• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

My remission story. Diet definitely worked for me!

if you want my full origin story visit this thread:
http://www.crohnsforum.com/showthread.php?t=59847


I warn you, the path I took is definitely not the "recommended" one, I'm just sharing my experience and what worked for me. I'm not a doctor lol.

To start off I am a 31 year old male, I was diagnosed with Crohn's in October 2013. For me the diagnosis was probably the scariest and lowest point of my life. I became depressed after they told me that I was going to have to deal with this for the rest of my life. if you read my original post (Link above) the gastroenterologist I dealt with on my second visit prescribed me Humira, which block TNF and basically suppresses your immune system, and it can have all sorts of side effects. After the horrible bed side manner from the Gastro Dr. I had little to no faith in doctors so I stopped taking Humira against her will. She called me and tried to convince me that it was the only way etc etc. I told her off on the phone and asked my family doctor to find me a new Gastro dr.

The new one she sent me to was much of the same "diet has nothing to do with it" "take these pills" etc. I even convinced my family doctor to let me try low dose naltrexone, which didn't help me at all.

So I know people will probably be upset with this part, I basically convinced my family doctor to keep prescribing me prednisone, which I took 20 to 25mg a day for like a year and a half. At this point I was just looking for something short term and didn't want to move up to other drugs that I knew I would be on forever. And yes I know the long term side effects for prednisone are bad, but in my head the ones for humira and 6mp etc were worse. I couldn't handle the possible loss of fertility as I'd like to have children some day.

So fast forward to like 3 months, I'm taking 5 predisone pills a day just to get through the day, I was taking all sorts of supplements, vitamin d, b-12, omega 3, magnesium, calcium (for prednisone), curcumin, boswelia, berberine. The supplements did make me feel a bit better, but not good enough.

I was staring to feel the long term side effects of the prednisone, weakness was kicking in, which is brutal because I trained 3 times a week. Nothing worse than training 3 times a week but seeing yourself get weaker and weaker every time. I was getting weak due to prednisone, but also due to malabsorption of nutrients to help fuel me. I was staring to get the moon face a bit, and feeling pain in my shins, almost like I could feel the calcium being sucked out of my bones.

I knew I had to do something and do it fast! It was either I would need to have a miracle happen or I'd have to stop taking prednisone and cave in to the doctors "lifetime" drugs. I started desperately searching for answers. I stumbled on to a YouTube channel that featured a girl who claimed to have healed herself and gained remission from crohn's from drinking smoothies. I thought this was probably too good to be true because I had already tried eating healthier, like eating lots of fruits and vegetables, but it had never helped me. I thought well I'll try it, I don't have anything to lose. So I bought a blender and started also doing research about probiotics and prebiotics. I found out that Pineapples and bananas are probiotics that are very healthy for the digestive system. So every morning I started making a smoothie with pineapples, a banana, kale, carrots, broccoli (sometimes), chia seeds, avocado oil, turmeric, berberine, hemp protein powder, orange juice or water. I blend that up, it fills up like 3 tall glasses. I drink those up for breakfast and I'm good and full for 4 to 5 hours.

The first week I started doing this in the morning and still eating "regular food" for dinner and supper. I started feeling much better almost immediately. I would also take a probiotic supplement, I used Align that I got fairly cheap at Costco. I also bought raw organic sauerkraut at a local health food store. I would eat a bit on the side with almost anything just to get some probiotics. I would also drink GT's kombucha like once or twice a week. Just these couple of changes made such a big difference that I started cutting down on the prednisone. At first I went down to 4 pills day, then a week later I was feeling so good I went down to 3, a week later 2. Then like mid week into being on 2 pills a day I forgot them one day, when I realised I hadn't taken them and was feeling fine I decided just to skip that day, then I skipped the next day, it's been like 2 months now and I honestly feel 100%, better than I have felt in years!

I never though that I would be able to go back to being a normal person again and not have to have Crohn's running every aspect of my life. I'm not a fool and I know I'm not "cured", I know that if I went back to my old way and stopped the smoothies and probiotics I'd probably flair up again, but at least I found a way to keep myself in remission drug free. Not only is it drug free, but I'm doing it a healthy way, and instead of negative side effects it's positive ones.

I personally think that I may have been misdiagnosed with crohn's when I actually had leaky gut. In any case hopefully this can help someone who may be in the same position I was, feeling helpless. Try it out, very worse case scenario it doesn't work for you and you move on, best case scenario you could possibly attain remission without drugs.
 
I am glad for the success you have had so far. Don't neglect having yourself checked out by the doctor every so often. You can't always see the effects these diseases have on the inside of your body. Also, everyone is different. At one point , I gave up on Remicade because it was too expensive for me. I ended up with a bowel obstruction. I am not trying to discourage you and I am glad you are doing better.
 
Yeah for me I was never in remission or even feeling remotely well until I started doing this. Like I said I know people get upset when someone says they found a way, but for me being in remission for over 2 months with no drugs is all the proof I need. I will stick to what works for me and never look back.
 
