My Survival of 48yrs with Crohn's
Last updated: August 2023
Despite good, horrible, and detrimental care throughout the years, I have survived. Mostly this was due to research and advocating for myself from 17 to today. Surgery has always been suggested since my start of the war with Crohn's. I knew that was incorrect, as research showed it only appears in the next area of the intestine..yet Drs insisted surgery was my answer.
The warrior in you
I became a nurse and had patients in Hospice that had surgeries, more than 2-3, and were now in my care, dying.
Don't get me wrong; it's been a long treacherous journey. 2-3 hospitalizations per year, numerous tries of meds, pain pain and pain. I also had times of remission, college, careers, marriages, and 5 children. I've accomplished much in 64 yrs despite my war with Crohn's. It sure brings out the warrior in you. My life was and is a constant interruption of goals, hurdles, and pauses.
Make the right choice for you
I learned that you must keep going, and do your own research from overseas and here. America is way behind European care for IBD. Doctors here stick to the old ways of care even with the Biologics now used, so hopefully surgeons will find another group of disease ridden ppl to attack. If I had the surgery at 17..none of my children would be here nor my grandkids. I wouldn't be here and never would have made it to 64 nor accomplished so much in my careers.
I made the right choice for me. Please make the right choice for you. Some cases have many factors involved, like my allergy to Sulphur drugs which help greatly.
Be smart, be informed
Some ppl trust their Drs advice 100% and never think to check anything for themselves. Be smart..be informed...do what's best for your comfort and survival. When pain is so severe is NOT the time to choose surgery...you'll do Anything to stop it. I taught many classes about Crohn's, self advocacy, and research.
I'm still here because knowledge is powerful and strengthening. Good luck.
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