Showing posts with label Symptoms. Show all posts
Showing posts with label Symptoms. Show all posts

Monday, September 25, 2023

La Mémoire Noire

female child peering through the darkness with her eyes visible and barely any of her face showing through the darkness

La Mémoire Noire or The Dark Memory is a letter series written to my first surgeon. The man who caused everything ultimately in my life to reach this point today. I was to have 2 surgeries beginning at the age of 9 and his surgical errors altered the course of my life. Ultimately, I instead would require 7 surgeries and experience repeated life-threatening complications resulting in medical PTSD, suicidal and homicidal ideation. This is trauma I am still trying to heal from nearly 30 years later that has touched every aspect of my life and how I react, view, and process the world. I have a lot of hate and anger for this man. As part of my therapeutic efforts to heal, I am writing this series to him. It is my raw, unedited thoughts and feelings towards this man and all that transpired following my first surgery that he performed. It will be a series that is periodically updated as I process each letter, my trauma, and continue inching towards healing embodying full love and forgiveness for myself and others.

Sunday, April 30, 2023

When You're Eager for Medical Testing

 


I don't think I've ever been so excited to undergo medical testing as I have this last year. I felt like I was literally begging for any medical test to be ran and I wouldn't even say I felt that way during the 6.5 months I spent seeing 7 specialists to ultimately diagnose my Abdominal Migraine. Sure, I was willing to do any test, but I didn't realize at the time that I needed tests to be done...I didn't have any idea of what needed to be done to determine why I was having debilitating pain that kept me bed bound for the day except for my time spent at work. But this year has been different. In fact, everything has been different ever since my gallbladder removal in August 2021 and I believe this present issue stems from that surgery as well.

My gallbladder removal exacerbated my undiagnosed Abdominal Migraine and I believe it also kickstarted something else - what exactly is yet to be determined. Let me back up and I'll give a brief timeline for understanding. 
  • August 2021 - gallbladder removal, chronic debilitating pain starts following surgery. I'm started on Lyrica in December. After surgery, I begin losing about 10 pounds a month until February because I have no appetite and Mike forces me to eat one meal a day. In March, I started to gain a small amount back and then hold steady as my appetite improved a bit.
  • April 2022 - diagnosed with Abdominal Migraine, Amitriptyline medication is added to the Lyrica. Sometime between April and July, I start noticing that not only do I feel full easily and quickly but I also feel like I need to vomit.
  • July 2022 - I start vomiting whenever I feel too full. It literally feels like I have food all the way from my stomach to the back of my throat. If I don't vomit, I continually regurgitate it and swallow it on repeat until I lean over, open my mouth, and squeeze my stomach. This is not vomiting caused by nausea. This will begin to progress to increase in frequency and ease to the present day. My weight continues to incrementally increase again until by January 2023, I have gained back almost all of the weight I lost following my gallbladder surgery. 

This entire time, I'm keeping my GI specialist informed. I started asking for an EGD, even though I wasn't due for another one until 2023. He tests me for C. Diff, he's monitoring my labs but everything keeps coming back fairly decently. In spite of vomiting up to 3 times a day, I'm maintaining weight. Some days I don't vomit at all. Most of the time when I do vomit, it's not immediately after ingesting food or drink and I don't always eat healthy foods. So my body is still able to get enough calories and nutrients to sustain itself. We try adjusting PPI dosages and trying different PPI medications. I undergo a food test study where I eat a meal with radioactive substance that is recorded in a body machine to determine the rate my stomach empties into my small intestine - to determine if I have gastroparesis. It shows my stomach empties food faster than someone with gastroparesis. 

In December 2022, I finally undergo an EGD...but it's pretty normal, some mild gastritis but no unusual acid found, no bile seen at all, esophagus looks good, my usual polyps are found, no sign of a hiatal hernia. I ask to complete a SIBO test, just in case. It came back as suspected SIBO...but I question the accuracy because I think I may have skewed the results by doing my baseline breath sample twice because I was uncertain, I had done it correctly at first. But either way, I completed a round of two antibiotics for SIBO. Nothing changes. 

The only thing that reduces the vomiting, not eliminate it, but reduce it is not ingesting anything. However, I discovered during a partial blockage that when I don't ingest anything...my body will make me vomit bile - and that was one of the most, if not the most, awful taste I've ever experienced. 
I undergo an EGD with Bravo Test to check the PH level of my stomach acid. For 10 days before the attachment of the Bravo test capsule to my esophagus, I had to stop my PPI. This resulted in vomiting bile that tasted of pure lemon juice. At least it was better than regular bile taste. My throat becomes inflamed and irritated though from the vomiting of bile without the protection of my PPI. The Bravo test comes back with significant acid reflux and esophagitis. I'm still not sure why I needed to complete this test because I've been diagnosed with GERD since my colon removal in 1995. However, my GI assured me that it would be helpful in identifying what may be going on and what steps to take. Oddly enough though, the surgeon I went to in 2021 for a second opinion about my hiatal hernia following my gallbladder surgery recommended an EGD with Bravo Test. The reason he did, I've since forgotten because my hiatal hernia was so small at the time, he wasn't even positive I had a hernia. And I wasn't having the urge to vomit or uncontrolled acid reflux. But fast forward, and I'm going to have that test done anyway. Fine by me, just as long as we're doing something to identify the cause for my vomiting and can attempt to resolve it. 

The next test to complete is an Upper GI Series with Small Bowel Follow Through. Essentially, I drink barium contrast and images are taken as my body digests it to help evaluate for small bowel obstruction. In my experience, this hasn't been very helpful except to say yes, I do have adhesions or in the case of when my small intestine wrapped around itself. But this type of test was unable to determine there was a stricture around my small intestine from adhesions resulting in my near death from excessive vomiting and diarrhea. That was only discovered through exploratory surgery. However, I am willing to undergo this test. It is just one step closer to something else being done and a checkmark for insurance requirements for further testing. My GI wants to do this test though due to my history of a stricture around my small intestine caused by adhesions. He thinks that small bowel obstruction could be contributing to my vomiting, and it very well could be, that is what caused my vomiting in high school after my ostomy reversal. 

The following week I will undergo an Esophageal Manometry. I had a PTSD related panic attack once I looked up this test. A tube must be inserted through the nose into the stomach and then the patient swallows while the tube measures the motility of the esophagus to test for different conditions. I absolutely want to do this test but I'm terrified of being awake while this tube is placed. I think this test is necessary as I've thought all along that there is something wrong with my esophagus. Fortunately, my GI agrees to place the tube under sedation and to allow my dad to be with me during the test to help calm my trauma responses. This is scheduled for May 11. Just like the EGD in December 2022, I am 100% ready to do this test. I am excited, eager, impatient to do this test. In fact, let's do any and every test that may possibly answer why I'm vomiting so it can then be treated. 

In all reality, I anticipate I'm likely facing surgery to resolve my vomiting at some point in the future. The Esophageal Manometry can help to diagnose or rule out a few conditions, majority of which can be treated with surgery. I accepted a long time ago that I would likely have future surgeries and at this point, if surgery is what will help resolve the vomiting...I'm eager to undergo surgery too and the sooner the better. I just want to identify the source and work on a treatment plan to resolve it. 

Monday, August 15, 2022

Advocating at Medical Appointments

man wearing business suit

Self advocacy is often a trial by error skill that we learn out of necessity with chronic illness. Each encounter with a medical provider may be different and can be a teaching opportunity for us. Studies have shown that the more someone is motivated to be involved in their healthcare, the better health outcomes a person has. Self advocacy quite literally can make the difference in better or poorer health. 

I've been fortunate to be able to learn from my mother as I watched how she managed not only her own health with Familial Adenomatous Polyposis but also how she managed my medical appointments when I was a child and teen with the same health issues. I watched her in her dealings not only with medical providers but also the insurance and medical supply companies. My mother is a fierce advocate and I learned a lot over the years from her. Here are my best practices that I use for myself for my medical care.

