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chronic illness

Another Day, Another Surgery: My Gallbladder Removal Surgery Story

It has been a hot minute since I have blogged last and I am so sorry about that!

During my last post, I shared a little about the health struggles I was currently experiencing. We had the go kart drama on vacation but thankfully there has been no long term effects of that bit of action!

Otherwise, for months, I have just been feeling miserable. Sounds kind of normal for life with chronic illness but this was a level of misery above and beyond anything I had ever experienced. The word misery sounds a little over dramatic but honestly it is the only word that could remotely describe the intensity of what I was feeling. I was staying incredibly nauseous and this wasn’t feeling queasy or a little sick to your stomach. This was hardcore nausea. It even surpassed what I felt after my obstruction. I could not keep anything down and that is if I could even force myself to eat in the first place. If it did stay down, I had horrible, horrible stomach pains. I was constantly feeling weak/faint and I was losing weight at a rapid pace. So of course, my first stop was seeing my gastroenterologist. My primary (and amazing) GI was on sabbatical so I saw the PA and she immediately scheduled me for an EGD with the fill-in doctor for both the current issues and to follow-up on the adenomas that were removed last year to be sure they had no returned.

The EGD did not provide any helpful information. The good news was that the adenomas had not returned so I was super happy about that but the bad news was that we were no closer to finding out why I was so sick. This is where things get crazy.

For the record, had my regular GI not been on sabbatical, things would have progressed much differently. The following drama would have totally been avoided.

Because I was still so sick, I kept pressing the GI office for answers and begin to question if maybe it was my gallbladder that was causing the problem. Dr Fill-in said no and that he thought it was a heart issue so I needed to call my primary care doctor. I found this to be completely out of left field but I set up an appointment with my primary care doctor because I knew this needed to be resolved.

In the meantime, I had a check up with my neurologist and he did the nerve blocks and trigger point injections for my migraines (which hurt like nobody’s business but do make a difference in the occurrence and intensity of my migraines). He was also concerned about the nausea and weight loss and didn’t understand why the Dr Fill-in wasn’t taking it more seriously but when I told my neurologist about my fainting episodes, he did some tests and diagnosed me with orthostatic (postural) hypotension. Basically when I stand up from sitting or laying down my blood pressure can drop as many as 20 points which can result in fainting, dizziness, and feeling weak. Thankfully it can be easily managed. Gold star for solving one problem!

Now for the next.

I had my appointment with my primary care doctor and the first thing they did was an EKG and like we already knew, it came back perfectly normal. After doing an exam and going over some questions, he really thinks the source of my trouble is my gallbladder (even though Dr Fill-in dismissed it). He scheduled me for a HIDA scan to check my gallbladder function and within a week from that visit we had the results: my gallbladder had ZERO function. It wasn’t doing anything except taking up space. I wanted to call up Dr. Fill-in and put him on blast but I didn’t (although you can be sure when I have my appointment with my GI when he gets back from sabbatical he will hear it all).

I was originally scheduled for surgery tomorrow but last Monday, the pain and nausea was so bad that my husband took me to the ER and they decided to do the surgery that night. I had an absolutely amazing medical team from start to finish. God set up everything that night from the nurses to the surgeon on call. He knew what I needed to feel at ease and to be taken care of medically. The thought of surgery doesn’t make me flinch but the thought of the IV scares the crap out of me. The ER nurse got the IV in first try and I didn’t even feel it. . The surgeon and the OR staff were just as amazing. The moment I woke up in recovery, I was in pain but that heavy and miserable nausea I had been feeling for months was immediately gone. I mean I was nauseated from the anesthesia but that heavy, overwhelming feeling was completely erased. Although the scan did not show any stones, when they took my gallbladder out they said it was full of stones so it was a really good call to go ahead and get it out that night.

The bad news of the surgery was that I am full of adhesions. He didn’t take them down for the fear of them coming back worse but he can pretty much guarantee that I will have future obstructions and problems with adhesions. It was one of those things I knew but it hurt having to hear it out loud. He said that the surgery would take away the nausea and the upper-quadrant pain I was feeling from my gallbladder but that I would still deal with considerable abdominal and pelvic pain despite the surgery. His guess was that I would likely have another obstruction within four years. That scares the crap out of me. My obstruction experience was so traumatizing that the thought of reliving it possibly multiple times takes me to a place where I have no words.

The two takeaway points from this are:

1- Trust your gut. I knew something was wrong and I knew that I need to keep pushing until I found the answers. I would not have thought that my primary care doctor that I saw maybe once a year for cold or infection would have been the one to save me but he took the time to listen and he fought for me just as much as I did and I will forever be grateful for that man and what he did for me.