Hi,
I was wondering if you are currently drinking smoothies for all of your meals, or if you are eating other food besides the sauerkraut?

I really really don't want to have to keep taking my meds forever and I diet plays a big part of preventing flare ups.
I'm still trying to figure out what I can and cannot eat. I'm curious to know what works for you.
 
I did for a while, but it's hard for me to keep it up. I was on Tpn for a couples months without food. I used it when I started having eating again, but everything I ate caused some sort of symptom. It was frustrating. I found a handful of things I can eat (mainly squash and poltury) so I've just been sticking to that.

I need to try again though. I want to start adding more food into my diet.
 
Hi,
I was wondering if you are currently drinking smoothies for all of your meals, or if you are eating other food besides the sauerkraut?

I really really don't want to have to keep taking my meds forever and I diet plays a big part of preventing flare ups.
I'm still trying to figure out what I can and cannot eat. I'm curious to know what works for you.
No not for all my meals, just for breakfast. That's all that was necessary for me to keep me regular. I suppose you could do it for more meals if you wanted to. As long as you put some good fats and protein in there you have everything your body needs.

For me the only real food triggers that stood out were eggs, red and processed meat, pretty much anything processed. Excess refined sugar is bad for feeding bad bacteria too, so I'd avoid that until you start feeling better.

Today I'm at a point where as long as I get my smoothie for breakfast I can pretty much eat anything I want for my other meals. Although I do still tend to eat healthy things. I have tested my self with pizza, burgers, all the ones that had been the worse for me, and they don't seem to bother me at all anymore. As for the sauerkraut, I just eat a bit on the side with pretty much anything, I don't sit there and eat a whole meal of just sauerkraut.

Also the reason I said that I may have been misdiagnosed and I think I have leaky gut, is because for me "Crohn's" attacked mainly the Ileum. That's the end of the small intestine where it meets the colon (large intestine). When I looked into leaky gut I seamed to have all the same symptoms, plus leaky gut tends to affect the Ileum. When I started to treat it as leaky gut is when I started getting better. I think this is why whole blended foods and probiotics did so much good. It basically fixed the problem at the source instead of just trying to mask it as drugs do.
 
Also I should mention that it's important not to overeat. Many people eat until they are full, this isn't the best idea for someone with bowel issues. I find that the best way is to eat until you are not hungry anymore then stop. Don't stuff yourself basically. Your appetite will recover as you get better. But in the beginning you're definitely better off eating like 5 small meals daily. Like a meal every 3 hours or so as opposed to 3 big meals daily.
 
So my smoothie recipe is:

-Around 1 cup or a bit more of pineapple chunks (I buy them in large bags frozen at Costco)

-1 ripe banana (preferably with some brown spots on the skin)

-1 medium to large carrot cut up in blendable chunks

-2 very large tablespoons of protein powder (I use hemp, I would recommend using a plant based protein instead of Whey, many people have issues with whey. I used Manitoba harvest hemp pro 70, but it's expensive. After I'm done with this batch I plan on getting just regular vegan plant protein that they have at Costco. Yes I do a lot of shopping at Costco! lol)

-A handful of Kale (You can never have too much Kale lol!)

-2 large tablespoons of Chia seeds (Got them cheap at costco)

-2 tablespoons of Turmeric (you barely taste it I swear lol)

-Like 1 to 1 1/2 cups of water (Sometimes I do half and half water and juice, usually orange or apple.)

-I usually just put some Avocado oil in, quality virgin olive oil would be a good alternative. I don't measure but I'd say I put like 1 to 2 tablespoons.

-Occasionally I'll throw in some blueberries and/or blackberries if I have some, but I'd hold out on the seed heavy berries until you start feeling better.

-I may also throw in some probiotic yogurt in there too.

The important ones are Bananas and Pineapples, big time prebiotics and they are known for being smooth on the digestive tract, especially when well blended. They feed good bacteria (probiotics) and they starve out bad bacteria. Turmeric also has many health benefits and is known for helping with digestion issues and inflammation. I have found that Boswelia extract with 10% or more AKBA is beneficial, especially in the beginning. You can find some cheap on eBay. Curcumin also was a very helpful supplement for me, but now I just turmeric because it's cheaper and I feel great anyway. Kale is just great! It's basically one of the healthiest if not the healthiest leafy green you can get. Just make sure you blend it well, everything should be dissolved, you don't want chunks in there. If you don't blend it enough it goes through you too fast because the fibre is too big. When you blend it well I find it goes through you slower and comes out more well formed, also because you digest it more efficiently you absorb more nutrients out of it. I hope at least some of this helps you out.
 
Early stages though i was sticking mostly to smoothie in the morning, a turkey or chicken sandwich for lunch, chicken noodle soup (preferably homemade) were my go to meals. I never get bored of them so i ate them pretty much every day, snacks were usually crackers with NATURAL peanut butter. (not Kraft or Jiff that are half sugar) Anything that make you excessively gassy should be avoided, as it will cause bloating which is very painful when your intestines are swollen from Crohn's.
 
