Showing posts with label Food. Show all posts
Showing posts with label Food. Show all posts

Tuesday, October 13, 2020

FAP and a Feeding Tube: Jeni LeeAnn's Story

life with a feeding tube

This is a Guest Post with Jeni LeeAnn

I grew up knowing I had a 50/50 chance of having Familial Adenomatous Polyposis (FAP). My dad found out he had FAP just before I was born. His mother had FAP and all she knew growing up was that there was some family digestive disease that was killing some family members. She would up dying at 51 years old from complications of a Desmoid tumor when I was age 6.

My story is a little more complex because I was born with no nasal passages and had many surgeries before I could even remember. I do remember spending a lot of time in the hospital and doctor offices as a child. I was always preparing for a surgery or recovering from one. 

When I turned 16 we did the typical scopes to see if I had FAP. Sure enough I had FAP. I don't remember being sad or depressed about it. It was just another thing to deal with. I was no stranger to hospitals and surgery, so for me it wasn't a huge deal.

I had my large intestine removed when I was 20 and reconnected to my rectum so I don't have an ostomy. Life for me was pretty normal for the next 10 years, just yearly scopes and whatnot. I felt blessed and had no major issues.

Jeni LeeAnn
That all changed in 2009 when I started to have nausea, bloating, and pain. My doctor at the Cleveland Clinic did all the normal scans to see what was going on. What would follow would be about 10 years of guessing and uncertainty. He would do 7 surgeries to try to find out what was going on. Two surgeries were laparoscopic and 5 were full open surgeries. Finally, we found Desmoid tissue where my stomach and small intestine meet. It is as my doctor puts it "strategically placed for maximum damage", if it were even one inch lower it would not be an issue.

The hardest part of this time was the fact that I felt crazy. Every test and scan he did came back normal. I felt like it was all in my head. I even tried telling myself there wasn't a problem and would force myself to eat. That would only cause more issues such as being sick for a week following forced eating.

I was incredibly blessed by my doctor, he trusted me and knew what I was was the way it was. He never once said "sorry, I don't see anything on the scans so I can't do anything for you". He always said "I know something is wrong, we just don't know what it is yet". I know if I had many other doctors, they would have given up on me. I am beyond thankful for my doctor, who kept fighting for me.

The last 5 years have been a series of surgeries to put mesh around the Desmoid tissue and keep it at bay. This sadly, only gave me three weeks of freedom for my symptoms and would have a three month recovery due to the amount of surgeries. This seemed like a very high price for only three weeks of freedom. Then things progressively got worse to the point where after my last surgery in December 2019, I was loosing half a pound every day. I just was not able to eat or drink enough. It became mentally exhausting. So we decided to try a feeding tube. In March 2020, I had my Jejunostomy feeding tube (J-tube) placed.

Now, July 2020, I have had my feeding tube for almost 5 months and it has not been without complications. I had issues with granulation tissue as my body was healing from the surgery. The feeding tube had to be placed a second time which created a second hole. Due to Covid19, my doctor didn't want to risk infection due to any leaks from ingesting food or drink so I was nothing by mouth for three weeks until the hole was healed. 

I clean my feeding tube daily, keeping the site dry and flush the tube every three hours to keep it clean and for me to remain hydrated as I have difficulty drinking enough fluids. I complete nightly feedings for 10-12 hours with a nutrition formula I obtain through a home health agency. I obtain about 75% of my nutrition, or 1000 calories, through the feeding tube and about 500 calories from oral ingestion.

The feeding tube has given me my quality of life back. Food now is back in its proper place in life. It's something I can enjoy when it sounds good not something I have to force and get sick from. I feel incredibly blessed.

Jeni LeeAnn obtained a Bachelor's in Ministry Leadership and has served with her church in various capacities for the last 25 years. Jeni particularly enjoys working with her church's female youth as a youth leader.

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.

Thursday, September 12, 2019

No, My Food Choices Aren't The Problem

food choices

I have a long history of chronic pain caused by eating and no, it isn't my food choices that are the culprit. I appreciate others being concerned about my well-being but unsought advice gets to be tiresome, particularly when I've been dealing with my health issues since I was 9 and the particular issue of pain when I eat since I was 15. I think I have a good understanding of my own health issues and symptoms.

A lot of people are quick to tell me "It's what you ate", "You shouldn't eat so much" or "You have an allergy, try this diet". I have been tested for food allergies and intolerances, they were all negative. And the pain happens with everything I eat and even a gulp of water is enough to cause excruciating pain and stomach cramps at times. The only things that sometimes don't cause me pain are saltines, tamales, and Arby's Roast Beef Sandwiches and even then I'm sure if I ate enough of them, they would cause pain too. Sure, over eating causes me pain but the pain is just worsened by quantity. Even small meals or snacks cause me pain and discomfort. Reducing my intake of filling foods such as pasta, rice, and bread do help to reduce my pain but I still have pain regardless. I have some level of discomfort with everything I eat - it just varies on severity. And there are times that I can eat something and have one level of pain and eat it again the next day and the pain level is something different.

I started experiencing excruciating pain every time I ate after I had my ostomy reversed via a straight pull thru. I required another surgery within a year to remove adhesions that were causing a stricture of my small intestine. It took several years after this last surgery in 2002 before my body was better able to tolerate food. The pain never fully went away although it did significantly lessen - that is until 2015. With my hospitalization in 2015, I started having chronic pain and nausea when I eat and the nausea occurs sporadically throughout the day and night as well. Additionally, my adhesions now cause me a higher risk of intestinal blockage and now I'm unable to eat raw or undercooked vegetables or I will have a blockage. This makes it harder to eat light, healthy foods in an attempt to further reduce my pain.

