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13 years on Remicade

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Ulcerative Colitis
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Posted 6/8/2023 10:01 AM (GMT 0)
After 13 years of Remicade, for the first time, I am experiencing digestive problems 4 weeks before my next dose. I have 1 to 2 stools per day, with the morning one being mostly loose and the afternoon one being constipated. Additionally, I have noticed that the stool is narrow. I don't have any pain, cramps, mucus, or blood. My blood work is normal, with a CRP of 0.7 and a calprotectin level of 30. I visited my gastroenterologist, and he wants to perform a colonoscopy in 2 weeks. I'm scared because he mentioned the need to check for anything malignant. The previous colonoscopy I had a year and a half ago was clean. I always have present pseudopolyps that remain as scars from the inflammation 13 years ago. Furthermore, throughout these years, not all of my biopsies during colonoscopies have been clean. Sometimes they would show a mildly irritated mucosa. Also, 4 years ago, I had a polyp removed from my rectum with a low-grade dysplasia. I am terribly afraid that something malignant could have developed in the past year and a half. And one more question. Is it normal to have minor flares wile on long term biologics?
Posted 6/8/2023 1:15 PM (GMT 0)
luna, when was your last colonoscopy? Personally, I think your dr used a very poor choice of words.

Yes, you can have minor set backs while on biologics, none of them are a 100% fail proof. Other than your bm's being off, it sounds like you have done well.

Totally understand your worry after the lousy comment from the dr, but try to keep yourself busy until you get the scope & biopsy reports back.
Posted 6/8/2023 5:57 PM (GMT 0)
I agree with straydog! I hope your scope goes well. Could a mildly irritated mucosa just be from the prep or no?
Posted 6/8/2023 10:38 PM (GMT 0)
Hopefully the next 2 weeks go by quickly for you so you have an answer. If you are mildly flaring your dose/frequency can be increased. If it is a malignancy you will have likely caught it early so that's a plus.

13 years in remission on remicade is great! I hope for that and many more!! I don't have regular stools every day. Usually just 1x a day, but sometimes softer than others, some thinner than others. Last weekend I think I ate something bad and had a weird 3x day and one of those was big pebbles. But since this is unusual for you and you had that mild dysplasia in the past it's good that you contacted your doc.

Gotta love how we describe our poop and we know everyone understands what we are talking about lol

Keep us posted.
Posted 6/9/2023 6:40 AM (GMT 0)
Straydog- My last colonoscopy was year and half ago.
Sara- I think that irritated mucosa is mild flare. I was 13 years in clinical Remission, but not all the time in endoscopic one.

For last 15 days I take Salofalk suppositories at the night, and my morning stool is soft. Could it be from suppositories or they need to form stool?
Posted 6/22/2023 10:36 AM (GMT 0)
I had a colonoscopy yesterday. There is no inflammation, the intestine is clean. The cause of thin stool was internal hemorrhoids. During the first 10 years of Remicade the disease was present, the last 3 in complete remission. Most people give up on biologicals after a year if the intestines are not fully recovered. Remicade gave me 13 years of clinical and 3 years of endoscopic remission and we are moving on.
Posted 6/22/2023 2:21 PM (GMT 0)
Glad the score was clear and hope your remission continues!
Posted 6/24/2023 11:51 AM (GMT 0)
Good news about the scope! Are they doing anything about the hemmies?
Posted 6/24/2023 5:17 PM (GMT 0)
Great news!
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