2- Follow your passion. I had let this blog lay dormant and yes, I had good reasons but I allowed my passion to be swallowed up in the yuck I was dealing with and I don’t want to let that happen again. This blog means so much to me. This community has saved me so many times over the years and I want this community to continue so that hopefully it can help save others. Living with chronic illness can be a lonely existence if we let it and I just want this to be a place where, yes, we can commiserate about the sucky parts of chronic illness but we can also find hope, joy, grace, encouragement, and love. I hope its a place where we can find the beauty in the every day.

 

I’m still recovering from surgery but I plan to bring A New Kind of Normal back to life and I am excited about things to come! I want to get back to the roots of spreading hope and sharing my faith but I am also excited about incorporating my love of makeup in a little bit too! Thank you to LucaLogos for the beautiful new design! I hope you guys come along for the ride!

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Mission Aborted

 

When Routine Procedures Go Wrong

Yesterday I arrived bright and early at the hospital in Charlotte for my colonoscopy and EGD. Having dealt with chronic GI issues over the last several years, this was going to be my third colonoscopy and fifth EGD. I have Celiac disease but do not test positive on the blood work so I have to have a regular EGDs to monitor but I don’t mind them because there is virtually no prep (just no eating or drinking) and with sedation, its quick and painless.

Colonoscopies on the other hand are torture.

The procedure itself isn’t the torture. Honestly once I get the IV without a nurse killing me, I’m golden. Its just the preparation that gives me anxiety.

Yesterday I shared my updated bowel prep survival kit and since I had to be at the hospital so early (and driving an hour after drinking the morning dose of prep juice would be hell), we checked into a hotel near the hospital with my survival kit in hand. I usually try to get the prep as cold as possible as it seems to make it a little easier to get down but our room didn’t have a fridge (hotel fail) so I kept it in the ice bucket until time to drink. I had the idea to mix the prep with apple juice (versus drinking a glass of prep followed by a glass of apple juice) and it really did make the drink more tolerable. I may not drink apple juice for awhile but it was really helpful in keeping the gagging to a minimum.

As I’ve said before, yesterday was not my first time in the colonoscopy rodeo and sucky as the prep is, it has always done its job.

Until yesterday.

The day started off on a high note as I scored an amazing nurse who got my IV in on the first try with virtually no pain. I was actually taken back for the procedures 30 minutes EARLY (does that EVER happen?!) and the anesthesia team and nurses in the room were excellent.

The EGD portion went off without a hitch and then they started the colonoscopy and hit a wall. Quite literally actually. And I learned firsthand about one possible colonoscopy complication.

The bowel prep was ineffective in fully emptying by bowels and the colonoscopy had to be aborted. Even though I followed the directions precisely (and given the amount of time I spent in the bathroom it seemed to be doing its job), for some reason the prep was just not enough and they were unable to continue.

I woke up in recovery very nauseous and crying. Not an emotional crying, just major tears were flowing. My first memory after waking up to the nurse wiping my tears with a cold cloth and wanting to throw up. They were able to give me a little Zofran to make the trip home a little easier. My doctor had met with my husband after the procedure but the nurse had left the procedure notes and discharge papers on my bed when she left to call for transport.

As I was putting on my shoes, I glanced at the papers and read that the colonoscopy was aborted due to poor bowel prep. The tears returned. To spend 12 hours in misery for nothing was a hard blow. The notes also read that a repeat colonoscopy is recommended so not only did I go through the prep for nothing but now I learned that I would have to go through it again? Heck no.

When the nurse returned, she noticed my tears and tried to help by explaining his notes. Despite following the instructions precisely, it seems that my gut is moving so slowly that it just was not powerful enough to get a thorough cleanse. For a repeat I would likely be required to stay on a liquid diet for 3 days instead of 1 and need to drink a more powerful medication. Awesome

It definitely was not the news I expected. I had expected to hear that my gastroparesis was just as severe (if not worse) than the last time it was checked. His notes cited no motility was noted in my upper GI so I am not sure how much the paralysis extends beyond my stomach. I had one gastric polyp that was removed and biopsied as well as other parts of my upper GI to check how my Celiac is doing and to check for other problems. I had expected him to say something along the lines of needing to up the amount of Miralax I was taking because of slow motility but everything else looked normal and biopsies were only taken to rule out Ulcerative Colitis and Crohn’s as a precaution. I was not expected him to say he had to abort.

The biopsy results will be in within the next few days and his office will call with the results and to schedule what needs to be done to follow up. In the meantime, I am started a medication to help with the slow gut and constipation issues directly related to using narcotic medications to treat my pain. He knows the complexity of my endometriosis and adhesion issues which requires pain management so he wants to try his best to work around it to provide more comfort (and function) due to resulting GI issues. The medication will not help the gastroparesis but it should help get things moving and provide some relief.