Since 2015, I've undergone various procedures and tests and the conclusion is that my chronic pain and nausea are a result of my adhesions worsening again. They're just not to the point of requiring surgery. During a period of testing in 2017, it was discovered that I had C-Diff and that was the cause of worsening my GI symptoms as my stomach and intestine were inflamed and irritated from the infection that was wreaking havoc on my body. I remember during this time I was being told by others to "try this diet, you have food allergies". I held off from trying the diets these individuals suggested because I wanted to give all the testing I was completing a chance to identify a source and for treatments to be tried before I changed my diet. I'm glad I didn't jump on the diet bandwagon as it turned out my weight loss and severe pain were actually due to the infection I didn't realize I had.

I'm glad to hear that certain diets have really helped others and I wish everyone the best of luck but a diet isn't always the answer for everyone's health issues. It certainly isn't the answer for my symptoms.

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, February 15, 2018

Probiotics and the Immune System

food and probiotics life's a polyp

I attended a seminar about Probiotics, Food, and the Immune System presented by the Institute for Natural Resources. This is just one of the many topics INR Seminars provides for healthcare professionals. The material is written by an expert and then presented by various educators. This particular seminar's syllabus was written by Dr. Nikita Katz, M.D., Ph.D. and was presented by Dr. Laura Pawlak, Ph.D., R.D. emerita.

This 6 hour seminar covered an intense amount of information about how the immune system works and is affected by foods and probiotics (healthy bacteria) with a specific focus on pro-inflammatory and anti-inflammatory influences. I will not be going into as much detail as the seminar provided.

Dr. Pawlak began by explaining that in the big picture there is a reciprocal interaction between food and environment on the immune system and on an individual's microbiota that then may affect the brain. The particular focus was placed upon the effects of pro or anti inflammatory properties that may protect or hinder the body as genes become expressed and diseases occur. Food and the probiotics that are found within our food or through medicinal supplements impact these protective or harmful factors and how our immune system functions.

Probiotics are commonly recommended for individuals with digestive disorders or diseases to help maintain a healthy gut flora that is easily disrupted by digestive disease. Probiotics are also recommended to be taken following the use of  antibiotics in order to help replenish the good gut bacteria that is stripped away by antibiotics. To understand the importance of probiotics, it helps to have an awareness of the effects of microbiota on the body and interaction with the immune system.

Our immune system is made to protect us against threats that are not considered "self". Typically, immune responses are elicited from viruses, bacteria, and parasites that cause infectious diseases but can also be prompted by our own cells that look different than expected, such as cancerous cells. Immune responses are aggressive and must be controlled as the immune system has the capability to kill the identified organism, or person, itself.

The human microbiota is a combination of microorganisms that includes bacteria, fungi and archaea. Some microbiota found within humans are beneficial to the body whereas others may be harmful. There is a delicate balance required for human microbiota and its essential role for a healthy immune system and various neurobiological functions.

The Human Microbiome Project found that there are thousands of bacterial types found within an individual and different body sites have their own distinctive bacterial communities. The specific bacterial makeup for a given body site varies from person to person by type and abundance. Due to each part of the body having a different microbial arrangement, different probiotics will target different areas. Not every probiotic will be helpful to every part therefore this needs consideration when selecting food and medications specifically for their probiotic benefits.

It's estimated that 500 to 1,000 species of bacteria live in the human gut. Gut flora has the largest numbers of bacteria and the greatest number of bacteria species in comparison to other parts of the body. These gut bacteria are predominately Firmicutes and Bacteroidetes but others present also include Proteobacteria, Verrumicrobia, Actinobacteria, Fusobacteria, and Cyanobacteria. The gut flora is established within one to two years after birth which is enough time to allow for the intestinal epithelium and mucosal barrier to support the gut flora and provide a barrier to pathogenic organisms. Probiotics help protect the mucosal surface barrier from inflammation. When this barrier weakens due to inflammation, resistance to malignancy is reduced and cancer and inflammatory disorders may occur. With weakening of the barriers, we risk microbiota leakage or absorption in between cells where we do not want absorption. The brain receives every nutrient introduced to the body and probiotics activate the vagus nerve that reaches from the abdomen to the brain. The blood brain barrier allows nutrients to reach the brain while limiting harmful substances reaching the brain. However, with weakening of the barriers due to inflammation, harmful substances may pass through the blood brain barrier.

Depending on our food choices, certain foods can help keep good microbiota alive and bad microbiota down and vica versa. Fiber and oils promote the good whereas sugar and fats promote the bad. You may notice this when constipation occurs as bad microbiota likes constipation. Once the diet falls apart, so does the immune system. Diet also influences the type of microbiota present. A healthy diet promotes healthy microbioata whereas unhealthy foods promote harmful microbiota. Nutrients are vital for efficiency of the immune system.

Typical and Unusual Types of Probiotic Bacteria for Healthy Gut Flora

Foods that naturally contain probiotic bacteria include:

Fermented cruciferous vegetables, fermented root vegetables and legumes, and sour milk products such as:
  • Yogurt, recommended to be plain yogurt with no added sugar and labeled with live and active cultures. To sweeten, add fruit. Avoid adding sugar, artificial sweetners, or honey
  • Kefir
  • Icelandic skyr
  • Swedish filmjolk
  • Buttermilk
  • Acidophilus milk
  • Crème fraiche etc.
Non-dairy foods:
  • Kombucha
  • Kimchi
  • Sauerkraut
  • Green olives
  • Tempeh
  • Szechwan vegetable
  • Indian pickle
  • Mixed pickle
Another method for delivery of healthy probiotic bacteria is the Fecal Microbiota Transplant (Stool Transplant) to aid in restoring healthy colonic microflora by introducing healthy bacterial flora from the stool of a healthy donor by means of an enema, orogastric tube, or an oral capsule. This has been shown to be effective for C. Diff infections and is being used experimentally for treatment of other GI diseases including colitis, constipation, IBS and neurological conditions.

