No, My Food Choices Aren't The Problem

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.

Reviewing Young Living Essential Oils for GI Symptoms

Disclaimer: I have been given this product as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

With worsening GI symptoms of chronic bloating, abdominal pain, and nausea interfering with my quality of life and a lack of improvement with prescription medications, I decided to try Essential Oils to address my bothersome symptoms. Rachel, with Young Living Essential Oil, provided a sample for my symptoms. 

I was skeptical of oils being able to help with my pain but with desperate times come desperate measures. Prescription medications were no longer managing my bloating, pain, and nausea to my satisfaction. However, I have used peppermint oil by itself before to ease my nausea. Oils can be applied topically and some may be ingested. 

It's recommended to apply peppermint oil to the soles of the feet or on the abdomen. I previously
applied peppermint oil to both locations without any improvement to my nausea. However, as long as I was able to smell the peppermint oil my nausea was subdued. I decided to resume using peppermint oil by rubbing a couple drops under my nose and reapplying as needed. In the case of severe nausea when I've been unable to tolerate visual movements such as watching tv or even reading, I applied a large amount to my abdomen and a small amount under my nose with noticeable improvements to my nausea. With the nausea relief provided by the peppermint oil, I decided to give DiGize Essential Oil a try for my bloating and abdominal pain. 

DiGize is a blend of oils that can be used topically or ingested as a dietary supplement and includes the following oils all used to address heartburn, bloating, nausea, stomach cramps:

• Tarragon
• Ginger
• Peppermint
• Juniper
• Fennel
• Lemongrass
• Anise
• Patchouli

I'm not comfortable with ingesting oils as a dietary supplement, although I believe the oil would be more effective ingested versus topical application. Due to this discomfort, I was instructed to apply 1-3 drops to my abdomen or the soles of my feet and I could reapply as needed. 

The first time I used the DiGize was the second consecutive day I had been feeling well after two completely miserable days due to my chronic bloating, pain, and nausea. For these two days, I had been tolerating food decently well and even was able to enjoy a night out with friends. However, this first night to try DiGize was after I decided to eat a snack without any of my other medications. Although my bloating and pain were not severe after this snack - they were bothersome. 

I have a midline scar and scars on each side of my midline from my previous ostomy stomas. Due to my scars being a thicker skin, I decided to apply about three drops of oil in between my scars on both sides of my midline scar equaling about six drops. I waited approximately 10 minutes with some improvement to my bloating and pain before applying a second dosing of the same amount to the same spots. After about another ten minutes, I noticed a greater improvement to my symptoms to my satisfaction.

I started using the peppermint oil regularly to combat my chronic nausea and saved the Digize for when my stomach became bothersome or remained bothersome even with the medications I take with meals. I've found that my nausea is no longer a daily nuisance anymore after more than two years of enduring it on a daily basis. The combination of my meal medications with the Digize has been a promising combination as the Digize provided the final push my symptoms needed to significantly reduce in severity.

If you're interested in trying any of the oils, I encourage you to contact Rachel for guidance on recommended oils specific to your bothersome symptoms. You may also find her on Facebook or purchase oils here with international shipping available.

Grasping at Straws with New Medicine

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.

When The Female Sex Complicates the GI

Have you ever noticed how the symptoms of GI issues are nearly always the same regardless of the actual diagnosis? They all seem to have in common diarrhea, constipation, nausea, cramping, pain, and bloating to some degree. And we can have more than one GI diagnosis thereby compounding the GI symptoms. Without medical testing, how would we ever know which GI diagnosis we have when all the symptoms are the same?

I was recently diagnosed with C Diff, a nasty gut bacteria that creates toxins. It's symptoms? Diarrhea, cramping, nausea, loss of appetite, dehydration, rapid heart rate, and fever. Without testing, my doctor and I would have never guessed I had C Diff as I have nearly all of these symptoms simply due to adhesions and short bowel syndrome. Fortunately though, the infection was discovered and I'm being treated with antibiotics.

My doctor's office called a few days after starting antibiotics and asked how I was feeling. I was able to eat better with reduced pain but continued to have severe bloating and nausea. The nurse was to relay the update and would call me back with any additional instructions from my doctor. However, since talking to the nurse my pain has increased yet again and with the start of my menstrual cycle, I noticed compounding symptoms.