  • Research
            The first best thing one can do is be armed with information in advance of your medical appointment. I research my symptoms and my health conditions on a regular basis and I gather information from a variety of sources - health websites, medical studies, medical communities, and medical providers I personally know. 

Knowing about one's health conditions and symptoms is vital not only for personal knowledge and self-advocacy but also to improve coping and adjustment to health issues. Giving up control of one's healthcare management to providers without any input or understanding of health conditions and treatments allows for opportunities for treatment options to be missed. 

Gathering information from various sources increases the identification of possible health conditions causing new or worsening symptoms, alternative treatment options that haven't been tried yet, and different medical tests to request.

For instance, I abruptly started having chronic nausea in 2015 after a hospitalization. The standard treatments of oral Zofran or Phenergan were not effective in controlling my nausea. I researched other medications and remedies for controlling nausea and I asked my online medical communities what has worked for others with chronic nausea. After a lot of trial and error and trying various over the counter and prescription options with my doctor, I was able to effectively control my chronic nausea with Compazine and peppermint oil. If I hadn't researched other options and requested my doctor to prescribe medications I was requesting, I wouldn't have been able to find a tolerable solution to my nausea management. I do the same with requesting medical tests and procedures to be conducted when I'm having a new or worsening symptom - whether that's a lab test or procedure such as a scope or imaging test.

  • Specialists vs. Primary Care
For appropriate care to be provided, it is crucial to be followed by the appropriate type of doctor for the condition requiring evaluation and treatment. Primary Care doctors are a great place to start for evaluation but if it is a condition outside of general care, we need to be seen by a Specialist for that condition or part of the body. Primary Care doctors have a general understanding of the body whereas Specialists specialize in specific conditions and parts of the body.

When seeking the care of a specialist there are several ways to find a specialist you're looking for. Such as obtaining recommendations or referrals from your existing doctor(s), requesting a list of Specialists from your insurance plan, recommendations from other patients in the chronic illness community, and online medical databases that also provide reviews. Depending on the condition and one's area, some patients choose to be seen by a Specialist outside of their state. 

I am under the care of 7 Specialists and none of these issues should be managed by a Primary Care doctor, they require the care of Specialists:
  1. Gastroenterologist manages my GI rare diseases and everything that comes with them and the GI organs I'm missing as a result. He monitors my lab values regularly, adjusts medications as needed, completes my upper and lower scopes on a regular basis, monitors my liver, etc.
  2. Hematologist manages my anemia. While my GI Specialist is able to manage my anemia through oral medication and iron infusions/transfusions as needed, a Hematologist specializes in blood disorders and has an even better understanding of my anemia than my GI specialist.
  3. Nephrologist monitors my kidney. I have renal cysts that she monitors via ultrasound annually, treats my UTIs, and monitors my lab values regularly. She manages my Vitamin D. While my GI Specialist is able to manage my Vitamin D levels and medication, Vitamin D and the kidneys are intertwined providing my Nephrologist a better understanding of this connection.
  4. Neurologist manages my Abdominal Migraine. Once I obtained a neurological disorder diagnosis, my Neurologist began managing my medications to treat the Abdominal Migraine including the pain and nausea that it causes. Previously, my GI specialist was ordering my Lyrica and nausea medications when we believed it was solely a GI issue.
  5. Endocrinologist monitors my thyroid. With FAP, a yearly ultrasound of the thyroid is needed to monitor for cancer risks. She also monitors my thyroid via labs as well. 
  6. Gynecologist not only monitors my reproductive health but she also monitors my hormones to ensure my estrogen is within range and not worsening my Abdominal Migraine. My organs are adhered to my abdominal wall and pelvis by scar tissue and I have a large ovarian cyst, she monitors these issues to determine if either are attributing or worsening my pain levels and to treat the issues as indicated.
  7. Dermatologist monitors and treats any skin issues I have. While I don't require regular appointments at this time, she has treated me for cysts and scars from my abdominal surgeries that weren't healing. 
  • Request and Review Medical Records
Obtain copies of all of your medical tests and procedures including history and physicals. Request the images of any imaging tests done. While the majority of people aren't able to read their own imaging disks, it can be helpful to have them on hand in case a future provider would like to see the images. Review your medical records, compare them to previous records, and ask questions to your providers about any concerns or questions you have in your records and test results. Keep a copy of your medical records in a folder to take with you to doctor appointments, especially with new providers.
  • Track Symptoms in Detail
Keep track of your health symptoms and any changes to them in detail so that you can accurately and fully discuss your symptoms with your provider. 
    • What the symptoms are and what they feel like
    • When they started, changed, or stopped
    • Duration of symptoms
    • What affects the symptoms - medications, foods, etc
  • Keep a List of Everything to Discuss at Appointments
Medical appointments can easily veer off track from how you anticipate they'll go and it can be easy to accidently leave out information or questions. To stay on track with your concerns and questions, keep a list of everything you want to discuss in your medical appointment - questions, symptoms, concerns, treatment or test requests, etc. Take with you any applicable medical records or research to your appointment with your list of things to discuss.
  • Create Online Accounts with Medical Providers
The easiest way to communicate with your doctors is to create online accounts. This is easier for you and for them. This saves you time waiting on hold and will reduce your wait time for a response. It is much faster for a provider to read your question or concern and reply to you than to try to reach you via phone. Some providers have online portals but don't check them as regularly as others. Ask your provider what their process is with the online portals. If you have sent a message and not received a response back within a week, call the office. 

Another benefit of the online portals is I receive electronic copies of all my labs, office visit summaries, medical procedures and tests that are completed with my lab and hospital system. I can also request records through my hospital online portal without having to call or fax a request. 
  • Maintain Regular Communication with Providers
If you have a change in health or a concern and don't contact your doctor in between your appointments, they will assume everything is stable. For your doctor to best provide care, it is essential to maintain regular communication with providers to alert them of any health changes, concerns, or questions you have. They are unable to help you if they don't know something has changed in between appointments.

The easiest way to maintain communication is via online patient portals, however, calling the office remains better than waiting until your next appointment when there's an issue. 

My GI specialist says I use my online portal more than any other patient of his!
  • Avoid HMO Insurance Plans
HMO insurance plans significantly reduce your medical care freedom by requiring referrals to see other doctors and also have a smaller in-network selection of providers. If at all possible, choose an insurance plan (i.e. PPO) that doesn't require referrals. Having the freedom to schedule your own appointments with any in-network doctor saves you valuable time, stress, and increases your ability to access medical care. 

As a child, when I started having chronic abdominal pain, my parents had an HMO plan. A referral to a GI specialist was required by the PCP in order for me to be evaluated. My PCP refused to refer me for evaluation stating I "was just a whiny child". My parents had to change to a PPO plan in order to obtain GI evaluation and it was discovered I had inherited Familial Adenomatous Polyposis from my mother and a year later I required my colon to be removed due to my colon polyps starting to turn cancerous. The possible alternative outcomes at the time are countless and unknown due to delay in care caused by having an HMO plan and a PCP who refused providing referrals. 
  • Obtain Consultations 
Don't hesitate to ask to be seen by other medical specialties for consults and second opinions. If you have a PPO insurance plan you can find a provider in-network and schedule a consultation without requiring anything from your existing doctors. Specialists are trained to focus primarily in their area of expertise and while your health issue may not be in the realm of another specialist, there's no harm in obtaining a consultation to confirm if something else is occurring.