For the growth and activity of probiotics, prebiotics are necessary. Prebiotics are typically non-digestible fiber compounds in foods such as chicory root, Jerusalem artichoke, dandelion greens, garlic, leeks, asparagus, wheat bran, whole wheat flour, and bananas. There is not a broad consensus on an ideal daily serving of prebiotics but recommendations typically range from 4 to 8 grams for general digestive health and up to 15 grams for an individual with a digestive disorder.

There are diseases and syndromes linked to bacterial imbalance and immune dysfunction. These imbalances can occur in various parts of the body where the microbiota has deranged. In such instances, the normally dominating bacteria species become underrepresented and the normally outcompeted or contained species increase to fill the void. This dysbiosis, or microbial imbalance, is most commonly reported as a condition of the GI tract, particularly when there is an overgrowth in the small intestine of bacteria or fungi. This has been reported to be associated with illnesses such as periodontal disease, IBD, chronic fatigue syndrome, cancer, and colitis. It may be important to note that patients treated with PPIs to reduce stomach acid tend to have a higher frequency of small intestine bacterial overgrowth.

Microbes within a tumor can affect cancer growth and spread. Microbes and microbiota affect cancer formation by altering the balance of tumor cell life and death, immune system function regulation, and influencing the metabolism of foods and pharmaceuticals.
Mucosal surface barriers within the body require rapid repair, once these barriers are breached then microbes can elicit pro-inflammatory or immunosuppressive programs thereby allowing cancer and inflammatory disorders to occur. Probiotics can help protect the mucosal surface barriers against inflammation.

Inflammation is a biological response of body tissues to harmful stimuli and a protective response. Inflammation functions to eliminate the initial cause of cell injury, remove necrotic cells and tissues damaged from the original insult and start tissue repair. The typical signs of inflammation include heat, pain, redness, swelling, and loss of function. Inflammation may be acute or chronic. Prolonged inflammation can lead to a progressive shift in the type of cells present at the inflamed area. Inflammation can cause disease related genes to be expressed and is linked to most chronic diseases including arthritis, cancers, cardiovascular diseases, IBD, and diabetes.

Of the dietary components tested thus far on the Dietary Inflammatory Index (DII) for pro-inflammatory and anti-inflammatory properties, the top anti-inflammatory components include Turmeric, Omega 3 Fatty Acids, Fiber, Genisten (protein found in soybeans), Tea - the leaves are best, Alcohol - wine berries, and Magnesium. Turmeric should be taken with fresh ground black pepper in 10 parts turmeric to 1 part pepper for optimal absorption. the DII has a long way to go still as only a handful of dietary components have been tested for their pro and anti inflammatory properties.

When thinking of maintaining a healthy immune system, we must take in consideration not only the foods we ingest but also our exposure to environmental factors. With the advance of technology, we are now exposed to chemical compounds that were not naturally occurring on the planet previously and we are now exposed to chemicals normally hidden within the ground that are now exposed through mining and manufacturing. Heavy metals exposure causes significant alterations to the immune system by increasing the body's pro-inflammatory and decreasing anti-inflammatory responses. Air pollutants, pesticides, phthalates, PCBs, and perfluoralkyl substances exposure are also associated with medical conditions.

To help reduce one's susceptibility to immune dysfunction associated with such environmental influences, it's recommended to choose phthalate free personal care products, fresh foods rather than processed foods, and reduce exposure to pesticides, heavy metals, and air pollutants as much as possible.

To help lower inflammation and maintain a healthy microbiota balance, it is recommended to eat healthy, fresh foods, ingest probiotics, obtain adequate sleep , exercise regularly, and reduce stress. Exercise secretes proteins that are anti-inflammatory and remaining in the stressful fight or flight crisis response mode increases inflammation.

Sunday, October 1, 2017

Fear of Food

when you fear food  life's a polyp

Almost two months ago I experienced yet another intestinal blockage. Instead of this one being induced by medication, it was induced by food. This time I enjoyed steamed vegetables at lunch and stewed okra and tomatoes at dinner. I seemed to be doing well after lunch but as soon as I finished my dinner, an immense pain began to take over my abdomen. I didn't think too much about it for the first hour. Pain is normal for me and although I don't suffer from an immense level of pain everyday, it also isn't uncommon either to occur periodically. However, after an hour I still hadn't used the restroom. This is uncommon for me; I tend to have 2-3 bowel movements within the first hour of eating. My abdomen was becoming increasingly extended, tender, and firm. The pain wasn't lessening; rather it was worsening as the night went on.

I feared the worst but knew it was likely an intestinal blockage. However, unlike the previous partial obstruction this year, this presented as a full obstruction. I wasn't able to have any bowel movements of any amounts. As the night progressed, I tried my usual methods to relieve the pressure and get my intestine moving again. I took a double dose of milk of magnesia and I vomited all that I could.

Yet there was still no change. I began to quietly panic. I couldn't avoid the hospital very long if something didn't start moving. I decided to wait until the morning when I could call my GI doctor and request a direct admission to the hospital so that I could possibly bypass the ER. At 5 am that next morning, the blockage finally cleared and I was able to have the first of many bowel movements that day after not having any for over 10 hours. In fact, I spent the next 7 hours in the restroom. Needless to say, I was unable to go to work that day as I wasn't able to leave my restroom!

I have never had to worry about intestinal blockages prior to this year. I underwent testing to determine the cause of my sudden onset of chronic nausea and increased early fullness and pain after my last hospitalization in 2015. The results indicated that my adhesions were worsening and likely once again causing a stricture around my lower intestine. This was the cause of my worsening health with chronic vomiting and extreme diarrhea to the point of severe dehydration and malnutrition in high school. Thankfully, my adhesions have not caused such an extreme case as this at this point. I rarely vomit and my short bowel is nothing like that of those high school moments.

With medication and time, I've become accustomed to the early fullness, chronic nausea and pain. I'm able to manage it decently well most days. However, after this last intestinal blockage I've noticed another sudden change. My early fullness has become even more severe to the point that a mere cup of soup is filling and I easily become miserable if I eat more. My nausea has remained the same fortunately.

