I am a 55 year old women who was diagnosed with Crohn's four years ago after a routine colonoscopy (age 51 at time). I had NO symptoms and my doctor was surprised I had none. I didn't want to be treated since I had no symptoms except for inflamed Ileum. Four years later (2014) I began to have a pressure feeling on my right side near hip area that radiated to my back. Eventually after testing, I developed pain near ileum. And after more testing it was determined that Crohn's was the cause. I have never had diarrhea, but had side, abdominal pains, occasional back pain and slight constipation. I was put on prednisone and did well but was taken off because it is not a good long term medication. I started taking Humira in July and was told by my doctor that it was the golden drug for Crohn's. My symptoms have returned although not as severe and I just started Azathioprine today. So now my doctor tells me that many patients need Azathioprine with Humira. My last colonoscopy (last month) showed 80% scarring and 20% inflammation so apparently Humira is not so golden! I was also told I could eat whatever I wanted since my medication was treating my Crohn's. Don't any doctors use diet to help their patients?
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Any luck with diets that help reduce inflammation?
- Thread starter orangesunflower
- Start date
- Location
- Sacramento
Hi oragnesunflower.
I too have mostly stricturing crohns, no real issue with diarrhea. I ended up having a resection about 12 years ago. So, about 20 years of crohns, mainly avoiding skins, nut and raw veggies.
Well about 6 mo ago, I changed my diet dramatically and I feel better on a day to day basis than I have in years. I started the Paleo Diet. It doesn't work for everyone but it sure has for me. I thought it would be hard to stay on,but the results are significant enough that I don't even think about straying. The diet takes time and effort. But I realized I suffered alot because of the inflammation, the diet makes that WAY better, I can now tolerate quite a bit of veggies, well cooked, mostly root veggies. I can eat roasted nuts. I eat lots of meat/fish. Make lots of soups. And can still bake with alternative "flours". I juice daily. I only drink water, fresh juice I've made and usually one alcoholic beverage 5 nights/wk. I will caution you can lose weight on this diet, once the carbs are decreased the weight just comes off, so if you struggle with being to light it might be difficult.
Just my 2 cents worth. If you try it, let me know.
Good luck to you!
I too have mostly stricturing crohns, no real issue with diarrhea. I ended up having a resection about 12 years ago. So, about 20 years of crohns, mainly avoiding skins, nut and raw veggies.
Well about 6 mo ago, I changed my diet dramatically and I feel better on a day to day basis than I have in years. I started the Paleo Diet. It doesn't work for everyone but it sure has for me. I thought it would be hard to stay on,but the results are significant enough that I don't even think about straying. The diet takes time and effort. But I realized I suffered alot because of the inflammation, the diet makes that WAY better, I can now tolerate quite a bit of veggies, well cooked, mostly root veggies. I can eat roasted nuts. I eat lots of meat/fish. Make lots of soups. And can still bake with alternative "flours". I juice daily. I only drink water, fresh juice I've made and usually one alcoholic beverage 5 nights/wk. I will caution you can lose weight on this diet, once the carbs are decreased the weight just comes off, so if you struggle with being to light it might be difficult.
Just my 2 cents worth. If you try it, let me know.
Good luck to you!
You would be surprised how many doctors feel diet has nothing to do with managing our disease.I was told by my surgeon to eat whatever I wanted,don't deprive myself.Many of of us use our diet as a tool to fight CD.We need to find what works for our individual needs.
I find the SCD works well for me.
I find the SCD works well for me.
Thanks. My daughter is on a Paleo diet because she is into Cross fit. She isn't on it 100% but she stays with it pretty much. She told me I should try it after Christmas for my Crohn's and I plan on it. I just can't understand why our doctors don't promote diets instead of pills. I hate to think they may be getting kickbacks from prescribing them.
- Location
- Sacramento
Oragnesunflower,
I think the hard part is that results from diets are so inconsistent. And no real research to back any of it up. But I know for me the results are very real. BUT don't get me wrong, I still have to take all of my Meds: Lialda, Remicade infusions, Omeprazole and Budesonide - along with an assortment of vit/min and other supplements. But, since changing my diet, I don't suffer daily like I have for years.
