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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?

Interested in more discussions like this? Go to the Digestive Health Support Group.

Lisa Stubert | @lstubert | Aug 11, 2022
In reply to @amandaa "Hi @lstubert, welcome. I wanted to honor your request for connecting with other people, so I..." + (show)
@amandaa

Hi @lstubert, welcome. I wanted to honor your request for connecting with other people, so I moved your post to Crohn’s & PSC: Questions about medication and natural treatments: https://connect.mayoclinic.org/discussion/does-everyone-being-treated-for-crohns-take-a-ton-of-medicine/

Here is another discussion you might like to read about the same topic. Has anyone done intermittent fasting for PSC/Crohn’s/Diabetes?: https://connect.mayoclinic.org/discussion/has-anyone-done-intermittent-fasting-for-psccrohnsdiabetes/

Are you currently having symptoms from the PSC?

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Yes I am actively having symptoms and will have my first ERCP next Friday. I did cruise the comments had come across this info. I am checking out the PSC Partners website too to learn more about PSC. This diagnosis really threw me but just one more thing to deal with due to Chrohn's. Sigh.

Thank you!

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david2022 | @david2022 | Aug 12, 2022
In reply to @sandyjr "Has anyone had intestinal Crohn’s surgery and NOT taken any follow-up meds? Supposedly the meds are..." + (show)
@sandyjr

Has anyone had intestinal Crohn’s surgery and NOT taken any follow-up meds? Supposedly the meds are to get control of the disease and prevent further flares. These meds also have additional effects on the body which may not be good. Has anyone just said “ to heck with it” and not taken the meds? If so, what has been the result?

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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.

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david2022 | @david2022 | Aug 12, 2022
In reply to @sandyjr "Has anyone had intestinal Crohn’s surgery and NOT taken any follow-up meds? Supposedly the meds are..." + (show)
@sandyjr

Has anyone had intestinal Crohn’s surgery and NOT taken any follow-up meds? Supposedly the meds are to get control of the disease and prevent further flares. These meds also have additional effects on the body which may not be good. Has anyone just said “ to heck with it” and not taken the meds? If so, what has been the result?

Jump to this post

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.

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ikc | @ikc | Jan 29, 2023

Are there any vitamins that help with Crohn's disease?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 30, 2023
In reply to @ikc "Are there any vitamins that help with Crohn's disease?" + (show)
@ikc

Are there any vitamins that help with Crohn's disease?

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Welcome @ikc. I moved your question about Crohn's disease and vitamins to this existing discussion in the Digestive Health Support Group:
- Crohn’s & PSC: Questions about medication and natural treatments: https://connect.mayoclinic.org/discussion/does-everyone-being-treated-for-crohns-take-a-ton-of-medicine/

I did this so you can read some of the previous posts and connect with members like @sandyjr @eden @lstubert @david2022 @awanay and more.

@ikc, what treatments, if any, have you had to help manage Crohn's? How are you doing?

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