In addition to significantly smaller portions, I remain leery of vegetables unless they are mashed or pureed. I can't bring myself to eat vegetables otherwise. I've limited myself to soft foods that primarily consist of meats, some breads, soups, mashed vegetables, french fries, and noodles. Not much of a healthy diet by any means.

I have since ventured back into eating a small amount of lettuce every now and then but not on a regular basis anymore. Even when I do eat a small salad, I remain terrified that I'll be causing a blockage with my meal choice. Thus, I haven't allowed myself to resume my previous normal eating habits as other whole vegetables pose a greater risk than lettuce for an intestinal blockage. Interestingly, the fear of the risk of other whole vegetables is so great that I don't really miss eating these foods. I'm sure at some point I will venture further back into additional food choices, but at present I'm content with my overly cautious mindfulness toward my food. In the end, we need to be comfortable with whatever choices we make - physically and mentally.

Thursday, May 4, 2017

Intestinal Blockages

intestinal blockages  life's a polyp

It could have started due to various causes. There are too many variables affecting my daily physical well-being. I can rarely pinpoint one cause for anything. It's most likely a combination of actions or it may just be random luck. It's not always easy to pinpoint the root cause of a flare up or an intestinal blockage.

Due to a combination of iron tablets and regular iron infusions, I'm finding myself with increased energy on the weekends. This was a prime weekend for activity. I had energy for a weekend full of activities. Perhaps I pushed myself too hard two days in a row.

Saturday I wanted to attend a local festival so in preparation for walking and possibly limited restroom access, I took one Lomotil tablet in the morning to slow my Short Bowel Syndrome. Normally, I have about 20 bowel movements a day thanks to my Short Bowel. This can be problematic when faced with physical activity and limited restroom access.

I hate taking any anti-diarrhea medications. The crazy thing is, I used to take the max doses allowed of Lomotil in an effort to slow my bowel for daily functioning. Now, one Lomotil tablet leaves me in pain and disrupts my normal bowel function which has its own negative side effects. However, I am able to participate in activities with less worry about restroom access. The slow down action of Lomotil has become so severe for myself that I can accidentally induce an intestinal blockage simply by taking one Lomotil tablet two days in a row.

Saturday evening started off with my Short Bowel Syndrome emptying itself as much as possible once the Lomotil started to wear off. My bowel was making up for only requiring very few restroom trips during the day. Additionally, the slowed bowel agitated my intestinal ulcers resulting in extreme blood loss for about 6 hours. I felt alright though. I had made it through the life span of the Lomotil and my bowel was returning to its normal routine.

I woke up Sunday fairly normal except my bowel was a bit angry still at me leading me to not feel comfortable leaving the house unless required. Fortunately, I was able to stay home until my bowel calmed down. The morning transitioned into a pretty bowel typical day for me. In the evening, I decided to snack on pickling cucumbers. As I finished my second small cucumber and reached for the third one, I remembered the time I gave myself an intestinal blockage by eating crab salad made with a whole English cucumber. A whole English cucumber is too much for my intestine to handle. Before this occurrence, I never had an intestinal blockage caused by food. Not once. So I rationalized that pickling cucumbers are smaller and I've eaten two in combination with tomatoes, onions, and olive oil without any issue. So one more wouldn't hurt anything.

Monday started with uncomfortable bloating and limited bowel movements (for me...remember I'm used to 20 times a day) but a lot of my mornings start this way and improve as the day goes on. So I ignored it; just another day. I drank some coffee and ate a snack and lunch and my symptoms seemed to start to improve. But then my day drastically changed. Suddenly I found myself having a flare up. I was running to the restroom every 5 minutes - literally - and started having painful abdominal cramping. This went on for hours, I was excited when I was able to wait 20 minutes in between restroom trips. I took the 20 minute interval for granted and it returned to the 5 minute intervals. If I can just sleep, this will clear up by the morning I think to myself as I draw on past flare ups.

I managed to finally sleep for a few hours and I awoke to a severely distended
abdomen and
excruciating cramps. Now my bowel movements had gone from 5 minute intervals to barely any. Somehow, I went from flare symptoms to blockage symptoms over night. I tried drinking hot tea, eating soup, using a heating pad, lying down rather than sitting up. Nothing was making a difference. With hope, I took the max dose of milk of magnesium laxative to help out. Normally, if I take a laxative I have flare symptoms but it does help flush out my intestine and stop the abdominal cramps and bloating. The laxative did nothing this time. I knew I was getting into trouble but I still refused to accept that I was having an intestinal blockage and I refused my parents' suggestions of going to the ER. In desperation, I stopped trying to keep my food and drink down. I allowed myself to vomit until I couldn't vomit anymore. The pain and bloating improved but was still present. My mother convinced me to take a Lortab for the pain so that I could sleep. As the night progressed, the symptoms began to lessen. I started to have more typical for me bowel movements. I clung to the hope that this blockage was finally clearing or I would be forced to visit the hospital the next day.

Fortunately, the combination of vomiting and a Lortab did the trick this time and the blockage progressively cleared itself over the course of the third day. I was lucky this time.

I replayed my actions taken over the weekend. Was this caused by a combination of factors? Did I start into action a blockage when I took the Lomotil and then cemented it into place by eating too many cucumbers? Was I having a flare at all or was it just the early signs of a blockage?

With Short Bowel, there isn't always a definite cause for how my bowel will act on any particular day. But I need to be mindful of the choices I make to help protect my physical well-being. I need to pay heed to my body's triggers. I've learned that I need to be careful about how many Lomotil tablets I take and my body is starting to require more attention to food limits. With chronic illness, we are faced with periods of change requiring us to adapt to yet, another change in our health and how our bodies respond to daily life.

