chronic illness

Putting My Latest Hospital Stay In The Past & Looking Towards The Future: Reclaiming My Hope With Chronic Illness

 photo PuttingThePast_zpsew9gdfvi.jpg
Another post, another trip to the hospital.

That’s right folks. Another trip to the hospital. And this one lasted almost a week.

I had my post-op checkup on August 4th and it went fine. Biopsies revealed what we already knew so there were no surprises there. He was surprised that my pain was still at the level it was and that I was still unable to eat. He said we would keep a close eye on it and I went on my way.

Two days later I felt like I had fallen into the seventh circle of hell. I was vomiting or dry heaving non-stop so I called my surgeon’s office. He wasn’t in yet but the nurse said that I could either go straight to the ED or she could get me an appointment that afternoon. Considering I absolutely hate everything about the ED, I opted to stick it out for the appointment. As soon as I got to his office, I went downhill and I went downhill FAST. By the time he got in the room, I was shaking from the pain and vomiting. Unfortunately Abby was with us and she had to witness it which shattered my heart. She was so scared and just held my hand. Of course he sent me straight to the ED, the place I had been trying to avoid in the first place. He didn’t want to go ahead and admit as I could have just been severely dehydrated and needed meds and fluids.

The ER is less than a half mile away so we got there quickly but of all days, the place was code red (meaning it was completely overflowing and they were on the phone calling in more staff when I rolled in).  Thankfully they saw how bad of shape I was in and I got slid through a little faster. A family friend came to pick up Abby and my mom had already planned to come down for the weekend so she just headed straight to the hospital.

Two nurses came in the room to start the IV and I warned them that I had really shoddy veins. They laughed it off and said not to worry, they were good. I hate that response because I know it means they aren’t taking me seriously and are going to half kill me before being able to sink the IV (why won’t they get one of those new devices that helps locate veins?!). I had one on each arm digging around. They would either blow the vein or not be able to stick it. I don’t think I have ever been so close to passing out. I felt my eyes starting to roll back in my head. Then I heard another nurse come in the room. She told the others to back off and she nailed it first try. She had been an army nurse for years and knew where to get people when you need to move quickly. She is most definitely a hero.

They started the fluids and meds and then the most God awful pain I had ever experienced in my life hit (I must have descended down to the 9th circle at that point). Had I know known better, I would have thought I was having a heart attack. I couldn’t breathe it was so intense. They gave me a shot in the shoulder for quick relief and while I usually hate the site of a nurse with a massive needle, at that point I didn’t care. It finally got me stable enough to go to CT. The scan didn’t show any stones or anything that had been left behind from the gallbladder surgery but their was some fluid and inflammation so they were going to admit me for the night for observation and to keep the fluids going.

That one night turned to five. We couldn’t get my pain under control nor could I keep anything down. Even ice chips would make me throw up. Over the course of my stay, they repeated the HIDA scan and an EGD. When my labs came in, it showed that my pancreas enzymes were five times what they should have been so the official diagnosis was pancreatitis. They dropped back down rather quickly but it still didn’t provide answers for everything that was going on. Once I was able to keep liquids down, I was discharged on the 11th with order to see my GI in Charlotte as soon as possible. I was able to see him last Thursday and he is sending me to a pain specialist he works with for a second option on treatment options beside pain medications. Praise Jesus! I have wanted to get away from my current specialist for quite some time but there is a lot that goes into changing clinics without looking like a drug seeker so with him making the referral and notating that we are looking for non-narcotic options, it will cut through a lot of the red tape and keep me safe.

I’m still not able to eat normally (Ensure and milkshakes are my current BFFs) but I am definitely feeling hopeful that change is just around the bend with the referral and the news that I finally having a hearing! My court date for my disability has FINALLY been set so we are in the home stretch of getting the whole ordeal put to rest! I am definitely feeling more energized and ready to take on the world. I read this post by my endosister, Kasanndra, wrote called “Why You Should Be Brave, If Nothing Else” and it was definitely something I needed to read today and maybe you do too. I am ready to put the past behind me, look forward to the future, and reclaim my hope with chronic illness.

I am working at getting back in the swing of things and get back on a regular posting schedule. I’ve also been doing some behind the scenes work to keep things running smoothly and to really put more of myself into the blog. If you have any ideas on what you would like to see happen on the blog or within the community, most definitely leave a comment or shoot me an email! I will be chatting with you again soon!

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!

chronic illness

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!