Expecting the Unexpected

Familial Polypisis information, awareness and groups are spreading and growing like wild fire since I was a kid. People outside of bowel disorder groups still don't really know about us, but so many more within such health groups do. As a kid, I only knew one person outside of my family with this disease. Because of that, I've always felt a special connection to every FAPer.

I've mentioned in an earlier post that my mother, grandfather and likely some of his siblings were also FAPers. I didn't really understand what that many until I was diagnosed. Before that I knew what an ostomy was and how to take care of one and how to live with one by watching my mother and grandfather. I knew they both had cancer and were doing better now. I didn't know I'd be joining them or there was that risk. But I don't think my parents really knew either or at least didn't expect me to be diagnosed in grade school but thought it might be something I'd have to be tested for as an adult. After all, that was when it hit my mother and grandfather. Even after I was diagnosed, we didn't expect me to live with an ostomy for six years. The surgeon had prepared us for just three months until everything went terribly wrong.

Through all the growing FAP groups I've gotten to know other FAPers and it always amazes me when I come across someone and they were the first one in their family to develop the mutated gene. I definitely didn't expect any if this for me but I also wasn't completely unprepared due to having family members with FAP and ostomies. I can't imagine being the first in my family and to be the one who figures it all out, endures it all and potentially prepares their future generations for what may be heading their way. Although it would also be nice to know that no one prior had to go through FAP, perhaps it will end with you if your children are the lucky 50% and living without the fear or stress prior to being diagnosed.

As I've discussed before, my goal is to end my family's cycle of FAP, even if that means I have no children myself. But I think a lot of that comes from seeing how its ravaged my family through the generations and I'm the last born to have been diagnosed, my aunts and cousins have all been cleared. Perhaps if I was the first diagnosed, I wouldn't be obsessed with being the last.

There's definitely advantages to both the expected and the unexpected, it just depends on your response. And even when we do our best, we're never completely prepared. We just do our best with what we know.

Dose Up

It's amazing how the body changes its reaction to substances it has processed for years. You think you'll react on the same old way until one day it's not quite the same and nor is the next day and so forth. I've experienced this with food in drastic ways but also medication. I mentioned before during a Medication Mix Up that I discovered that my body was able to once again handle the generic for Lomotil and I only required one pill instead of four.

After a year my body started to become immune again. And after a lot of resistance, being my usual stubborn self, I finally gave in and upped my dose to two pills a day. And oh my goodness the difference! I wish I hadn't been so stubborn and waited so long, thinking it would just get better, that I just needed to wait to eat until after an activity. Sure, I still have the issues and consideration I always have when dealing with food and activity but with a slightly increased dose those considerations are once again reasonable. I've been able to exercise daily this week! That alone is a huge deal for me as any exercise stimulates my SBS. 

So I've learned my lesson. Sometimes change isn't bad, sometimes it's good to admit something isn't working as well as it once had and that's okay because sometimes the change is just what we needed. Change doesn't have to be a step backwards, it can be the step in the right direction we've been seeking.

Job Stress

It's been awhile again, I know. I apologize. The drains of work at times, more frequent than not, are overwhelming. With changes and added responsibilities requiring later nights periodically and the fear of increased frequency has been wearing on me.

I remember my health struggle just to work. My doctor told my parents when I was a child I could apply for social security disability and I'd have a good chance of approval. My parents never did, they wanted to see what I could handle first and knew even if I had to one day, I may still require their assistance throughout life. And so that's what we did. I tried my best and they helped me along the way. And with the help of my schools I made it through that struggle. Sometimes having to be homeschooled others home study with the public school. But I made it through. And I made it through college in spite of a minimum of two hospitalizations a year. My next challenge was a full time job. Would I be as fortunate?

I worked for six months, that's all my body would allow after school as it threatened to send me back to the dreaded hospital. I was so scared for my health and if the future. The stress caused severe SBS, reminiscent of the SBS struggles in high school when my life was nothing but restrooms, pain, and ever looming death. The time when I felt death's hands on my shoulders and I felt urged to prepare my parents they were losing their little girl. I could see all this once again on the horizon. My parents agreed I had to stop, they would help me. Just after a few weeks away from that first time employer, I felt my health returning. I wanted to try again. Maybe it was the job, the employer or that it was my first full time job and I had yet to develop the right coping for this arena. I'm not sure, maybe it was all of it. But I tried again and I did better the second time. I didn't have to travel anymore and for awhile my employer was supportive and helpful. Even when it became hostile and I was overwhelmed with depression, my body withstood all the stress being thrown at it. I was amazed and relieved! Maybe I do have a fighting chance after all.

And so I've been with my current employer a few years now. I still have bad days that my body warns me to take easy and so far I've been supported. But that fear always remains. What exactly is the limit, when will I be pushed too far, when will my body rebel and force me to that dreaded hospital again? I don't know, I don't want to know and so I keep my guard up and I try to protect myself from myself.

