Showing posts with label Medication. Show all posts
Showing posts with label Medication. Show all posts

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.

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.


Tuesday, January 7, 2020

Vitamin D Deficiency

life's a polyp

I remember in high school my doctor told me I was low on Vitamin D and to try to go out in the sunlight more. It wasn't suggested that I start taking a Vitamin D supplement until about a year ago when I complained of my struggle with my chronic fatigue to my adult GI doctor. He decided to draw lab testing various elements other than just my Iron and B12. This time he checked my Folate, Vitamins K and D to be on the safe side. Following the results, I was directed to start taking Folate and Vitamin D to bring them back into range and help combat my chronic fatigue. I was started on a high dose of 50,000 IU a week of Vitamin D for a couple of months with my level to be rechecked. With improvement to my Vitamin D level, I was able to change to 1,000 IU daily to maintain my level improvement and I was able to find this amount over the counter at a local grocery store in the pharmacy section.


It seems as though it is a lot easier to be deficient on Vitamin D than one may realize. We process Vitamin D through sunlight, diet, and supplements but we often are not in the sun enough to maintain adequate Vitamin D due to a variety of reasons such as season, cloud cover, air pollution, skin color, and location to equator and there are a limited number of foods with Vitamin D. There is also the risk of skin cancer with prolonged sun exposure to consider. So it may be likely that a supplement needs to be added to one's daily regiment in order to maintain an appropriate Vitamin D level.


Vitamin D acts as a hormone that functions in the intestine, kidneys, and bone to help stimulate transport of calcium and phosphorus to reduce the release of the parathyroid hormone that reabsorbs bone tissue. Both functions help us to build and maintain strong and healthy bones. Calcium and Phosphorus are both minerals that serve important functions and can be dangerous at too high or too low of levels. Calcium also needs Vitamin D for proper absorption. Vitamin D also helps maintain our muscle function and immune system to fight off illness and infection. Some studies suggest Vitamin D may also help to prevent cancer as well as other diseases such as diabetes, heart disease, high blood pressure, dementia, and multiple sclerosis. Vitamin D is essential to help protect bones from becoming too thin, brittle, or misshapen as children are at risk of rickets and adults are at risk of osteomalacia and adequate Vitamin D can help prevent osteoporosis in adults as well.


Infants who are only breastfed are at risk of Vitamin D deficiency as breast milk contains a small amount of Vitamin D. Therefore, the American Academy of Pediatrics recommends breastfed infants be given a liquid multivitamin or 200 IU daily for their first two months of life and 400 IU afterwards until they are drinking formula or milk that are fortified.


The highest diet source for Vitamin D is cod liver oil followed by sources such as Swordfish, Salmon, Tuna, Fortified Orange Juice and Milk. Other sources at smaller amounts include Fortified Yogurt and Margarine, Sardines, Beef Liver, Egg Yolk, Fortified Cereals, and Swiss Cheese. Vitamin D is fat soluble therefore opting for fat free or low fat with Vitamin D options will result in poor absorption.


Your doctor can easily check your Vitamin D level with a simple blood test and recommend if you need higher or lower amounts of Vitamin D. The Institute of Medicine recommends for the average adult under the age of 70 to intake 600 IU a day and 800 IU a day if over 70. Some professionals suggest these recommendations remain too low for what is actually needed.


The body may have difficulty absorbing or processing Vitamin D due to issues such as:
  • Kidney or Liver Diseases
  • Cystic Fibrosis
  • GI diseases/conditions
  • Gastric Bypass Surgery
  • Obesity
There are medications that may also lower Vitamin D level such as:
  • Laxatives
  • Steroids
  • Cholesterol Lowing Drugs
  • Seizure Control Drugs
  • Rifampin
  • Orlistat
Signs of low Vitamin D include:
  • Frequent illness or infections due to lowered immunity, particularly respiratory tract infections
  • Fatigue
  • Bone and Back Pain
  • Depression
  • Impaired Wound Healing
  • Bone Loss
  • Hair Loss
  • Muscle Pain
It's important to have your doctor monitor your Vitamin D level not only to ensure that you're obtaining enough Vitamin D but also to prevent too high of a Vitamin D level.
High Vitamin D can cause:
  • Nausea, Vomiting, Constipation, Poor Appetite
  • Itching
  • Increased Thirst and Urination
  • Weakness
  • Weight Loss
  • Confusion
  • Heart Rhythm Problems
  • Kidney Damage
  • Pancreatic Cancer
  • Ataxia - a condition that can cause word slurring, stumbling
Vitamin D supplements come in two forms - D2 and D3. D2 comes from plants and requires a prescription whereas D3 is the form that is made by the body when the skin is in contact with the sun and is found in animal sources. D3 is available over the counter and is more easily absorbed and lasts longer in the body from dose to dose.