Monday, November 28, 2016

Accommodating Holidays

enjoying holidays with chronic illness  life's a polyp

The holiday season is already starting. It's a rather busy time for the majority of people between parties and meals amongst family, work, and friends circles. It's not even December and my month is already booked with holiday festivities.

The holidays tend to be a stressful time for everyone. The hustle and bustle of preparing our homes, traveling, hosting others in our homes, gathering gifts, attending celebrations, and more. However, for those of us with chronic illness there is an added stress of accommodating our health around the demands of the holidays so that we may also enjoy the holidays.

Whether we're traveling or we're remaining local, there's always concerns surrounding the holidays that we need to address for our own self-care and enjoyment.

I've already had to make such accommodations by changing the date of the gathering I'm hosting so as to allow myself to be able to physically attend a work gathering. My parents and I were concerned that I wouldn't be able to physically complete both one same day, even though the times didn't conflict. But would I physically feel up to both parties in the same day? Most likely not.

Many of us have dietary restrictions to take into consideration. This is easy enough to control if we're hosting holiday celebrations but is another ball game if we are visiting another household or party. We may not be able to enjoy the available foods or we may need to limit our intake to reduce the side effects of eating. This can also apply to activity accommodations. For example, I must be mindful of what and when I eat when wanting to participate in activities as food intake worsens my short bowel. This was another consideration for scheduling parties as I often experience pain and nausea after eating that can last for the remainder of the day.

For some individuals activity reduces GI distress whereas for those like me, it increases GI distress. I'm able to better control my short bowel frequency when I limit my movements. In order to enjoy activities that require physical activity I must limit my food and take medications to slow my short bowel.

Pill burden is another common accommodation, particularly with meals. For some this can be embarrassing as it can lead individuals to feel that it draws attention to themselves and their health conditions. Others are bothered by the sheer number and frequency of medications required. When traveling, toting around multiple medication bottles is a hassle that takes up valuable space for other necessary items, especially when flying. Yet keeping medications in their respective bottles can be necessary when flying to reduce confusion about medication necessity and to comply with states laws regarding prescription labeling.

Flying tends to always weigh heavily on my mind with my health condition. This was worse when I had an ostomy but still remains with me even without an ostomy. When I had an ostomy I had to be mindful of how many supplies I had packed, preparing for a TSA search, always worried that I would encounter a TSA agency who would try to challenge my medical necessity for my supplies. What if my ostomy leaked while I was in the airport or while flying? Did I pack enough supplies to last during my visit? Now I worry more about restroom access due to my short bowel. Will I have enough time to use the restroom adequately before boarding? What if we have a delay on the tarmac and we aren't allowed to exit the airplane? What if I urgently need to use the restroom and I'm not allowed to use the lavatory? The what ifs run rampant when I'm flying.
The what ifs reduce in number when traveling by car as public restrooms are fairly excessive in number in the United States although does decrease in number when traveling through rural areas. For travel tips with an ostomy, review the UOAA's Ostomy Travel Tips.

Whichever holiday you may be celebrating, wherever you may be celebrating, I wish you the happiest of holidays and enjoyment with your loved ones.

Monday, February 8, 2016

Healthy Habits

creating healthy habits life's a polyp

I lie on the floor with my arms by my sides, breathing in through my nose and out of my mouth, my mind clear. My breathing focused and my spirit calm. My body is heavy against the floor in this relaxed state known as corpse pose as I complete another day toward a healthy habit.

 It takes about three weeks to turn a behavior into a habit. Sometimes that three weeks is a long time when you're trying to build healthy habits. I'm not the exercise or even constantly healthy eating type. My commitment to such healthiness is sporadic. I abhor exercise and I have strong cravings and lack of self-control for the food I love. I go through cycles of increased healthiness after a bout of gluttony and laziness. I'm starting on an endeavor of health consciousness - involving daily yoga rituals and healthier eating. And I feel great (well, for the most part for me)! Some days I have to force myself to exercise but the longer I do this the less of a thought out plan it becomes and instead progresses toward becoming a habit.  I've learned a few things with my recent dedication that I'm aiming to turn into habit.

Self care involves more than tending to the mind and spirit but also the body.
The ultimate goal is to build a strong mind and body.

By nourishing my body with exercise in the form of yoga and healthy foods I'm helping to nourish my mind. This time is rewarding as I set it aside for 'me time' to focus on myself and let go of the worries of the world. The beauty of yoga and similar exercises is that relaxation and meditation moments are built in as the body connects with the spirit. Each pose focuses my mind and breathing. My attention placed on the within rather than merely the physical strength each pose demands.

My body welcomes fresh foods rather than processed and high fat junk foods. The flavor of a balanced meal becomes rewarding in itself and my body appreciates the healthiness with added benefits of no longer feeling bloated or sluggish. Previously when I followed the Anti-Inflammatory Diet my body quickly detoxified itself, losing weight rapidly, and improving my health within days of cutting out unhealthy foods. The difference in how my body felt before and after was remarkable. Staying hydrated is a challenge for me at times due to how quickly my stomach becomes full resulting in stomach cramps. I have been working hard to drink at least the minimum recommended amount of water everyday and I'm noticing improvements as I'm rewarded with hydration and further detoxification.

It can be difficult to change our habits, whatever they may be. But it can be very rewarding to change old habits and create new ones, particularly when it is for the betterment of ourselves. We deserve self-improvement and the effort that is required for self betterment is always worth it in the end. We just need to remind ourselves to continue to push through. We'll love ourselves for it later.

Monday, July 13, 2015

Relief vs Eating Disorder

pain of eating life's a polyp

A while ago, I randomly came across an article discussing the common risk of eating disorders among those with chronic illness and although not a novel idea, I find myself often thinking back upon this as a new revelation in my life. I hadn't given much thought to the link between chronic illness and eating disorders even in spite of my own previous diagnosis of 'relative anorexia'.