For instance, I have been having chronic pain shortly after my 8th surgery to remove my gall bladder. After my surgeon released me after ordering a few tests to try to determine the cause of my pain, my GI specialist took over the evaluation. I obtained a second opinion from another surgeon and without success from the tests my GI specialist was ordering, I scheduled an appointment with a Rheumatologist and Neurologist for consultations. Rheumatology was unable to identify any issues in their field but the neurologist was able to provide me a diagnosis and treatment plan for my symptoms. It took 6.5 months and consulting 7 specialists, but I finally was diagnosed with Abdominal Migraine
  • Ask About Differential Diagnosis
A differential diagnosis is a list of possible conditions that share the same symptoms. This is not a final diagnosis but rather a theory of possible causes for particular symptoms. Once you have this list, then you can ask your provider about each potential cause of your symptoms - why does your provider think or doesn't think X is causing your symptoms and so forth through the differential diagnosis list.

  • Request Explanation and Documentation of Denied Medical Requests
If you ask your provider for a certain medical test to be performed or a medication to try and your provider refuses to order the test or medication, then ask why that test or medication isn't being ordered for you. After receiving an explanation, if you still believe the test or medication should be ordered and the provider refuses again, tell your provider that you want your request, the provider's refusal to order the requested items, and the reasoning for refusal to be documented in your medical chart. 
  • Change Providers
If you aren't comfortable with any of your doctors, discuss your concerns with the doctor and if the issues aren't resolved, you have the right to change providers - essentially firing them. This can be more difficult if available providers is limited by HMO insurance plans or the area where you receive care (i.e. rural). If possible, it can make a significant difference in medical care if one is able to travel further for care. 

There are some instances where the process of changing providers needs to be carefully done to preserve continued treatment. For example, a dialysis patient cannot receive dialysis treatments without being under the care of a nephrologist. While a dialysis patient can change to a different nephrologist, it is vital for the patient to have an accepting nephrologist before ending care with (firing) their nephrologist to avoid any lapses in their care.

Monday, April 25, 2022

My New Diagnosis: Abdominal Migraine

After 6.5 months of chronic pain that was only improved but not cured by Lyrica, consults with 7 types of doctors, a multitude of tests and an absorbent toll physically, mentally, and financially - I finally have a diagnosis: Abdominal Migraine

All of my tests have come back normal from my various specialists except for my pancreas enzyme and platelets that were elevated. I underwent 2 CT scans, abdominal ultrasound, MRCP, 3 MRIs, EEG, sleep deprived EEG, EMG, nerve condition test, and a neuropsych test with all unremarkable results that provided no explanation for my new symptoms and pain. With these normal results, my neurologist came to the conclusion that I likely have abdominal migraine which is a type of migraine. 

My doctor explained that migraine is a chemical imbalance in the brain and depending where at in the brain determines what type of migraine and mine happen to be abdominal. He stated this would explain my trunk pain, chronic nausea, dizziness, scalp sensitivity, hearing sensitivity, headaches, lightheadedness, brain fog, appetite loss, and chest pain. Through our discussions and medical history review, we came to the conclusion that my abdominal migraine started in 2015 after I fell and hit my head. A couple days after the fall, I had a sudden, intense headache that pain medication was unable to treat and after that I've had chronic nausea ever since.

The only medication that's been able to manage my chronic nausea is Compazine, which is an abortive migraine medication to break through migraine symptoms. And Zofran can actually trigger a migraine and hasn't been effective in managing my nausea. To treat my abdominal migraine, he's started me on Amitriptyline which is a preventative migraine medication. 

My doctor explained that abdominal migraine is typically diagnosed among children and often forgotten about for adults often leading to other diagnoses such as IBS. Through our discussions though, this diagnosis makes sense considering all of my accompanying symptoms and the time frame of events. I'm relieved to finally have a diagnosis and a new treatment to pursue for my symptoms. 

It will take 6 weeks for the Amitriptyline to reach it's fully effective state and I've been taking it for 4 weeks now. During the 3rd week, I started noticing periods of time where I was pain free for the first time since these new pains started. I am still requiring the Lyrica in conjunction with the Amitriptyline presently to treat my pain but this may change over time as the Amitriptyline reaches full efficacy levels in my body and dosage may be adjusted. I haven't been experiencing nausea either. I will see my neurologist in another 4 weeks and any medication changes will then be decided upon as he didn't want to make any changes to my Lyrica or Compazine yet. I haven't had any changes to my appetite, although I'm not bothered by that. 

I look forward to my next neurology appointment to see what medication changes may be decided upon and continuing improvement to my symptoms now that a diagnosis has been reached. 

Wednesday, March 30, 2022

Colon Cancer: A Family Tribute and A Reminder

This March, Colon Cancer Awareness Month, hits harder this year than those previous. Colon cancer runs in both sides of my family and as a person with the hereditary colon cancer syndrome, Familial Adenomatous Polyposis (FAP), I particularly know the importance of colon cancer screening firsthand. 

Due to my FAP, I required my colon to be removed at age 9 as my precancerous polyps were starting to turn cancerous. A fact that was difficult to obtain as my primary care doctor had refused me the necessary referral to be evaluated by a GI specialist - a refusal that could have cost me my life. 

Colon cancer goes beyond me though. FAP runs in my mother's family. She was diagnosed with colon cancer just 3 months after I was born. My grandfather had FAP and had colon cancer as well, he later died from stomach and esophageal cancer caused by FAP. Both of their stories can be read in Touch of Cancer.

Beyond my grandfather, other members in his family likely had FAP including his sister, mother and her two brothers, three cousins, and two nieces. Beyond that, we are unsure who else has since had FAP among their family lines. 

Colon cancer also runs on my father's side of the family. In his family, my grandmother died of colon cancer and two of my aunts have had it - one being my aunt Martha who we recently lost.

My aunt Martha was extremely healthy her entire life until she developed colon cancer - likely about a year or so ago. Good genes and long life run in my dad's side of the family - several family members living into their 100s. My dad is the youngest of 7 siblings - the oldest one is still in good health at age 89.

Martha was 83 and could have likely lived a much longer life if she had completed the recommended colonoscopies to prevent colon cancer. She never went to the doctor as far as I'm aware of since becoming an adult.

She began having symptoms of unexplained weight loss, bloody stools, change in bowel habits, loss of appetite, weakness. We weren't aware of all of these changes - only the weight loss. She wasn't diagnosed with colon cancer until mid-February 2022 when she was basically forced to by my parents after she fainted upon answering her house door. As it was told to me, she figured she had colon cancer just like her mother, but she had been refusing to go to the doctor or hospital out of fear of never returning to her home. Unfortunately, once she finally agreed to be evaluated, she was diagnosed with colon cancer with metastasis to the liver and lungs that was terminal and given 8 weeks to live. 

Sadly, we lost her on March 22, 2022 - 5 weeks after diagnosis. My last visit with her she was barely able to speak and hard to understand, she had difficulty staying awake. We were fortunate to have hospice care available to keep her as comfortable as possible during the last weeks of her life as the pain did become increasingly worse.

Please take heed from the story of my aunt Martha and complete your recommended colonoscopies for prevent colon cancer in yourself. Please go to the doctor regularly and notify them of any changes in your health, any symptoms you experience. Please do your best to not be another colon cancer statistic.

My Tribute to My Aunt Martha

Martha and Me
My aunt Martha was a steadfast, loved, and integral presence in my life. She was one of several family
members who literally helped raise me from the age of 3 months. She spoiled me to no end as a child whether it was ensuring I had plenty of my own clothes to keep at her house, displaying my portrait on her mantle, or unnecessary gifts such as my 3-foot christmas stocking full of items.

She taught me to enjoy a variety of word puzzles, jigsaw puzzles, solitaire, and mahjong.

She supported everyone in her life, she was always in everyone's corner no matter what. She showed her love through gifts and loans to support others in their life goals and interests. She was ever giving and generous to a fault. She constantly put others ahead of herself even if it caused herself harm. She was ever more concerned about others, their feelings, and not wanting to inconvenience others than she ever was about herself.

If she discovered something that you liked, she would surprise you with a gift of that item even if that meant trying to give you her own possession. Even when she was in her last weeks of life, she wanted to read my children's book to show her support.

She was an avid believer in the power of positive thinking. Every time when asked how she was, her favorite response became "I'm phenomenal!" and said with as much enthusiasm as possible.

