Saturday, August 16, 2014
Anti-inflammatory Diet to Begin
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!
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
Tuesday, August 12, 2014
Med Needs Changes
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.
Labels:
Food,
Health,
Medication,
Symptoms
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
Monday, July 28, 2014
Book Awareness
I'm taking a moment to shamefully and not so shamefully tell you about a book you absolutely must read. Although this book isn't directly related to FAP, it's written by a well known character among the social media ostomy and IBD circles and by association, is relevant to all sickies of the bowel realm.
If you haven't heard already of The Spider and The Wasp, I'll briefly tell you a bit and provide my review to you as well for your own determination.
The author and close friend of mine, Matt, shares his personal story of Ulcerative Colitis and the traumatizing near death experiences he experienced as a teenager and young adult. Many of us FAP'rs can most likely relate to many of his experiences, I definitely can. But he goes beyond the medical backstory and shares how he survived a hellish, hostile work environment with a boss that could quite arguably be described as insane. For example, yelling uncontrollably at him for not answering his phone while using the restroom. Through his medical trauma and PTSD, he details his accounts of coping with a extreme bully boss in a hilarious fashion.
My review:
" Matt Haarington illustrates in a hilarious manner the necessity of survival skills to face the variety of challenges life presents. Challenges at the basic core, we can all relate to regardless of where we are in life or what we’re facing. Just happens Matt’s survival skills are honed over years of trauma and trial and error coping with the aftermath. Like so many survivors, Matt shows us one method of coping is through humor and it is beautifully demonstrated in Spider and the Wasp. No doubt some of his keenly crafted phrases will spread like wildfire and “clown-boning ass-biscuit” will become the next popular catchphrase you’ll hear while walking down the street.
Matt’s handiwork contributes another piece to his readers
beyond a good laugh at the expense of another. We feel a sense of comradery, of
empathy toward our fellow mankind to rise up against the unjust and fight for
the little guy. And with or without intention, he also brings forth further
awareness of chronic medical conditions and the stigma and discrimination that
many endure. Awareness of the physical and mental ramifications that many of us
with chronic medical conditions face through our battles with the diseases,
ourselves, and with others. Matt contributes a work of help to the bowel and
bladder disease/disorder community and aids to further instill a sense of pride
and honor among those struggling.
As a fellow trauma survivor of similar health issues, I’m
proud to recommend The Spider and The Wasp to anyone dealing with their own
health issues and to anyone looking for a good read and a good laugh."
Labels:
Advocacy,
Health,
Mental Health,
Ostomy,
PTSD
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
Sunday, July 6, 2014
Accepting Help
Sometimes it's hard to share with others when we're experiencing health issues and when we do, sometimes it's hard to accept help from others. If you're like me, I'm appreciative of the offers to help but I don't think about how others could help me. I'm fiercely independently dependent. I'm reliant upon help from my parents and my spouse yet accepting help from others doesn't come naturally for me and even obvious suggestions don't come to my mind easily. Even now during recent health struggles, friends are offering to help me out. Only, I can't think of what one could do to help me outside of just talking to me. Sometimes you have to hit someone over the head to get them to accept help. Perhaps I would be more open to concrete, specific offers of assistance rather than general offers, haha.
In high school when I had a central line for TPN for six months, I couldn't get my central line wet resulting in the inability to take showers. I had to cover my central line with plastic, I then kept several hand towels over my central line and then kneeled over the tub and washed my hair under the faucet. My parents helped me with this usually, although I could manage by myself. It wasn't until shortly before I had my central line removed that the suggestion of going to a salon and having my hair washed was presented. And with that concrete suggestion, I went with it and it was absolutely heavenly. I was able to relax, have my hair washed thoroughly and without pain of my central line pulling with my arm movements. All for a small fee of $5, it was one of the best $5 I spent. And to think, I could have accepted someone else's help six months before even if it was just occasionally intermingled with my own efforts.
A friend of mine is having back issues and was needing help with transport to a doctor's appointment and childcare during the appointment. Again, it didn't cross my mind that others outside of my parents or spouse could or would be willing to go to appointments with me. I simply scheduled any medical tests with my parents' schedules in mind so that one could go with me. Even as an adult, I still want someone to go with me when I'm undergoing any medical tests or procedures. I just simply don't think someone should have to go alone and frankly, the thought terrifies me. I don't think anyone should have to face medical tests or procedures alone.
Despite how hard it may be for us to accept help from others, especially others outside of our health circles, it can be a wonderful thing. Typically, if someone is offering to help you out it's a genuine act of care and they're concerned about you. And let's face it, sometimes we really do need some help...even if it's just a shoulder to cry on.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
Sunday, June 1, 2014
National Cancer Survivor Day
I tend to forget about what I've been through, what I've survived, until reality provides me a sharp reminder. Reminders can be beneficial though. We can be reminded of where we've come from and where we're going, what we need to do to continue surviving and enduring. How we can help others through their battles. What we're made of, the strength and fight that's within us and coursing through us. What motivates us and what ultimately can heal our wounds.
Regardless of how long it's been since sometimes we lose sight of it all. Often times we either can't escape the past or we try to outrun it. Stay in the present, remember the past and where you've come from but don't live there. Be proud of your endurance but still take preventative measures for your continued health, take stock of the emotional and psychological trials you've gone through as well so that you may begin to heal.
And every so often, when you need it most, make sure that you do the following, because you deserve it.
Labels:
Anniversaries,
Health,
Support
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome.
I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.
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