When I was in grade school after my first year of surgeries, my body became accustomed to not eating and so I ate very little even when I was allowed to eat freely. A consulting doctor wanted to provide me with a feeding tube and thankfully, my pediatric GI doctor stepped in and realized that my limited food intake wasn't because I refused to eat or had a desire to lose weight but rather a habit that formed as a result of my chronic ill health. I was placed upon a weight gaining diet and gained from the 80s to 100 pounds.

Through the years, particularly after my second round of surgeries, I have endured a very strong love/hate relationship with food. Food causes me great pain and inconvenience at times yet food is a necessity for survival and typically I enjoy the pleasure of eating. In spite of the pleasures of food, I still feel my very best when I fast for long periods. There are many days that I can easily fast for 2-3 days with little complaint. Not eating isn't a body image ordeal for me; the relief of not eating sometimes outweighs the pain and discomfort of eating. I feel my very best when I don't eat and when I'm underweight. I actually feel lighter, healthier, and more free without the heaviness of food and the digestion process weighing me down. And yet I realize this is unhealthy - one needs regular food intake to sustain proper health and nourishment.

The feeling of severe bloating and fullness, toxicity, and pain after eating has at times led me to finding relief through the use of agents with laxative properties, such as milk of magnesia or foods with laxative effects, or vomiting - although with seldom invocation and never with a premeditated intent such as in bulimia. Last night was such a night. I stood over the toilet and I want to vomit to relieve some of the pressure and pain or do I want choose the healthier choice and let my body complete digestion on its own. Once again, I realize this is unhealthy behavior but at times I find the possibility for relief overpowering.

Understanding the desire and need for relief from pain resulting from eating leads to understanding the fine line between relief and an eating disorder. Habits are easy to form, especially when they are positively rewarded, such as pain relief. These habits can become compulsive and obsessive in a short time as the cycle is continued. The line between relief and eating disorders becomes smaller and smaller and we can be left with greater issues than those with which we started.

It's been 20 years since the way I look at food changed and during that time my body's reactions to food have changed multiple times and each time a new set of trial and error learning commences. I don't easily accept change and often must undergo several backfire events from resisting adaptation before I will begin to alter my behavior and adjust to a new set of rules.

Adaptation is necessary to prevent further complications such as the risk and side effects of eating disorder like behaviors. It is an ongoing learning process as we gain understanding through trial and error and in discussion with others to learn from their experiences and insights as well. It's necessary to discover how our body reacts to certain foods and in what quantities as well as taking into consideration our altered digestion that presents with challenges to absorption and digestive processes. Such discovery will allow us to make better eating choices while reducing negative side effects. Yes, easier said than done. 20 years later and I still strongly resist what I know is in my best interest when it comes to eating and my food choices as I often cycle between healthy eating and overindulgence and poor food choices. Recognizing our harmful choices and behaviors is a start to changing harmful to healthy, as without recognition there is little room for change. Recognizing and understanding the struggle of one evil - pain - against another evil - unhealthy behaviors - helps us to make better decisions and realize the consequences of both choices.

Finding the balance between health issues and diets can be tricky as some diets for different conditions contradict one another, such as renal and diabetic diets yet renal failure and diabetes are often seen together. For healthy food choices and information view the following guides for ostomates and those with short bowel syndrome. Encourage and support one another among the struggle. If you think you or someone you know has an eating disorder, seek help.

Saturday, June 20, 2015

Refeeding is a Pain

I started the weekend early. Normally I try to sleep in, catch up on my rest and delay eating. The sound of my husband preparing for work kept me awake. My short to-do list for the day running through my mind. I'm awake, no need to try to force a return to sleep.

Completing my errands, I grab the largest cup of coffee the convenience store offers. Enjoying gulping down my lightly flavored coffee will help delay my solid food intake. I have my meals planned out today...even though I usually don't follow my meal plans. I'm aiming for a protein shake at noon. I'm rarely able to make my coffee last more than half an hour though. I have a food obsession and have difficulty delaying or slowly ingesting food or drink even when I know better.

I'm starting to feel hungry and my mind is reeling with possible food options. I'm unable to force myself to delay eating any further. I devour half a sandwich, the protein shake no longer sounding fulfilling. I wait, hoping I didn't make a mistake and cause myself to become sick once again. In less than 10 minutes my stomach feels full and a low grade pain begins to radiate through my abdomen. In the course of half an hour this pain may have me doubled over wishing I hadn't eaten. I hope I was able to prevent this severity by only eating half a sandwich rather than a full sandwich.

During the week, between coffee and a few snacks while at work I've managed to skip meals during the day and instead have a largish meal for dinner. This has allowed me to remain working. It's been a few days past a month since I started eating solid food again. Refusal to force an appetite resulted in my unexpected hospitalization a month ago. Now I'm caught again in a food dilemma. I am once again enjoying the taste of food and yet eating solid food causes intense pain causing me to not want to eat in order to prevent the resulting pain.

This week a former ICU nurse I work with visited with me and shared her theory that I may be experiencing symptoms similar to that of refeeding syndrome. I barely ate any food for a 1.5 - 2 weeks prior to my hospitalization and only had clear liquids for 3 of days I was in the hospital. Following my upper and lower scopes I was immediately placed on a solid food diet again without any gradual graduation from liquids to solid food. My coworker explained that immediately resuming solid food after a period of little to no food intake is difficult for the body and can cause serious health risks. Although I do not feel that I am at any serious health risks after a month of eating solid food, it would explain why I continue to have difficulty eating without severe cramping, bloating, and pain. I could understand my body having difficulty readjusting to food intake for a few days but not over a month. But then body is not a normal body. My body reacts very differently to typical issues and circumstances.

