the two weeks off so that’s what I did.

The surgery itself went really well. For those of you not familiar with laparoscopic surgery, it is supposed to be an easier way to remove the gallbladder, as opposed to doing a full open incision. Instead, they make four smaller incision in various spots in your abdomen and use a variety of instruments to fill the abdomen with carbon dioxide (so they can visualize all your organs and such) and disconnect and remove the gallbladder through one of the keyhole incisions.

I woke up from the anesthesia and the first thing I noticed was how much pain I was in. I was forewarned about the shoulder pain and bloating you can have post-op from the carbon dioxide gas they use to inflate your abdomen. They were not kidding! However, I also noticed that for the first time in about six months, I didn’t feel like I had a baseball stuck under my ribs. I had felt bad for so long that it felt weird to not have pain in that area. And all my back pain was gone as well.

In the recovery area I really struggled with nausea and pain and despite numerous different pain medications, they just could not get my pain under control. I had great relief from a Dilaudid injection which lasted all of about an hour, but the oxycodone they gave me didn’t touch me at all. However I was able to drink and eat a few bites of saltines without vomiting, after they gave me a nausea patch behind my ear.

Then next thing I know the doctor comes by and it’s obvious that my pain issues are not significant enough to anyone to keep me overnight. And at that point, I was so miserable, I just wanted to get home and figure out how to manage the pain myself. The doctor told me that they sent my gallbladder to pathology, but that he didn’t see any stones. However he said that part of my gallbladder WAS anatomically wrong. It was actually folded in half at the neck (Phrygian cap). He told us that while that usually doesn’t cause major issues, it may have been the cause of my issues.

So my husband brought me home. I am going to preface this part of the story by saying that I know a lot of people who have had gallbladder surgery, and most of them recovered quickly. One or two did not. But, don’t let my post-op experience freak you out. It was thought that a big part of the reason that my recovery was more difficult was because I waited so long to have the surgery.

My biggest recovery issue was pain. I had a lot of incisional pain at two of the sites, gas pain in the shoulder something fierce, and abdominal muscle pain like you can’t even imagine. Nobody warned me about that. It felt like someone had gone into my abdomen and beat the crap out of me. It was difficult for me to even turn in bed and for the first week. I could not sleep lying down. I was slower than most in going back to eating a regular diet. The pain medication I was on was the same one I use for bad arthritis flares and it did very little to help the surgical pain. I was also trying to take as little pain meds as possible so I could restart my autoimmune medication, which cannot be mixed with narcotics.

I also experienced a lot of diarrhea the first two weeks, which is very normal, and common. I was told that some people struggle with that for quite a while, like sometimes forever, but it resolved relatively quickly for me. And, I was just completely physically wiped out from the surgery itself. Then, I ended up experiencing a very bad case of depression during the first two weeks after surgery. Like, scary depression. I wished someone had warned me about that as well. I guess it can be a result of the trauma from surgery.

But you know what? It all got better. Two weeks after surgery, I worked one full day and then a half day and then I was on break again for Thanksgiving. I probably could have used that one week off as well, but I really didn’t want to miss another week of work and it was good for me to be back among the living!

Today, I am six weeks post-surgery and things are pretty good. I have had a few twinges of pain below where my gallbladder was. This is normal and I now haven’t had that for about two weeks. One of my incisions wasn’t healing properly and had to be reopened a little. That sucked, but now it is fully healed. I am eating well, but I have noticed that I seem to have a bit of an aversion to any foods that are fried or high in fat content. It’s almost like my body is trying to tell me to reject those foods. I also eat smaller portions, but none of this is bad. The pain  is gone and the nausea, vomiting, bloating and back pain is all gone. In general, I feel more well.

I did have to go on a course of steroids, which I’m on now, to quiet down my autoimmune stuff. I made it through the recovery with no blood clots, pneumonia, etc and I am very grateful for that. I am having an issue with continued right chest/shoulder pain, which I first noticed when waking up from surgery. The surgeon has told me several times that it cannot still be trapped gas and that maybe things just need time to settle down. It has improved some since starting the steroids, so I am going to try and wait it out for now.

I did get my pathology report back during my post-op visit. In addition to the folded gallbladder, that little cyst ended up being a solid tumor which thank god was benign, and I had significant cholecystitis (inflammed and diseased gallbladder). So the end result was that my gallbladder was the cause of all my woes. And now, I never have to deal with it again.

As you can see, this was a very trying journey for me and I think there are a lot of lessons to be learned from my experience. To start with,like I say all the time, you have to advocate for yourself as a patient. I knew something wasn’t right with my body and I also knew that it was something beyond my typical day-to-day health issues. And I kept at it until someone listened to me and then figured it out. Tests are not the end all-be all of diagnosing people. The fact that my gallbladder was even showing a 32% working capacity at the time of the HIDA scan is even amazing to me. And yes, I am now officially seeing a new GI doctor.

Just as importantly, everyone heals at a different pace. Keep your expectations to a minimum. Heal on your own timeline and not on the timeline of a friend or family member who may have breezed through the surgery. Make sure you have a good, solid pain control plan in place for after surgery and that you understand that no matter how common a surgery this may be, it is still a major assault on your body. While people say you can live without a gallbladder and that is true, it actually does serve the function of storing bile to break down fats. Once that’s gone, your body has to completely change the way it operates. And that takes time. Not forty-eight hours or even a week. We’re talking months for a complete recovery.

I would also suggest getting out of bed and walking right away and making sure you do that several times a day, no matter how bad you feel. I firmly believe that is why I didn’t have any major post-op complications. The day after surgery my husband took me to a walking trail and I walked for ten minutes. Three days later, my parents drove me to a craft fair for a few minutes and the following day I was at church. Was it super hard and painful? Yes! But also very necessary.

A good heating pad is essential for the gas pain the first week or two and I can’t stress enough the importance of using a pillow to splint your abdomen when you move around, cough, etc. Keep your diet light for the first few days. See if you can get someone to stay with you the night you come home from surgery and the entire following day. Most of all, be patient with yourself and know that it will get better, one day at a time.