The experience of menstruation is different for every woman. No cycle will be exactly the same nor will the symptoms be exact. Some experience early warning signs of the impending menstrual cycle while others have no symptoms. Some experience excruciating symptoms while others experience none.

There are physical and emotional or mental symptoms that can accompany menstruation. Physical symptoms that are considered normal include:

• Swollen or tender breasts

  

  quickmeme.com

• Constipation or diarrhea
• Bloating or gassiness
• Cramping
• Headache or backache
• Clumsiness 
• Lower tolerance for noise or light

It doesn't take long to realize that several of these premenstrual symptoms easily overlap with those of the GI realm. It's not uncommon for premenstrual symptoms to worsen a woman's existing GI symptoms. There's an interesting study from 2014 discussing GI symptoms before and during menstruation of healthy women. The results showed that even among healthy women, there is a higher incidence of diarrhea and abdominal pain and the presence of GI symptoms increases when a woman is experiencing emotional symptoms or fatigue. It would then be understandable that GI symptoms would further worsen for a woman already prone to GI problems. 

With the start of my menstrual cycle, I often lose my appetite and experience bloating and occasional cramping. These symptoms are identical to my regular GI issues only exacerbated. My already severe bloating is worsened to the point that I feel unable to eat even if I did have an appetite. I already periodically have backaches due to weak abdominal muscles that are unable to properly support my back after repeated surgeries. 

I anticipated my doctor's office to call me again on the same day my menstrual cycle decided to start. I pondered what I would tell the nurse. How could I be sure that my symptoms are from the infection, menstruation, or another issue altogether? I felt such great improvements after just four doses of my antibiotics only for symptoms to worsen once again after four days of treatment.

The remainder of the time on my antibiotics would be the same - excessive bloating, continued nausea, mild pain with eating, and an alternating mix of diarrhea and constipation (as constipated as someone with short bowel syndrome can be anyway). Fortunately, with antibiotics, the early fullness resolved and I've been able to eat regular sized meals again. The source of the remaining symptoms though continue to be uncertain - perhaps it's a combination or maybe it's not. Only time may tell as the course of the antibiotics and my menstruation ended simultaneously.

With the completion of the antibiotics, I'm scheduled for a follow up appointment in another three months. We shall see what happens with my symptoms over the course of the next three months. 

Seeking Answers

My health abruptly changed in 2015. Until that dreadful day in May 2015, my health had been stable since 2007, when I had an unexpected hospitalization due to my hemoglobin inexplicitly plummeting to 4. In 2015, I was suffering from loss of appetite as a side effect of my antidepressant medication resulting in a hospitalization for dehydration.

I continued to feel well physically until the night before my discharge from the hospital. That night I started experiencing an unceasing headache. The headache didn't improve with Tylenol and I finally gave in to trying Morphine - even though Morphine stopped managing my pain several years ago. However, it was in the middle of the night and I didn't want to bother my hospitalist with a medication order simply for a headache. So I consented to give the Morphine a chance to work. As I suspected, the Morphine had no effect on my pain and instead caused extreme nausea and constipation. It wasn't until I was given Phenergan that my nausea started to subside and I was finally able to obtain some sleep in spite of the pain. I didn't expect though to experience such an intense slow down of my bowel that I would feel as though I was starting to have an intestinal blockage from the Morphine.

And that's when my health changed for the worse once again - with that Morphine shot. Ever since I received the Morphine, I've been experiencing chronic nausea, early fullness, and increased abdominal pain particularly when eating. My GI doctor at the time ordered an upper scope and a barium x-ray to check for anything blocking my stomach or delaying gastric emptying. Both tests results were negative for any issue. My doctor chalked my nausea and pain up to adhesions from my previous surgeries. This was quite likely as I have had problems with adhesions previously causing nausea, vomiting, excessive diarrhea, and abdominal pain. It made sense and with multiple trial and error of medications, we found a regiment of medications that managed the symptoms to a tolerable level. I reached a point that I was able to accept my new health status.