She was notorious for bad directions and odd quirks. During one trip to Texas, a route she had driven a multitude of times, she suddenly exited somewhere unfamiliar to me. When I asked her where we were going, she responded "I don't know, I just followed the line". She was able to laugh at herself during such instances.

She was my aunt, who I have held dear in my heart since infancy and will forevermore continue to do so.

Thursday, January 27, 2022

Seeking Consults to Obtain a Diagnosis

In the time since my last update in the beginning of November, I continue to have chronic pain since the 2.5 weeks after my 8th surgery to remove my gall bladder and adhesions for the third time. A lot and yet not enough has occurred during this span.

Carafate didn't affect my symptoms. My liver and pancreas enzymes were elevated. My GI started me on Lyrica in December and within a week, I started to notice an improvement to my pain. While I continue to have pain, it is far more tolerable now with the Lyrica. Afterwards, my liver enzymes decreased to the normal range however my pancreas enzyme continued to increase. This triggered a MRCP to be completed which didn't reveal any new findings or issues. With the GI system being cleared, it was recommended to see a neurologist.

This month I saw rheumatology and neurology for consults. Rheumatology completed labs and started me on a trial of Hydrocortisone. While he didn't believe I had any autoimmune diseases, he wanted to try these two things in order to help rule them out as a possibility. He reasoned that while lab work for autoimmune diseases is not as accurate at identifying an autoimmune issue, trying a steroid would further help identify if an issue existed. I agreed to try the Hydrocortisone as I am allergic to Prednisone - experiencing a combination of acidic stool and painful, fragile, rash like skin that creates an awful combination for using the restroom. The Hydrocortisone is more in line with the body's natural cortisol and typically doesn't have side effects. My labs were all normal. I tolerated a low dose of Hydrocortisone without issue although I also didn't notice an improvement to my pain either. Therefore, I was instructed to double my dose. Within a few hours of my first doubled dose, I experienced the same reaction I have to Prednisone and this side effect lasted for over 24 hours before finally resolving for my body to return to its status quo. I didn't try a second dose - doubled or not - after this. With these results, rheumatology released me advising he believes my pain is a nerve and muscle system issue.

Two days later, I was able to have my consult with neurology. He had me complete different physical tests in the office and poked my pain areas with a safety pin to evaluate how pain feels to me in these areas. I'm uncertain what my reactions and performances meant, although he said there were a lot of inconsistencies in my reaction to the safety pin test as the majority of my pain areas felt dull to the pricks. 

While Fibromyalgia was mentioned, it doesn't fit my pain symptoms. Fibromyalgia is explained as having wide spread dull pain. My pain is sharp, stabbing, crushing, and squeezing with very little dull pain. This is even with the Lyrica helping to reduce the severity and duration of pain episodes. My pain migrates around my torso - from my front, sides, and back and typically is not located within the mid range of my abdomen. At times I do have pain in my hips and sometimes even my knees, particularly if my hips are hurting. Fortunately, the mid range abdominal sensations that my insides were hanging outside of my body have ceased and my incisions are no longer feeling strained. I'm uncertain if these changes are due to the Lyrica or simply time. I have also noticed significant improvement to the balance issues I was experiencing following surgery until the end of December. I was randomly nearly falling over when simply standing or sitting still at least once a week, if not more frequently.

The neurologist explained that my pain may be caused by Multiple Sclerosis (MS) and ordered MRIs with and without contrast of my brain and spine to check for plaque on my brain and/or spinal cord caused by MS as well as tumors or other growths that may be caused by Central Nervous System Cancers (CNS) due to my higher risk for CNS cancers from the FAP. He explained, if my pain isn't caused by either of these two conditions, he doesn't know why I'm having nerve pain. I wasn't surprised by the mention of MS as my pain perfectly describes MS Hugs

I also had a follow up with my nephrologist this month who maintains that my pain is caused by severe dehydration and I that I simply need to increase my fluid and potassium intake. While these are not bad changes for me to make, I don't believe these steps will resolve my pain.

I'm continuing to await my MRIs and will have my neurology follow up in mid-February.

I am mentally prepared for the possibility of cancer as I have long anticipated a cancer diagnosis at some point in my life due to the FAP. I am not, however, prepared for a MS diagnosis although I truly anticipate this will be the finding.

I am also resuming counseling as the last year has taken a toll on my mental health.


Monday, November 8, 2021

The Continued Mystery of My Post-Surgical Chronic Pain

chronic pain

I was hoping my health would have improved after experiencing chronic pain complications after returning to work following my 8th surgery; but alas, there has been none. 

Where I've Been Having Chronic Pain since 9/13/21
Not only has my pain continued throughout the majority of my torso, since 9/28/21 my incisions have
started feeling as though they are ripping from the inside out whenever my abdominal muscles are strained or stretched in the least bit. 

I returned to the surgeon on 10/6/21 and he decided to order another CT scan without contrast as my pain hadn't improved. My latest CT scan on 10/14/21 revealed a small hiatal hernia and everything else remained the same. I was distraught upon reading these results. I fully expected to require additional surgery in my lifetime but I didn't expect the possibility of another surgery so soon. I contacted the surgeon's office asking to speak to him about the CT results as I was very upset. He contacted me via phone that afternoon and the information I was provided was even further upsetting to me. I had been crying nearly non-stop after reading my CT results and was actively crying when he called me. The surgeon told me that he believed:

  • My hernia wasn't causing or contributing to my pain even the upper stomach pain
  • My pain isn't new
  • I've had this hernia all along
  • He was releasing me to my GI and PCP as he has nothing to offer me or idea what is causing my pain
I wasn't fully processing the information he stated and only managed to repeat the exact things he said but in a question form. To this, he simply repeated the same information without any elaboration of his conclusions or advice for going forward. Afterwards, I realized that the information he stated didn't make sense. The more I thought about it, the more I became enraged. The next day, I left a voicemail for his office explaining that I was confused by his statements for the following reasons:
  • Upper stomach pain can be a pain symptom of hiatal hernia
  • The pains I've been reporting since 9/13/21 are new, I didn't have them before surgery and the issues I was having prior to surgery, I'm no longer having
  • I have had multiple, repeated testing that includes the ones used to diagnose a hiatal hernia and none of those tests ever showed a hiatal hernia until this one
His Medical Assistant called me back and stated "He told me that none of this changes anything, he has nothing surgically to offer you but if you want to see him in the office to discuss it, you can". 
This further enraged me as I felt my trust in this doctor had been betrayed, my concerns and questions dismissed, and I felt frankly abandoned. I thought he understood my medical complexity and that my body has never followed the medical textbook explanations for anything. I felt he had indicated he would follow through with trying to identify the issues I've been having since surgery and now, he was giving up on me. Furthermore, why should I pay this surgeon a copay to finally get answers to the questions I posed when he should have explained his conclusions when he was on the phone with me the day before especially when I'm going to have to pay a copay to consult with my GI and PCP anyway. I figured, I might as well obtain a second opinion from another surgeon, pay that person my copay, and have all my questions answered in one. And, at this point, with confidence and trust lost in this surgeon, I wouldn't feel able to fully believe anything he says going forward.

I immediately followed up with my PCP, GI, and sought a second opinion from another surgeon.
My PCP advised she didn't believe my hernia was causing my pain due to the large scale of my pain not being consistent with symptoms of hiatal hernias. Instead, she thought my pain may be caused by gassiness from my probiotic or esophageal spasms. She advised to stop my probiotic for 1-2 months to determine if my pain would improve. I had stopped taking my Bentyl after surgery as I no longer have been having the abdominal pain it was controlling but resumed the Bentyl as it may help with esophageal spasms. I have not noticed any improvements to my pain with either of these medication changes thus far.

