Crohn’s & PSC: Questions about medication and natural treatments

I was diagnosed with Crohn’s disease yesterday. The medications seem very scary and each GI doctor has so many different recommendations. The Crohn’s is active on my small intestine. What medication do mayo doctors recommend? Or what is everyone using

Hi @meggie1135, and welcome to Mayo Clinic Connect. Getting a new diagnosis is scary and I can imagine that this is a lot to take in. Here's some information about Crohn's Disease from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/crohns-disease/diagnosis-treatment/drc-20353309

Which medications are recommended depend on the individual, how they respond to the medication and side effects and doctors will also take into consideration other factors like age and related conditions you may have.

You may have noticed that I moved your message to an already existing discussion on Connect related to the question that you ask. I did this so that you can meet others talking about the medications they are taking for Crohn's. Click VIEW & REPLY in the email notification to read through the past messages.

Meggie, you mention that each GI doctor has so many different recommendations. It sounds like you've been see several specialist before you finally got a diagnosis. What medication is being suggested by the specialist who diagnosed you yesterday?

Hi @meggie1135,

You will find many members here, on Connect, who can certainly appreciate your worry about being on anti-inflammatory drugs. I’d encourage you to view the Gastroenterology & GI surgery Page on Connect - https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ and browse through the videos and posts about Crohn’s disease, by Mayo Clinic experts.
For instance...
– Vedolizumab Safe for Inflammatory Bowel Disease https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/vedolizumab-safe-for-inflammatory-bowel-disease-1/
– Biologic Therapy in Pregnancy Does Not Affect Infant Vaccines https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/biologic-therapy-in-pregnancy-does-not-affect-infant-vaccines/
– FDA Approves Biosimilar to Humira https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/fda-approves-biosimilar-to-humira-1/

With regard to Crohn’s medication, there are a lot of choices out there to consider. Has your doctor discussed the use of a biologic treatment?

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.

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....

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.

My daughter has Crohn's Disease and her specialist's medication does not help. Any experience with homeopathic medicines?

Hi @billandmartie and welcome to Mayo Clinic Connect. I moved your message to this existing discussion about Crohn's disease and how to manage it. I did this so that you could meet other members like @theysayimcrazy @dval @eden @guener @sandyjr. They share how they are managing the disease; some with medication, biologics and/or diet and may have some thoughts about homeopathy. Click VIEW & REPLY in the email notification to read through the past messages.

This article from Mayo Clinic describes different management options including nutrition theray and lifestyle remedies. https://www.mayoclinic.org/diseases-conditions/crohns-disease/diagnosis-treatment/drc-20353309

BillandMartie, Has your daughter's doctor discussed the use of a biologic treatment?

@billandmartie I was diagnosed with Crohn's Disease back in 1998, and I have been on a variety of medications over the years to manage the condition and symptoms. Presently I take the biologic, Humira, with good success, but I also take vitamin B12 and D3 supplements each day. Diet is important to me as well, and it seems that there are a lot of differences between what each individual is able to eat without triggering symptoms. Medications are similarly differentiated for what works for one person vs. another, and it can take trial and error to try to find what works, as frustrating as that can be, and not everyone responds to medication. I am not very versed in homeopathic approaches, but I do know that some people advocate medical marijuana use for managing symptoms with good results.

My daughter has Crohn’s and PSC and has to be careful what otc meds/supplements she takes. Is cod liver oil safe for her to take? Can anyone tell me their experience taking this...good or bad? Is there any medical information pertaining to this? There is a lot of stuff on the internet, but what is factual? That is why I am appealing to people that have had experience with these issues.