My health started to change again though once again in 2017. I've started to have more intestinal blockages - two this year already - whereas I never had this issue previously. My last blockage was in mid August and it was as though someone once again flipped a switch on my health and it abruptly changed yet again. My blockage, fortunately, cleared on its own the next morning. However, with the clearing also came extreme early fullness and abdominal pain with eating. I was no longer able to eat an average size meal. Instead, I was being reduced to eating 8 ounces of soup and feeling as though I had over eaten. The nausea remained at the same level and actually improved due to reduced food intake. My early fullness and abdominal pain continued to worsen though as time went on since the blockage in August. I was further reduced from 8 ounces of soup to a few bites of food and was no longer able to drink liquid without severe abdominal pain and bloating.

With the news of my increased frequency of blockages and my worsening symptoms, my new GI doctor ordered a CT Scan with Contrast. The results showed:

1. Enlarged liver and pancreas
2. Renal Cysts
3. Hyperdense Stones in the Gallbladder
4. Mildly twisted Mesentry
5. Possible inflammation or infection of a fallopian tube
6. Adhesions with dilation of my small intestine indicating possible obstruction

With these results my new GI doctor believed my symptoms were stemming from adhesions, gallstones, and the fallopian tube. And so he ordered labs to check my values and referred me to my gynecologist. My gynecologist advised she thinks the issues with fallopian tube are simply adhesions and not an issue but will be ordering a pelvic ultrasound for better imaging of the fallopian tube for further diagnosing but wants to wait until my GI issues are improved to allow for improved viewing of the ultrasound. My lab results came back well.

My doctor decided to stop my Sulindac medication as side effects of Sulindac include nausea, pain, and diarrhea and to double my Prilosec to help heal any ulcers or irritation possibly caused by the Sulindac. I did notice some improvement to my ability to eat in the evenings. However, the mere sip of water with a morning Prilosec caused instantaneous pain and bloating followed by severe nausea within 20 minutes. Throughout the day my pain continued as well as difficulty eating due to the pain and early fullness. I started to have some days of constipation, which are rare for me on account of my Short Bowel Syndrome.

Next my GI doctor ordered stool samples to be tested and upper and lower scopes. My lab results came back as positive for C-Diff infection and my scopes showed enteritis, or inflammation of the small intestine, likely caused by the C-Diff. I also still have fundic gland polyps in the stomach and a new small polyp in my small intestine that was biopsied to test for cancer. I was started on a round of Vancomycin antibiotics for the C-Diff and my doctor advised I should start to feel better within 2-3 days of starting the antibiotics. And so I wait for both the pathology results and for the antibiotics to work.

As I'm awaiting resolution of my symptoms, I can't help but wonder if some of these issues were starting to appear in 2015 when my health suddenly took a turn for the worse and it was missed by my then GI doctor who dismissed my symptoms as adhesions and adhesions only. Was I developing gallstones back then and it was missed because testing was restricted to only inside my GI tract? I experienced concerns with the previous GI doctor in relation to my Iron and B12 levels as he felt I didn't need either supplement and after consenting to a three month trial without my medications, my levels worsened and I have since required regular iron infusions in addition to iron medication to maintain appropriate iron levels.

I'm trying to not dwell on the what ifs of what may have been discovered two years ago if my doctor at the time had taken the time for additional testing. Perhaps nothing else would have been found. Either way I am grateful for my current doctor for taking the initiative to continue to search for answers and resolutions to my symptoms. Although he anticipates my symptoms to significantly improve once the antibiotics are completed, he reassured me that if the symptoms aren't improved upon we will continue to search for answers to increase my comfort to beyond a just functioning level. My spirit and hopes are lifted with this reassurance as I give time for the antibiotics to work and hopefully work with great outcomes.

Fear of Food

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.

CBD Oil and Gastrointestinal Issues: A Review

Disclaimer: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

Cannabis has been in the news quite a bit over the last few years particularly for its medicinal properties and this includes those of the compound CBD found within the plant. There are several well known benefits of cannabis but my interest lied in the benefits possible for nausea and pain as these are two issues I experience on a daily basis. Medical marijuana isn't yet legal where I live and I have no interest in the psychoactive properties of marijuana's THC compound. However, the CBD compound can be made into a oil from the hemp part of the cannabis plant allowing the medicinal properties to be accessed without psychoactive properties. Cannabis compounds, or cannabinoids, attach to receptors within the human body producing particular effects. The human body even produces certain cannabinoids itself. The receptor that CBD interacts with is CB2 and has specific effects on inflammation and pain. There are some side effects such as tiredness and sometimes change in bowel habits, appetite, and weight. For more information regarding CBD oil visit Medical News Today.