My GI ordered lab and stool tests as the surgeon hadn't checked my blood tests again after my pain started, only before my pain started. Tests showed that my liver and pancreas enzymes are high, white cell blood count low, and there continues to be blood in my stool and the calprotectin levels measuring inflammation in the GI doubled since 8/3/21 - from 58 to 117. Both of these levels remain in the borderline range, however, 120 is the threshold for elevated. He also ordered an abdominal ultrasound, however, no issues were identified by the ultrasound. He suggested the new pain may be due to adhesions. Although, I don't understand why abdominal adhesions would cause pain everywhere other than the abdomen especially considering I just had adhesions removal and the adhesion pain I had prior to this, has stopped. He started me on Carafate for possible Bile Gastritis and I will see him in the office for a follow up on 12/2/21. I remain in regular contact with him and his office though, so he may order additional tests in the meantime.

My Nephrologist advised she believes my torso pain is caused by dehydration and my high liver enzymes are likely due to my medications. Neither of these suggestions make sense to me and my GI reviewed my medications following my test results for possible contraindications with the liver and found none. 

I also scheduled with another surgeon. I obtained the images of my 3 CT scans from this year for him to review and I brought all my paper medical records I have for him as well. The moment I stepped into his office building, I began to cry and continued to do so until he met with me. This was due to my high level of fear and mistrust in new medical providers due to my medical trauma. I felt confident in him prior to our meeting as his reputation as a surgeon is well known and a friend is his patient for hernia repair as well. He spent an hour reviewing my records and talking with me. While he agreed that I am a complicated medical case he explained to me that:
  • He isn't convinced I even have a hernia. If I do have a hiatal hernia, it is "tiny". 
  • He doesn't believe my possible hiatal hernia is causing me any issues
  • He doesn't recommend surgery at this time as he doesn't believe it would benefit me and would only worsen my health issues
  • He believes I have recovered well from the surgery itself and my incision pain is likely due to adhesions. My abdomen is also not likely to ever feel "normal" due to all the surgeries I've required so the abdomen issues I'm having are likely to be my normal. (Honestly, I figured as much so I wasn't surprised)
  • He doesn't know what is causing my pain and believes my other doctors are "throwing darts" but recommends scopes if gastritis is suspected and to have a Bravo pH test done at the same time to measure my stomach acid 
With my 2nd opinion complete, I feel comfortable in trusting that my possible hernia isn't the issue and I can now relax about the hernia. I don't believe my probiotic or dehydration is the culprit. I don't believe I'm having esophageal spasms and perhaps it is bile gastritis but not convinced there either. Honestly, I'm hoping the Carafate isn't effective as I don't want to take this medicine for the remainder of my life. 

I'm required to take the Carafate 1 hour before meals or 2 hours after meals or I will have an intestinal blockage, which I am already prone to due to adhesions. I typically only eat 1 meal a day in the evening and it is usually only when I'm with Mike for dinner 4-6 times a week. Without him, it's debatable if I will eat anything for the day. When I do eat outside of my daily meal, it is typically a very small snack and often it is late in the day. Therefore, timing when I can safely take the Carafate has been a nightmare. I also am beginning to think the Carafate may be causing me to feel worse. I've noticed I've started feeling feverish (even though I don't have a fever), nauseated, sick to my stomach, symptoms of low blood sugar, and the like sometimes within 30 minutes of taking it. 

I continue to have pain from pressure placed on my abdomen including from clothes or bending. A physical abdominal exam causes severe, post surgery like pain for 1.5-2 days after the exam. I haven't noticed any improvements to my torso pain since it began in mid September, but I do believe I am starting to tolerate it better most days. I suppose that's something. Unfortunately, OTC pain medications are no longer dulling the pain and having my muscles massaged causes intolerable pain. I don't want to start taking prescription strength pain medications for multiple reasons either. At this time, I just hope the pain will improve over time or I will continue to at least improve in my toleration.

Monday, September 27, 2021

The Unexpected After Surgery

surgery

When my CT scan showed gall stones in 2017, I expected I would require surgery to remove my gall bladder at some point. I didn't have a time frame in mind for this so I didn't quite expect it to be required by 2021 but within this time frame my many small gall stones changed into innumerable medium sized gall stones. My GI specialist theorized that my gall bladder was worsening my symptoms of chronic nausea and abdominal pain and it was time for removal. It was after receiving this news that I started to have increased pain, bloating, early fullness, and loss of appetite including difficulty eating solid foods - again contributed to my gall bladder. 

My doctors agreed that it was time to remove my gall bladder and my GI specialist and surgeon urged for sooner rather than later. My main concern was increased diarrhea without a gall bladder as I already have Short Bowel Syndrome and had 20+ stools a day. 

My GI specialist warned me of the risks if I decided to delay removing my gall bladder:

  • Gall stones dislodging and blocking a duct and gall stone attacks which could require emergency surgery
  • Inflammation and infection
  • Gall bladder fusing to the liver which would further complicate surgery
  • Gall bladder cancer
I also discussed bile salt supplements with my GI specialist as I had researched them as a possible treatment to improve digestion and reduce diarrhea after gall bladder removal. My GI specialist advised that I would likely not require bile salt supplements and to revisit this as a possible treatment if needed in the future. He stated that bile salt supplements allow the liver to become "lazy" by doing the liver's job for it of releasing bile salts and that the liver will likely function well on its own without assistance. My body was already functioning as though it didn't have a gall bladder so he, and my other doctors, suspected little changes to my bowel habits with the gall bladder being removed. This would also mean that I wouldn't likely start becoming deficient on Vitamins A, E, and K although my GI specialist approved if I chose to start taking these over the counter vitamins. I am already deficient of Vitamin D and presently prescribed Vitamin D3 by my nephrologist. 

Originally, I thought I would delay this surgery until January 2022 so that I would be able to use my Flexible Spending Account (FSA) for the cost. I had already used all of my FSA funds for the year and would be able to delegate the full amount to be contributed for the 2022 year if I waited. My symptoms continued to become more bothersome though so I thought I would schedule surgery for the end of September. Ultimately, I decided I didn't want to wait if possible and was able to schedule the surgery for two weeks after my surgical consult - August 26. 

Due to my medical PTSD and mistrust of medical providers, I was extremely nervous about electing a surgeon. My GI specialist provided me a list of possible surgeons to choose from. Between my familiarity with a couple of the surgeons due to working in the medical field and researching the possible surgeons, I made my selection and I feel that I made the correct choice. He has been extremely attentive to my concerns and my PTSD. 

My surgeon advised that he would attempt laparoscopic surgery to remove my gall bladder but due to the extent of my adhesions from my previous 7 surgeries, I would likely require an open surgery. He stated while gall bladder surgery is typically an outpatient surgery, he wanted to keep me overnight to monitor me even if he was able to complete the surgery laparoscopically - partly due to my medical complexity but also to monitor my pain control as I advised him that morphine is not an effective pain medication for me. In high school, my post surgical pain was controlled by Demerol, however, this is not a standard pain medication preference by doctors and we were uncertain how I would respond to other pain medications. If the surgery would be open, I would require a 3-5 day admission. 

We planned for an open surgery while hoping for the best outcome of it being laparoscopic. Due to increased Covid19 cases and hospitalizations, I was only allowed one person with me at the hospital so my boyfriend, Mike, went with me.

The surgery went better than expected and my surgeon was able to complete the surgery laparoscopically. He created 5 incisions across my abdomen - 2 on each side of my belly and one along my midline. He removed my gall bladder, a small mass on my liver, and another section of my liver for biopsy due to my liver becoming increasingly enlarged - resulting in 3 biopsies. While he provided me the option to stay over night following surgery, we ultimately decided for me to return home that day.

A few of my gall stones

The pathology results showed that my gall bladder had FAP polyps with dysplasia without malignancy - meaning my gall bladder was precancerous. I knew that FAP polyps could develop anywhere in the GI tract resulting in additional GI cancers outside of the colon but I didn't realize that included the gall bladder. The FAP polyps in my gall bladder hadn't been detected prior to removing the gall bladder so I was fortunate it was removed when it was as gall bladder cancer is difficult to treat. 