I think the hard part is that results from diets are so inconsistent. And no real research to back any of it up. But I know for me the results are very real. BUT don't get me wrong, I still have to take all of my Meds: Lialda, Remicade infusions, Omeprazole and Budesonide - along with an assortment of vit/min and other supplements. But, since changing my diet, I don't suffer daily like I have for years.
Even if certain diets did help with Crohn's, doctors aren't to blame if they fail to mention them. In the treatment of any medical condition, the medications, surgeries, any treatment they do recommend has to be officially accepted as a beneficial treatment for that condition by the regulatory bodies of the healthcare system in whatever country the doctor is working in. For a treatment to be officially accepted in conventional medicine, it will have to have undergone extensive research and have high-quality evidence showing its benefits to outweigh its risks.
Diet is approved as a form of treatment for all sorts of conditions within conventional healthcare, as well as a very important tool in preventing ill health - which can easily be seen in the promotion of healthy eating. With Crohn's, doctors will often recommend a low-fibre or low-residue diet, usually only for a limited period, and nutritional supplements are commonly prescribed as well. In more severe cases of Crohn's, doctors may recommend a soft diet, a liquid diet, or even complete bowel rest. They routinely check the nutritional status of Crohn's patients with blood tests, monitor the unintentional weight-loss that can occur with Crohn's, and it's not unusual for people taking prednisone for Crohn's to be advised by their doctors on how to limit unwanted weight-gain through healthy eating. Diet is also often an important part of the advice given to patients after certain kinds of surgery commonly needed in Crohn's, such as removal of significant parts of the intestine or creation of a stoma. There are plenty of dieticians working in conventional healthcare systems who specialise in IBD, and it's doctors who refer patients with Crohn's to these dieticians.
There are a lot of posts on this forum where people say that doctors don't promote diet in the management of Crohn's, but what they really mean is that doctors don't promote the use of alternative diets. Diets that have been proven to be beneficial are promoted all the time. I'm sure there are some doctors who don't emphasise diet anywhere near enough, but there are also doctors who are far more conservative than others when it comes to medication and surgery.
Many of the gastroenterologists I've seen have seen diet as a very important part of treatment. If you feel your doctors are neglecting it, maybe you should try a different doctor, or ask for a referral to a dietician? If you are interested in the Paleo diet, it's probably worth asking your doctors about their opinions of it; you may be able to find a doctor who is encouraging.
Hello, if you do see a dietitian/nutritionist ask for one who is familiar with Crohn's disease, how many patients they have successfully worked with, etc.
Also be sure to keep on top of your b12, d3, iron lab test.
There are diets for CD. Not all work for everyone. It does not mean if they do not work. Diet takes diligence. If you took medication 50% of the time you could not really know if it failed. The same goes for diet
Nutrition is a big part of CD ~ if the guts are inflamed, damaged, scarred, or missing ~ deficiencies have a possibility to happen. We can also have a low amount of beneficial bacteria in our digestive system. Look into probiotics.
Take care and keep searching.
Also be sure to keep on top of your b12, d3, iron lab test.
There are diets for CD. Not all work for everyone. It does not mean if they do not work. Diet takes diligence. If you took medication 50% of the time you could not really know if it failed. The same goes for diet
Nutrition is a big part of CD ~ if the guts are inflamed, damaged, scarred, or missing ~ deficiencies have a possibility to happen. We can also have a low amount of beneficial bacteria in our digestive system. Look into probiotics.
Take care and keep searching.
read breaking the vicious cycle amazon.com.
Also keep in mind diet - is not enough for most people .
Everyone's presentation of crohns is a little different .
The only proven diet is EEN . It can be used in place of steriods for kids and some adults .
Ds drank Peptamen jr (no food ) orally for 9 weeks .
SCD /paleo has been getting more studies recently but most of those are for kids as well
.
Everyone's presentation of crohns is a little different .
The only proven diet is EEN . It can be used in place of steriods for kids and some adults .
Ds drank Peptamen jr (no food ) orally for 9 weeks .
SCD /paleo has been getting more studies recently but most of those are for kids as well
.
DustyKat
Super Moderator
It is not rare to find people with Crohn’s that have no overt symptoms of the disease. The problem with this is that inflammation continues to simmer away unrecognised.
