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.

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."

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.

National Cancer Survivor Day

Happy National Cancer Day to all you survivors out there! What are you doing today to commemorate your victory? It's hard not to look back and think about the time since fist diagnosis and treatment. It may have only been a short time for you or perhaps, like myself, it seems like a lifetime ago.
 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.

Healthy Digestion

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.