Sunday, February 16, 2014
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.
Labels:
Anniversaries,
Health,
history,
Medical Providers
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.
Friday, January 31, 2014
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.
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.
Saturday, January 18, 2014
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.
Labels:
FAP information,
Health,
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, January 13, 2014
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.
Labels:
Activity,
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.
Saturday, December 28, 2013
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.
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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