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

Posted by sandyjr @sandyjr, Nov 12, 2019

My adult daughter who has Crohn’s and PSC is taking about 10 prescription medicines. The PSC seems to be in its early stages and right now her concerns are about the Crohn’s. She was in remission for about 20 years and then last year she had a very bad flare that resulted in surgery. The surgery helped with the Crohn’s symptoms, but her bloodwork is all over the place with too many levels being either high or low. I want her to seek a second opinion but she is resisting that. Is it normal for a Crohn’s patient to be taking this much medicine?

@eden

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.

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

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@billandmartie

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

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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?

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@billandmartie

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

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@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.

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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.

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@sandyjr

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.

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Hi @sandyjr, I moved your question about taking cod liver oil when you have Crohn's and PSC (primary sclerosing cholangitis) to this discussion that you previously started about taking supplements. I did this so you can continue to connect with @lisag03 @dval @guener @meggie1135 @eden @theysayimcrazy and others. I'd also like to bring in @rosemarya @svezir @rodney9999 who have experience with primary sclerosing cholangitis.

Sandy, may I ask why you are interested in cod liver oil for your daughter? What are you hoping it will do?

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@sandyjr

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.

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Hi Sandy. There has been some research to see if cod liver oil would alleviate inflammation and suppress flare-ups. No improvement was found. But, also, no adverse reactions occurred in the subjects. Cod liver oil does, however lubricate the tract and may assist the passage of faecal matter through the intestines. It may also contribute vitamins d and a, and beneficial fatty acids. In all cases of dietary changes you must consult your health professionals. And periodically search the internet for future research results on dietary control of IBD. Good luck.

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