My personal opinion on what you stated in your original post is that the 80% scarring didn’t happen this year but has likely been building in the last 4 years till it reached the point of becoming symptomatic. Whilst it is possible to go into spontaneous remission without treatment it is also just as likely, and I would say more so, for the inflammation to remain.
I am sorry to say that what you will need to bear in mind now is that nothing will treat scar tissue. Medication won’t and neither will diet as you are dealing with hardened inflexible tissue that nothing can penetrate. If you are able to treat the remaining 20% of inflammation and your symptoms subside then you can live with scar tissue but if symptoms persist then surgery will be your only option.
Good luck, I hope you are soon able to find lasting relief. :ghug:
Dusty. xxx
Hi there,
Food has very little to do with Crohns flaring up. There was a time even a piece of toast caused me to have Diah... However, I have found over the years , there are certain foods that will aggravate my tummy. It is a very individual illness re food and meds that work. For me, re food, I have to avoid very rich sauces on food or creamy, cheesy sauce.
You will be aware yourself what is best for you. Eat well though. Best wishes.
:rosette1: :bigwave: :rosette1:
Food has very little to do with Crohns flaring up. There was a time even a piece of toast caused me to have Diah... However, I have found over the years , there are certain foods that will aggravate my tummy. It is a very individual illness re food and meds that work. For me, re food, I have to avoid very rich sauces on food or creamy, cheesy sauce.
You will be aware yourself what is best for you. Eat well though. Best wishes.
:rosette1: :bigwave: :rosette1:
Thanks for responding. You are probably right about the scarring time period. But I had hoped to not have inflamation as I had been taking Humira for over 4 months. Since I did not know about Crohn's disease 4 years ago when I was without symptoms, I was not concerned about it then. Now I know that it can fester without treatment, and I am trying to prevent more scarring.
Would someone tell me what these mean: senior member, forum monitor, etc? Are they being paid or just volunteer? Are senior members long time members or ?
The diet thing is so variable I think that's why many doctors don,t feel it's an issue though at times it obviously is.when things were bad for me salads,fruit and vegetables were bad.i,m now able to eat them only one I find dodgy is melon and coleslaw which I love has to be treated with caution.i,ve read up on a few of the diets mentioned on the site which are so restrictive and boring I admire the people that stick to them I certainly couldn't.
I find it interesting that you were diagnosed but were having few to no symptoms. I have been in that same circle over the years. I was diagnosed over 25 years ago (I am now 55) but during routine testing over the years have been told I have active Crohn's with no symptoms present. I honestly believe that I have less symptoms and less active Crohn's when I do not think about it and it is not part of my day taking medications and worrying about diet. What you concentrate on gets bigger....
The positive diet piece I did concentrate on all these years was to drink a pure 100% Aloe Vera Juice everyday. Also,I always tried to eat at least one meal I knew was good for me (that was fresh and healthy.) Whether that was a fresh fruit salad, greens or juicing, I felt healthier and believed I was helping my gut heal. It became the truth. I have very little scar tissue that is seen in tests - (colonoscopy & endoscopies) and that I attribute to the healing effects of the aloe and fresh food diet. Aloe is a natural food that helps inflammation both topically and internally.
The positive diet piece I did concentrate on all these years was to drink a pure 100% Aloe Vera Juice everyday. Also,I always tried to eat at least one meal I knew was good for me (that was fresh and healthy.) Whether that was a fresh fruit salad, greens or juicing, I felt healthier and believed I was helping my gut heal. It became the truth. I have very little scar tissue that is seen in tests - (colonoscopy & endoscopies) and that I attribute to the healing effects of the aloe and fresh food diet. Aloe is a natural food that helps inflammation both topically and internally.
I will look into Aloe Vera juice. I have never heard of it except in lotions. I have always ate pretty healthy, but I now include a smoothy with non inflamatory fruit and veggies daily too. Thanks!
I had a lot of success with the SCD when I followed it strictly to the T. It kept me healthy for 3 years. However I became pregnant and could no longer eat just the SCD on its own since it did not supply everything my baby needs so lately I have been eating low residue to try and get out of this flare while supplementing with vitamins and liquid replacement meals. My brother has not been officially diagnosed but he has serious stomach issues as well and eats a combo of SCD and the Paleo diet. They are certainly worth a shot but you can't cheat or they won't be effective I find.
