I am newly and properly diagnosed with CD or UC following a colon rupture back in August at the hepatic flexure. I apologize for the long story, but it was a medical mystery for some time.
The story starts back in 1997 when I went to my GP, general practicioner doctor, for severe cramping and bloody loose stool.
He took a look and diagnosed it as just hemorrhoids and prescribed some proctofoam which did not seem to help but eventually after a couple of months the symptoms suddenly subsided. Looking back now, it was a cortisone shot due to my severe seasonal allergies that my allergist found was the only thing other than massive benadryl to keep my mid May pollen allergies under some level of control.
So I go all these years thinking that these repeated flare ups of severe cramping, diarhea then constipation, difficulty and pain with bowel movement, and a repeated feeling of poor health as being just hemorrhoids. It also needs noted that since 1997 I have had apthous ulcers in my mouth almost constantly, 5 to 12 times a year, and in large groups.
Around 2003 the allergist suggests allergy shots to try and get my allergies under control. Despite the fact that I informed him that I had allergy shots as a child but had to discontinue them due to repeated reactions over time we tried allergy shots again. After the third month of the shots and then after each allergy shot I would have a flare up of abdominal symptoms along with severe muscle and joint pain that would last 3 to 4 days and sometimes was accompanied with a low grade fever. After 6 months of this I put an end to the shots as each shot increased the symptoms.
Two years ago the cramping, diarhea, severe muscle and joint pain was increasing in frequency and I finally went to an internal medicine doctor and insisted something was seriously wrong because at 39 I should not feel like I am 80. A full blood panel was run and inflammation factors were off the chart, a high CPK, and a testosterone level lower than he has seen on most 80+ year olds. The CPK indicated muscle involvement, inflammation factors were from unknown cause but he suspected the muscles and cramping may be related to it. I was put on testosterone replacement, flexeril, and ultram, which seemed to help significantly for a while except for the repeated abdominal symptoms. A second blood work showed some malnutrition issues with several key vitamins being low, so my vitamins I had already been taking was tripled and 1000 of B12 added.
about one year ago numbness started to occur with great frequency in my hands and feet with no known cause. We temporarily went off all medications except the testosterone and it had no effect. A nerve conduction study was performed and it did not show anything serious but some of the results were just off the edge of normal.
Here we go to last August when I rushed to the ER due to what seems like a heart attack, heart rate over 100, BP of 180/160, and swelling in my right leg. After one day of lots of tests including ruling out blood clots in the lungs and leg, the very bottom of the lung CT scan showed a black spot which indicated air in the abdomen. Lo and behold a full abdominal scan showed the extent of the air which was causing pressur on the bottom of my diaphram and the abdominal aorta. The surgeon treated it conservatively with nothing orally and IV antibiotics. It does need noted that by the second day of my stay the blood work for the possible cardiac involvement did show a steadily increasing white blood cell count. Had I waited until I had a fever and was ill, the surgeon informed me that surgery would have been required and very risky due to the onset of infection and the results would not have been good. So I consider myself lucky. The CT scan showed some possible UC or CD lesions.
November rolls around for a follow up endoscopy during a period of little to no symptoms. The endoscopy shows no immediate UC or CD but the pathology report shows very large microscopic colitis in every colon biopsy. The report indicates that the colitis must have been present for more than 10 years to be at that level.
Now I am finally seeing the light at the end of the tunnel but the gastroenterologist is only putting me on Lialda until he gets the IBDS7 results back and then will also do another full blood panel. So far the Lialda has managed to stop the bleeding from this most recent severe flare up and only partially helped with the other abdominal symptoms.
One final note. He flat out told me to find a lower stress job sooner rather than later or we would never get a good level of control over the disease. My current job is very high stress on a daily basis, not as bad as live fire combat training during basic training for the Army when I was younger, but still very close because it is continous.