Even if you are not exhibiting signs of Vitamin D deficiency it can be helpful to request a Vitamin D level check just to be on the safe side.

Sunday, August 26, 2018

A Love Hate Relationship with Medicine


walking on a train track

I have a very tumultuous relationship with the medication Lomotil, generic is Lonox. This relationship changes periodically throughout the years. I take Lomotil to slow my bowel movements due to my Short Bowel Syndrome. The amount of Lomotil I require has also changed throughout the years in relation to how my body is affected by the medication.

During the 6 years that I had an ileostomy, I never took Lomotil. However, when I was able to have my ostomy reversed in high school, I required Lomotil to slow my bowels and help with my control. I started off requiring 4 pills a day and I would take these all at once in the morning and they would last throughout the day. I don't remember noticing any negative side effects such as increased pain or cramping. As that first year progressed so did my adhesions causing a stricture. I endured daily vomiting and excessive diarrhea that required surgery to remove the adhesions causing the stricture. For a period, I not only required Lomotil at maximum dose but also Sandostatin shots. But none of it worked to slow my bowels. I had a negative side effect to the Sandostatin after a while - it caused my elbow to lock. And I was forced to rely on the Lomotil by itself. Gradually throughout a year as I prepared for starting college, my body adapted once again and the Lomotil became sufficient in its job. Due to manufacturing changes, I had to change from the generic form to the brand name for continued efficiency. I managed throughout college taking the maximum dosage and remaining active, completing all the activities I wanted with minimal difficulty.

With my first full time job came new insurance that didn't cover the brand name and I was forced to change to the generic form of Lomotil. Manufacturing must have changed or my body changed once again as the generic form was now sufficient. And then I was suddenly able to decrease the amount I took until I was able to stop it all together for the most part. When I was having a particularly busy day I would take some, varying on the amount based on my activity for the day. As the year progressed with this job so did my stress level. The intense stress of my job wreaked havoc on my body and Lomotil was no longer sufficient even at maximum dosing - my Short Bowel Syndrome was out of control and I had to quit my job. I took time to heal and lessons from this job experience to better cope with future job stress without the bodily toll. Over time, I was able to stop the Lomotil once again and only take it as needed for particularly busy days.

Now, almost 10 years later and I have new problems - increased adhesions. My adhesions cause chronic pain and nausea and I hate taking Lomotil as it increases my pain while slowing my bowels. And if I take too much Lomotil for too long of a period, I risk intestinal blockage. So now I only take Lomotil when I'm having a Short Bowel flare or when I'm going to be particularly busy, such as for an outing or on vacation. I judge the day's activities and bathroom access for determining my dosage for the day. When I'm on vacation, such as on a cruise, I will take maximum dosage as I am very busy during these vacation. If I'm going on an outing, I may just take one or two pills.

The side effects of my Lomotil with my adhesions often causes me to dread outings and activity although I enjoy the activity itself. It's a hard balance to obtain between the bloating and pain that's increased by taking Lomotil with making sure to find a bathroom with any activity. My body seems to undergo periodic changes and so I await to see how it will fare over the next few years and what changes are on the horizon.

Saturday, July 28, 2018

Protecting the Heart Against Anemia

red blood cells

I've struggled with iron deficiency anemia since I had my colon removed in June of 1995. I was soon started on iron tablets, one with every meal. This managed my iron with a low normal hemoglobin for years but I was never able to reach the desired 14-15 hemoglobin my pediatrician so desired for me. Two decades later when I unexpectedly hospitalized in May of 2015, I left the hospital with increased chronic pain and nausea. My new doctor directed me to stop my iron tablets, stating they were contributing to my pain and I didn't need them anyway. Well, I did need them and I was referred to a hematologist for iron infusion therapy. My hematologist also advised me to switch from iron ferrous to iron gluconate, as the gluconate is easier on the stomach. Although I still have chronic stomach pain, it is reduced with the iron tablet switch. Why would I take iron tablets still if I'm getting iron infusion therapy? Why to prolong the time in between iron infusion treatments. It has helped, I required iron infusions every 3-4 months.

