I've been reading and see a lot of references to Princess Kate and Crohn's Disease. I hope and pray she's not dealing with the disease I've been dealing with since 1996.
When I was diagnosed my son was only 8 months old and I was convinced I would die before he was 2 years old. Numerous scopes, numerous drugs. The worse drug was one called Pentasa. I would tell my doctor, this isn't working, I'm passing more of the pieces of the capsule than I am digesting. He insisted this was what I had to do. Around 2000-2001 I sort of gave up. I stopped Pentasa and refused to go to the doctor. I had excruciating pain while #1 Oldskool and were dating. He could tell I was hurting but I refused to go to the doctor or ER. Finally, I agreed to go see another doctor. More scopes, more ER visits.
We finally sat down with the doctor very early in 2007. He was talking about another drug, an experimental treatment, or surgery. DH asked him "If it was your mother, what would you do?" Dr. said "If it were my choice, I'd have to say surgery.....she's heading there anyway."
We went to see the surgeon. After his exam he said I had a mass 'about the size of a softball' plus a umbilical hernia. He walked with us to the scheduler and told her to schedule me no longer than 2 weeks out. I had surgery early February 2007. I walked in freaking out after all of the pre-op information. Heart/Lung bypass machines....blah blah blah.
When surgery was over, the doctor talked to hubby. I had 6" of my small intestines removed, and a whopping 8" diameter mass of fistulas taken. I had become so good at guarding my stomach, I was hiding a mass that wouldn't fit into a Kentucky Fried Chicken bucket.
For 7 years I was in remission, but when it came back, it came back with a vengeance. Multiple trips to the ER and doctors, absolutely fighting and screaming against Humira. I tried Imuran, but that slapped me in the hospital with Pancreatitis.
Today, I can tell you that Humira has been a Godsend to control symptoms.
I have never followed the stereotypical signs of Crohn's..... I was overweight when I should have been a skeleton.
October 2021 I changed my diet. I actually went hardcore Carnivore until hubby said 'You have to eat some vegetables, you need roughage for your Crohn's' I adjusted and added a select few vegetables and dropped 50 pounds in about 8 months. I've never felt better and my labs are great. I'm still taking Humira injections - but instead of being rigid with the every 2 week injection, I can now stretch out my injections to 3 weeks apart, and sometimes once a month.
Crohn's is horrible, but it can be manageable. 28 years later, Crohn's isn't defining me.