FAPulously Overwhelmed

I apologize for not posting for such a long time. Sometimes it's hard to do this, sometimes I feel so drained by the end of the day I don't want to do anything and other times I feel so good I want to go out and enjoy it for a change.

A few things have happened since my last post. As you may recall from Energy Rescue, I have difficulty with B12 like many FAPers. My B12 has jumped to 1095 after another month on B12 microlozenges, that's just 5 points below that to range! I definitely recommend anyone with low B12 to talk to their doctor about these microlozenges. My hemoglobin still remains below normal, even though a good B12 helps with absorption of iron. However, I have so many stools, and some body, that I don't think it can be helped. So I keep taking iron every time I eat. My last scope didn't show any ulcers or anything to explain how I'm continually losing blood. I believe my intestine becomes easily irritated if I'm unable to have a bowel movement or if I delay a movement for too long, in this case diarrhea and SBS are my friends!

I have even restarted taking the sulindac to reduce polyp growth.

In Ending the Family Cycle, I've mentioned my plans to have a surrogate and use only my eggs that don't have the FAP gene in order to have a child. Well as the time to try this continues to near, the more I've been overran with a desire for a child. Even to the point that I started double guessing my plan and considering risking having a child with FAP if the doctors refused to only use my non-FAP infested eggs. I don't condemn anyone's reproductive choices, there's nothing wrong to have a child with FAP. My personal decision had just always been then that if I can't have a surrogate and only use my non-FAP eggs, then I wouldn't have a child. I've based my personal decision on two things: I'd love to be the last person in my family with this disease and end it and secondly, I don't want to risk my child going through what I have gone through with so many complications from the surgeries even though the medical techniques and procedures are much better now.

In spite of this long standing decision, baby fever started to get me. But that fever may be over as another kind of feverish feeling has started.
The last couple of weeks I've experienced a sudden change in body temperature. Although my temperature has actually been low, I've been experiencing hot flashes. I've even enjoyed being outside in 32° weather with just regular clothing on, my only complaint was that my hands were cold. I'm going to contact my doctor, some have mentioned possible thyroid issues. Which got me thinking, there's a connection between FAP and thyroid. So I started reviewing articles about FAP again. I remembered risk of thyroid cancer but I didn't remember risk of liver, pancreatic adrenal, bile duct, and even a brain cancer!

What the hell!? As if claiming our whole GI tracts isn't enough, FAP has to try to lay claim to other parts of our bodies so we can possibly develop other cancers. Who the hell thought up this disease. There's plenty of other diseases I'd rather not have, namely any of the autoimmune diseases. Now I think FAP is another lottery jackpot of diseases, symptoms and complications just waiting to happen even more.

So needless to say, this helped my over zealous baby fever to return to a low simmer.
And after a few moments of self pity, I'm not worried that maybe I have thyroid cancer. I hope I don't, but I will get it checked out and I'll update with the results. Fingers crossed!

Mod Bod

We all look at things in different ways and respond differently. Our backgrounds, experiences, and personalities shape our views and contribute to how we respond. Sometimes I think I'm in the lone though in my views. Perhaps it's hindsight from past health battles and navigating all the newbie issues. Hindsight always seems so apparent after making it through to the other side and sometimes it's hard to remember what it was like to be new with FAP. Also, I tend to just do things on my own.

I'm reminded of all this when I'm asked how do you decide who and what to share with others about health details and ostomies. I've never quite understood this question, probably because I didn't really struggle with it. I didn't tell anyone details and I actually only told a handful of people that I had an ostomy. It never crossed my mind to share a lot with others, especially if they weren't in the same health circles as myself. The only people who know all my details are my parents and my husband. I always followed the rule of share what's comfortable, that not everyone needed to know and no one didn't need to know none either. It can't be black and white, it's going to vary based on who, what and why. I found it bizarre when told stories that a child's entire class or school were told the child had an ostomy. Never understood that, but my parents also didn't openly share my health details with others either. There's no wrong or right way about sharing health information. We all share in our own ways and based on our sharing philosophies, other's will seem different and even odd to some.

Another sharing I've never been comfortable with is the open visibility of an ostomy. I don't think anyone should be ashamed of having an ostomy, it's just something I was always very modest about. I didn't think others needed to see me walking around with my pouch hanging out, I don't see the need in it. I find the social awareness campaigns, such as Uncover Ostomy, to be  very well executed in it's portrayal and ability to raise awareness of ostomies and health issues. But we each choose to raise awareness and educate others in different ways and approaches. Each approach will be best received by different groups.

I remind myself of this when I see others completing every day public activities with their ostomies visible, I know the intent and I agree with the intent. I just chose a more timid route of education. It would be nice to be less inhibited but I tend to stick to the philosophy that my health issues aren't everyone's business and not everyone needs to know everything. And those who I do share everything with probably wouldn't mind if I didn't always share everything with them either. Haha.

To each his own.