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 Inflammatory Bowel Disease (IBD) 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)

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!

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)

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.

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)

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.

ikc | @ikc | Jan 29, 2023

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

Colleen Young, Connect Director | @colleenyoung | Jan 30, 2023

In reply to @ikc "Are there any vitamins that help with Crohn's disease?" + (show)

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?

hopeseeker22 | @hopeseeker22 | Nov 10 1:59am

My CD was diagnosed in 1985. I can’t think of ten medications for it. I mean 10 different prescriptions. But then is “moderate” whatever that means. Surgery in ‘93 (abdominal abscess) necessitated surgical removal of last 18” of terminal ileum. Patches of inflammation elsewhere in GI track make it hard to absorb needed vitamins, etc. Fatigue sucks. Diarrhea also, were it not for cholestyramine (Questran power). Used to get unbearable cramping episodes at times. They’d come on perhaps every 15 minutes over 6-8 hour time span. I just curled up in a corner and suffered. Or walked in circles. This for years. Then it dawned on me somehow. I realized that what I was eating daily was impeded on its way to large intestine but scaring & stricture resulting from CD. It was a terrible fix for the cramping but worth it. I cut out ALL possible fiber. No more fresh fruit or vegetables or nuts. Good-bye to heaping burgers. Salads? Forget them. Not even canned fruits or vegetables. A banana? You crazy? The risk of insufficient breakdown of such food in the stomach meant that peristalsis would try to force it through a narrowed small intestine, to which the particular intestinal section said “back off”, and shut down. I would go to the sink to vomit up sour bile or anything else. But no help. Had to wait to “rest the bowel” at its own pace. For me, I would not eat for 2 days and only sipped water, the cramping slowing down in frequency and pain degree. So for 35 or so years I’ve had to watch carefully what I eat. Restricts terribly what my enduring wife can fix for dinner. What is it with GI doctors. One I left 6 months ago, after his assessment, planned for me to go right into surgery to cut re-sect in order to remove narrowing. He knows there’s nothing he can do to help, so will get referral gift. I just wanted him to prescribe the Questran which he wanted me to stop. Right! Next guy I saw just wanted to follow the previous guy’s plan. No idea. T

hopeseeker22 | @hopeseeker22 | Nov 10 2:08am

Did you try cholestyramine powder to halt diarrhea? Twice a day mixed in juice. 35 years and no problems. Just read instructions regarding interval of time needed between eating or taking meds and taking the powder. It could absorb properties of meds your taking, like levothyroxine and more. Good luck.

hopeseeker22 | @hopeseeker22 | Nov 20 2:13am

Likely that many meds each day are the problem. This need not be! I’ve had CD since ‘85 but Questran stopped the D. Sorry for her!!

skypledger | @skypledger | Nov 20 5:14pm

In reply to @dval "I also have UC and have been on the biologic, Entyvio for a few months. While..." + (show)

@dval

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.....

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@dval I was on Entyvio for 5 years for Crohn’s Disease, and I had no problem with it. It quit working though and I was hospitalized twice. After taking steroids for 3 months to get CD under control, my doctor started me on Stelara. I was on that drug for almost 2 years, and I came close to dying. Within 17-18 months I had influenza A followed closely by bibasilar bacterial pneumonia then 16 months later pneumonia in the right base of my lung. Entyvio is more gut specific and doesn’t lower immune system as much as other biologics. Stelara nearly killed me.

dval | @dval | Nov 20 6:31pm

In reply to @skypledger "@dval I was on Entyvio for 5 years for Crohn’s Disease, and I had no problem..." + (show)

@skypledger
Several years later, this is where I am… Sadly I developed antibodies to the Entyvio after 13 months of remission and the next 16 months were pure hell!! Five hospitalizations, lots of oral and IV prednisone, Stelara (which made things worse), then finally Remicade. The Remicade worked initially, then not as well, so GI doc did battle with my insurance company to get highest dose approved (despite my weight, which was 99 pounds at the time). I had scheduled a proctocolectomy and two weeks before the scheduled surgery, I stopped bleeding. So for the past 2-3 years, I have been on Remicade (every 4, now 5 weeks) and have been in remission. Therapeutic drug monitoring shows healthy trough level and antibody titers are low. So, as much as I hate being on such a powerful drug, it’s my best choice right now. We’ll see what the future holds with all the new drugs that have been approved over the past few years. I continue the whole food plant based diet, am maintaining a healthy weight (110 lbs) and am hopeful for a cure some day for ALL of us… 🙏🏻. Good luck to you!! ❤️