My coworker suggested I begin a liquid diet for a few days and graduate to soft, bland foods such as mashed potatoes, applesauce, etc before returning to solid foods. She explained how my body needed to readjust to food even after a month of eating. My body was likely entering a starvation phase and with an already established sensitive stomach, immediately resuming solid food intake doesn't sound like it was a good choice. Since the first night of resuming solid foods, I have been experiencing the stomach pain, early fullness, reflux, and increasing nausea. Desperate for relief, I followed her advice...for a half day at a time. My hunger for solid food winning in the evenings. However, I was feeling better than I have in weeks during the day with consumption of only liquids. Due to my stubbornness, I have yet to actually complete a full day of only liquids thereby not allowing myself to slowly graduate from liquid forms to solid forms. Sometimes it takes longer for me to learn lessons with my body as I fight against what I know needs to be done.

My stomach is rumbling loudly and bloated in appearance, the pain increasing with each 10 minute period. I set myself up for failure by eating solid food this morning. I'm now miserable, envisioning a scalpel slicing my abdomen to remove my stomach and small intestine and the relief I imagine this would bring.

Albeit slowly, I'll commit to a liquid diet for a full day and allow myself to recover. I tend to require completion of several failed attempts before I am ready to submit to that which I do not really want. If I commit now, I may have resolved my own eating dilemma prior to my appointment with my new adult GI doctor next week.

Thursday, February 12, 2015

Staying Healthy

staying healthy life's a polyp

For those of us with chronic illness, our immunity is already suppressed and the risk of our health status changing due to viruses or a flare up upsetting our body's delicate balance is a threat not to be ignored. It's a constant struggle to maintain proper electrolytes even without the presence of an additional illness. The consequences of an upset balance can easily land us in the hospital. It seems like even the symptoms of a non-severe virus, such as a cold, are multiplied for the immune suppressed.

Over the course of the last couple months with my husband's health changes I've noticed my stress levels peaking and the wear of it upon my body. Although the stress of his health crises have quietened, my stress has changed focus from him to work and my dwindling energy has become more apparent. Although I am sleeping soundly, I'm discovering I'm not obtaining the amount of restful sleep I truly need in order to function properly. Most nights I awaken early in the morning and am unable to resume sleep for 2-3 hours. And even on nights without any insomnia I continue to struggle with my energy the following day. My days are long and difficult, leaving me mentally and physically exhausted and my only salvation is the weekends when I can sleep in late. The perplexing issue is my lab values have maintained their usual levels - remain anemic but not any lower than usual and my B12 is above average. My only conclusion is stress is robbing me of truly restful sleep.

I've worried about my health deteriorating due to the combination of a lower immunity, high stress, and sleep deprivation. This is definitely not something I can afford, particularly at this time. My doctor, advocating for me as always, immediately suggests I reduce my work hours and offers to help me do so medically. My fear is that full time employment will no longer be an option if I can't find a way to maintain my health. I nearly required hospitalization after my first attempt at full time employment several years ago due to the effects of stress upon my body. I've survived full time employment since that time and I want to maintain that ability.

We can help to reduce our risk by controlling our stress and boosting our immunity. And the Immunity-Boosting Guide by the lifestyle blog couldn't have appeared at a more opportune time. I had been placed on a special diet and supplements to cater to my electrolyte imbalance during the rough years of my health. At the time I tracked the essential vitamins and minerals in particular foods so that I could incorporate them into my diet regularly. Since that time I've forgotten that wealth of information and the Immunity-Boosting Guide sums up a lot of this information and tips in one infographic to help reduce illness risk while naturally boosting our immunity through food and behavior.
Granted, anyone with a bowel disorder and who has gone through abdominal surgeries needs to be mindful of foods that may risk an intestinal blockage or excessive diarrhea. Review the UOAA Diet and Nutrition Guide for further information.
I hope you'll find both sets of information helpful for your arsenal in maintaining health and reducing further health complications.

Sunday, September 7, 2014

Anti-Inflammatory Diet Conclusions

anti inflammatory diet

The anti-inflammatory diet that I started has come to an end and although I feel better, I don't believe any my results were due to eliminating food allergens. To recall, the anti-inflammatory diet eliminated gluten, soy, corn, dairy, caffeine, sugar, alcohol.

I experienced the same feel good results as when I eliminate junk food, carbs, and starches and eat healthier in general. These are the same results I've experienced many times when watching what I eat by merely watching my calorie intake. When I eat healthier foods, I have less bloating and sluggish feelings. I usually have some increased energy as I'm not feeling weighed down. This also results in reduced stomach pain and cramping. Just like when I just eat healthier, my diarrhea increased on this diet. I attribute the reduced bloating and constipation/sluggish feeling to the increased diarrhea that allowed my gut to thoroughly empty. My gut is emptied is when I feel my best anyway and thoroughly prefer diarrhea to constipation.

 I did mention some sleep improvement at the first week of the study, but my sleep has been erratic since I discontinued Gabapentin for my bulging disc and it has remained erratic to this day. I seem to sleep better after several days of poor sleep where I wake up after 3-4 hours of sleep and remain awake for another 2-4 hours. This cycle leads me to become exhausted and thereby allowing me to sleep well for a night or two.

Although I try to limit my intake of milk and ice cream (due to not liking milk and the calories of ice cream), I do have increased diarrhea from these two dairy products. However, I still maintain that the side effects of milk and ice cream on my digestive system is due to the magnesium in milk and the sugar of ice cream. I've noticed that high sugar foods often result in increased diarrhea and magnesium is a natural laxative. I don't have the same side effects from other dairy products so I don't believe I'm lactose intolerant. 

So in conclusion, although this diet has benefited others I do not notice enough of an improvement for me to continue a life on the anti-inflammatory diet. Instead I will continue my efforts to eat healthy and will enjoy the benefits of healthy eating.

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.

Saturday, August 16, 2014

Anti-inflammatory Diet to Begin

anti inflammatory diet life's a polyp

Tomorrow is the day, I start the anti-inflammatory diet for the pilot study. 14 days to be exact. I'm very eager to see how the diet effects me and at the very least I'm looking forward to eating healthier again and shedding a few pounds. Beyond that, I'm really hoping to notice a change in my sluggish feeling I've been having for about three weeks now, as I previously discussed last time.