The mass on my liver was scarring and my liver biopsies were negative for any other issues. My surgeon recommended yearly imaging to monitor my liver due to the enlargement and scarring - which my GI specialist had already planned for follow up imaging in 6 months.

Following surgery, I suffered from lack of appetite and thirst resulting in dehydration. This further decreased my strength and energy levels and also caused my blood pressure to drop risking falls and fainting. I also experienced, numbness in my face, chest and under my ribs - particularly while using this restroom. This was concerning to my surgeon which prompted an office visit within a week of my surgery rather than two weeks afterwards. He ordered blood work that showed elevated liver enzymes and therefore ordered a CT scan. The CT scan results were unremarkable. He stated my elevated liver enzymes could be caused by surgery and ordered repeat blood work for the week after along with my 2 week post op office visit. I was able to discontinue my pain medication within 3 days post surgery and these symptoms have since subsided. However, I also periodically experienced such an intense heart beat that I could physically see and feel my stomach and chest moving with each pulse. It lasted for at least an hour each episode and it caused me to feel fatigued and the constant jarring is upsetting to my stomach. My doctors haven't been concerned about it and if it were an abdominal aorta aneurysm, it should have been detected on the CT scan. This intensely pulsating heart beat in my abdomen finally stopped occurring about 3 weeks after surgery.

Another concerning symptom following surgery for me has been a change in bowel habits. Prior to surgery, I had 20+ stools a day and while this number hasn't specifically changed post op - I was unable to feel as though I fully voided my intestine when using the restroom for about 3 weeks after surgery. I have also experienced significantly increased gassiness since surgery even with medication such as Gas-X. About half of my restroom trips are due to the gassiness rather than the actual need to use the restroom. My appetite remains suppressed which has allowed me to lose weight that I've been trying to lose for the past few years. I become full rather quickly and I haven't truly felt hungry since surgery. Rather, I eat something because the taste of a certain food will sound appealing not because I'm actually hungry. I have been eating one meal a day typically and on occasion I will have a snack. Surprisingly, I have been able to tolerate every food I've eaten post surgery including greasy foods. Various foods haven't increased my urgency to use the restroom or my abdominal pain. I am no longer having nausea and have been able to discontinue to medications to reduce chronic nausea and abdominal pain when eating. The chronic nausea and increased abdominal pains that I started having in 2015 were thought to be caused by my increased adhesions. However, I am left to wonder if these symptoms were not brought upon by gall stones entirely or at least partially. Additionally, my surgeon was required to remove adhesions in order to remove my gall bladder so the combination of removal of adhesions and gall bladder would have helped to address both of these issues. 

I returned to work 2.5 weeks after surgery as I felt comfortable enough to do so. However, after returning to work I started having new pains. My incisions hurt periodically and I have near constant pain under my ribs, on the sides of my torso, and up my back. The severity of this pain has varied and I've required resting in bed and Tylenol or Ibuprofen to help manage the pain. I've also required taking time off work each week in order to recover so that I may continue working the rest of the week. My surgeon is concerned by these new pains, especially as they have continued at a month after surgery. He and I both believe the new pains are a result of increased activity since returning to work and these pains were likely unavoidable. Since he ordered a CT scan one week after surgery that was unremarkable, he is waiting to repeat the CT scan or order additional testing. If my pain continues to worsen or doesn't improve by my next follow up appointment, he may decide to order more testing. 

I also met with my GI doctor for follow up post surgery and he explained that my liver was shown to return to normal size after my surgery. He further explained that my gall bladder was causing chronic inflammation and likely a chronic low grade infection resulting in my liver becoming enlarged. He agreed to complete a liver ultrasound in a year to continue monitoring my liver due to the scarring found on it during surgery. 

Wednesday, August 4, 2021

When One Thing Becomes Many

medical test questions

I undergo an upper and lower GI scope every two years presently due to my Familial Adenomatous Polyposis. My FAP polyp growth is slow enough at this time to not require more frequent screening. 

I continue to have a carpeted stomach of fundic gland polyps and recurring duodenal FAP polyps - typically just one or two of them. However, this year I asked my GI specialist one medical question in particular for this year's scopes - can he determine what is causing me to have needle like pain in my intestine, near my ostomy reversal connection site. 

My GI specialist was unable to determine any cause for this pain during my lower GI scope and ordered a CT scan for further evaluation. My last CT scan had been in 2017 so he figured another one was due anyway. This CT scan spawned a battery of tests to follow.

My CT Scan this year discovered:

  • My enlarged liver grew another 2 cm
  • My enlarged pancreas returned to normal size
  • My normal sized right ovary doubled in size and now has multiple cysts including one measuring 6.4 cm cyst 
  • I continue to have sub centimeter cysts on both kidneys
  • I now have innumerable gall stones that have also increased in size
These results led to:
  • Surgical consult for removal of gall bladder
  • Recommendation for liver biopsy
  • Pelvic ultrasounds
My GI specialist advised my needle like pain may be due to my adhesions. He referred me to a surgeon to discuss gall bladder removal due to my innumerable gall stones and recommended for me to have a liver biopsy during the surgery. He stated my gall stones may be contributing to my chronic nausea.

My Nephrologist was pleased that my renal cysts remain less than a centimeter and didn't require my annual kidney/bladder ultrasound this year due to having the CT scan. She also was in agreement with my GI specialist recommending gall bladder removal stating that I am essentially living without a gall bladder presently, it's just still in my body. 

My gynecologist ordered pelvic ultrasounds and determined she wasn't overly concerned about my ovarian cysts and recommended pelvic ultrasounds to be performed in another year to monitor the larger cyst. My ovarian cysts were classified as simple cysts which are common for women to develop during the menstrual cycle and are often symptomless. Ovarian cysts often cause the ovary to become enlarged and ovary size also changes throughout the month during the menstrual cycle. It is common for ovarian cysts to develop and go away on their own. She did not think the enlarged ovary was contributing to my GI symptoms.

My surgical consult is scheduled for the middle of this month and I have also requested another appointment with my GI specialist to further discuss my concerns and questions about having my gall bladder removed. I have accepted that my gall bladder will require removal at some point, however, I still have questions and concerns I want to discuss. I've also decided that whenever I do decide to have my gall bladder removed, I am going to have at least a week of celebrating greasy foods before the surgery.



Tuesday, March 16, 2021

Vertigo and Physical Therapy

I started having chronic nausea in 2015 after my first hospitalization since 2007. My chronic nausea has persisted in spite of a mix of medications and Peppermint Oil. These treatments are helpful in managing my nausea but they do not cure it. A couple years ago, I started noticing visual triggers to my nausea and over time the number of visual triggers began to expand. Strobe lights and the movements of others or objects easily trigger my nausea. It was then that I was diagnosed with Vertigo that was worsening my nausea. I rarely felt dizzy but at times the room would spin and I felt unsafe to drive until the dizziness dissipated. A friend recommended physical therapy to me in an effort to help reduce the Vertigo and so my GI specialist sent me to a local physical therapy center.

Although the Vertigo was the primary focus of my physical therapy, my therapist also wanted to include core strength and range of motion for my neck as additional goals. My core remains weak after 7 abdominal surgeries and I have chronic neck pain with limited range of motion due to degeneration in my neck. My therapist explained that my limited movement had not only contributed to the development of Vertigo but was also worsening my symptoms.

A common cause of Vertigo is Benign Paroxysmal Positional Vertigo (BPPV) that occurs when tiny calcium particles become dislodged and enter the inner ear. My therapist explained that my limited head and neck movements were creating these particles and caused them to wrongfully enter my inner ear resulting in my dizziness and nausea. 

Not only does Vertigo cause dizziness and nausea but other symptoms may include balance issues, abnormal or jerking eye movements, headache, sweating, ringing of the ears or hearing loss.