Thanks for the great tips. I've had mild Crohn's that was diagnosed over four years ago. Today I had a colonoscopy and it's a little worse. Time to take additional action of my own. It only stands to reason that diet would have something to do w/this condition. I got some Nigerian dwarf goats because I know how beneficial goat milk is, and I plan to drink it. I'm also going to try your smoothies. Despite what the doctor says, I'm convinced that stress plays some role, as well. When I'm stressed-especially if tears are involvedy symptoms reappear even if they haven't been there for awhile. Again, thanks for the tips!
 

Lady Organic

Moderator
Staff member
HI, you mention:

'' And yes I know the long term side effects for prednisone are bad, but in my head the ones for humira and 6mp etc were worse. I couldn't handle the possible loss of fertility as I'd like to have children some day.''

where did you read or take this info?... never heard of such a fact...
thanks.
 

my little penguin

Moderator
Staff member
^^^ yeah that
Plenty of people have kids on 6-mp and Mtx you just stop those meds for 3 months prior to trying conception as least for males
Humira and remicade etc do not affect fertility
Uncontrolled crohns can affect fertility sometimes

Second thing
2 months after 1.5 years of higher dose pred isn't exactly a long time.
Have you been followed by a Gi so they can monitor your condition to prevent damage ?
Symptoms do always indicate whether there is really damage going on some folks are asymptomatic but still require surgery

Hopefully you found something that works for you
But please keep your disease in check by having it monitored
 
HI, you mention:

'' And yes I know the long term side effects for prednisone are bad, but in my head the ones for humira and 6mp etc were worse. I couldn't handle the possible loss of fertility as I'd like to have children some day.''

where did you read or take this info?... never heard of such a fact...
thanks.
Well I read on numerous sites that one of the possible side effects for 6-MP is infertility for males. According to one of the site it says percentages are between 10 and 29%. The site says:

" These side effects are less common side effects (occurring in about 10-29%) of patients receiving mercaptopurine:

-Nausea and vomiting
-Poor appetite
-Diarrhea. (rare - usually seen with higher dose)
-Mouth sores (rare - usually seen with higher dose)
-Loss of fertility. Meaning, your ability to conceive or father a child may be affected by mercaptopurine. Discuss this issue with your health care provider.
-Skin rash, dry skin, itching, discoloration of the skin (hyperpigmentation) (uncommon) (see skin reactions).
-Darkening of the skin where previous radiation treatment has been given. (radiation recall - see skin reactions) (rare)."

http://chemocare.com/chemotherapy/drug-info/6-mp.aspx
 
Thanks for the great tips. I've had mild Crohn's that was diagnosed over four years ago. Today I had a colonoscopy and it's a little worse. Time to take additional action of my own. It only stands to reason that diet would have something to do w/this condition. I got some Nigerian dwarf goats because I know how beneficial goat milk is, and I plan to drink it. I'm also going to try your smoothies. Despite what the doctor says, I'm convinced that stress plays some role, as well. When I'm stressed-especially if tears are involvedy symptoms reappear even if they haven't been there for awhile. Again, thanks for the tips!

No problem. I hope some of what I said can help you out!
 
Humira it was the increased risk for Cancer, specifically in Males around my age getting some sort of leukemia if I remember correctly. Cancer and possible loss of fertility were the ones that scared me the most.
 

my little penguin

Moderator
Staff member
Humira by itself does not increase t-cell lymphoma risk in young males
You need to be on both immunosuppressants and biologics

That said you need to look at the numbers to better understand the risk

For kids at least under 14 in the us risk of death by

Riding in a car 1 in 250
Swimming 1 in 1000

Risk of T cell lymphoma for any non Ibd person on the street
2 in 10000

Risk for Ibd folks taking both immunosuppressants plus biologics is
6 in 10000

We take risks everyday but biologics have the potential side effects explained very briefly without looking at the numbers

Add in
Cycling inflammation that isn't stopped or left to simmer also increases your cancer risk

Again glad your diet is working
 
Humira by itself does not increase t-cell lymphoma risk in young males
You need to be on both immunosuppressants and biologics

That said you need to look at the numbers to better understand the risk

For kids at least under 14 in the us risk of death by

Riding in a car 1 in 250
Swimming 1 in 1000

Risk of T cell lymphoma for any non Ibd person on the street
2 in 10000

Risk for Ibd folks taking both immunosuppressants plus biologics is
6 in 10000

We take risks everyday but biologics have the potential side effects explained very briefly without looking at the numbers

Add in
Cycling inflammation that isn't stopped or left to simmer also increases your cancer risk

Again glad your diet is working


I never claimed to be a doctor lol. I probably didn't do enough research on the drugs, but to be honest I'm glad I didn't. Being scared in my particular case (I'm not encouraging anyone to ignore their doctor) made me try alternative methods that ended up working for me.

If I had simply listened to my doctor from the start I would just have went and permanently stayed on humira At that point even if I had tried smoothies I would have probably attributed my remission to the drugs and would not have stopped taking them.

