￼Just prior to her marriage in September of 2013 they discovered she had an intestinal blockage and encouraged her to have surgery before her honeymoon. The thought was that she’d quickly recover and feeling so much better, she’d enjoy her honeymoon much more. No honeymoon was ever going to be possible.
Things went from bad to worse and what was to be 3 small incisions ended up several days later with septicemia and an ileostomy. A temporary opening made through the abdomen to catch the body’s waste in a bag while the intestine can heal and the Crohn’s go in remission through medication. Unfortunately, this failed as well and she developed several open wounds (enterocutaneous fistula’s) around not only this opening but in literally every incision that had been made into her abdomen and there were many! The largest being 8 inches long. One could literally see her intestines in this fistula and special ‘wound managers’ were made two to three times a week as we traveled the 200 miles round trip to Rochester/ Mayo. She couldn’t eat for nearly a year so a central line was put in where it was accessed 12 hours each day to pump the needed nutrition into her.
Her story is a long one with so many heart wrenching twists, disappointments, pain, grief and dashed hope, I can only bring you up to date with the most recent events. This April of 2018 she underwent emergency surgery in Rochester to remove the rest of her colon and rectum. (I can’t begin to tell you the excruciating pain and suffering of all the tests and probing. The look in her tormented, tear filled eyes pleading with them to, “Stop!” will forever haunt me!) Diagnosed now with perianal disease so severe the only logical resolve was to remove both the colon and the rectum. A permanent ileostomy was placed on her right side, the 3rd one! The human body has approximately 20 feet of small intestines, Hannah has just 7 left. Crohn’s still not in remission, began to attack the new sutures and they ALL opened up. Down her midline incision, all around the new ileostomy sight and a huge gaping hole where her rectum had been removed. On top of this, polyarthritis which also is an autoimmune disease was hard at work in her body. Lockjaw made it nearly impossible to open her mouth wide enough to eat or chew, knees incapable of bending, wrists so swollen she couldn’t pull the blankets up to cover herself. There were times she’d ask her sister Hillary and me to lay next to her and we’d all just cry, sobbing with her,,,,, hope can be exhausting at times and needs to be washed away to prepare for a new insurgence of fresh hope!
All of this has taken a huge toll on Hannah; severe malnutrition, septicemia diagnosis twice in one month, kidney failures, liver panels in dangerous territory, medical resuscitation, ambulance rides, weight loss to just 95# on her 5’6” body, hair loss, teeth falling out, PTSD, depression, the loss of her marriage and any hope of having her own children, ever. (Although when she feels even the least bit well, she’s the BEST Auntie!)
After several years of presenting her case to the courts she is finally classified as disabled and receives a small check, less than $700 each month but not nearly enough to cover all her expenses. With winter fast approaching, a trustworthy vehicle that’ll get her to her infusion’s 4 times a week for hydration safely, is desperately needed.
We still remain hopeful for Hannah, we have to. To lose her is just not a part of our family dynamics. Although her quality of life slips bit by bit through her fingers and she longs to be able to return to the hobbies and adventures that gave her life meaning, she still trusts in God. “Who else can I call on mom? I know this hurts Him too.” He gives her the emotional and spiritual strength to get out of bed in the morning and begin her painful, exhausting routine. Hannah has the strong support of her entire family and just a few of the best friends who’ve not abandoned her and face the challenges of being THAT CONSTANT friend head on! Lastly but so important is her constant companion Finn, to snuggle up with her at night and be that body that she can touch at will and expect a warm wet kiss as he digs in just a little closer,,,,,
We’ve been encouraged to use this forum to humbly ask for donations to assist Hannah in purchasing reliable and safe transportation also to help with medical bills and equipment that her insurance doesn’t cover, special food and nutrition, help with an occasional need of Finn’s and finally a much needed vacation when she’s able to physically make a trip,,,,, somewhere warm, near the ocean. Her agony, stress and loneliness successfully being exchanged with better health, comfort and just plain ‘normalcy’... We’ll keep you informed of her progress along this journey and you can have the satisfaction of knowing you gave out of your abundant heart to ease the climb for this beautiful, loving, strong and compassionate young woman. As a family we hold onto the belief that there is a reward in all of this, a message that she can share to inspire others who suffer with these horrific autoimmune diseases that can be so hidden from the naked eye while a deadly storm boils within....
Thank you for taking your time to read this and consider.
With Love, The Family of Hannah Rose Emberson￼
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