Hopefully I should have more information by the beginning of next week. I have an appointment to see a new doctor at the Womens’ Center for Pelvic Health on February 24th so hopefully between this appointment and the biopsy results and follow-up information from my gastroenterologist, we will soon have a game plan!

For now I am watching the snow fall outside and am trying to recover from all of yesterday’s “excitement.” I forgot how brutal the gas pain can be!

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May 30th – A Date That Has Redefined My Normal

May 30th has turned out to be a very significant date in my personal journey.

Five years ago, on May 30th, I had a total hysterectomy at the age of 26.

I remember the anxiety of signing paperwork stating that I understood that the  surgery would make me permanently incapable of bearing children and cause me to have to redefine my womanhood. I remember the way my husband held my hand as we walked into the hospital at 5:45am. I remember the way I felt so loved and supported as I had a prayer shawl made by the ladies at church wrapped around me up until the moment surgery began and was placed back around me when I woke up in recovery. I remember the fears that overwhelmed me the moment the nurse said it was time to go. And I remember the look in my husband’s eyes as he held me and kissed me one last time as they took me away.

This surgery was completely life changing. While I don’t think I completely understood just how much it was going to impact me emotionally and spiritually, I had done everything possible in order to feel prepared for what was going to follow. I had done tons of research and had many conversations with my doctors. I joined a forum so that I could talk to others who had completed the surgery or were scheduled. Everything was set up for me to be out of work. I bought cute pajamas and had a bag packed with the necessities for the hospital. We had the house cleaned and set up to help me be more comfortable when I got home. I felt prepared. I like order and structure so it meant a lot to me to plan and feel at least somewhat in control.

One year ago, on May 30th, I felt like I lost all sense of control as I was rocked by emergency surgery.

I remember feeling off when my alarm went off for work. I remember taking Abby to school and praying that I would be able to make it through the day. I remember sitting at my desk knowing that I wouldn’t. I remember crawling into bed two hours later praying that the pain would stop. I remember the moment I realized something was seriously wrong as I laid on my bathroom floor. I remember three amazing women who took shifts staying by my side for the next eight hours in the ER as we waited for answers. I remember the six people it took to start an IV (and praying for large amounts of drugs) and waiting outside the CT room terrified of what they were going to find. I remember a doctor walking into my room in a bow-tie telling me that I was in serious condition and was going to be admitted to the hospital because of a bowel obstruction. Less than 48 hours later he would tell me that I would be in surgery in less than an hour. I remember one of my girls dropping everything to make phone calls and drive to my house to pack me a hospital bag. I remember barely getting through the barium tests and my mom holding my hair back as the severity of my blockage made itself known. I remember the fear I had when I sent John the text letting him know what was about to happen. I remember that being the last thing I remember for the next three days.

The surgery turned my life completely upside down. I had experienced a lot of pain in my life due to endometriosis and my previous surgeries but this was more than words could explain. I was admitted on Friday night at 8pm and surgery on Sunday around 1pm. After sending the text to John, I honestly do not remember anything until Wednesday night. My first memory post-op was of the nurse removing my bandages and seeing my incision for the first time. I instantly began to cry. The seriousness of what I had just experienced became very real. When surgery was performed, a portion of my bowel had already died and gangrene was spreading. Had I not went to the ER when I did, the outcome could have been very different. It was a very scary feeling. My initial hospital stay lasted a week however during recovery I would have two additional partial obstructions (where my bowels were reattached) which would require an additional week hospital stay for each. It was a very difficult time for me and my family. It was a summer of chaos.

Both of these events have a played a big role in shaping who I am. Each required change and a struggle to redefine what normal meant in my life. The hysterectomy was a planned change. We knew it was coming and prepared for it as much as possible. It became the stepping stone  to creating our family through the miracle of adoption which would later bring Abby into our lives. The bowel obstruction surgery completely blind sided us. When John left that Friday with Abby to visit family and officiate a wedding, I would have never imagined that I would have to call him from the hospital. I would never have predicted that the summer would have been so chaotic. I felt like I lost control of every aspect of my life. I was so sick and recovery was so hard. It was hard on me physically, emotionally, and spiritually. It was hard on John, our marriage, and our family. Even recalling how hard the experience was on Abby and recalling the look in her eyes as she looked at me in the hospital bed puts a knot in my stomach. Our normal was thrown out the window, stomped on, and burned and it would take us a lot of time and work to redefine our new normal.

I believe that there are many turning points in people’s lives. Birthdays, graduations, weddings, and births are welcomed celebrations and opportunities for growth. There are other days though and while they may not be as joyous or as welcomed they can still shape you and make you into a better person. May 30th happens to be one of those days.

disclaimer

Information posted here should not be considered medical advice. It is not intended to replace consultation with physicians or other healthcare providers. A New Kind of Normal covers my personal experience and because every person's experience is unique, it should not be relied upon as a substitute for professional healthcare.

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