I'm sure some people have it worse than me and need the drugs. I'm just so grateful to be in remission right now, and I'm feeling better and better every day. Life is good! :)

Also if you read my full story, I would like to go see that 2nd gastro dr I had, the one I had a horrible experience with. I'd like to go see her and ask her to explain how I'm in complete sustained remission for months without drugs. She told me "diet plays no part in Crohn's disease" and that I'd "need the drugs forever", and "would most likely need surgery soon", this was like a year and a half ago. I hate her so much... lol
 

my little penguin

Moderator
Staff member
So just for the other reading this I want to make sure I have the facts straight


Meds taken
Steriods oral prednisone at 20-25 mg daily for 1.5 years
Total time off meds about two months .
remission is being attributed your 8 weeks of diet not to the 1.5 years of steriods ???

Has the GP who gave you pred for a 1.5 years
Sent you to an opthamolgist to be monitored for glaucoma/cateracts ?
Glaucoma can occur due to increased eye pressure and is silent .
You wouldn't know till damage is done
My kiddo has to have his eye evaluated often and more often when he was on steriods for 3 -4 months.


Has the GP ordered a dexa scan ?
Bone loss and osteoporosis are also common silent things .
This was also done for my son due to prolonged pred use ( less than 10 mg for 3-4 months )

Has the GP ordered bloodwork to keep tabs on your liver /inflammatory and blood sugar levels ?
Liver complications are common with Ibd and need to be monitored on a regular basis regardless of meds
Inflammatory markers /imaging /scopes to make sure you are in clinical remission and monitor it to act quickly if any inflammation is found .
Clinical remission shows very little signs of inflammation

Diabetes was very common with crohns before other meds were introduced due to prolonged use of prednisone . Please ask your GP to monitor your blood sugar levels .


Diet alone can work for some adults
Scd /paleo
EEN
And crohns exclusive diet with partial en
All have studies showing they have worked for a few

But monitoring disease is key

Tagging Clash
 
Wow 1.5 years on pred that's a really long time. It's a wonder you didn't become pred dependent develop Cushings.

My son is completely asymptomatic no symptoms for a few years now. Still, he required surgery during that time. The absence of symptoms is clinical remission. But it doesn't mean the disease isn't still active. So monitoring is very important, regular lab work, fecal calprotectin stool tests, imaging and scopes.

Deep, stable remission includes clinical remission (labs and absence of symptoms), endoscopic(visually clean scopes) and histological(clean biopsies) with mucosal healing. This combo provides for a longer state of remission with less damage to the GI tract.

The area you explained, the terminal ileum at the ileocecal valve, is the most common site of CD.

If it has been awhile since you've had contact with a GI then it may be a good idea to find one. It's great that you are having no symptoms but it's important to determine if the disease is not active since it can cause silent permanent damage.

Also, the site about 6mp you posted is directed more at those that take 6mp for chemo which is generally much higher doses than those who have CD. Several immunosuppressive meds that are used in chemo are also used in CD but generally at much lower doses.

Good luck in your journey.
 

David

Co-Founder
Staff member
Location
Naples, Florida
But monitoring disease is key
I just wanted to echo this.

People aren't responding like this because they don't believe you, they are responding like this because they care. They just want you to make absolute sure that your inflammation is GONE. Because if it isn't gone and there is chronic inflammation, you're going to one day end up in a world of hurt. And the only real way to make sure the inflammation is gone, is to do so under the care of a good GI. Absence of symptoms does NOT necessarily mean the inflammation is gone.

Keep doing what you're doing, but under the constant care of a GI to make sure the inflammation is GONE.
 
So just for the other reading this I want to make sure I have the facts straight


Meds taken
Steriods oral prednisone at 20-25 mg daily for 1.5 years
Total time off meds about two months .
remission is being attributed your 8 weeks of diet not to the 1.5 years of steriods ???

Has the GP who gave you pred for a 1.5 years
Sent you to an opthamolgist to be monitored for glaucoma/cateracts ?
Glaucoma can occur due to increased eye pressure and is silent .
You wouldn't know till damage is done
My kiddo has to have his eye evaluated often and more often when he was on steriods for 3 -4 months.


Has the GP ordered a dexa scan ?
Bone loss and osteoporosis are also common silent things .
This was also done for my son due to prolonged pred use ( less than 10 mg for 3-4 months )

Has the GP ordered bloodwork to keep tabs on your liver /inflammatory and blood sugar levels ?
Liver complications are common with Ibd and need to be monitored on a regular basis regardless of meds
Inflammatory markers /imaging /scopes to make sure you are in clinical remission and monitor it to act quickly if any inflammation is found .
Clinical remission shows very little signs of inflammation

Diabetes was very common with crohns before other meds were introduced due to prolonged use of prednisone . Please ask your GP to monitor your blood sugar levels .