I've reviewed the materials I am to follow and completed the health questionnaire rating my symptoms of the last month and family history. Boy, when you have to rate and score your different health symptoms you quickly realize what areas really bother you. To no surprise, gastric and stool symptom areas were most bothersome but my sleep and head symptom areas really surprised me.
Basically, for the diet I'm to avoid all gluten, soy, dairy, sugar, corn, caffeine, alcohol and additives. If I stick with fresh, unprocessed foods I'm good to go. Fresh vegetables except for corn, fresh fruit and meats will be my foods. I'm to limit beef and pork though, I can have rice and quinoa. It shouldn't be too difficult as long as I don't eat out. Although you can eat out, it sounds like it'll be more of a hassle than cooking at home so I'll be limiting restaurant meals.

I already try to limit carbs and starches in order to maintain my weight but I've also noticed that carbs, which most contain gluten and will be eliminated by this diet study anyway, seem to feel heavier on me and increased bloating. I don't have celiac and I've read that removing gluten from your diet doesn't have any effect on you unless you have celiac disease. I'm skeptical that gluten itself will have any effect on me but I, personally, suspect it's the carbs themselves that cause the negative symptoms for me. But, I'm not an expert and I'm not really concerned if it's the gluten or not. Just a personal observation and reasoning I've come to.

I'll be updating you with my experiences, symptoms and conclusions. Who knows what will happen but I'm ready to find out!

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.

Saturday, May 3, 2014

Healthy Digestion

keeping healthy digestation life's a polyp

I've been eating very healthy for the last two weeks and what a difference I've unexpectedly noticed in my digestion, not to mention my waistline. I've been avoiding and at minimum reducing intake of starches, sugars, fats and focusing my meals on meat, veggies and fruits.  Boy what a difference that makes!

I'm not feeling bloated, abdominal pains or what's considered to be "constipation" for me. I'm still able to control my SBS with just one Lonox and engage in my activities. I'm feeling fuller with less food but without the pain and blah feeling of overeating and unhealthy eating. I'm feeling so much better than when I was giving in to all those unhealthy cravings. I wake up and feel like playing in the hills, not sitting on the couch holding my stomach because it's uncomfortable or painful to move.

Everyone should talk to their doctor before making diet changes, especially as some of us with GI issues have a difficult time digesting fiberous foods, specifically vegetables. I've been fortunate that vegetables have never been a problem food for me, even when I had an ileostomy. My mother though is plagued with intestinal blockages regularly, even when carefully selecting and chewing her food choices. Even too dry meat causes a problem for her.

Bottom line, it's important to consider our food choices to make better ones for ourselves. Yours may be different than mine, our bodies are similar yet different with FAP. But if you're having some negative symptoms, try some changes out with your doctor and see what happens. I've been too stubborn to make changes before with food and medications but those changes have always proved to be the better choice for me. I hope yours do too.

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!

Tuesday, February 25, 2014

Changing it Up

life's a polyp

Life is an ever changing being, what once was may not remain. I've experienced far too often and far too infrequently the unexpected. We never know how we will be tomorrow or a few years down the road. Time changes us and it's no different for how our body and systems are affected. Seems like every so often my body goes through a cycle of changes on how it operates. S

 The first major unexpected changes were after my last surgery as over time my body started to adapt and I was better able to tolerate food and a larger variety of foods. In Evils of Food, I first discussed food and what once was an excruciating experience gradually returned to an enjoyable experience, for the most part. Still though, there are times when food remains to be the primary contributor to flare ups that usually last for just a day or a night and I'm able to return to normal activities the following day. But then again, this can change also. Foods that are normally upsetting cycle and are not upsetting for a period whereas "safe" foods become bothersome. Periodic changes make it difficult to know what to expect and how to resolve the issue. A few years ago, I went through a period where any food other than raw vegetables and fruits were very upsetting to my stomach and system. Any other foods caused severe abdominal pain and cramping. This lasted for a couple of weeks and my system seemed to reboot itself and returning me to my regular diet.

I've experienced cycles in how my body reacts to medications as well. Through a Medication Mix Up I discovered that Lonox, the generic for Lomotil, was once again an effective medication for my SBS. Yet in just over a month, my system changed again and I required an increased dosage of the Lonox. And then, just a month or less later I was able to reduce the dosage yet again. I'm nervous to find out how long the current effectiveness of Lonox will last as I'd prefer not to return to the higher costing brand name Lomotil. Only time will tell.

I'm currently enduring another change that has yet to resolve itself. Due to the SBS, I usually am up during the night to use the restroom 2-4 times. And although this may seem like a lot to others, it's actually preferable for me. The last week or so I've been sleeping through the majority of the night without any restroom use. Because my intestine isn't being voided, my intestine is slowing to an uncomfortable pace leaving me feeling bloated and in pain until late towards the next day. I'm not sure the reason for this sudden change. I suspect it may be related to reducing calorie intake as I'm eating healthier or perhaps I'm not receiving enough fluid intake although I drink when I'm thirsty except  I try not to eat or drink within a couple hours of bed though. Drinking too close to bed causes severe pain from abdominal cramps all night long and is very miserable for me. Is it the foods I'm eating or the amount of or timing of fluid I'm drinking that needs to be altered? Or perhaps it's just my body's way of saying it needs to be flushed out? No clue. As I experiment with altering my habits once again to accommodate my body, I'm hopeful I'll find the solution or my body will resolve itself as it usually does over a period of time.

We're never guaranteed that life will remain the same, we're always faced with challenges. And that isn't a bad thing. The status quo becomes stagnant, stifling. Challenges break us from the mold, we're forced to find new solutions, fight new battles, enjoy new blessings, learn a new way. We strive, we strengthen, we change along with life.