I'm not sure anyone offered some diet suggestions to Sharleneh- or anyone else so I will try. I have had Crohn's for over 40 yrs and I am still here so must be doing something quasi-right. In a flair- go as low fiber as you can. Get calories from from sources that your gut doesn't have to process. Instant mashed potatos, jello, puddings and the like. Do this for several days until things quiet down and/or your doc offers something else. Then add back things still concentrating on low fiber. Most cook books or the internet can offer low fiber diets. The Mediterean Diet is not for you. When you are tolerating this is well, you still have to be careful. Don't get overconfidant and trip yourself up. You will find out your trouble spots and they are likely different for everyone. Look at Low Dose Naltrexone and its effect on Crohn's disease. It helps over 80% of us, me included. I've even had a "normal" colonscopy. I have to eat all my veggies well cooked and as a child, I loved raw vegatables. Believe me, your life isn't over. Far from it. Go and do. Treat yourself well.
You will need a dr. to write a script for you and a compounding pharmacy to make it up. It is an off label use at the levels we take it. Start with your primary doctor first and read up on it before hand. There are several good websites devoted to it. I take 2 mg a day , many people take more. Your gastroenterologist may be more adventuresome than mine. Mine agrees that it might help but won't persribe it until it is "protocol". So I rely on my rheumatologist. Good luck!
I'm not sure anyone offered some diet suggestions to Sharleneh- or anyone else so I will try. I have had Crohn's for over 40 yrs and I am still here so must be doing something quasi-right. In a flair- go as low fiber as you can. Get calories from from sources that your gut doesn't have to process. Instant mashed potatos, jello, puddings and the like. Do this for several days until things quiet down and/or your doc offers something else. Then add back things still concentrating on low fiber. Most cook books or the internet can offer low fiber diets. The Mediterean Diet is not for you. When you are tolerating this is well, you still have to be careful. Don't get overconfidant and trip yourself up. You will find out your trouble spots and they are likely different for everyone. Look at Low Dose Naltrexone and its effect on Crohn's disease. It helps over 80% of us, me included. I've even had a "normal" colonscopy. I have to eat all my veggies well cooked and as a child, I loved raw vegatables. Believe me, your life isn't over. Far from it. Go and do. Treat yourself well.
Crohn’s disease is a serious disease. I have UC ulcerative colitis for 20/25 years. Every eight weeks I receive Entyvio infusions which do their job. Before Entyvio I received Remicade infusions. And before Remicade it was pills and steroids. I do eat healthy and have been on a gluten free diet. As you know it’s very difficult having Crohn’s disease. I wish you well
Karen
@genabarrick I've had it for 36 years and I am currently on Rinvoq and Mesalamine for it. I was previously on Remicade for several years for it. Hope you are feeling better.
You will need a dr. to write a script for you and a compounding pharmacy to make it up. It is an off label use at the levels we take it. Start with your primary doctor first and read up on it before hand. There are several good websites devoted to it. I take 2 mg a day , many people take more. Your gastroenterologist may be more adventuresome than mine. Mine agrees that it might help but won't persribe it until it is "protocol". So I rely on my rheumatologist. Good luck!
Thanks so much. I have been prescribed Mazalazine and been on three pills a day for two years. So are you saying you find Naltrexone better than Mazalazine? I don't feel it ever helped me.
I'm quite worried right now that my gastro wants to put me on a Biologic Entyvio before I am weaned off the Steroid Entocourt. I was on Voltaren for many years and did not have any side effects. I only came off it b/c the docs thought is caused my Crohns but since I didn't get better going off of it they now say Voltaren didn't cause it.
I was on a Biologic Remicade many years ago that I became allergic to. I get that they are not all the same but this new one has a side effect of your hair falling out. Three of the four people I read about being on it three had their hail fall out in handfuls and the one had no side effects and is in Remission.
Am I wrong in feeling a Biologic would be my last resort right now? So appreciate your feedback suetex.
Crohn’s disease is a serious disease. I have UC ulcerative colitis for 20/25 years. Every eight weeks I receive Entyvio infusions which do their job. Before Entyvio I received Remicade infusions. And before Remicade it was pills and steroids. I do eat healthy and have been on a gluten free diet. As you know it’s very difficult having Crohn’s disease. I wish you well
Karen
@irisjolie thank you for your helpful information on Entyvio. I too was on Remicade and had an allergic reaction to it so am reluctant to try Entyvio. Has your hair fallen out from these infusions?
Are you on the Mediterranean diet?
I hope this helps you to.
Remicade after two years or so made muscles hurt really bad. But before all the muscle hurts Remicade was really good. I could eat ice cream and most dairy and other stuff without any issues. Remicade pretty much stopped the bleeding and most other problems of UC.
Then I was put on Entyvio infusions. What I liked best re Entyvio is the infusion was about 45 mins to finish and the Remicade was 2 hours if I remember correctly. I have never felt that Entyvio worked well with me. I do watch my diet. I’ve been on a gluten free diet and eat lots of fruits and vegetables. It’s rare that I would eat meat. Turkey, chicken, fish are my foods. I do not eat foods from restaurants ever. I would like to out but don’t nor do I cheat although there is temptation.