Diet alone can work for some adults
Scd /paleo
EEN
And crohns exclusive diet with partial en
All have studies showing they have worked for a few

But monitoring disease is key

Tagging Clash

This is where the "i'm not a doctor" and "i'm not saying this is the way to do it" come into play. I'm, just sharing my experience. I also know for sure that my remission is not due to Prednisone. I was taking it for a year and a half, and needed it just to get through the day, but I was getting worse and worse. I would never have been able to skip a day without having extreme cramps etc. The fact that I only started feeling better after I started the smoothies, and that I have been feeling better and better since stopping the prednisone is good enough for me. Look I know for some it's like me poking a hot knife in them when I say I was able to do this without drugs. I'm sure there's a certain level af jealousy or maybe envy towards someone whop was able to do something you could not. I don't know, but I knew people would be like "go see your doctor", or "you're not really better" etc etc. I know I'm better and as long as I keep doing what works for ME then I'm sure I will be fine. Like I said I largely ignored my doctors, they wanted me to do it the "regular" way, I was just too stubborn, and refused to accept that diet plays no part in a digestive disease, which is ludicrous when you think about it.
 
I just wanted to echo this.

People aren't responding like this because they don't believe you, they are responding like this because they care. They just want you to make absolute sure that your inflammation is GONE. Because if it isn't gone and there is chronic inflammation, you're going to one day end up in a world of hurt. And the only real way to make sure the inflammation is gone, is to do so under the care of a good GI. Absence of symptoms does NOT necessarily mean the inflammation is gone.

Keep doing what you're doing, but under the constant care of a GI to make sure the inflammation is GONE.
You know how I know the inflammation is gone? I have no more pain, my stools pass fully formed and without pain, and when I feel my lower right abdomen i used to be able to feel that it was hard and swollen, that is completely gone. The hardness and pain that was there is gone. I never felt this good while I was taking the prednisone pre smoothies. so yeah. Take it for what it is, something that worked for me. i never said this is a cure, I did say that I have to keep my diet in check to keep a sustained remission.
 
I think you are getting the wrong idea it's not a matter of envy. I think it's awesome that you are asymptomatic. But just because you don't have symptoms doesn't mean that you don't have active disease. It doesn't matter what treatment regimen you use, meds, diet, combo or other you have to monitor this disease.

My son had pain, tenderness, mouth ulcers, night fevers, fatigue from CD before treatment. Since treatment he has no symptoms. He is a full time college student with a 30+ hour job. He reacts to nothing he eats. He has been this way for over 2 and a half years. But he still has active inflammation in his bowels. It required surgery 1.5 years ago, when he was having no symptoms. The disease has come back and since progressed still he has no symptoms. We wouldn't even know about the active simmering inflammation if it were not for testing.

It's great that you have achieved the level of relief you have without meds. There are other members here who have done the same and periodically post updates that include results of their monitoring. They do this because no matter the method of treatment you choose the goal is to eliminate inflammation from permanently damaging the bowel. Simmering inflammation can do as much damage as acute severe inflammation over time.

Gis of course want to choose the route that is most scientifically proven but most monitor you no matter the regimen you choose. Just take the time to research GIS and find one you're comfortable with and approach them about monitoring your progress. My son's GI sees a number of kids whose parents have chosen treatment other than meds, mainly diets like SCD, he just monitors the disease to ensure these kids are achieving a level or remission that ensures they have healthy bowel tissue that allows for them to avoid all the permanent damage this disease can wreak.
 
I think you are getting the wrong idea it's not a matter of envy. I think it's awesome that you are asymptomatic. But just because you don't have symptoms doesn't mean that you don't have active disease. It doesn't matter what treatment regimen you use, meds, diet, combo or other you have to monitor this disease.

My son had pain, tenderness, mouth ulcers, night fevers, fatigue from CD before treatment. Since treatment he has no symptoms. He is a full time college student with a 30+ hour job. He reacts to nothing he eats. He has been this way for over 2 and a half years. But he still has active inflammation in his bowels. It required surgery 1.5 years ago, when he was having no symptoms. The disease has come back and since progressed still he has no symptoms. We wouldn't even know about the active simmering inflammation if it were not for testing.

It's great that you have achieved the level of relief you have without meds. There are other members here who have done the same and periodically post updates that include results of their monitoring. They do this because no matter the method of treatment you choose the goal is to eliminate inflammation from permanently damaging the bowel. Simmering inflammation can do as much damage as acute severe inflammation over time.

Gis of course want to choose the route that is most scientifically proven but most monitor you no matter the regimen you choose. Just take the time to research GIS and find one you're comfortable with and approach them about monitoring your progress. My son's GI sees a number of kids whose parents have chosen treatment other than meds, mainly diets like SCD, he just monitors the disease to ensure these kids are achieving a level or remission that ensures they have healthy bowel tissue that allows for them to avoid all the permanent damage this disease can wreak.

I just have a hard time trusting someone who lied to me, especially when I had so much trust in them. Telling me that diet play no part in Crohn's is ridiculous. I felt my doctors didn't care about ME, they just wanted to cut me up of sell me pills. If I start feeling sick again I will go back, until then I have no reason to. This is my decision, if it backfire then that's my prerogative.
 