So why do we need to worry so much about iron? Not only does it have bothersome short term symptoms but there are also long term dangers if left untreated. Long term effects I didn't even know about until I started researching.

When we're anemic, our bodies are unable to produce the required amount of red blood cells we need to carry oxygen throughout our bodies to all our organs and body parts. These red blood cells also carry carbon dioxide out of your body to be exhaled. To create red blood cells, the body requires nutrients such as Folate and B-12. So it's important to have these levels checked as well.

Iron deficiency anemia is common for those missing the colon and/or part of the small intestine. Symptoms include:
  • Fatigue
  • Weakness
  • Pale skin
  • Irregular heartbeats
  • Shortness of breath
  • Dizziness or lightheadedness
  • Chest pain
  • Cold extremities
  • Headache
As you can tell, anemia is not a picnic. When my iron levels are low, I experience extreme tiredness starting as early as 10 am after a full night's rest. I will have a generalized discomfort to my body, an achiness and restlessness. It's difficult for me to keep my eyes open and I become short of breath easily, I will feel my heart beating inside my chest. I am always cold so I don't notice a difference there. And I'm told that I'm more pale than usual.

What I didn't realize though about prolonged anemia, is that it can cause heart problems. Remember, that short term effect of an irregular heartbeat? Prolonged it can cause arrhythmia (rapid, irregular heartbeat) which can lead to an enlarged heart or heart failure as the heart is weakened by overworking to pump more blood than normal to compensate for a lack of oxygen in the blood. This can lead to other bothersome symptoms, additional serious medical conditions, and death.

Signs and symptoms of heart failure include
  • Shortness of breath
  • Fatigue
  • Weakness
  • Swelling
  • Arrhythmia
  • Persistent cough or wheezing with white or pink blood phlegm or mucus
  • Increased urination
  • Ascites
  • Rapid weight gain from fluid retention
  • Lack of appetite and nausea
  • Difficulty concentrating
Additional serious medical conditions include:
  • Kidney damage or failure
  • Heart valve problems
  • Liver damage
To help maintain proper iron levels, talk to your doctor about
  • Diet changes for foods rich in Iron, Folate, Vitamins B-12 and C
  • Supplements for Iron, Folate, Vitamins B-12 and C
  • Iron Infusion Therapies
  • Any other recommendations

If you have iron deficiency anemia, I promise getting treatment to properly manage your iron levels will make you feel tremendously better. As much as I hate needles, I love my iron infusions.

Thursday, December 28, 2017

Grasping at Straws with New Medicine

life's a polyp

I feel as though my health has started upon a roller coaster gradually building over the last two years to now. I've been on a search for managing worsened chronic abdominal pain and the addition of chronic nausea since 2015 after an unexpected hospitalization. Since then, my health has increasingly worsened this year through intestinal blockages and culminating in a C-Diff infection.

Based on my symptoms worsening to include extreme early fullness after my latest intestinal blockage in August of this year, I'm led to believe that I must have developed a C-Diff infection around the same time. Upon completing a round of antibiotics, my early fullness ceased. I continue to have chronic abdominal pain, severe bloating, and chronic nausea however.

With the urging of others amongst the chronic illness/bowel health groups, I spoke to my doctor about trying Creon. Creon is a medication that helps with digestion by replacing pancreatic enzymes to break down food. It is be taken with every meal or snack and varies in dosages available. My doctor agreed to let me try Creon with a dosage of 24,000 USP capsule to be taken one capsule three times a day. This dose contains 24,000 USP units of lipase, 76,000 USP units of protease, and 120,000 USP units of amylase. It is a delayed release capsule and it isn't absorbed in the GI tract but rather is excreted through stool. It is not to be crushed or chewed and online forums advised not to keep it in your mouth for long as it will burn your mouth. Due to my commercial prescription insurance, I was able to download a savings card and obtain the medication for $5 for a 30 day supply at my local retail pharmacy. Without this savings card, it would have cost me $50 for a 30 day supply.



