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DiscussionCrohn’s & PSC: Questions about medication and natural treatments
Digestive Health | Last Active: Jan 30, 2023 | Replies (35)Comment receiving replies
Replies to "Has anyone had intestinal Crohn’s surgery and NOT taken any follow-up meds? Supposedly the meds are..."
I also have UC and have been on the biologic, Entyvio for a few months. While I understand the desire to stop this controversial medication, the terror of another flare keeps me from doing so. For the past two years, I have been on every tier of treatment, from mesalamine to budesonide (oral and rectal) to prednisone to finally the biologic, as each flare became worse and I was in danger of having to have my colon and rectum removed. The UC had become "fulminant." Between the Entyvio and a whole food plant based diet, within the past 3-4 months, I have finally reached clinical remission. When I saw my GI doc 2 weeks ago, he gave me a Rx for more labs (C-reactive protein and Calprotectin) to check blood and stool and also wants to do another colonoscopy to check and biopsy mucosal lining. While I want to wait a few months for that (it has not even been a year) I will have the labs and continue the Entyvio infusions, which he stated, would have to be taken for "life". I said I'd like to revisit that in a year, as these are medications with many side effects. He told me that there is not clinical evidence in "deescalating" this drug, because it has been FDA approved (for Crohn's and Ulcerative Colitis) for only a few years (2014). He also said that when one takes a "drug holiday" the likelihood of another flare is greater and that statistically, the flares become harder to manage. It has only been a few months since I was in the bathroom 12-15 times a day, doubled over with bloody diarrhea, losing a half a pound a day. That in itself keeps me having the infusions every 8 weeks, as prescribed. So, yes, I have absolutely thought "to heck with this medicine" as I'm feeling better than I have in years, but the memories of the hell I've lived with each flare keeps me on it. Maybe I will revisit that thought in a year, while being closely monitored. And maybe there will be enough clinical evidence on deescalating or weaning off of Entyvio. There are so many clinical trials and so many studies on UC and Crohn's, I am hopeful that there will be safer treatments or maybe even a "cure" some day.....
I had two resections, the first in 1978 and the second in 1980. I was on the road to recurrences and hell!
At that time 6 MP, a pill, had the reputation as a prophylactic against recurrence if started right after surgery. I was on 6 MP for 10 years. I stopped taking it in 1990 and did not have a recurrence of the disease to date.
Google 6MP and Dr Daniel Present. Once you know enough about it then you will have some grounding to speak with your MD about it. If your doctor is too young this may not be in his tool bag.
But you at least will know.
Additional thoughts
The chance of needing a second surgery goes up like crazy. So be careful about being super cavalier about this possibility. Life does not get better as your gut gets shorter. There is a period of time when the disease is on fire and that is a good time to be great full for some of these newer drugs. I did 6 MP because all the new drugs didn’t yet exist. As a patient the old option of 6MP besides being very affordable and easy to administer, and while side affects are possible, those never occurred for me. I think the drug saved me. Later I didn’t need it but my disease had gone into remission after many years by then.
I don’t have Chrons, but do have UC. I had surgery to remove my sigmoid and my cecum (along with appendix, Fallopian tube and ovary) because I had a cancerous tumor on my sigmoid. I am absolutely taking my medication and will continue to do so.