Let's be real here, of course jealousy or envy play a part , how could it not? You have been battling an "incurable" disease for years, you felt you've tried everything, nothing worked and you have accepted that there's nothing you can do, then along comes this guy (me) who says he is living the good life in remission without drugs, all he did was drink smoothies, who does he think he is? Look I get it, but I said this is what worked for me. I didn't come here to be lectured or told what I need to do next. I simply came here in the hopes of maybe being to help someone else.

Medical science doesn't even know what causes crohn's, so yeah...
 

my little penguin

Moderator
Staff member
There are many good docs and some that are not good fits for the individuals
No issues with your choice of treatment
But concern over lack of monitoring
Things to keep in mind you can live without a large colon
So if you have no symptoms until things are a mess in your large Colon then removal and ostomy is still an option

If you have ongoing Damage in your small intestine
You can not survive without it
Odds of surgery are 75% within 5 years of dx .
Small bowel absorbs all of the nutrients from food to live
If too much of it is damage and needs to be removed then
The options are a lot more grim including becoming tube or tpn dependent
 
I will probably go back for monitoring at some point, but the main reason of my visit will be to throw into their face that I'm feeling better without drugs, and that diet helped me. Something that they told me was NOT POSSIBLE. Yeah I should really trust them when they have no idea what causes crohn's much less how to treat it. To me, if you're a doctor you should know what a diseases is and what the cause of it is before you can hipe to treat it. That's the problem with doctors and crohn's, it's like they have given up on trying to find the underlying cause, and instead try to mask it by downing your immune system (yeah that's a great idea!)l lol) to the point that it's too weak to fight off infection therefor reduces the inflammation that is trying to fight the infection. Instead they should be focusing on what is causing this inflammation, then try to fix it at the source. But there would be no money to be made from permanently curing someone, so the best route is to make you dependent on drugs for life, the pharmaceuticals LOVE that! lol
 
Your assumption that there is envy is predicated on the fact that I fear these scary meds when actuality I fear them not working.

As far as diet, I think it's great for those that can change their diet and achieve deep, stable remission with mucosal healing. There is at least one member here that has a son who has achieved this. It's not a route that has worked with my son not due to efficacy as much as compliancy. It's not a great age to try and meddle with their food fare especially when they are asymptomatic to begin with.

But lastly, I have no reason to be envious of your achievement as you don't know if you have active disease or not. All you know is you aren't experiencing symptoms, no reason for envy of that since my son is asymptomatic as well.

I'm not trying to downgrade what you've accomplished, no symptoms is great but monitoring disease activity beyond lack of symptoms is key with preventing permanent damage.
 
One thing I would also like to stress is that since Crohn's is probably the vaguest disease that we know of (no known cause, can affect anything from mouth to anus) it does affect everyone differently. Some get it severely as kids, some only get it as adults, some get it worse than others etc. So although I do appreciate the concern and people telling me to go see my doctor etc. it does affect everyone differently. So even if this and that happened to you or your son or whatever, it has nothing to do with me.

My only hope was to help someone through diet, whether that by making them feel slightly better, or getting full remission, anything that helps is great right? I will probably go back and get checked up periodically, but I won't go back on medications unless I can't go on without them, regardless of what tests or my doctors say. If I go back on meds it will be on my terms and because I feel it's the only way, until then I will keep on doing what I'm doing. Hopefully it works out for me, but right now I'm just enjoying life, something I hadn't been able to do these last 2 and half years
 

smt

Banned
There are many good docs and some that are not good fits for the individuals
No issues with your choice of treatment
But concern over lack of monitoring
Things to keep in mind you can live without a large colon
So if you have no symptoms until things are a mess in your large Colon then removal and ostomy is still an option

If you have ongoing Damage in your small intestine
You can not survive without it
Odds of surgery are 75% within 5 years of dx .
Small bowel absorbs all of the nutrients from food to live
If too much of it is damage and needs to be removed then
The options are a lot more grim including becoming tube or tpn dependent
I guess you are talking of the "colon" or "large intestine"; not the "large colon".

Would you please specify as to what you mean by the "odds of surgery within 5 years of diagnosis is 75%" , and please quote relevant sources? If you mean "odds for", I understand, but in what circumstances, and I would be glad to know the source.
 
smt the colon and large intestine are the same thing. The word large colon wouldn't be accurate since there is no small colon.

There is the large intestine also called the colon and the small intestine or small bowel. You can live without your colon (large intestine/bowel) but you cannot live without your small bowel/intestine.
 

smt

Banned
smt the colon and large intestine are the same thing. The word large colon wouldn't be accurate since there is no small colon.

There is the large intestine also called the colon and the small intestine or small bowel. You can live without your colon (large intestine/bowel) but you cannot live without your small bowel/intestine.
That is exactly what I meant. The poster had mentioned "large colon". :)
 
Ahh I get what you were saying. I think it's just a word that is used although it may overly descriptive.

