Sean Flynn's Fight

Bare with me as I tell you the story of Sean's life..



Sean’s battle with Crohn's disease started when he was 9 years old. Throughout his childhood, Sean visited countless doctors and hospitals. During this time, we went through a succession of medication after medication trying to find remission. At times we achieved it for short periods, but he never made it an entire year without hospitalization. At the age of 17, during his senior year he took a turn for the worse. Sean once again became sick, dropping almost 50 pounds, with no hope for remission in sight. Doctors diagnosed him with ulcerative colitis, not Crohn's, and we were told he would be cured with no more pain. Sean was all for that! We decided to go forward with the surgery.



It was a nightmare of a recovery for Sean. At 17 he had a huge incision as well as an ileostomy bag for two months, while the internal j-pouch had time to heal. We made it through the two month recovery period and he went back in for his second surgery for the reversal of ileostomy. We thought that he would finally be free of pain and suffering and have somewhat of a 'normal' life. The j-pouch did have its challenges, as it required Sean to take frequent bathroom breaks, but he was feeling pretty good. Sean got his GED, applied to college and begin what we thought was the new beginning of his life.



As the first semester went by, Sean was doing pretty well. Second semester started in February and he started feeling ill. Sean was experiencing horrible stomach pain, nausea and vomiting. Oh, God, I thought this is not happening! Sure enough back in the hospital he went. More tests, more CT scans, more blood work, more pain medication.



This was the never-ending vicious cycle of his life! The inflammation was back! What about the cure? What about never feeling sick again? Why was this happening to him? After two weeks of no improvement and copious amounts of pain medications, we insisted he be transferred to Cleveland Clinic in Ohio. They agreed and got it set up. So I packed my bag while my husband stayed behind caring for Sean's 5 siblings and off to Cleveland we went. I arrived and found the facility and thought I had entered small city. I made it to his room and within a very short time a team of doctors arrived. They had a plan of action and a promise for answers. It was determined he had Crohn's, not ulcerative colitis and his j-pouch was badly inflamed with ulcerations. We were fortunate enough to have the best doctor in the world for pouch disorders. I was relieved but felt defeated, as I knew this was the beginning of another battle! As we left the hospital Sean was feeling a little better. We were hopeful and we knew what we were facing. His doctor knew a doctor in Ithaca closer to home to follow him in between visits to Cleveland and in case of urgent care.






So he returned to his life and his girlfriend Jamie, an Elmira College girl from Maine, who would end up being his rock and the best part of his life. They are now married and have two beautiful children, Bryce Patrick is almost 4 and Liam Alexander is 21-months-old.





We were so thankful he found someone who not only accepted but also understood his struggles and gave 100% support! Sean would end up back in and out the hospital in Ithaca, as he would be too violently ill to make it to Cleveland, as it was a five hour drive to the clinic. In 2013, Sean was in and out of hospital 4 times from December through March. A nearly 3-month stay in the hospital required Jamie to hold the family together on one income while working two jobs; it was time to head to Cleveland again. So off we went. More tests... same old thing. Sean has had more radiation in his young life than we care to think about. Another frightening factor to this illness! When Dr. Shen scoped again, he found like before that Sean's pouch was horribly inflamed, and he wanted Sean to start Humira injection for an immune disorder. They were painful, but worth it if they put him in remission.


Sean seemed to be doing well until Jan 2, 2014 when he needed to be admitted for the same nausea, vomiting, and pain. His admissions were getting more frequent and lasted longer in duration. Another three months hospitalization and an abscess found near his pouch, which has caused a bad infection. Surgeons went in and drained it then Sean recovered and was discharged. However, Sean wasn’t feeling well after the surgery. Once again we decided to make the trip to Cleveland. Dr. Shen scoped him and found the perforation and abscess still present. This time there was a surgical consult as the abscess was of great concern. Surgery was preformed and a seton, which is a rubber drain, was inserted through the perforation to allow it to drain preventing the abscess from reoccurring. Recovery and then home again. This was March 2014.


July 2014, while on vacation in Maine, Sean had to be taken to their local hospital for temporary treatment, and then made it home and back to Cayuga. He had an elevated white blood cell count that they could not bring down after two weeks. They decided they had to transport to Cleveland, as his white cells were tripled and critically high. More tests. Dr. Shen scoped him again he was badly inflamed but hopeful. Ordered an MRI and it came back showing two major area of perforations on outside of the intestines and near the pouch. Surgery was necessary and an ileostomy would have to be performed, very hard words for a 27-year-old man to hear as well as his parents. His wife Jaime left the boys in the care of Sean's siblings and she headed to Cleveland. We were so proud of the way Sean handled the situation and recovery. Sean was found to have a rare form of Crohn's, only 3% of people have this type. We are home now but recovery will take awhile and another surgery is necessary in about 4 months. We are a strong family and we stick together. Medical costs, travel, family expenses and just cost of living are difficult. We appreciate all the support and love that we have received; thank you and God Bless you all.



The Entire Flynn Family