I consented to review BioCBD+ to discover any benefits for my nausea and abdominal pain. According to BioCBD+, CBD Oil can help with the following conditions so I was hopeful.


CBD: Past, Present and Future Premier Issue #1

BioCBD+ Total Body Care states it has 10 mg of BioCBD per capsule that is water soluble rather than oil based CBD. According to BioCBD+ , the water soluble formula is absorbed and more efficiently used by the body.

The suggested dosage of BioCBD Total Body Care is 1-2 capsules a day to support and maintain total wellness or up to 5 capsules per day for treating severe discomfort.

It didn't include instructions for when to take the capsule in regards to time of day or with meals. I started by taking one capsule per day in the late afternoon, typically following an early dinner.

The first time I took BioCBD Total Body Care I was experiencing severe abdominal pain and bloating that day. I did notice within half an hour a reduction in my pain; the pain didn't cease but it did decrease in severity. 

My chronic nausea was tolerable except for one day when I experienced a mysterious licorice odor for a full work day in spite of being unable to locate any source of such an odor. This licorice odor caused severe nausea that required me to utilize a medical mask and peppermints to cope with the nausea.

After 2-3 days of taking one capsule per day, I began to notice slight insomnia. I didn't experience an increase in energy level just an increased difficulty to sleep. I typically go to sleep between 9 pm and 10 pm. I was no longer feeling ready for sleep by 9 pm but instead it was becoming closer to 1 am before I could sleep. However, when I did sleep, I slept very hard and awoke rested. 

It was around the same time frame that I noticed two other effects. I developed an insatiable appetite and my Short Bowel Syndrome worsened. I increased from my usual 15 to 20 bowel movements a day to 30 or more per day. My skin was becoming perpetually sore and raw from the increased bowel movements.

After a week of taking the BioCBD Total Body Care the worsened Short Bowel had become unbearable. The frequency and urgency of restroom trips started interfering with my ability to function at work and limited my ability to participate in activities. I didn't want to leave me house. The benefits of reduction in abdominal pain and nausea wasn't outweighing the increased bowel movements and their effects on my skin and my daily functioning ability. I decided to discontinue the supplement to see if my symptoms improved. After 2-3 days without the supplement my symptoms did indeed improve but not before I had a Short Bowel flare that left me incapacitated for a full day.
My appetite returned to normal and 5 days after discontinuing the capsules I noticed another significant decrease in my appetite. Food no longer sounded appetizing, I no longer had food cravings.


With CBD Oil's ability to target inflammation, I thought perhaps this product would be better suited for my mother as my mother has arthritis and experiences inflammation more than I do. My mother shares my two rare diseases of Familial Polyposis and Short Bowel Syndrome so she has similar GI issues. However, in addition she has Diabetes, Arthritis, and an ileostomy whereas I have a straight pull through - not an ostomy. So perhaps, I thought, if she does experience a change in bowel movements, it wouldn't be quite the interference that I experienced. She obtained approval from her Nephrologist to start the BioCBD Total Body Care capsules.


My mother consulted her Nephrologist and with approval started taking one pill a day and tried taking the capsule at various times throughout the day. Unlike me, she did not notice any changes to her bowel movements. After trial and error of various times for taking the capsule, she found one capsule in the evening to be most helpful. My mother reported she tends to have more arthritic pain, particularly in her back and hips, in the evening after completing a day's worth of activities. My mother also has chronic leg cramps, primarily in the evenings. Both of these issues present a sleep disturbance for my mother resulting in frequent nights of poor sleep. However, with one capsule in the evening my mother noticed reduced pain and improved sleep on a regular basis. She did not increase the dosage from one capsule to two capsules when she didn't notice any improvements or to attempt to obtain further improvement. Overall, she was pleased with her experience and recommended the BioCBD Total Body Care capsules for inflammatory pain management.