You asked if my hair was falling out. No, Entyvio is not strong like Remicade. Also I’m not on the Mediterranean diet but it’s appears to be a great diet.
Take Care
Karen
Thanks so much. I have been prescribed Mazalazine and been on three pills a day for two years. So are you saying you find Naltrexone better than Mazalazine? I don't feel it ever helped me.
I'm quite worried right now that my gastro wants to put me on a Biologic Entyvio before I am weaned off the Steroid Entocourt. I was on Voltaren for many years and did not have any side effects. I only came off it b/c the docs thought is caused my Crohns but since I didn't get better going off of it they now say Voltaren didn't cause it.
I was on a Biologic Remicade many years ago that I became allergic to. I get that they are not all the same but this new one has a side effect of your hair falling out. Three of the four people I read about being on it three had their hail fall out in handfuls and the one had no side effects and is in Remission.
Am I wrong in feeling a Biologic would be my last resort right now? So appreciate your feedback suetex.
I stayed on my Azsulfadine and added LDN. Just one capsul a day at bedtime so hardly noticed. Where it helped me the most it seemed was my small intesine which was full of small ulcers (looked like blisters) that Entacort barely help.. It took maybe 6-8 weeks to completely heal and I tapered off entacort. I stayed on the azsulfadine until my rheummy (in '23)suggested I try going off of it so I did. No symptoms. I was eating very carefully so tried experimenting with some of my favorites that I had been avoiding. Results so far: raw celery with veins removed - yes, carrot and rasin salad- no. Still no ASA or anything but LDN for my gut. Still eliminate high fiber foods or stay near a bathroom. No real pain, just goes straight through me in a short time.
LDN is worth reading about and finding a doc who is familiar with it. I had to bully my current rheummy to perscribe it but the first two rheummies were fine with it. Exceptance varies in the medical community.
I have had no experience with biologics of any sort so can't speak to that. I know diclofenic (Voltaren) is an Nsaid that is very hard on your gut. It would give you problems eventually no matter what. Best wishes.
I stayed on my Azsulfadine and added LDN. Just one capsul a day at bedtime so hardly noticed. Where it helped me the most it seemed was my small intesine which was full of small ulcers (looked like blisters) that Entacort barely help.. It took maybe 6-8 weeks to completely heal and I tapered off entacort. I stayed on the azsulfadine until my rheummy (in '23)suggested I try going off of it so I did. No symptoms. I was eating very carefully so tried experimenting with some of my favorites that I had been avoiding. Results so far: raw celery with veins removed - yes, carrot and rasin salad- no. Still no ASA or anything but LDN for my gut. Still eliminate high fiber foods or stay near a bathroom. No real pain, just goes straight through me in a short time.
LDN is worth reading about and finding a doc who is familiar with it. I had to bully my current rheummy to perscribe it but the first two rheummies were fine with it. Exceptance varies in the medical community.
I have had no experience with biologics of any sort so can't speak to that. I know diclofenic (Voltaren) is an Nsaid that is very hard on your gut. It would give you problems eventually no matter what. Best wishes.
Good morning Suetex,
Thanks for sharing your journey.
Was just part of a zoom conference with two docs and a 20 yr Crohns volunteer at Crohns Canada Foundation preaching the Mediterranean Diet. Why do you think that diet is not for me? I feel you as a 40yr survivor knows more than anyone what works! Slso, what is LDN?
I stayed on my Azsulfadine and added LDN. Just one capsul a day at bedtime so hardly noticed. Where it helped me the most it seemed was my small intesine which was full of small ulcers (looked like blisters) that Entacort barely help.. It took maybe 6-8 weeks to completely heal and I tapered off entacort. I stayed on the azsulfadine until my rheummy (in '23)suggested I try going off of it so I did. No symptoms. I was eating very carefully so tried experimenting with some of my favorites that I had been avoiding. Results so far: raw celery with veins removed - yes, carrot and rasin salad- no. Still no ASA or anything but LDN for my gut. Still eliminate high fiber foods or stay near a bathroom. No real pain, just goes straight through me in a short time.
LDN is worth reading about and finding a doc who is familiar with it. I had to bully my current rheummy to perscribe it but the first two rheummies were fine with it. Exceptance varies in the medical community.
I have had no experience with biologics of any sort so can't speak to that. I know diclofenic (Voltaren) is an Nsaid that is very hard on your gut. It would give you problems eventually no matter what. Best wishes.
I have just printed off the Low-fibre diet do's and don'ts on the Mayo Clinic website. I looked up LDN and remember you telling me about Naltrexone. These foods even appeal to me more than the foods on the Mediterranean Diet.
The only risk listed is that if you are on this diet longterm you might not be getting all your nutritional needs. How do you deal with this part.
