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.

Lab Battles

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

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

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

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

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

Taking the Personal Non-Personally

I think we've all had encounters with others that really peeved us off and even hurt our feelings, even though that likely wasn't the other person's intention. We take what seem like everyday normal comments personally, because for us they aren't everyday normal things.

For example, I work in the medical field with very ill patients who don't realize I have my own health issues that can be life threatening. So on a regular basis I hear about how I don't understand what it's like to be chronically ill and the difficulties in life a life threatening chronic illness brings. But only I do, I just look healthy.
Another common encounter is when I have to take time off work or leave work early because I'm sick. Others make comments about how nice it must be to leave early or take a day off, even asking if I'm just saying I'm sick in order to leave. Again, I look healthy and they're probably just trying to be funny.

But it's not always funny. Sometimes I just want to scream "You have no idea just how ill I am, how much I struggle." But I don't, usually I just shrug it off but sometimes it's really hard to make that shrug. Sometimes it's painful. And after I've vented to a trusted friend about how others shouldn't make assumptions about others, I feel better. And I remember that others don't always know nor are they usually meaning to offend. They may even be going through their own struggles I'm not aware of so I shouldn't make assumptions others.

Perhaps it's asking too much of society to place more thought into what they say because they don't know what others struggle with. It's certainly frustrating listening to others make non-personal, personal comments with no clue that they're talking about us. We have a choice at that moment. I choose to pick my battles, not everyone needs to know my health details and other battles are more deserving of my energy and focus.

 Try to shrug off the little ones, let's focus on the big battles that can be life changing. Lean on trusted friends for support when we need a shoulder and perhaps even band together for change.

Changing it Up

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

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

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

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

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

20th Anniversary with FAP

I'm not very good about remembering health milestones. I don't usually think about how many years since my first surgery or my last and when I do it's not typically anytime around the anniversary. But this year I did remember that it's been 20 years since I've started with my GI doctor. 20 years since diagnosis of FAP, 20 years I've been listened to and 20 years I've battled what FAP is and can become. 20 years.

I had such a difficult time getting any PCP to listen to me and my parents to obtain the necessary referral to see a GI specialist. I'm not sure how after such a fight for the referral I finally obtained one for the best pediatric GI specialists in the state and who is well respected outside of the state. But I did and I'm so grateful. I haven't always liked my doctor. As I mentioned in my last post, there were several years that I hated and blamed her. As I started my own psychological healing, I've realized how terrified I am of losing her as my doctor. I greatly admire and respect her. She has always stood by me and fought for me, whether with other doctors, hospitals, insurance, schools and jobs. She is my greatest advocate. 20 years I've been so fortunate.

I've seen a lot in the last 20 years with diagnosed FAP. I've had seven surgeries, more than enough near death experiences, endured PTSD, cycled in and out of severe depression, given the prognosis of stomach cancer by age 30 (I have two more years to make it past that prognosis!), completed school and maintained full time employment, got married and looking at surrogacy. I have good and bad days like everyone else but I'm hopeful that the worst days are behind me. 20 years it's taken to get to the place I'm at now.

Who knows what the next 20 years will hold. There's always guaranteed sadness and happiness. I do know that I won't have my doctor for another 20 years, it's very likely in that time period to develop cancer again, I hopefully will have adult children by then., I am likely to have lost and gained more family and friends. These are all realities I keep tucked away, taking it one step at a time.

That's how the last 20 years have gone, one step at a time. Although at times it felt like crawling steps and at times giant leaps. I look forward to seeing the future and what's in store but for now, I'm going to savor where I am at now and honor what has transpired to get me here. Our trials and our joys deserve to be honored, they help shape us and direct us in life.

20 years, I've made it. And here's to another 20 years.