Creon capsules
I took my first dose prior to eating my first bite of my evening meal. My usual abdominal pain and bloating occurred as it has been regularly occurring. I did start to feel better with reduced bloating and pain approximately three hours later. This would become the norm I discovered - Creon didn't ease my symptoms with the meal that it was taken with but rather hours later and into the next day. Although I'm not certain, I believe if I were to take this as prescribed three times a day, it would remain in my system and have a proactive effect for next meal.


I went to bed feeling hopeful about this new medication. I woke up about 1:30 am to use the restroom, as is normal for me. However, I experienced severe burning when I went to the restroom. Butt burn is common for those with ileostomy reversals as we tend to have frequent loose stools that are acidic. I have Short Bowel Syndrome (SBS) so I am accustomed to have 15+ bowel movements a day of typically watery stool. I use Calmoseptine ointment after every restroom use to combat the butt burn and for the most part, my skin isn't painful although it is highly sensitive. The butt burn I woke up to though was different from the run of the mill, occasional butt burn I get from a flare of my SBS. This was a butt burn so sudden and severe that I was reminded of the same type of sudden, severe butt burn that I experienced from prednisone when I was in high school. With each dose of prednisone taken, the butt burn worsened in timing and severity. The butt burn this night would last for several hours with unceasing pain that made it difficult to sleep and was severe no matter what I did - ointments and changing positions in bed were of no help. I was almost in tears the pain was so intense.

I decided to let my backside heal from this painful night before trying another dose of Creon. I realized I needed to at least try Creon a second time to see if the pain was reoccurring as my skin is sensitive and I do experience butt burn periodically due to the Short Bowel. My stomach though did feel incredibly better the next day after a dose of Creon the night before. I was able to eat lunch the next day with very minimal bloating or pain. My hope was strengthening that Creon was the answer but only if the butt burn wasn't a side effect. I waited a couple more days before trying Creon again prior to eating an evening meal. That night I did have mild butt burn but nothing like that first night. This was a tolerable pain that didn't interfere with my activity or sleep.

With this improvement, I started taking the Creon once per day in the evenings as I was leery of taking it at work in fear that the intense butt burn would return. I finally braved it and took one capsule at lunch and a second at evening and managed well with minimal pain for a couple of days. I had the intention to add the third capsule with something small to eat at breakfast time but never made it this far. The pain would start to increase as one day I took a capsule mid morning and a second at lunch time. I believe the capsules were taken too close together resulting in pain and so I skipped the evening dose. The following day I again took a capsule at lunch with the intention of taking a second at evening, however, the pain was too bothersome to follow through with a second dose that day. And so I decided to give my bum the weekend off from the Creon.

Around this time, I noticed that I seemed to be having more bloody stools. Again, this is not uncommon for me as I have intestinal ulcers that won't completely heal even with medication. The ulcers are unable to fully heal on account of my Short Bowel and are worsened if I become constipated as the stool has more time allowed to irritate the ulcers. Since the Creon is not absorbed in the GI tract and excreted through stool, it would make sense that it would also irritate my intestinal ulcers.

I decided to take a break from the Creon as I have come to the conclusion that Creon, although helpful, is not the right medication for me due to the increased frequency of bloody stools and butt burn. I might finish my prescription over a period of time, however it would not be as prescribed as my body is unable to tolerate three Creon capsules a day and at times not even one.

I searched online for remedies to help reduce the bloating as I believe my abdominal pain would be much more tolerable if the bloating was resolved. I already take Simethicone and Bentyl with every meal to reduce gas and intestinal spasms to reduce bloating and pain. Prior to the last intestinal blockage, these medications worked well to manage my pain. Now I've added Beano, Mylanta, and Essential Oils to my regiment as a new experiment to address the bloating.

Beano is an enzyme to help digest grains, vegetables, and legumes. Beano also produces another product Beano + Dairy Defense for those requiring enzymes to break down dairy as well as grains, vegetables, and legumes. I take two tablets prior to eating. When I'm home, if I feel like I need a bit more help I take a gulp of Mylanta before or after eating. When my stomach remains bothersome, I topically apply a few drops of Essential Oils. This combination in addition to my prescription medications seems to be managing my discomfort and symptoms well now thus far.