I'm not sure which source my little penguin was using for the percentages rates of surgery but here is one you can read theough. I'm sure she'll be along with her source soon.

http://www.ncbi.nlm.nih.gov/books/NBK6934/
 

smt

Banned
Ahh I get what you were saying. I think it's just a word that is used although it may overly descriptive.

I'm not sure which source my little penguin was using for the percentages rates of surgery but here is one you can read theough. I'm sure she'll be along with her source soon.

http://www.ncbi.nlm.nih.gov/books/NBK6934/
I went through that.

"In the National Cooperative Crohn's Disease Study, the probability of surgery was 78% and 90% after 20 and 30 years of disease symptoms, respectively (Mekhjian 1979)."

I did not find the figure of 5 years.
 
My little penguin seems to be referring to the rates of surgery regarding the location the original poster stated his CD was a diagnosis, which was the terminal ileum in the small bowel.

Here is the excerpt about that area and others related to the small bowel and colon

The rate of surgery also appears to be dependent on the anatomic site of disease; rates of surgery with disease duration of 5 years are 50%, 75%, and 50% for jejunoileitis, ileocolitis, and colitis, respectively.
 
Location
San Diego
"Would you please specify as to what you mean by the "odds of surgery within 5 years of diagnosis is 75%" , and please quote relevant sources?"

Those figures can be found here:

http://www.ncbi.nlm.nih.gov/books/NBK6934/

Excerpt from the article:
"The rate of surgery also appears to be dependent on the anatomic site of disease; rates of surgery with disease duration of 5 years are 50%, 75%, and 50% for jejunoileitis, ileocolitis, and colitis, respectively. By 10 years, over 90% of those with ileocolitis undergo surgery while nearly 70% of those with jejunoileitis or colitis require similar intervention (Whelan 1985)."

(Edit: Cross-posted with Clash)
 
Daughter, diagnosed at 24, has been in remission for 10 years, no drugs. She went on the SCD. Son, diagnosed at 16, tried the SCD and it did not work for him. Daughter now lives and eats normally. Son is on Remicade and struggling.
 

smt

Banned
My little penguin seems to be referring to the rates of surgery regarding the location the original poster stated his CD was a diagnosis, which was the terminal ileum in the small bowel.

Here is the excerpt about that area and others related to the small bowel and colon
As far as I understand, he suffers from ileitis, as distinct from ileo-colitis.

"rates of surgery with disease duration of 5 years are 50%, 75%, and 50% for jejunoileitis, ileocolitis, and colitis, respectively." (Excerpt)
 
Unless from his description of location from the link in his first post he is describing the ileocecal valve as being the very end of his small bowel and the swollen area the scope could not pass through.

Ileocolitis

The most common form is ileocolits, which occurs in about 45 percent of people with Crohn's disease. This form of Crohn's disease affects the ileum (lower end of the small intestine) and the colon (large intestine). Symptoms of this type of Crohn's disease can include diarrhea, cramping pain in the lower right or the middle abdomen, and significant weight loss.

In some cases, the diseased areas in the ileum and the colon may be contiguous, affecting the valve that connects the small intestine to the large intestine, called the ileocecal valve.
Source

My son's disease was originally located here just at the ileocecal valve. The GI explained that although he technically had no colonic involvement due to the fact that it was his ileocecal valve that was affected and that was the Junction of small to large bowel it would be ileocolitis. He had surgery to remove his ileocecal valve (and the cecum of the large bowel since you can't joint them back together without cecum removal due to this diameter) 2 years after dx. This surgery is called an ileocecectomy.
 

David

Co-Founder
Staff member
Location
Naples, Florida
You know how I know the inflammation is gone? I have no more pain, my stools pass fully formed and without pain, and when I feel my lower right abdomen i used to be able to feel that it was hard and swollen, that is completely gone. The hardness and pain that was there is gone. I never felt this good while I was taking the prednisone pre smoothies. so yeah. Take it for what it is, something that worked for me. i never said this is a cure, I did say that I have to keep my diet in check to keep a sustained remission.
Unfortunately, that doesn't mean the inflammation is completely gone.

Reduced? Very likely and I'm happy for you! But the goal of everyone with Crohn's disease is to have zero inflammation and mucosal healing. Unfortunately, absence of symptoms does not mean that is the case. And I've seen far too many people think they're doing well only to end up with strictures and the world of hurt that comes with them because they had chronic inflammation causing scarring over time.
 

NiKo_V

Banned
if you want my full origin story visit this thread:



I warn you, the path I took is definitely not the "recommended" one, I'm just sharing my experience and what worked for me. I'm not a doctor lol.