Dialectical Behavioral Therapy for Chronic Pain

This is a guest post by Danielle Faith

In Pain at 4 am

I've just woken up. It is 4 o'clock in the morning and I am in extreme pain. I'm doubled over and unable to move. My goosebumps have goosebumps and I'm ready to pass out or vomit from the extreme pain. I know I have to go to the ER and it's causing a ton of stress.

I have asked myself countless times what if there was a way to avoid a panic attack? What if I could handle the stress better? What can help me? Could it help me avoid the Emergency Room? Can I make my situation more comfortable?

Does this sound familiar to you? Have you ever asked yourself these questions or wished you could manage stress better? What if I told you, you can make things better? It is moments like these where Dialectical Behavioral Therapy (DBT) can help lower your stress and anxiety, allowing you to make clear headed decisions about how to handle your health and can even reduce pain. This is because pain and stress can be intertwined. When you're stressed, you are in more pain and more pain equates to more stress. DBT helps break this cycle and gives you a chance at de-escalating the situation.

What is DBT?

Dialectical Behavioral Therapy (DBT) is a behavioral treatment method originally created by Marsha Linehan to treat a wide range of psychological disorders such as depression, borderline personality disorder, and suicidal idealizations. Over time, it has been proven that DBT is also effective in helping patients handle chronic illness as well and has been used to lower anxiety in chronic pain patients. DBT focuses on a set of four behavioral skills:

1. Distress Tolerance Skills
2. Interpersonal Effectiveness
3. Emotion Regulation
4. Mindfulness

Distress Tolerance

Distress Tolerance Skills are used when the situation cannot be changed. Each skill offers difference insight and it is important to use the right skill at the right time for maximum success. These skills are designed to help you cope and survive during crisis and can be applied to both short term or long term emotional and physical pain.

   Personal Example of Distress Tolerance

Radical acceptance is one of a few distress tolerance skills a person can learn. It is all about recognizing what you can and cannot control. For instance, at one point during the course of my illness I had to live with a feeding tube. Having that tube in my body was the strangest thing. I hated it. However, as time went on I began to accept it for what it was in the moment. That didn't mean I liked the situation.

I actually disliked it quite a bit. But having radical acceptance about it allowed me to relax and recognize that this is just how things are right now. It isn't forever. Figuring this skill out made me feel so much better about my illness. Plus, I was right, the tube wasn't forever, because I had it removed last year and have been much better since.

Interpersonal Effectiveness

Interpersonal Effectiveness skills apply to the skills that help us attend to our relationships. It is about balancing priorities and demands. It is about balancing the 'shoulds' and 'wants' to build a sense of mastery. These skills help identify what we need to do in order to get the results we want out of an interaction while maintaining a sense of self-respect.

  Personal Example of Interpersonal Effectiveness

Many times I've ended up in the ER and have had to use a specific format of talking to get the care I needed at the ER. The skill I'd use is known as "DEARMAN":

Describe: the situation, "Doctor, I've been vomiting all night and am in a lot of upper right abdominal pain."

Express: your concerns, "I'm very stressed out. I think I'm having a pancreatitis flare."

Assert: yourself by acknowledging what you need, "usually Benadryl, Zofran, lot of fluids and pain medication help the situation. I may also need an admit depending on my blood work."

Reward: the person and tell them what they get out of the situation, "I really need your help to make me feel better, that's what doctors do best!"

Mindful: of what is happening and/or repeating your needs, "So, when you put the medication orders in don't forget to include the Benadryl; that's important or I'll itch from the pain medication."

Appear: effective and nice, "I understand what you mean doctor. I am, however, in a lot of pain."

Negotiate: alternative solutions, "I'm willing to try an anti-inflammatory first. But if that doesn't work, can we make sure there's pain medication ordered as well? Thanks!"

Emotion Regulation

Emotion Regulation is the ability to respond to a variety of scenarios in a manner that is socially acceptable yet flexible enough to allow for genuine reactions. Being able to control how you react to a situation is essential when it comes to managing how you might be impacted by a situation.

