Dysautonomia, POTS, and IV hydration.

My whole life I have struggled with syncope, or passing out. During these episodes my blood pressure drops and my heart rate skyrockets. While I have experienced this for many years, it wasn’t until August I finally received a diagnosis: postural orthostatic tachycardia syndrome or POTS!

According to doctors, POTS is a type of dysautonomia* that is defined by “orthostatic intolerance”, which means when a person stands up, a large amount of their blood pools in their legs instead of circulating back up through their heart. While blood pressure decreases, their heart rate goes up. A healthy individual usually has a slight increase in heart rate, by about 10-15 beats per minute, within the first 10 minutes of standing. POTS is considered present if the heart rate increases by 30 beats or more per minute for adults. I wore the Zio Heart Monitor for 48 hours. Over the course of two days my heart rate was recorded at >190 multiple times after standing indicating a severe case of POTS.

In order to be diagnosed I went through a battery of other tests with a cardiologist. I had a stress test in which my heart rate elevated to 202bpm, a tilt table test which resulted in my blood pressure dropping to the low 80s/40s, and an echocardiogram. Luckily my echo was normal, showing no structural defects.

POTS can be extremely dangerous. My heart rate averages 100bpm and is frequently much higher. I have made some life style changes and medication changes to deal with the orthostatic tachycardia and hypotension, but still have syncopal episodes and have hit my head multiple times. First, I am now on a low dose beta blocker three times a day. Most importantly, I always sit up on the edge of the bed for an extended period of time before standing up. Next, I wear compression stockings – especially when walking a long distance. I take salt tablets in the morning and salt my food. Lastly, I drink a LOT of water. But because of my high ostomy output that causes severe dehydration, I have to get IV hydration too.

My IV pole.

I have a home health nurse that comes twice a week to access my mediport and hook me up to a special kind of fluid called lactated ringers. They have added supplements, like potassium and glucose to help with my malabsorption issues.

The process takes about 5 hours total. I simply sit up in bed while the fluids rehydrate me. I do activities such as drawing and blogging, or when I’m feeling bad I’ll just nap.

My IV setup.

The fluids help immensely with my symptoms. Before receiving a bag of lactacted ringers my heart rate can be 130-150bpm and I can feel lightheaded, weak, and shakey. Then I have the fluids infuse and my heart rate will resolve to 90bpm and I feel better.

I am very thankful for finally having a diagnosis, although the symptoms are hard to manage sometimes.

*Dysautonomia is a term that refers to group of conditions that affect the automatic nervous system. October happens to be Dysautonomia Awareness Month! If you have any more questions please visit the contact page.

Naming my medical devices improved recovery.

Diglett and Portabella Winfree

There are a multitude of changes that come with surgery, especially if a device is implanted or part of your body becomes exposed in a new way. I’ve had two such experiences, first with my stoma and then with placement of my mediport. On both occasions I spent a great deal of time researching the procedures and gaining knowledge related to their use after surgery. This process included reading all written information physicians gave to me, as well as combing Google for articles or blogs related. This phase of research was vital to acceptance of the changes for me. Multiple blogs I found from those in the ostomate community [ostomate = describes a person with an ostomy] spoke about naming their stoma.

Depiction of ileostomy stoma from Mayo Clinic

Before I get too far ahead of myself, a stoma is a small piece of intestine that is brought to the abdominal wall for stool (or “output” as its frequently called) to empty into an ostomy bag. It is done when someone has severe IBD or structural deficiencies in their digestive tract. Many people use the word “ostomy” when actually describing the “stoma.” I will try my best to be consistent and use the proper language throughout this blog. There are multiple types of ostomies; I have an ileostomy, which is high riding on the right side of my abdomen. (See photo.) Other types of ostomies include urostomy, for urine, and colostomy, to indicate opening in large intestine.

At first the concept seemed silly and unnecessary, since it already had a technical name (“stoma”.) But I mentioned the idea to my surgeon and she absolutely agreed. She explained in further detail that talking directly to the named stoma, like you would a baby in the womb, would connect you to it in a powerful way. Bonding to it, speaking to it, and nurturing it were all encouraged. I found that by naming it, the stoma took on a personality of its own. I yell at it directly if it is misbehaving, I laugh at it when it makes weird noises, and I refer to it in casual conversation without people getting grossed out by medical terms. It has been very liberating.

Diglett from Pokemon

My stoma is named “Diglett”, like the Pokemon (pictured.) My husband is the perfect level of nerdy and thought the stump of intestine looked a lot like this Pokemon from his childhood. I agreed! From then on we have lovingly referred to him as Diglett. His name being a little silly has actually prompted a lot of conversations about him that may not have happened without it. There are many people who shy away from discussing a topic if it is deemed “gross” or “too personal.” By having a funny, cute name it breakdowns the barrier of the stoma seeming too “medical” or “sterile.” When I look at my body and see my stoma, it feels more like a friend than an alien species. It made the stoma much easier to accept and live with. It truly has become a part of the family!

