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.

Keeping Hope and Finding Acceptance

This year marks 19 years since my first surgery, the surgery that resulted in a "permanent" ostomy for six years, making it 13 years since my ostomy was reversed. Although neither is a milestone anniversary and I tend to always forget about the anniversaries anyway. But occasionally my mind is lingers to think about the amount of time that has passed.

When I had my ostomy surgery I was told that it would only be a temporary ostomy and after three months to allow healing, I would have a jpouch in place of the ostomy. As I've discussed in previous posts, this obviously didn't occur according to plan. Due to complications, I wound up with a "permanent" ostomy. I was told there wasn't enough rectum left to be attached to my intestine. My rectum was kept in place though in spite of having a "permanent"ostomy. I never had any pain or issues with still having a rectum and I'm so grateful it wasn't removed.

 I experienced a lot of anger and denial after the complications started. I hated my doctors, surgeons, hospital and even my parents. I wanted them to all pay for what they had done to me and through a series of life events I was consumed by the rage and became suicidal and homicidal for several years after that first surgery. I never accepted my ostomy. Deep down I knew I wasn't meant to have an ostomy for the rest of my life. I believed it fervently, I hoped for a miracle obsessively. 

After six years, all of a sudden, after a routine colonoscopy my doctor thought that there may be enough rectum to attempt a straight pull thru and referred me to a surgeon for consultation. I could hardly contain myself. It was a long shot, but I had to take it. My life was about to change with the sudden option for reversal. I was terrified I'd wake up after surgery to find out it had been a failure. My parents agreed to give me a thumbs up or thumbs down as soon as I opened my eyes so I would know the result. I didn't know how I'd react if it was a thumbs down, I feared I'd break down immediately and cause my physical pain to increase. I couldn't wait to find out though. Fortunately for my mind's sake, it was a thumbs up and I was able to relax and drift back into a drug induced sleep.

Not everyone reacts or copes with having an ostomy the same way. Ostomies are life saving and can greatly improve quality of life. An ostomy is nothing to be ashamed of and the improvements to ostomies over the years has been amazing to truly make living with an ostomy very good. In spite of this though, some of us have an extremely difficult time with acceptance. I was one of those people and fortunately for me, I was able to have my ostomy reversed. For me, that's what I needed because I was fixated, trapped in a world of rage. I hope that had it been a thumbs down that I would have eventually been able to find self acceptance and lived with the love of life and dignity of so many ostomates I know and admire. 

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.