Posted 8/29/2016 2:45 PM (GMT -6)
I was diagnosed with Crohns in 1970, 46 years ago.
Back then there was hardly any meds, the first few decades there was Azulfidine, Pentasa, Asacol, Prednisone.
Here is my Crohns progression:
Years 1-10 - Bloating, pain, cramps, endless diarreah, malabsorption which caused a 30 pound weight loss.
Years 11-20 - The beginning of fistulas, progression down to the Cecum, Still lived with the fistulas and pain.
Years 21-30 - One of the fistulas was burrowing into my bladder, a life threatening condition that can cause Septicimia and death. Had the Cecum and descending colon removed. Another surgery was for a rectal fissure because of the endless diarreah.
Years 31-40 - Obstructions during the whole decade, spent many weeks at the hospital. The major obstruction was at the Anastomosis (the point of resection) which eventually resulted in lots of vomiting, pain, and loss of 60 pounds. Had another bowel resection removing 5 feet of intestine. This last surgery caused lots of bowel loss of control, Wearing diapers ever since, accidents progressing from once a week to 3 times a week. Have lots of techniques to detect the beginning of an accident, preventing the accident and cleanup procedures after the mess.
By now Humira came out in the market, had three good years of remission, eventually it stopped working, Doctor made the frequency to weekly, no improvement, developed antibodies. Switched to Entyvio which did absolutely nothing for me. Now I am on Azatrophine and Remicade and it is mildly working at double the dose at 10 mg($8800 per infusion six times a year). Was part of the clinical study of CNTO 1275, now Stelara, a tremendous success back in 2006. This is the drug to keep your eye on, soon to be approved by FDA for Crohns. Google UNITI 2 Stelara. There are some posts for this in this forum, do a search on it.
Years 40-46 (Now) Crohns travelled from the ileum, whole intestinal tract, the four sections of the colon, the rectum and now the anus, the most problematic of the all. This disease will travel to the end of this road since the anus is the final stop. I am lucky that it did not travel upwards.
This disease has lots of stops and starts, I have gotten better with no apparent cause, then worse with no change in my diet or stress. Now retired, I exercise with weights 6 times a week. This has improved my overall health and am thriving in the whole body which has made absorption better, it has mildly improved Crohns, but it is the use of the right biologic that has given me the best results.
The biggest lesson I have learned from all of this: Once you begin Obstructions and vomiting it is time to consider surgery, specially if it becomes month after month with no improvements in sight.