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Who else has had bowl perforation from OFEV?
Hi
I’m curious as to how long some of you have been on OFEV and if anyone has had bowl perforation. My Dad had been on it for about 3 years until it happened to him and he ended up getting a colostomy. He was 76 and the surgery took all the energy he had and he ended up passing away after a month in the hospital. He did also have prostate cancer which was in remission and was on testosterone replacement medication. He was still very much alive and with it, working around the house, going to the gym and doing the treadmill. He would still be alive today if this didnt happen to him.
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6 Replies
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What is bowl peroration
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Its a rupture in your intestine that is caused by the use of OFEV.
I suspect the company is not truthful on how common this is. It appears everyone who uses the drug has severe diarrhea. I believe long term diarrhea could be wearing down the lining in your intestine and can cause a rupture.
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I think the poster meant BOWEL perforation….
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Please read my blog Serious side Affects of Ofev posted late last year! Sorry fo your loss. I was lucky I guess as my hole was in the small intestine and I didn’t need surgery! Treated with strong antibiotics for two weeks in hospital I was told that had I had surgery I would have lost up to 30% lung capacity.
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That is interesting. What is the relation with the surgery and losing lung capacity?
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My experience with ofev is a lengthy story. As a result, I question why anyone would risk lots of digestive issues and possibly serious and potentially fatal consequences with the hopeful gamble of extending their life by two years. Pulmonologist Fibrosis is a fatal disease so guard the years you do have left.
Within a few months of taking ofev I developed sepsis because the drug caused a perforation in my large intestine. It was repaired with a colonectomy. Recovery from this surgery was challenging and lengthy. I was a patient at the leading respiratory hospital in the United States and thus naively trusted my (now former) pulmonologist. He applied a one size fits all of 2 ofev daily and then did not listen to me when I immediately developed severe digestive problems. He later said that he should never have prescribed this dosage for someone my size. His response to my severe digestive issues was a suggestion that I find a gastroenterologist despite the fact that he could have immediately had me consult with the gastroenterologist in his department.
I am hopeful that my description of my experience will prove useful to others.My advice is if you decide to Try Ofev or any of the experimental new drugs do so with full acceptance of the fact that you might be one of those who suffers from the most severe consequences. Make certain you have a thoughtful pulmonologist who will be responsive to your concerns. Take further note from my experience that there are bad doctors at the leading respiratory hospitals in America. If you experience severe problems, ignore your doctor, find a new one, and stop taking this drug immediately.
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