Hello all, here is my story will try to keep it brief, as brief for someone 54 years old. I will start with the precursor to my diagnosis.
As a teenager I would have severe bouts of diarrhea that would require a prescription strength anti-diarrhea medication. Family doctor treated the symptoms but never worked me up for a cause.
Started my career in healthcare, Clinical Engineering. What better place to work to be later diagnosed with a chronic disease like Crohn’s. During this time I had assembled a list of all the things I would like to avoid at all cost if I were a patient (LoL), Colonoscopy, Barium Enema, Cystoscopy, Nasogastric tube, and others but you get the picture and unfortunately can probably relate.
Right before Thanksgiving at age 24 perforated my bowel, had sepsis never felt so sick in all my life. Since I was not diagnosed with an IBD at this time, my Surgeon assumed ruptured appendix, he just said it was a huge inflamed mess with a very large abscess that had ruptured.
After a week in the hospital was sent home, surgical incision site started to weep and was infected. The incision was opened to heal from the inside out. It never healed and developed fistulas and was sent to GI doctor for work up. Reference second bullet above, one word ironic.
So about 5 months later with the diagnosis of Crohn’s I had a bowel resection due to the complications of the fistulas. During this time was on multiple episodes of Prednisone to control flare-ups, had an odd reoccurring inflammation in right knee which ended after the resection.
The early part of the next 12 years was spent exploring what “worked” for me. I was only on Prednisone to control flare-ups then later put on Pentasa, took a multi-vitamin, folic acid, took an occasional B-complex vitamin and paid a lot of attention to diet and exercise. Discovered what worked, what gave new meaning to “urgency” and came up with a diet that caused next to no problems during the latter part of this period.
Then the remission ended, started having reoccurring bowel obstructions over a period of a year and traced it to breakfast cereals. Stopped the cereal which has stopped the obstructions to this day.
The next 18 years with help from above, exercise and diet have been asymptomatic. During this time I believe I was the healthiest and non-compliant patient my GI doc had. Regrettably I failed to keep with a regular schedule of office visits and Colonoscopy. So after all these years trying to avoid my GI guy in the hospital he finally talked me into an office visit after threatening not to renew my Pentasa. He scheduled a CT with contrast and Colonoscopy August 2012. Well I had the CT, and didn’t schedule my Colonoscopy until I ran out of Pantasa early January 2013. So was scoped and he then ordered a small bowel series with barium.
Now the results and my quandary, there is a narrowing in the small bowel close to the original surgical resection. Seems bigger than what presented from my last small bowel from 2003. Scope and CT shows signs of inflammation and narrowing. But blood work was negative for inflammatory process and I am still asymptomatic. GI doc said I WILL obstruct and wants to put me on Remicade. I have good insurance and we have an infusion clinic at the hospital that I still work after 34 years. But Remicade seem like really big guns considering being somewhat “normal” and without symptoms for almost 18 years.
Thoughts from the forum?
I hope the best for each and everyone with an IBD and continue to pray for a cure. In the grand scheme of things and after reading the stories of others, I have been extremely fortunate. After almost 30 years thanks for giving me the opportunity to tell my story.
Steve
Perforated/Fistulas 1982
Diagnosed/Resection 1983
Bowel Obstructions 1995
Currently no medications
Asymptomatic
As a teenager I would have severe bouts of diarrhea that would require a prescription strength anti-diarrhea medication. Family doctor treated the symptoms but never worked me up for a cause.
Started my career in healthcare, Clinical Engineering. What better place to work to be later diagnosed with a chronic disease like Crohn’s. During this time I had assembled a list of all the things I would like to avoid at all cost if I were a patient (LoL), Colonoscopy, Barium Enema, Cystoscopy, Nasogastric tube, and others but you get the picture and unfortunately can probably relate.
Right before Thanksgiving at age 24 perforated my bowel, had sepsis never felt so sick in all my life. Since I was not diagnosed with an IBD at this time, my Surgeon assumed ruptured appendix, he just said it was a huge inflamed mess with a very large abscess that had ruptured.
After a week in the hospital was sent home, surgical incision site started to weep and was infected. The incision was opened to heal from the inside out. It never healed and developed fistulas and was sent to GI doctor for work up. Reference second bullet above, one word ironic.
So about 5 months later with the diagnosis of Crohn’s I had a bowel resection due to the complications of the fistulas. During this time was on multiple episodes of Prednisone to control flare-ups, had an odd reoccurring inflammation in right knee which ended after the resection.
The early part of the next 12 years was spent exploring what “worked” for me. I was only on Prednisone to control flare-ups then later put on Pentasa, took a multi-vitamin, folic acid, took an occasional B-complex vitamin and paid a lot of attention to diet and exercise. Discovered what worked, what gave new meaning to “urgency” and came up with a diet that caused next to no problems during the latter part of this period.
Then the remission ended, started having reoccurring bowel obstructions over a period of a year and traced it to breakfast cereals. Stopped the cereal which has stopped the obstructions to this day.
The next 18 years with help from above, exercise and diet have been asymptomatic. During this time I believe I was the healthiest and non-compliant patient my GI doc had. Regrettably I failed to keep with a regular schedule of office visits and Colonoscopy. So after all these years trying to avoid my GI guy in the hospital he finally talked me into an office visit after threatening not to renew my Pentasa. He scheduled a CT with contrast and Colonoscopy August 2012. Well I had the CT, and didn’t schedule my Colonoscopy until I ran out of Pantasa early January 2013. So was scoped and he then ordered a small bowel series with barium.
Now the results and my quandary, there is a narrowing in the small bowel close to the original surgical resection. Seems bigger than what presented from my last small bowel from 2003. Scope and CT shows signs of inflammation and narrowing. But blood work was negative for inflammatory process and I am still asymptomatic. GI doc said I WILL obstruct and wants to put me on Remicade. I have good insurance and we have an infusion clinic at the hospital that I still work after 34 years. But Remicade seem like really big guns considering being somewhat “normal” and without symptoms for almost 18 years.
Thoughts from the forum?
I hope the best for each and everyone with an IBD and continue to pray for a cure. In the grand scheme of things and after reading the stories of others, I have been extremely fortunate. After almost 30 years thanks for giving me the opportunity to tell my story.
Steve
Perforated/Fistulas 1982
Diagnosed/Resection 1983
Bowel Obstructions 1995
Currently no medications
Asymptomatic