  Personal Example of Emotion Regulation

One day I was feeling sad about my chronic illness. I was telling myself I looked fat and was lazy. I felt really bad about it too. I really just wanted to check out and take a nap. That's until I went ahead and changed my thoughts which influenced my feelings and behavior. Instead of telling myself something negative, I went for something more positive. Instead of saying I was fat and lazy, I told myself I was chronically ill and doing my best. That made me feel a bit better and I felt a lot of empathy for myself; then I was able to get up out of bed and start the day.

Mindfulness

Mindfulness applies to distress tolerance, emotion regulation, and interpersonal effectiveness skills through observation. By observing what is going on around you, this allows you to fully engage yourself in the experience without labeling it as good, bad, or anything in between. The benefit of mindfulness is that it quiets your mind and gives you a way to acknowledge all your thoughts and feelings.

  Personal Example of Mindfulness

I was really stressed out about being sick and having a feeding tube that I just broke down. I started to cry with no judgment. Before I knew it, all the stress I hold in my neck, shoulders, and back evaporated. It was like magic. Suddenly, as I noticed the lack of pain in my body, I stopped crying in awe. For two days I noticed every little thing about not carrying that weight on my back and ended up having a really great two days.

DBT for Chronic Pain

As you can see, DBT brings a lot of hope to chronic pain sufferers. This is because chronic pain and anxiety go hand in hand. Treating anxiety is one easy way to lower the intensity of a person's pain. While it may not fix the root cause of pain, it can allow a person the freedom to make intellectual decisions about their care that isn't influenced by anxiety or fear. This alone can unlock doors for those with painful conditions. 

Intestinal Blockages

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.

Remember the Worst

I've been through worse. I've survived worse. 

I can survive this too.

I chant to myself, reminding myself, preparing myself.

I underwent a biopsy of a section of my last stoma site, now a scar, that never healed. It would become irritated and blister, a painful blister until it was made to burst. This cycle would continue on a weekly basis for 15 years until I decided to address it with a doctor. Although believed to be benign, the doctor wanted to complete a biopsy just to be safe while removing the sore simultaneously.

I dreaded the procedure. Actually, I dreaded the lidocaine shot. Not only can it burn but the level of pain would depend upon where the needle was placed - something I was afraid to ask about beforehand. My anxiety built and as the needle was placed inside the sore twice, I couldn't help but scream in pain before bursting into tears. The rest of the procedure was completed without incidence. And now, I'm left with the irritating pain that remains after the lidocaine has worn off.

I've survived worse than a shot in a sore on my scar. I've survived being sliced open without anesthesia, my intestine twisted around itself and surrounding organs, insertion of ng and rectal tubes, and the Essure procedure. And yet, in that moment those past survival achievements mean nothing. They don't help reduce my pain in the moment.

So how are these achievements helpful at all?

Remembering the worst helps in our mental preparations for what's to come next.

We survived worse so we can survive less.

If you're like me, mental preparation is a requirement for most medical procedures. Even lab draws require some mental preparation on my part. I have to coax myself into the right state of mind, inducing a bit of calmness into my highly anxious and fearful mind. I anticipate the pain before the pain begins and if I allow myself, I'll physically feel that pain without any actual physical prompting.

At times I require more than coaxing but also convincing of myself to go through with a procedure.

When asked if I would still have gone through this recent biopsy if I had realized the level of pain I would experience, I wasn't sure how to answer. I'm not sure if it would be worth it to me to go through this again. After all, the blistering sore was more of a nuisance than anything. It was never infected and posed no danger, just a reoccurring irritation of fluid build up. Now as the pain begins to subside with healing, I'm glad I had it done but would I really go through it again? I'm not sure I would. I like to avoid pain when I can. And it honestly hurt more than I first thought it would when I decided to have the sore removed. It was only during the approaching time to the biopsy that I started to fear and imagine what the pain level would be. Not only was it just a nuisance than any real issue, but as I wait for my new incision to heal I'm increasingly paranoid about the section of skin that was stitched to the incision section. This junction caused a new bump, very similar to the unhealing sore I just had removed. I worry that this will just create another unhealing sore or worse - a bump that will be more irritated than what was there before. Now I'm overanxious for the removal of the stitches to be removed so I'll be able to find out what this new scar will become. Would I go through this again to fix a new problem? Not likely. I would, however, regret my initial decision if my fears are confirmed about this possible new irritated sore spot.
I debated the idea of receiving iron infusions simply because it involved an IV. I desperately wanted my hemoglobin to reach a normal level - I was so exhausted I was ready for an IV. But after that first round, would I really want to continue with the infusions? So far, I'm willing to undergo the infusions in an effort to obtain a stabilized hemoglobin. And now I'm anxious to discover how the combination of infusions and ferrous gluconate (instead of ferrous sulfate) will affect the stability of my hemoglobin. And honestly, the first infusion of a round is the worse. After going back to receive an IV after several months without any it causes the anticipation to build, increasing the fear of the dreaded IV. Yet, the second infusion of the round is by far easier than the first. I survived the first one, I can survive the second one. There's less time for anticipation and fear to build between the first and second.