My first experience seeing Diglett

Recovering from a surgery as big as a colectomy is daunting. Directly after surgery I was only allowed to lift five pounds total. I quickly realized that nearly everything weighs that amount- even blankets! I also had a strict diet to follow that took time and planning to achieve. My skin was raw and painful from output and adjusting to ostomy bag adhesives. The hardest part of all was that I experienced body dysmorphia because my stomach had a foreign object on it that messed with my self-esteem. But because of the relationship I had developed with Diglett prior to the surgery, I was able to talk directly to it (and about it to others) until I felt better. As time went on I became more comfortable with Diglett and my confidence actually increased as a whole!

My mediport came seven months after Diglett, but we knew it was probably going to be placed for several weeks. This gave me more time to come to terms with the change my body would go through and to research the pros/cons of the device. It was apparent that the port was necessary due to frequent dehydration and hospitalizations. Again, my husband was the one to figure out the perfect name for it. He called it “Portabella” – ‘port’ to refer to the actual device and ‘bella’ to have a short nickname. I love it because Bella is actually an alternative word for beautiful, which I truly believe my mediport is. Its ability to give me the sustenance I so badly need is in fact a beautiful thing.

I have discussed this topic on other platforms, mainly Instagram, in the past and received great feedback from it. A dear friend shared this idea with her aunt and she was so inspired that she named her own mediport “Sadie!” She is now trying to convince her husband to name his knee replacement. My friend wrote to me that her aunt wished her physician would have given her this advice prior to her surgery. She shrewdly pointed out that this process could actually make aspects of major surgery fun, instead of all just scary.

Any device, from a prosthetic limb to a pace-maker, would benefit from a name. Take the time to get to know yours.

If you have a medical device that you’ve named, I’d love to learn the name and discuss if the name influenced your healing. Feel free to leave a comment or send an email to chronicallyjuliann@gmail.com.

Day 16 in the hospital.

As mentioned in the “my history” post, I am currently on my third week in the hospital. While I did have a short reprieve (I was discharged for less than 48 hours), laying in a hospital bed for nearly 16 days now has inspired me to continue blogging. I hope the information I share helps you understand the life of a #spoonie.

On my fourth day of admission (07/15) I had a flexible sigmoidoscopy completed to determine the etiology of my recent rectal pain and bleeding. “Fortunately” it was normal. I say that in quotation marks because while it’s a positive there’s no acute infection or disease process requiring immediate surgery, the negativeness of it means that more testing will be required. It also results in some doctors disregarding your symptoms entirely. While my core team of inpatient physicians have been thoughtful and dedicated to finding an answer, one of the consulted fellows spoke to me and my husband condescendingly and implied a normal exam meant I wasn’t actually in pain. He belittled me and insulted me, by claiming I had limited medical knowledge and therefore probably wasn’t as sick as I felt. This frustrated me on a multitude of levels.

First, I am a professional medical scribe with a vast working knowledge of medical terminology and treatment guidelines. Next, as a former nursing assistant I gained hands-on experience in healthcare and learned that a negative result does not mean you stop looking for an answer. Even greater than that, I hold a masters in medical anthropology meaning I have become an expert on some facets of chronic illness. Lastly, and I would say most importantly, as a patient for 15 years I have developed a strong grasp of GI terms and treatments. I know my body better than any other person, and can intelligently verbalize my symptoms. As a healthcare professional, I was bothered he dismissed my knowledge – but I was most offended as a well informed, chronically ill patient. I became sickened by the thought that patients without those backgrounds may be completely discouraged by a doctor like that and stop looking for a diagnosis. (I have so much more I could say on this subject, but I want to stay on topic. Look forward to a future post speaking directly on this issue soon!)

So, as I was saying, my negative flex sigmoidoscopy last week sent the doctors back to the drawing board. And quite frankly, it was a good thing they had to keep searching, or else they would likely not have discovered I have adrenal gland insufficiency (a potentially life-threatening problem.) I am happy to say I am now receiving proper treatment for the hypocortisolism!

As for the rectal pain/bleeding, high ostomy output, and abnormal vital signs that put me in the hospital originally… we are still no where closer to a diagnosis. So tonight I am NPO to prepare me for a series of tests tomorrow. First, a repeat flex sigmoidoscopy with the intention of obtaining different biopsies. Second, an ileoscopy, which is essentially the same thing just the camera is entered through my stoma. Lastly, an EGD where the camera evaluates the lining of the esophagus, stomach, and first part of the small intestine. With all three happening simultaneously, there won’t be a part of my GI tract unexamined.

The doctors hope to confirm a diagnosis of celiac disease with a biopsy, since my blood test was inconclusive. I am still waiting on the results of ACTH Stimulation Test to better understand the cause of my adrenal gland insufficiency. A number of tests are being done on my ostomy output, which the attending physician said are rare. But since my case doesn’t fit a common presentation, are warranted.

Just prior to midnight I finished drinking the bowel prep for the procedures and now am NPO [nothing by mouth] until the tests are complete. I will require conscious sedation and will likely remain sleepy most of the day.

Frustratingly, the biopsy results won’t result until early next week. So it will remain a waiting game. Until then, the doctors will continue to adjust my 20 different medications to achieve homeostasis and treat my pain. I should also have a consultation with my former surgeon about surgical interventions (including anastomosis or proctectomy.)

In the mean time, I desperately need an entertaining show to stream while I’m cooped up! Drop a comment with a show or movie that you recommend.