To further experiment and in an attempt to reduce financial burden, I decided to try replacing Beano with a food enzyme mixture called Digestabs by Puritan Pride. The cost difference is incredible. I was able to purchase 3 bottles of Digestabs with 60 tablets per bottle for $10. It follows the same rules as Beano - take two tablets prior to meals. Within an hour of taking my first dose of Digestabs, I started having butt burn even without using the restroom. I decided to further research Digestabs and found that these tablets include amylase and pancreatin. Pancreatin is composed of amylase, lipase, and protease - the three enzymes within Creon although at much smaller dosages. My body doesn't react well to one or a combination of these three enzymes. I discovered that Beano is composed of the enzyme alpha-galactosidase (a-GAL). I'm not sure the difference between these enzymes but my body definitely reacts differently to them.



I decided for my well-being I need to stick to Beano even if it does cost more.
Read next my review of the Essential Oils I've been using for further information and results.

Wednesday, April 6, 2016

Iron Infusion

iron infusion life's a polyp

I was directed to a door to the treatment area. I quickly surveyed the large room as I slowly, nervously walked to the nurse's station to check in. I was by myself this time. I was determined to chip away at my PTSD. I must have picked a good time, there was hardly anyone there. Large recliners lined the walls, framing the room with sectioning lines created by more recliners. Each recliner had its own IV pole. "This your first time here?" a burly man asked. "Yes" I sheepishly answered. I was directed to sit anywhere of my choosing. Surveying the room again, I picked the recliner tucked away in the corner. I'll feel safer there, I reasoned. Positioned in front of a flat screen TV and a wall of snacks, protein drinks, coffee and water machines. I was impressed with the effort to maximize comfort. I waited for a nurse to start my IV, all the while trying to remain composed. I had never attended a medical procedure on my own before. While I waited, a few cancer patients began arriving, easily picking out their chairs, visiting with others. This was routine for them.
I sat quietly observing, scared and pondering.

I was having my first IV Iron Infusion with a second infusion scheduled a week away. With tablets I managed to increase my hemoglobin from 9.2 to 11.4 with an iron saturation of only 3%. I've been lucky to have my hemoglobin reach 12 on occasion. I decided I would undergo the trauma of IVs to see what a high hemoglobin felt like. An experience I haven't had in over 20 years.


It took 3 attempts for an IV to be started. Not necessarily uncommon for me. My emotions were being rubbed raw. Years of medical trauma was rushing back over me and without any notice the tears began streaming from my tightly shut eyes. I didn't even realize I was crying until I felt the warmth of my tears trickling down my cheeks. My psyche couldn't take anymore evidently. I began to doubt myself and my ability to attend medical procedures alone. Maybe this wasn't such a great idea to come alone. I can't take this. I don't know if I can withstand 4 sticks....no 6. I've withstood 6 before....6 and I'm done with this.

3rd stick was the charm. I was warned not to move due to the positional nature of the 3rd IV. Like I'm moving with an IV in anyway, ha. I sat perfectly still as the reddish brown iron began to pump into my arm. My attention brought back to the cancer patients who primarily make up the composition of patients there. I scolded myself for letting my PTSD triggers get the best of me. There I sat with cancer patients who endure IVs and chemotherapy on a regular basis just to attempt to survive what is attacking their bodies and there I sat crying over pediatric needle sized IVs.

15 minutes or so passed and I began to feel overly tired as the iron bag drained itself. This was followed by saline pumping in me to be observed for allergic reaction. This, this is why I thought I could attend on my own. I didn't want to burden anyone with a 15 minute procedure. Granted it took 45 minutes to start the procedure and have a working IV. In my drowsy state my confidence returned. I can do this on my own again next week. I'll try not to let myself cry. I'm stronger than my PTSD, I tell myself.

Bruised, sore, and tired I left to return to work. A coworker explained to me it's normal to feel tired after receiving iron but I should notice an increase in my energy within a day or two. So far I haven't noticed a difference in my energy but remain hopeful as I prepare for my second iron infusion just a few days away.

Wednesday, August 20, 2014

Anti-inflammatory Diet Progress

anti inflammatory diet life's a polyp

The anti-inflammatory diet study started the 17th so I've been on it four days so far. I've noticed a few changes thus far.