The physical therapist completed an evaluation of my Vertigo symptoms and found that I also presented with the abnormal, jerking eye movements. The evaluation included a dizziness questionnaire and movements of my head to try to invoke nausea or dizziness. She would later use the technique to determine the presence of jerky eye movements to help determine the effectiveness of physical therapy on my Vertigo. My physical therapist also performed whole body movements on myself to help move the calcium particles in my inner ear into the correct locations. 

VOR Exercise
I completed 8 sessions of physical therapy before being released. I completed several different exercises to improve my balance which would also help reduce my Vertigo. I started with single leg stances on each leg. First, these were completed with my eyes open and then as I progressed it was changed to eyes open, moving my head in all four directions, and finally using a bosu ball. In addition to completing single leg stances on the bosu ball, I also had to turn the bosu ball upside down and complete squats on it. This was like doing squats on a see-saw. I also did an exercise called Vestibular Ocular Reflex (VOR) that is completed by keeping my eyes on a fixed object in front of my face and moving my head from left to right while maintaining my focus on the object. This exercise helps to recalibrate the eye, inner ear, and brain. The remainder of my exercises focused on core strengthening and on stretching my neck to improve my range of motion thereby reducing the development of these calcium particles and their risk of entering my inner ear.

After a month of physical therapy, my therapist felt as though I had reached the maximum level of benefit physical therapy could provide me and I should continue my exercises on my own at home indefinitely. I'm hesitant to say that my Vertigo is cured. However, I have noticed less use of my Vertigo medication and increased ability to tolerate visual triggers for longer periods after the completion of physical therapy. 

If you suffer from Vertigo, I would highly recommend requesting physical therapy as part of your treatment plan for the Vertigo. 


Wednesday, February 17, 2021

Understanding Dehydration

Dehydration occurs when more water is lost from the body than the amount of water that is taken in.

Dehydration is a common struggle for those of us who have required colon removal. Without the colon, water is not absorbed properly and typically results in liquid stools. Many of us without a colon are also diagnosed with Short Bowel Syndrome. SBS further worsens the absorption of nutrition and water due to damage to or significant removal of the small intestine resulting in frequent diarrhea. Some individuals with SBS require lifelong TPN in order to meet their nutrition needs.

I was diagnosed with Short Bowel Syndrome as a child after part of my small intestine died from surgical complications of my colon removal. My SBS causes me to have a minimum of 20 stools in a 24 hour period - more if I am having a flare up. During a SBS flare, it is common for me to use the restroom as frequently as every 2-5 minutes for several hours at a time.

It is common for those with an ileostomy or Short Bowel Syndrome to experience stools soon after ingesting liquid further complicating our ability to take in adequate amounts of water.

Later, when I was in high school, it was discovered that I had a hole in my small intestine. As a result, I was placed on an NPO diet and started on TPN for my nutritional/hydration needs. I became accustomed to not drinking fluids due to the NPO diet while my intestine's hole was healing. I began to only drink fluid when I felt thirsty, which wasn't often. As an adult, I started being followed by a nephrologist a few years ago due to the discovery of cysts on my kidneys. While this could mean that I have Polycystic Kidney Disease, my nephrologist thinks it may just be due to years of dehydration. This has prompted me to truly make an effort at achieving and maintaining a state of hydration. In spite of my efforts of at times drinking 100+ ounces of water a day, my nephrologist states I remain in a dehydrated state.

For those with colon cancer causing conditions such as Familial Adenomatous Polyposis or Lynch Syndrome may also experience dehydration worsened by cancer treatments. Chemotherapy and radiation treatments may cause side effects including diarrhea, vomiting, and excessive urination that may result in dehydration. 

My Nephrologist advised me that becoming hydrated requires several days - nearly a week - of continuous increased fluid intake for the body to fully become hydrated. One or two days of drinking well isn't going to be enough.


What are the signs of dehydration?

Common signs of dehydration include:

  • Headache
  • Dizziness or lightheadedness
  • Fatigue
  • Decreased urination
  • Dark yellow/amber colored urine
  • Decreased skin elasticity 
  • Dry mouth and mucous membranes (such as lips, gums, nostrils)
  • Muscle weakness
Severe signs of dehydration include:
  • Low blood pressure
  • Lack of perspiration
  • Sunken eyes
  • Increased heart rate
  • Fever
  • Delirium
  • Unconsciousness

Risks of Dehydration

If dehydration is severe and not rectified, an individual may experience:
  • Hypovolemic Shock - a reduction in blood volume that drops the blood pressure and amount of oxygen in the body. 
  • Increased risk to heart and cardiovascular system - blood volume decreases cause the heart to work harder and faster which increases blood pressure and heart rate. Sodium is also increased in the blood from dehydration resulting in blood thickening that over works the heart. 
  • Seizures due to electrolyte imbalance
  • Kidney issues such as kidney stones, UTIs, or even kidney failure. Water helps to remove toxins in the blood via urination. Dehydration can result in the build up of toxins and acids in the body.
  • Heat injury - ranging from mild cramps, heat exhaustion, heat stroke
  • Coma, Organ failure, and death may result from untreated dehydration

Diagnosing Dehydration

Several physical factors may be examined in addition to laboratory tests to identify common electrolyte changes associated with dehydration may be utilized for diagnosis. This may include:
  • Mental status exam
  • Vital signs
  • Temperature
  • Skin and mouth examination
  • Blood tests and urinalysis
  • Infants may also be examined for a sunken, soft spot on the skull, sucking mechanism, and loss of sweat and muscle tone

Treating and Preventing Dehydration

The U.S. National Academies of Science, Engineering and Medicine recommend men to drink 15.5 cups and women to drink 11.5 cups of water a day. It's recommended to limit or avoid caffeinated drinks.

An individual may need to adjust their daily water intake due to exercising, environment, overall health, and if they are pregnant or breastfeeding. 

IV fluids may be required for severe or recurring dehydration. This is common for those with malabsorption issues. 

There are several hydration products available to help prevent dehydration. Simply search for hydration drinks. Compare the amount of electrolytes and sugar in a drink when shopping. Some hydration products include:


Sunday, July 19, 2020

Sensory Deprivation Tanks



I've wanted to try out a sensory deprivation tank for years now and this year, for my birthday, I finally went to one.

Sensory Deprivation is also known as Restricted Environmental Stimulation Therapy. A sensory deprivation tank is a float tank that contains Epsom salt (800 pounds or more) in a small amount of water to allow an individual to effortlessly float. Floating in salt concentrated water allows pressure to be removed from joints, muscles, and tendons. The tank is closed to eliminate all sensory tasks including light and sound thereby allowing the entire body to enter a deep level of relaxation and process information and thoughts in a new way without distraction or strain. The water and air are heated to skin temperature to reduce the sensation of water on the skin. Benefits can include reduced joint, muscle, and nerve pain, improved sleep, energy, creativity and mood with a reduction to depression and anxiety. Soaking in Epsom salts helps soothe sore muscles and irritated skin and reduce swelling thereby helping with minor aches and pains.

My boyfriend and I went to a local float spa. Each suite had it's own sensory deprivation tank and
private shower. We were instructed to shower, using their provided products, before and after entering the float tank. The reason to shower before is to remove any oils or body products that would enter the tank water and with hundreds of pounds of Epsom salts, one would want to wash again afterwards to remove the salt water. The tanks could be left open or be closed and offered a blue light that could be turned on or off as well as sounds. We both decided we wanted the full experience and so we turned off the light and any sounds and kept the tank closed. We were offered ear plugs to further reduce sound and help prevent water from entering our ears. The suite and tank weren't completely sound proof but the float spa was kept quiet and soothing music was quietly played in varying areas of the spa. A head flotation device and spray bottle to rinse your eyes of salt water were also available.