I so appreciate your time. When I asked my doctor he has no idea what diet to suggest and to just do research. Just said don't eat any rich foods!!!!
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@suetex Thank you so much Suetex. Excellent info. Regarding the Naltrexone when do you take it and how much? Do i need to run this by my doc?
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1 ReactionYou will need a dr. to write a script for you and a compounding pharmacy to make it up. It is an off label use at the levels we take it. Start with your primary doctor first and read up on it before hand. There are several good websites devoted to it. I take 2 mg a day , many people take more. Your gastroenterologist may be more adventuresome than mine. Mine agrees that it might help but won't persribe it until it is "protocol". So I rely on my rheumatologist. Good luck!
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Like -
Helpful -
Hug
1 ReactionCrohn’s disease is a serious disease. I have UC ulcerative colitis for 20/25 years. Every eight weeks I receive Entyvio infusions which do their job. Before Entyvio I received Remicade infusions. And before Remicade it was pills and steroids. I do eat healthy and have been on a gluten free diet. As you know it’s very difficult having Crohn’s disease. I wish you well
Karen
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1 Reaction@genabarrick I've had it for 36 years and I am currently on Rinvoq and Mesalamine for it. I was previously on Remicade for several years for it. Hope you are feeling better.
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Helpful -
Hug
1 ReactionThanks so much. I have been prescribed Mazalazine and been on three pills a day for two years. So are you saying you find Naltrexone better than Mazalazine? I don't feel it ever helped me.
I'm quite worried right now that my gastro wants to put me on a Biologic Entyvio before I am weaned off the Steroid Entocourt. I was on Voltaren for many years and did not have any side effects. I only came off it b/c the docs thought is caused my Crohns but since I didn't get better going off of it they now say Voltaren didn't cause it.
I was on a Biologic Remicade many years ago that I became allergic to. I get that they are not all the same but this new one has a side effect of your hair falling out. Three of the four people I read about being on it three had their hail fall out in handfuls and the one had no side effects and is in Remission.
Am I wrong in feeling a Biologic would be my last resort right now? So appreciate your feedback suetex.
@irisjolie thank you for your helpful information on Entyvio. I too was on Remicade and had an allergic reaction to it so am reluctant to try Entyvio. Has your hair fallen out from these infusions?
Are you on the Mediterranean diet?
I hope this helps you to.
Remicade after two years or so made muscles hurt really bad. But before all the muscle hurts Remicade was really good. I could eat ice cream and most dairy and other stuff without any issues. Remicade pretty much stopped the bleeding and most other problems of UC.
Then I was put on Entyvio infusions. What I liked best re Entyvio is the infusion was about 45 mins to finish and the Remicade was 2 hours if I remember correctly. I have never felt that Entyvio worked well with me. I do watch my diet. I’ve been on a gluten free diet and eat lots of fruits and vegetables. It’s rare that I would eat meat. Turkey, chicken, fish are my foods. I do not eat foods from restaurants ever. I would like to out but don’t nor do I cheat although there is temptation.
You asked if my hair was falling out. No, Entyvio is not strong like Remicade. Also I’m not on the Mediterranean diet but it’s appears to be a great diet.
Take Care
Karen
I stayed on my Azsulfadine and added LDN. Just one capsul a day at bedtime so hardly noticed. Where it helped me the most it seemed was my small intesine which was full of small ulcers (looked like blisters) that Entacort barely help.. It took maybe 6-8 weeks to completely heal and I tapered off entacort. I stayed on the azsulfadine until my rheummy (in '23)suggested I try going off of it so I did. No symptoms. I was eating very carefully so tried experimenting with some of my favorites that I had been avoiding. Results so far: raw celery with veins removed - yes, carrot and rasin salad- no. Still no ASA or anything but LDN for my gut. Still eliminate high fiber foods or stay near a bathroom. No real pain, just goes straight through me in a short time.
LDN is worth reading about and finding a doc who is familiar with it. I had to bully my current rheummy to perscribe it but the first two rheummies were fine with it. Exceptance varies in the medical community.
I have had no experience with biologics of any sort so can't speak to that. I know diclofenic (Voltaren) is an Nsaid that is very hard on your gut. It would give you problems eventually no matter what. Best wishes.
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Like -
Helpful -
Hug
1 ReactionGood morning Suetex,
Thanks for sharing your journey.
Was just part of a zoom conference with two docs and a 20 yr Crohns volunteer at Crohns Canada Foundation preaching the Mediterranean Diet. Why do you think that diet is not for me? I feel you as a 40yr survivor knows more than anyone what works! Slso, what is LDN?
Hi again,
I have just printed off the Low-fibre diet do's and don'ts on the Mayo Clinic website. I looked up LDN and remember you telling me about Naltrexone. These foods even appeal to me more than the foods on the Mediterranean Diet.
The only risk listed is that if you are on this diet longterm you might not be getting all your nutritional needs. How do you deal with this part.
I so appreciate your time. When I asked my doctor he has no idea what diet to suggest and to just do research. Just said don't eat any rich foods!!!!