My appetite is decreased, I feel fuller with less food and fewer urges to snack. I've been going to the bathroom more regularly. As you may recall from earlier, I haven't required my Lonox for over three weeks now because I had been very sluggish, even constipated feeling. I still am not requiring my Lonox but I'm not feeling so bloated, sluggish like.

I've lost six pounds, mostly water weight I'm sure. I've lost so much this week that a co-worker asked to be put on the diet too! I did require a potassium pill tonight but my potassium was low at my last lab draw a week ago so I wasn't surprised by the cramping. I'm just grateful I'm not requiring 9 potassium pills a day anymore, those suckers are huge.

Finding foods to eat hasn't been difficult even though it is restricted. I actually have too much food I can eat in my fridge and I'm afraid I won't be able to eat it all in time so I'm being mindful of possible need to freeze some food lol. I was very grateful when my mom brought me some homemade salsa as I'm not allowed store bought because most of it has forbidden ingredients. My frittata wouldn't have been nearly as good without my mom's salsa! I've even told my husband he can't have any of my mom's salsa lol!
The hardest thing to give up though has been coffee. It's not because of the caffeine either. Caffeine doesn't seem to effect me, I drank 11 cups of coffee and then went to bed 30 minutes after my last few cups one night. Didn't have a problem sleeping at all. No, it's more the sensation of coffee, the flavor, the feel of it on my tongue and filling my stomach. Cold or hot, I really enjoy coffee beverages and they've been a nice treat and even a filler when hungry. I miss it :(

I hesitate to say my sleep is better because my sleep goes in cycles since I stopped taking gabapentin and I could just be in a good cycle right now. My energy level hasn't increased but I've been sleeping soundly and not having difficulty falling asleep this week.

Overall the diet hasn't been bad. It's amazing the will power I have to follow a strict diet when it's really important to me. Besides currently, I've only followed strict healthy eating practices for my wedding and professional photographs. Lol. But I would consider research for us FAP'rs to be highly important and I'm appreciative to have been selected for the study.


Tuesday, August 12, 2014

Med Needs Changes

medication changes life's a polyp

So a weird thing has been happening for over two weeks now. I had a really bad food week where I ate junk food out for at least one meal a day. Now this usually makes me bloated, sluggish, even constipated feeling but once I start eating healthier the diarrhea comes back in full force. My guess is trying to rid my body of the unhealthy junk and rebalance itself. But I've started eating healthier after that week, although some days were worse than others. But yet, I still feel sluggish enough that it's better not to take my Lonox. And on days that started out normal and I did take my Lonox, it ended up a mistake as I became too constipated again. So I haven't taken it regularly for two and half weeks. This is longest I've gone without my Lonox. And I'm on the lowest dose as it is, I used to require the highest dose!
Now I'm not about to suggest for a moment that I no longer need the lomotil. I actually think if I strictly ate healthy, I'm certain everything would return to usual. But I am confused why it's not back to normal already, even with the sparse unhealthy meal.

I'm excited to see though how my bowel will act once I start an anti inflammatory diet pilot study through the Hereditary Colon Cancer Foundation. I'm very curious to see if I notice any changes with quality of life and symptoms. I'll be sure to discuss my results and experiences with you all as well. The HCCF is hopeful for clinical trials of the diet to be approved for further research. It will be very interesting to hear what results they gather.

Hopefully in the meantime my bowel will resume usual function so that I'll feel my "normal" again lol. I really prefer the diarrhea and empty, light feeling it provides to the constipated, heavy, bloated, overall yucky feeling. Some might disagree but I've become accustomed to my SBS.

Sunday, April 27, 2014

Lab Battles

lab battles life's a polyp

Like many others with GI issues, I have to constantly fight my electrolyte levels to keep them balanced. I've touched on the chronic fight and about the severe all out war I had with my electrolytes in the past that have since stabilized with diet and medication alone.

I experience cramping in my hands and feet on a daily basis, usually beginning in late afternoon so I decided I probably needed to read my last lab results. I was shocked by how little I'm able to maintain my electrolytes just in the low normal ranges. I shouldn't be surprised but I was. I knew that my hemoglobin remains below normal to just barely normal but I was surprised by my sodium and potassium levels and the ongoing difficulty I have to keep them in the normal ranges. I hadn't paid any attention as my doctor reviews them as normal and focuses on areas I need to improve, i.e. Hemoglobin.