We laid with our heads at the end with the blue light and quickly discovered just how buoyant we were in the saturated salt water. We both kept floating around the tank until the water settled from our entering the tank and disturbing the water. Any movement inside the tank would disturb the water resulting in floating around the tank once again. The water felt silky when touching my skin due to the high level of salt. The salt water could cause slight burning to any open skin that was cut or irritated. Protective ointment was offered to help reduce any stinging from the salt water. We started floating with our arms down by our sides, however, we both felt tension in our shoulders and neck in this position. I found stretching my arms above me to be comfortable and my boyfriend remained with his arms down by his sides and stated that eventually his shoulders and neck relaxed after a period of time. We both have neck problems so I'm not sure if the shoulder and neck tension we both experienced was related to our neck conditions or if others would have the same experience. My boyfriend also has chronic nerve pain in his back and lately his knee has been bothersome as well (we've since learned he had a meniscus tear so no wonder his knee was hurting). I noticed completing a full body stretch in the tank was very pleasurable and felt better than typical stretching outside of the tank. My boyfriend reported reduction in pain after the float but was experiencing pain again by the evening time.

I had a difficult time shutting my mind off in the beginning of the float by towards the middle of my float time I was able to experience a meditative state. My boyfriend became so relaxed he almost fell asleep during his float. There are many benefits to meditation and a sensory deprivation float helps to reach a deep meditative state by relieving the body of sensations. Some of the benefits of meditation include to reduce stress, anxiety, pain, and improve sleep. Meditation becomes easier and more effective with practice. I would conclude that this would be the same for sensory deprivation floats as well. Visit here for a list of relaxation techniques you can complete at home.

Overall, we both enjoyed our float experience and would recommend it to others.

Tuesday, April 14, 2020

Managing Diarrhea Through Diet




Diarrhea is a common complaint of those with GI issues and diet can play a role in worsening or lessening this symptom. Registered Dietitians (RD) offer a valuable service to anyone wanting to improve their health or manage a disease through diet. I've worked with several RDs during the course of my career in the medical field and also privately sought weekly appointments with a RD to teach me and my now ex-husband about the diabetic diet to help my husband at the time manage his Diabetes appropriately.


I visited with one of the RDs I work with about tips to help lessen diarrhea and upset stomach for those with GI issues. She advised the following:
  • Avoid or Limit: Fatty, Fried, and Spicy Foods
    • High fat foods slow stomach emptying and cause the digestive system to work overtime which can cause nausea, bloating and stomach pain and harm healthy gut bacteria and increase unhealthy gut bacteria. Fatty foods are broken down to fatty acids causing the intestine to release fluid, resulting in diarrhea. 
    •  Greasy foods are high in fat and not healthy fats that are found in foods such as avocados, fish, extra virgin olive oil and butter
    • If you're eating a lot of protein, switch to lean meat choices rather than those with higher fat content and cook your meat by baking, broiling, or steaming rather than higher-fat methods such as frying
    • Spicy foods contain capsaicin, an irritant to the body, which irritates the lining of the stomach and intestines thereby creating a laxative effect in order to quickly remove the capsaicin irritant
      • Eating spicy food with some dairy can help reduce or neutralize the effect of capsaicin on the digestive system
  • Be mindful of your fiber intake and sources:
    • Soluble Fiber helps to bulk the stool by absorbing water and slow digestion
      • Soluble fiber sources include white breads, rice, potatoes, dried beans, oats, oat bran, barley, citrus fruits, apples, strawberries and peas
    • Insoluble Fiber adds bulk to the stool and helps food pass through more quickly through the GI tract
      • Insoluble fiber sources include wheat bran, whole grains, cereals, seeds, and the skins of many fruits and vegetables
  • Small frequent meals throughout the day are easier to digest than 2-3 large meals
  • Limit sugar intake, especially artificial sweeteners
    • Sugar stimulates the release of water and electrolytes in the gut resulting in diarrhea
    • FODMAPs include fructose, artificial sweeteners, and lactose that are a poorly digested sugars
  • Limit caffeine as it stimulates the intestines resulting in increased bowel movements or diarrhea
    • Caffeine is found in coffee, tea, chocolate, most sodas as well as coffee and chocolate flavorings
Gluten can cause diarrhea, and other bothersome symptoms, for someone who is gluten-sensitive as gluten causes inflammation in the small intestine for these individuals.


 Additional diet information regarding managing diarrhea may be found at International Foundation for Gastrointestinal Disorders.


I heard through Familial Adenomatous Polyposis groups several individuals reporting improved GI symptoms by following the Anti-Inflammatory Diet as well. The idea is to avoid foods that may trigger or worsen inflammation in the body as some foods or ingredients have this effect on the body. In 2014, I participated in a health study and followed this diet with noticeable improvement to my GI symptoms. You can read about my experience with the diet here.


Every person is different and while some foods may be more upsetting than others to one person versus another, these are some general recommendations that may be helpful. Always consult your physician and consider enlisting the help of a Registered Dietitian in your area for personalized care and recommendations.

Tuesday, February 18, 2020

Recovery, Not Rest


I came across an article about how resilience is not about pushing through or just taking a break to rest but rather about recovery. Since then, this difference between recovery and rest has been on my mind as I try to engage in recovery for myself rather than just resting. But what is the difference and why is it important?

I discovered for myself how recovery plays a vital role in our well-being this weekend. I already knew that I require a lot of sleep and when my sleep is limited, I am at greater risk of a Short Bowel Syndrome flare. These flares can last anywhere from half a day to couple of days and medicine such as Lomotil to slow the bowel isn't really all that effective during a flare. In fact, nothing but time seems to help me when I'm having a flare. Sure, sitting up instead of lying down makes a difference but food, drink, and medicine don't play a positive role but rather can make the symptoms worse.

This weekend I spent both evenings awake and active until about 2-3 am. I slept in the best that I could the following day but most days I'm not able to sleep in later than 9 am at the latest. And if I take a nap during the day then I run the risk of not sleeping well that night. And so I overdid it both days and I felt it by Sunday afternoon. My body started to revolt. I wasn't flaring at this point but I was exhausted and in general just felt under the weather. I didn't do anything Sunday but my body paid no heed to my inactivity. The damage had been done and I needed a recovery period. I took a nap in the afternoon and felt some better by the evening. I fell asleep at a decent time that night and slept well throughout the night. However, it still wasn't enough. I awoke to feeling crummy and I felt so horrible I ended up only working half a day. I made it home and crashed until the late afternoon. This time when I awoke, I felt more like myself. I took a Lomotil and was able to enjoy an evening with my mother attending an art performance. This however, meant that I would have a bit of a later night than usual for a work night and I felt it the next day. Whenever I take Lomotil and it's effective, the next day is a bit of a swing day in the effects. Meaning that Lomotil may slow my bowel that day but the next day my intestine is trying to return to its daily normal and so will worsen my Short Bowel Syndrome as it's re-establishing itself. Between increased restroom needs, fatigue, and an overall crummy feeling I was struggling a bit for my usual normal. I was closer to normal than I was the day before but I could tell I still wasn't 100% myself. If I took another Lomotil to help my symptoms then I would just prolong the swing effect another day so I didn't want to take anymore medicine.

So how could I have helped myself besides the obvious of not staying up late, especially two nights in a row? I needed to not only catch up on my sleep but also to allow my brain a break from thinking and stressing. I should have put my phone down, ignored social media and focused on relaxing myself. As it explained in the resilience article, we may think we are recovering when we take a moment to rest but our brain is often remaining active with stressful or agitating thoughts. This activity isn't allowing a recovery period as we spend more energy wrestling with distressing moments.

So next time we are needing to recharge, let us remember to allow for recovery not just rest. Let's put down our technology, focus on our breathing and clear our thoughts. Engage in a light hearted moment with friends, journal, listen to our favorite music or podcasts, take a moment to enjoy nature, meditate or sleep. We all deserve a break from the mental and physical exhaustion of life and particularly that of chronic illness.