How Did It All Start?

[Anonymous77]

Wondering about how this disease hit everyone the very first time - what are your stories, did it come out of nowhere and hit you like a wall? Did it slowly creep up until you just knew something was wrong? Were you healthy and in good form prior to it? Or was it just one thing on top of another?

Im keen to hear the variety (or lack of if thats the case)!

 

[ronroush7]

In 1989, I was told I needed surgery for a fistula and hemorrhoids. I wasn't the best at taking medication and I was taking a long time in healing from both surgeries. After a while of not healing, I visited a surgeon who determined that the reason I took so long to heal was because I had Crohns Disease. Neither my wife nor I had heard of it before.

 

[Anonymous77]

What were the symptoms of the fistula then if it wasnt clearly crohns? Was it a bombshell or a relief getting the Dx?

 

[Beach]

For me, I have colitis, I believe it was a gradual progression. I suspect I was born with the condition. When I was a baby I've heard I always had an upset stomach. When I was 15 was when I first began seeing doctors about the occasional stomach attacks. When I was 18 or possibly 19, I woke up sick and ever since that day have been pretty much ill everyday.

At first the daily stomach issues were irritating, but not a big problem. That changed by around the age of 21. I became violently ill everyday and lost around 40lbs. Despite the weight loss, and making many emergency runs to the bathroom during the day, I had good energy. Then around the age of 30 I became massively ill with incredibly painful stomach attacks occasionally. My energy levels plummeted when that happened.

Now, I'm much better health wise. I never had luck with medications given me. What has helped improve my situation has been modifying my diet. I've been getting healthier and more energetic of late, but the health improvements have been gradual. I wish I knew why the diet seems to be helping me.

 

[ronroush7]

What were the symptoms of the fistula then if it wasnt clearly crohns? Was it a bombshell or a relief getting the Dx?

I think it was mostly itching. I think it was a relief. Up until then, I thought it was just me not taking medication as often as I should. Even after that, I don't think I realized what it meant fully. Two years later, I was bleeding from an abscess and thought I had cancer.

 

[Ally1234]

I started to feel ill in October 2015 I was going to the toilet alot especially after eating, i had stomach pain and every time I had stomach pain I knew I had to rush to the toilet. I thought it was just stress as stress had always made my stomach funny. I went to the doctors in December and he did blood tests and stool tests. Thats when i got really sick, I totally lost my apetite and lost about 2st in 6 weeks whilst still going to the toilet 6-8 times a day. I saw the gastroenterologist in February. I saw him on the tuesday and he scheduled a flexible sigmoidoscopy for the Friday, after they did the test he said he wanted to admit me to hospital for iv steroids as the inflammation was so bad. Thinking about it now it is possible I have had the disease for 2/3 years prior as i had one period where I thought I had a gluten intolerance and tried cutting it out. I had also had blood tests for exhaustion before but was told they didn't show anything.

 

[ronroush7]

I also have wondered if there were earlier signs.

 

[EmbraceJoy]

For years, I thought I had IBS. 21 years ago, I believe I had my first flare, but I was pregnant with my first child, obviously female, and I think the Doctor dismissed the severity of my report. I kept telling the office that "something was not right."

{insert 20 years of varying issues of motility, diarrhea, constipation, eventually migraines}

In April, I was in Europe on an educational tour with my job. I got very, very sick. Figured I "ate something" that was poorly prepared or stored. Kept waiting for "things" to get better. The last 5 days of my tour were a blur. Came home, thinking sleeping in my bed would finally turn things around. Went to the bathroom to discover a bowl full of blood. Went to ER; admitted for a week. Had another related hospitalization shortly after.

 

[scottsma]

2006 extreme blood loss during BMs.Sigmoidoscopy and biopsies,diagnosed with proctitis.
A slow proceedure to crohns colitis in 2014.
Feeling pretty good for a good while now,but am aware the dreaded flare could turn up at any time,as it has in the past.