I don't think I'll ever have a healthy hemoglobin. I take anywhere from 2-5 iron tablets a day just to keep my hemoglobin where it's at. It's hard to tell when my hemoglobin has dropped more or what just feels like normal to me. I try to notice though if I seem to be taking more naps and if so to try to take more iron, just in case. I eat a lot of salt compared to the typical person and it's a good thing because my sodium stays just above normal! I have potassium pills if I need to take them but I rely primarily on diet alone for potassium. Although, perhaps I should start taking them to prevent the daily cramping!

My B12 has been above average and increasing with my daily B12 microlozenge. I discovered to really have to let the microlozenge dissolve under your tongue without swallowing, as directed, versus just chewing it or it really won't absorb as well. I discussed before how I truly require a B12 in the 1000s, far above normal, in order to feel the benefits of a normal B12.
I have a theory on why the microlozenge works better for me than the injections, contrary to what my doctor expected. Because of my SBS and increased difficulty with absorption, I require a steady supply of nutrients in order to maintain whereas four shots a week isn't as steady as daily and there seems to be a short life to B12 anyway.
Fortunately my albumin is also well within normal as I'm able to eat enough protein to keep it safely maintained.

We all have ongoing battles with keeping everything balanced for our overall health. The first key is to be aware of where we are presently so we can know how much further we need to go. Don't assume your labs are alright just because your doctor doesn't point them out as an area of concern. You may need to be altering your diet and supplements on occasion to keep you out of concerning levels. It's just a good idea in general to be aware in order to be proactive and healthy. Let's keep fighting the good fight!

Monday, January 13, 2014

Dose Up

medications life's a polyp

It's amazing how the body changes its reaction to substances it has processed for years. You think you'll react on the same old way until one day it's not quite the same and nor is the next day and so forth. I've experienced this with food in drastic ways but also medication. I mentioned before during a Medication Mix Up that I discovered that my body was able to once again handle the generic for Lomotil and I only required one pill instead of four.

After a year my body started to become immune again. And after a lot of resistance, being my usual stubborn self, I finally gave in and upped my dose to two pills a day. And oh my goodness the difference! I wish I hadn't been so stubborn and waited so long, thinking it would just get better, that I just needed to wait to eat until after an activity. Sure, I still have the issues and consideration I always have when dealing with food and activity but with a slightly increased dose those considerations are once again reasonable. I've been able to exercise daily this week! That alone is a huge deal for me as any exercise stimulates my SBS. 

So I've learned my lesson. Sometimes change isn't bad, sometimes it's good to admit something isn't working as well as it once had and that's okay because sometimes the change is just what we needed. Change doesn't have to be a step backwards, it can be the step in the right direction we've been seeking.

Monday, September 16, 2013

Energy Rescue

life's a polyp

My new order of B12 came today! Insert happy dance here. I've been unable to get B12 for over a month now due to the shortage of injectable B12. However, I convinced my doctor to change me to oral B12. Before she advised that the oral form doesn't absorb as well as injections. My aunt, who is also a colon cancer survivor, was advised by her doctor of continued recent evidence showing oral form is as effective as the injection form.
This is great news and allowed for my own experiment. I will be able to be completely compliant with oral B12 as there's no fear or pain associated with a pill and taking pills doesn't bother me, I had to get used to pills when I was taking about thirty a day. No big deal. And what's even better is this B12 is a microlozenge and is cherry flavored. Jackpot!

I chose to get my B12 from Puritan Pride but any place would do. I like Puritan though because they have great discount deals for their supplements. I bought 5 bottles for the price of 2, a total of about $25 for them all! And the more you buy, the more you save!

I've been anxious for my new B12 to arrive, I was already low and the symptoms had been worsening. It may not seem like a big deal to have low vitamins but it can be dangerous. Please take care of yourself and listen to your doctor, even when it's hard.