Regardless the various reasons we may hold onto remembering the worst, it remains to be helpful as we prepare ourselves for another medical battle - small or large. It reminds us of our strength and resiliency. Without these two characteristics, we become hard pressed for taking to the battle again. With these two characteristics though, we are fierce and unrelenting even we don't realize it. So stay strong, don't shy away from what you've survived. It will help you fight another day.

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 again...my 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.

Against the Odds

When I was unexpectedly rushed to the hospital and admitted for four days, my only concern was my ability to continue with my travel plans with my husband and parents to Alaska on a cruise the following week. An Alaskan cruise is a bucket list vacation for my mother and I, we've been planning and preparing for over a year and there wasn't anything that would make me miss our cruise short of being held hostage.



Seward, Alaska

After a limited appetite leading up to my hospitalization and 2.5 days without solid food while in the hospital, my stomach has not been able to tolerate food properly since resuming a solid food diet. I have been experiencing
severe stomach pain, cramps, and bloating shortly after eating and the pain lasts for the majority of the day and at times into the next day. I attempted to return to work immediately after my hospital release but my body rejected my attempts and forcefully informed me of my inability to resume normal work and activity. I was forced home for the next two days.



Snorkeling in Ketchikan, Alaska

My parents and husband urged me to cancel our travel plans due to the onslaught of pain and how it would affect my travel and activity ability. And I must admit, I was uncertain myself although my stubbornness would not allow me to miss this travel opportunity I had been yearning for over the years. With proper rest and limiting my food intake, particularly during the day, I managed to complete a half work day prior to leaving for our cruise. I wasn't sure how much of the activities I'd be able to participate in nor how much I would enjoy even being in Alaska but I maintained my argument that I would be able to enjoy our time on the ship and venture through the cities and excursions as able. I would watch my food intake, rest when needed, and take Lonox and pain medications to maximize my participation ability. Some days were more difficult than others due to the stomach pain but to my surprise and relief I was able to enjoy the majority of our trip, complete all excursions, and participate in many activities.




Hubbard Glacier. My husband spreading awareness of FAP

We spent an evening in Anchorage before driving to Seward for our cruise departure. Docking in Juneau, Skagway, Icy Strait Point in Hoonah, and Ketchikan we enjoyed whale watching, a train ride through the White Pass Yukon Route, nature walks, local culture education, and snorkeling. Our last day was spent touring Vancouver, British Columbia and to my surprise I managed to walk 5 miles in Vancouver to visit the Hard Rock Casino for souvenirs to add to our Hard Rock clothing collection! We hailed a taxi cab for our return to the train station for time management and relief from shin splints and further risk of dehydration. In spite of daily stomach pain that required rest from activities aboard the cruise ship and mandatory consideration and preparations with food and medication, I thoroughly enjoyed our trip and I didn't want to return home. My soul was touched by the history, culture, and nature of Alaska leaving within me inspiration and peace.



Mendenhall Glacier Juneau, Alaska

Since returning home the pain has yet to subside to my previous normal levels and I am limiting my food intake during the day to allow myself to function with minimal pain at work and during activities. I have an appointment with my new adult GI doctor at the end of the month to review my biopsy reports from my stomach polyps and intestinal ulcers as well as future treatment. I did obtain a copy of the pathology reports stating the stomach polyps were hyperplastic meaning they were benign and not pre-cancerous polyps. My ulcers were typical and without any malignancy meaning I understand that I do not have Crohn's Disease nor did I anticipate I did although I appreciated the doctor covering all bases. During my early college years when I began developing stomach polyps my doctor provided the prognosis of stomach cancer by the time I was 30. I am less than a month away from my 30th birthday and I'm ecstatic to report that my doctor's prognosis was wrong. I may develop stomach cancer later on but not before age 30!


