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Crohn’s & PSC: Questions about medication and natural treatments
Digestive Health | Last Active: Jan 30, 2023 | Replies (35)Comment receiving replies
Hi meggie. In an earlier contribution to this group I related that I am taking no meds - just managing my Crohns entirely by diet. I want/need to say that I did not take this route until after I had been on prescribed meds for approximately one year, and changed regimen while slowly cutting back the meds. I didn’t reject the meds because I have no faith in their efficacy - they do work well for most people. But I didn’t fancy the risk of the, possible, long term side effects, which the dietary approach avoids. And, the case studies of the dietary approach did seem to show a high success rate. It certainly has worked for me. What I am saying is, that, for most newly diagnosed patients there is no need to be scared of the prescribed meds, so long as you are closely monitored - they did relieve my symptoms and they gave me time to research Crohns and it’s management. It was when I learned the recurrence rate with patients on meds that I believed there was something missing in the drugs approach - and that was a serious alteration in our diet. I knew that the drugs would always be there if I were to have a relapse so I reckoned the dietary route would be worth trying. I have to say also that I worked with the approval, and in the full knowledge, of my doctor and consultant. There are many patients who have survived well on meds for a long time and ongoing research may well throw up new, less risky, meds, so if you do stick to management with drugs there may be little reason to worry about adverse outcomes. The determining factor will be how you respond to the present meds and how much successful self-management you can find for your personal Crohns. I wish you good luck.
Replies to "Hi meggie. In an earlier contribution to this group I related that I am taking no..."
I am 39 years old and after a CD diagnosis at 16 n seeking relief from pain from the Crohn's I became dependent n addicted to pain medication which had had a negative impact on my life n family. I started taking Pentasa daily steriod predisone when flared n tapering when done n a pain medicine. I have never heard of 10 medications for Crohn's as this may be in excess. I have had countless obstructions flare ups n even a bowel resection surgery. I used to be hospitalized more than I was home. Currently I am seeking new doctor n treatment for Crohn's as I am free from opiate pain medication for 3 yrs now n never wanna go that route again. I'm always here to support fellow CD patient.
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Well said!!! I, too, was terrified of the side effects of taking biologics for Ulcerative Colitis, and resisted until the UC became "fulminant" and I was advised to see a colorectal surgeon. Taking biologics was the last step before a colectomy so I started Entyvio in July 2019. Entyvio has been FDA approved for Crohn's and Ulcerative Colitis and it has a better safety profile than some of the other biologic drugs out there. I am happy to say that I have been in remission about 4 months and I believe it is not just the Entyvio. I started a plant based diet a couple weeks before starting the Entyvio and believe the combination is working! I, too, hope to stop taking it at some point and rely on just the plant based diet. I am not at that point, however, after only being on the biologic since July. I have discussed this with my GI doctor and while he supports the plant based diet, he said that there is no de-escalation data when stopping Entyvio, as it has only been FDA approved since 2014. So, we will revisit that in about a year, depending on how I'm doing and responding to the infusions. All I am doing is the Entyvio and the diet - no steroids, no anti-inflammatory drugs. I take the probiotic VSL#3, calcium, and a good multivitamin. You're right in saying that taking the drugs, while being closely monitored, is less scary. In fact today, I had my scheduled infusion and happened to be next to a woman that had been on Entyvio for 3 years to treat her Crohn's disease and she said it was life changing for her. It was so comforting to meet someone on Entyvio! We talked while having our infusions about the drugs, diet and how these conditions have changed our lives. We are both grateful that we are responding to the same drug, have an excellent GI doc and are feeling better now than we have in years! So, I agree that there absolutely is a place for these drugs in treating IBD, and I also agree that a dietary approach is just as important. My personal long term goal is to rely on the plant based diet and no longer need the drugs. One day at a time....