Low B12 common symptoms include:
  • Weakness and fatigue
  • Light-headedness and dizziness
  • Palpitations and rapid heartbeat
  • Shortness of breath
  • A sore tongue that has a red, beefy appearance
  • Nausea or poor appetite
  • Weight loss
  • Diarrhea
  • Yellowish tinge to the skin and eyes 
If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:
  • Numbness and tingling in the hands and feet
  • Difficulty walking
  • Muscle weakness
  • Irritability
  • Memory loss
  • Dementia
  • Depression
  • Psychosis


Wednesday, December 5, 2012

Medication Mix Up

life's a polyp

I've been getting brand name Lomotil for years now for my SBS. In high school, I had to take 8 tablets a day - the max amount as well as Sandostatin injections in attempts to control the SBS. After about a year or more, my SBS started to become better controlled. I started taking the generic form of Lomotil until the formula changed and I was forced to use the brand name and have been doing so for years now. Well...I got a new order for my Lomotil and forgot to mark not to substitute for generic, and so I ended up with bottles of the generic form. What a headache trying to get this corrected! My mail order pharmacy wouldn't exchange the medication, although they offered to dispose of the medication for me...because evidently I wouldn't know how to flush a toilet. But that's besides the point, the real problem was yet to come. The mail order pharmacist said she would change the order to brand name and send me brand name medication. She did not tell me, even when asked, that actually a new order would be required and would be faxed to my doctor's office to be completed.
Unbeknownst to me, an order request was sent to my doctor's office and because I didn't know this, I wasn't able to warn or notify my doctor's office and ensure it was written correctly. Because anyone with any experience in the medical field, as a patient or employee, knows that a nurse typically writes the orders and obtains the doctor's signature and most doctors trust their nurses and will sign almost anything placed in front of them. Well...my doctor's nurse isn't the best to trust for this evidently. Because I ended up with exactly a 23 day supply for brand name medication with 5 refills instead of a 90 day supply and without any extra medication. My doctor writes my medication order for the max, in case I need more than what I normally take, so I'm usually actually able to stretch a 3 month supply to last me 6 months, thereby saving me more money. Well, this 23 day supply bottle at  a time cost me twice the amount of the actual 6 month supply my doctor writes for me. See why I was livid!?

Some good did come of this outside of me being forced to spend way more money than I normally do. I tried taking the generic medication to see if it would work for me again. And to my surpise and an unknown reason, I've actually been able to not only take the generic medication, but have been able to decrease to only taking 1 or 2 pills a day! I can't believe it and it makes no sense because I require no less than 4 pills of the brand name in order to function, which is a stronger medication than the generic.
So I'm hoping that this trend will continue and I'll be able to return to the generic form and next time I need a new order, I'll be able to intercept the nurse and prevent her costing me an extreme amount of money.

The lesson? Always remain involved in your own healthcare, communicate at all times with not only your doctor but the doctor's office staff, it doesn't hurt to try changing up your medication sometimes, and sometimes no matter the situation, you're going to get screwed over a bit but that doesn't mean you can't or won't come out on top in the end.

Thursday, June 14, 2012

Medication Roulette

medication life's a polyp

I had my routine follow up appointment this week with my GI. My appointments are typically routine now, I get my list of blood labs and UA completed the week before, review my labs at my appointment and am reminded about the importance of taking all my medications as prescribed and then we catch up on my personal life.
My medication list has been allowed to be significantly shortened from what it was previously. I still have a drawer that is solely for my medication bottles, this is indeed much better than the cabinet that was devoted to my medications for years. Some medications I no longer require, some my doctor has given up on me taking as directed, and others I take religiously without fail.

Since my last appointment in January, I decided to play a game of roulette with my B-12. I am supposed to take 2 cc twice a week of B-12. Now have I done this since living on my own for the last 4-5 years? No, of course not. Half the time I forget, half the time I don't want to remind my husband to give me my shots.
But this time, I willingly and knowingly decided to forgo my B-12 shots until June in order to see how much I actually did need B-12. The longer I went without my b-12 and the longer I went without any symptoms of fatigue from lack of B-12, the more I was determined to see my b-12 temper tantrum experiment through to the end.
In January my B-12 was in the 620-650 area, in June it was 234. Granted, I also have discovered that if I take my prescribed b-12 shots two nights before getting lab work done, then my b-12 appears nicely elevated and gives the illusion that I am following my doctor's orders without fail.

A lesson is learned each time we play roulette with our health.
Sometimes we win, sometimes we break even, and sometimes we lose our shirts and pants and are given a hospital gown.