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30 years ago I was diagnosed with Crohns. This is my first post in 25 years. My Crohns is only in my large intestine. Before my diagnosis I was very sick. It was 5+ years of liquid stools, severe dehydration and crippling pain. I tried Asacol, Remicade, 6MP, sulfasalazine, and a couple years of oral and IV steroids. Once I was off Prednisone I wasn't on any maintenance medicine, mainly due to my lack of understanding that Crohns could still be an active disease, even if symptoms are better.
Around 10 to 15 years ago my symptoms changed. I thought I was somehow cured, well as cured as one can be of IBD. I wasn't in constant severe pain. I still had diarrhea but fewer bathroom accidents, I wasn't as dehydrated.
I was still extremely tired. I just blamed myself for being lazy.
A few months ago I had to have a colonoscopy. My first in 15 years. My esophagus had narrowed so much I often had trouble swallowing and often vomited mucus. A trip to the ER due to 24 hours if throwing up spit and mucus that wouldn't pass through my esophagus meant I had to see a Gastroenterologist. With much certainty, I told the Doctor that while I was diagnosed with Crohns many years earlier, I hadn't had a flare in 10 years or more.
He thought I was misdiagnosed many years ago because I had not had any treatment and no real symptoms (in my opinion) for a decade.
The sole reason I am posting is to beg anyone who has had a diagnosis of IBD to please, PLEASE continue to be monitored by their doctor. I do not have Cancer, I am lucky and grateful. But what I did have - even all the years I thought I was cured, I had very active Crohns inflammation. During the colonoscopy the transverse colon was so narrowed and so inflexible the Doctor could not complete the colonoscopy. The doctors skill and ability were never in question. He is the go to specialist of his multi-doctor/surgeons gastroenterologist practice here in Jacksonville FL.. His diagnosis is severe systemic untreated Chrons disease. I have just finished my 3rd Entyvio infusion.
I will repeat, PLEASE do not assume you are well even if your symptoms have almost disappeared. I am so sad to think of all the years I blamed myself for being tired - telling myself I was lazy because other people were functioning even with major diseases. All the years I may have enjoyed my Grandchildren, the years I could have possible participated hobbies I was just too tired to do. All those years could have possibly been happy, healthy years had I not dreaded the Colonkscopy preparation so bad that I choose to believe if I wasn't having the same horrible symptoms I had 25 years earlier, then I was disease free.
I honestly didn't know that it was very possible to have active IBD with relatively few and not severe symptoms. I thought I was disease free because I could tolerate and excuse the symptoms I did have. I am 61 years old now. And am finally understanding my life could have been vastly different - had I only been under the care of my Gastroenterologist.
Reply posted for Aspringer.
I am in the same boat. Diagnosed 40 yrs ago. I have been on LDN for 10+ years and though I have felt great, it has not kept the inflammation in check. I feel fine! Bur recently I have started having symptoms. I had bloodwork today and scheduled a colonoscopy in 2 weeks. I know I am probably inflamed throughout. I am worried.
Reply posted for Aspringer.
I appreciate you posting this. After diagnosis and soon-to-follow surgery, I've been mostly symptom free. Medication free. Just had a colonoscopy after seven years and there's ulceration. I'm feeling fine and hate the thought of going on immune suppressants...esp during a pandemic...but posts like this help me remember that denial is probably not the best idea in the long run. Appreciate you.
Reply posted for Aspringer.
Thank you for your post. I experienced something similar. I was diagnosed in 1990 due to a blockage in my terminal ileum and was aggressively treated with prednisone for several month since I appeared to be allergic to sulfa-meds. I had inconvenient IBd in subsequent years but went without treatment for 27 years. I was having severe IBD after moving to Africa but it was initially only toilet issues. I had a gastroscopy and colonoscopy and my GI specialist was shocked to confirm it was Crohns, only in one tiny area. I was treated with Pentasa as my sulfa-allergy seemed to have subsided, and I went off the medication when I was feeling better. I did that mainly because it was expensive and hard to get in the country where I lived. However, I started getting terrible indigestion and soon after moved to Japan. The GI specialist I saw there was informed about the CD, but after a partial endoscopy, diagnosed me with functional dyspepsia. When the treatment didn't resolve the issue, he finally referred me to an IBD specialist (this is a big GI specialty in Japan). Eight doctors and final imaging later it turns out I had severe fistulas in my terminal ileum. I had to have surgery and had 30 cm of terminal ileum removed this past November.
I agree with the OP that even if you think there are no issues for decades, assume that any digestive issue is linked to your UCD or CD, and see a specialist to confirm. You might be able to intervene before it gets severe.
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