Crohn’s Disease - Qs about medications

Posted by sandyjr @sandyjr, Tue, Nov 12 3:28am

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?

@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 don’t have Chrons, but do have UC. I had surgery to remove my sigmoid and my cecum (along with appendix, Fallopian tube and ovary) because I had a cancerous tumor on my sigmoid. I am absolutely taking my medication and will continue to do so.

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@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 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 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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Are you experiencing any side effects from Entyvio? I’m curious about it and wonder if it can help me. I am not sure what my UC status is. I was considered moderate at my second to last colonoscopy and then they discovered a tumor on my sigmoid. I’m waiting for another colonoscopy so just taking mesalamine. I think they have now raised the bar on what they consider remission. They look at your mucousa lining to make that determination, which is good because that is where colon cancer starts
But I’m curious about the side effects of Entyvio

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@lisag03

Are you experiencing any side effects from Entyvio? I’m curious about it and wonder if it can help me. I am not sure what my UC status is. I was considered moderate at my second to last colonoscopy and then they discovered a tumor on my sigmoid. I’m waiting for another colonoscopy so just taking mesalamine. I think they have now raised the bar on what they consider remission. They look at your mucousa lining to make that determination, which is good because that is where colon cancer starts
But I’m curious about the side effects of Entyvio

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The side effects I’m experiencing are mainly sinus congestion and fatigue (primarily the days I have the infusions). There are other side effects that people experience and it does affect your immune system. That’s the biggest concern for me!! Mesalamine worked for me for the couple months I was on it, until I developed drug induced pancreatitis. I was told to discontinue it immediately and within 13 days, started bleeding again and went into the worst flare I have ever had. Within weeks the diagnosis was “fulminant” and despite taking oral and rectal budesonide and then prednisone, the flare continued. The biologics were my last hope before surgery, so I reluctantly agreed to start the Entyvio. It was my last shot at something other than a colectomy. I was terrified and desperate, but it was all I had left to try… The doctors and the company that makes it (Takeda) are very clear about the many potential side effects and you are monitored closely at the infusion center at the hospital during each infusion. I’ve been on it since July and I am finally in remission. I’m cautiously optimistic that I will stay in remission and that I won’t have some of the really bad side effects that are possible while taking Entyvio. I also started a plant based diet a week before starting Entyvio and believe that is helping too. If I had been able to maintain remission on the mesalamine, I would not have started biologics. There are many more risks. If you’re in clinical remission on mesalamine, you may not have to advance to the next tier of treatment! I wish you luck and remission!!

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@dval

The side effects I’m experiencing are mainly sinus congestion and fatigue (primarily the days I have the infusions). There are other side effects that people experience and it does affect your immune system. That’s the biggest concern for me!! Mesalamine worked for me for the couple months I was on it, until I developed drug induced pancreatitis. I was told to discontinue it immediately and within 13 days, started bleeding again and went into the worst flare I have ever had. Within weeks the diagnosis was “fulminant” and despite taking oral and rectal budesonide and then prednisone, the flare continued. The biologics were my last hope before surgery, so I reluctantly agreed to start the Entyvio. It was my last shot at something other than a colectomy. I was terrified and desperate, but it was all I had left to try… The doctors and the company that makes it (Takeda) are very clear about the many potential side effects and you are monitored closely at the infusion center at the hospital during each infusion. I’ve been on it since July and I am finally in remission. I’m cautiously optimistic that I will stay in remission and that I won’t have some of the really bad side effects that are possible while taking Entyvio. I also started a plant based diet a week before starting Entyvio and believe that is helping too. If I had been able to maintain remission on the mesalamine, I would not have started biologics. There are many more risks. If you’re in clinical remission on mesalamine, you may not have to advance to the next tier of treatment! I wish you luck and remission!!

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Thank you so much. I don’t think I’ve ever been classified as clinical remission but I was okay with my current state. I haven’t had a UC flare since 2012, and managed my disease pretty well. I always refused steroids because I had been on them for too long. But the cancer took me by surprise. So I guess when I’m able to have a scope, we will decide. I did do remicaid when I was with another doctor and hated it

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@lisag03

Thank you so much. I don’t think I’ve ever been classified as clinical remission but I was okay with my current state. I haven’t had a UC flare since 2012, and managed my disease pretty well. I always refused steroids because I had been on them for too long. But the cancer took me by surprise. So I guess when I’m able to have a scope, we will decide. I did do remicaid when I was with another doctor and hated it

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The fact that you haven’t had a UC flare for that many years is fantastic!! You are indeed managing well! I’m so sorry you had to deal with the cancer in addition to the UC, and I’m sure that since they caught it early and you’re so aware, you will beat this too! Again, the very best of luck, good health and continued remission! 🤞🙏❤️

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At the point of diagnosis, and for any sudden flares, it is common for Crohn’s patients to be on anti-inflammatory meds. However it is quite possible for many (possibly all) patients to largely control Crohns via diet. You and your daughter should read Prof John Hunters book – Inflammatory Bowel Disease. And Elaine Gottschalls book – Breaking The Vicious Cycle. I am a Crohns patient and have had my symptoms entirely controlled via diet for 13 years by following the dietary recommendations in these books. I take no meds. It is not a quick fix though and requires self-discipline in following a strict diet. Science indicates that, almost certainly, our problems lie in an overgrowth of opportunistic gut bacteria. Sugars and particular carbohydrates are the enemy since they feed these bacteria. These books offer appropriate dietary measures. Excess stomach acid, SIBO, leaky gut, nutrient deficiencies and dehydration can also be implicated.

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Hi, @sandyjr – I would also like to invite some others on Connect who've talked about Crohn's to join this conversation. They may have some thoughts about whether taking 10 prescriptions a day is a lot to them, like @eden @merpreb @pen2015 @cak71 @bentley33.

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@lisalucier – I wish that I could comment but I have no history with Crohn's. Taking 10 meds a day may seem a lot but many people take even more. I suggest a visit with the daughter to the doctor and /or nutritionist. Thank you for inviting me int this conversation. I take at least 10 plus inhalers and including suppliments.
@sandyjr– luck with your daughter's health.

Liked by Lisa Lucier

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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 have Crohn's Colitis, and I currently am only on Humira. I quit taking Mesalamine because it was just giving me diarrhea. I have never been on more than 3 medications at any one time for Crohn's, so ten sounds like a lot to me. I have had CD since 1998.

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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

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@meggie1135

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

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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?

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@meggie1135

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

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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?

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@meggie1135

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

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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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