Icy Strait Point, Hoonah, Alaska

Treatment Choices

Individuals share a vast depth of life views of varying degrees that include differences of opinions and needs regarding medical decisions and choices. I find this to be the beauty of the human experience. We have been given the gift of free will and decision making.

So in medical situations, how do we know what the right treatment choice is?

With any medical diagnosis we are typically presented with treatment choices and we must decide what is the best choice for us. Even when all factors are the same among individuals, a particular treatment option may not be the best choice for another individual.

Life experiences, spiritual beliefs, world views, prognosis and current health all contribute to the medical decision making of an individual. There is a lot to take into consideration to determine the best option for a particular person. It's common to see others within the health groups asking about others experiences with various treatment options for FAP as they debate the options provided by the doctors. Learning about the experiences of others, knowing what to expect with each treatment option is a great way to gain more information than a doctor is able to provide.

I didn't know anyone else outside of my family with FAP when I was a newly diagnosed child. I don't think the different treatment options of ostomy, jpouch, straight pull thru, etc. were discussed with me. I was 8 and I can understand why I wouldn't have been included in the discussion. However, as I grew I regularly inquired regarding other treatment options to reverse the ostomy I had been left with after serious complications courtesy of my surgeon. My quest for a different solution was understood by my doctor and when the opportunity to give it a try became available, my doctor and my parents left the decision to me. I was 14 when I started preparation for an ostomy reversal with a straight pull thru. I knew the risks, a reversal may not be possible and with any surgery there are always risks of death or other complications. Fortunately for me, my parents and my doctor respected my desire and my need to take the risk. A reversal was all I wanted, it was all I had thought of for the previous 6 years. I think my doctor and my parents realized the depth of my anguish and despair, I had to take this risk or I would never be happy not trying. Following a successful reversal, I was faced with several years of torture trying to maintain my straight pull thru due to adhesions. There were times I was ready to stop the fight for life. There were times when I knew my body was about to give out on me and I said my goodbyes to my parents. I survived through it all though.

And when I look back, I wonder...if I had said to stop the fight and let me rest, would my wishes have been respected? Would I have been given the same respect and support I needed for my previous medical decision if I had made the treatment choice of not receiving treatment?

I hope my parents and my doctor would have respected my wishes. I believe everyone has a point when too much is too much to ask anymore and a person knows what that limit is when the limit is being reached. I believe in freely making our own decisions and respecting that.

I am filled with terror, mental paralysis, and I experience a rapid heart rate with the mere thought of being forced to undergo a medical treatment I did not choose, like the young lady court ordered to receive chemotherapy. I've spoken about a very dear, close friend of mine who committed suicide due to his experiences with Fibromyalgia and Ulcerative Colitis. I wish that he hadn't taken his life, I miss him everyday and I will forever cherish the time we shared and memories of him. I, however, cannot be angry with him, I cannot resent him for his choice. I wish his choice had been different and I wish we all could have helped him more. But I understand the desperation, anguish, and pain that he must have been experiencing that he tucked away. And because I understand, I can't do anything but miss him and wish I could change it all for him. I am not by any means saying that had I been aware of his decision to commit suicide that I would have encouraged him to do so. I'm simply saying, I understood his struggle. And that's something everyone benefits from, to be understood.

I've been blessed with fairly stable health over the last few years and I hope this will continue. When my health changes once again, I'm not sure what choices I will be faced with or what choices I will make. All I know is that there are choices that I don't want for various health conditions and I am counting on my wishes to be respected. I completed an Advanced Directive with detailed instructions pertaining to my wishes many years ago and I regularly discuss my medical wishes with my family.

Medical decisions are never easy and living with those decisions isn't always easy either. There will always be risks and side effects of any medical decision we choose. We have to know what we believe is the right choice for us.