To start off I am a 31 year old male, I was diagnosed with Crohn's in October 2013. For me the diagnosis was probably the scariest and lowest point of my life. I became depressed after they told me that I was going to have to deal with this for the rest of my life. if you read my original post (Link above) the gastroenterologist I dealt with on my second visit prescribed me Humira, which block TNF and basically suppresses your immune system, and it can have all sorts of side effects. After the horrible bed side manner from the Gastro Dr. I had little to no faith in doctors so I stopped taking Humira against her will. She called me and tried to convince me that it was the only way etc etc. I told her off on the phone and asked my family doctor to find me a new Gastro dr.

The new one she sent me to was much of the same "diet has nothing to do with it" "take these pills" etc. I even convinced my family doctor to let me try low dose naltrexone, which didn't help me at all.

So I know people will probably be upset with this part, I basically convinced my family doctor to keep prescribing me prednisone, which I took 20 to 25mg a day for like a year and a half. At this point I was just looking for something short term and didn't want to move up to other drugs that I knew I would be on forever. And yes I know the long term side effects for prednisone are bad, but in my head the ones for humira and 6mp etc were worse. I couldn't handle the possible loss of fertility as I'd like to have children some day.

So fast forward to like 3 months, I'm taking 5 predisone pills a day just to get through the day, I was taking all sorts of supplements, vitamin d, b-12, omega 3, magnesium, calcium (for prednisone), curcumin, boswelia, berberine. The supplements did make me feel a bit better, but not good enough.

I was staring to feel the long term side effects of the prednisone, weakness was kicking in, which is brutal because I trained 3 times a week. Nothing worse than training 3 times a week but seeing yourself get weaker and weaker every time. I was getting weak due to prednisone, but also due to malabsorption of nutrients to help fuel me. I was staring to get the moon face a bit, and feeling pain in my shins, almost like I could feel the calcium being sucked out of my bones.

I knew I had to do something and do it fast! It was either I would need to have a miracle happen or I'd have to stop taking prednisone and cave in to the doctors "lifetime" drugs. I started desperately searching for answers. I stumbled on to a YouTube channel that featured a girl who claimed to have healed herself and gained remission from crohn's from drinking smoothies. I thought this was probably too good to be true because I had already tried eating healthier, like eating lots of fruits and vegetables, but it had never helped me. I thought well I'll try it, I don't have anything to lose. So I bought a blender and started also doing research about probiotics and prebiotics. I found out that Pineapples and bananas are probiotics that are very healthy for the digestive system. So every morning I started making a smoothie with pineapples, a banana, kale, carrots, broccoli (sometimes), chia seeds, avocado oil, turmeric, berberine, hemp protein powder, orange juice or water. I blend that up, it fills up like 3 tall glasses. I drink those up for breakfast and I'm good and full for 4 to 5 hours.

The first week I started doing this in the morning and still eating "regular food" for dinner and supper. I started feeling much better almost immediately. I would also take a probiotic supplement, I used Align that I got fairly cheap at Costco. I also bought raw organic sauerkraut at a local health food store. I would eat a bit on the side with almost anything just to get some probiotics. I would also drink GT's kombucha like once or twice a week. Just these couple of changes made such a big difference that I started cutting down on the prednisone. At first I went down to 4 pills day, then a week later I was feeling so good I went down to 3, a week later 2. Then like mid week into being on 2 pills a day I forgot them one day, when I realised I hadn't taken them and was feeling fine I decided just to skip that day, then I skipped the next day, it's been like 2 months now and I honestly feel 100%, better than I have felt in years!

I never though that I would be able to go back to being a normal person again and not have to have Crohn's running every aspect of my life. I'm not a fool and I know I'm not "cured", I know that if I went back to my old way and stopped the smoothies and probiotics I'd probably flair up again, but at least I found a way to keep myself in remission drug free. Not only is it drug free, but I'm doing it a healthy way, and instead of negative side effects it's positive ones.

I personally think that I may have been misdiagnosed with crohn's when I actually had leaky gut. In any case hopefully this can help someone who may be in the same position I was, feeling helpless. Try it out, very worse case scenario it doesn't work for you and you move on, best case scenario you could possibly attain remission without drugs.
Good work my Friend, With Peace & Love Always

NiKo
 

David

Co-Founder
Staff member
Location
Naples, Florida
JL, have you seen our Juicing Forum by the way? It's under the Diet forum and I'm sure people would love your insight there. In fact, I can copy this thread there if you like?
 

David

Co-Founder
Staff member
Location
Naples, Florida
I've copied this thread here to the Juicing forum as I'm sure some here will appreciate it and have questions for JL.

Thanks again for sharing your experiences JL.
 
Glad to hear your story!!
leaky gut(intestinal permeability) is a symptom of crohn's, you really don't have one without having the other. It's actually part of why inflammatory response is highly active and why the formation of a granuloma is typically to block off bacteria entering through to intestinal wall.

Also pineapple's and bananas are not probiotic's because probiotics are bacteria. maybe you meant to say they are prebiotics which they might be because they contain fiber which bacteria can grow on. Chia seeds contain lots of fiber and likely that is one thing contributing to the benefits of your smoothies.
 
Last edited:
Hey, thank you for posting this. I am on this forum because I am currently looking at dietary options to help with my Crohn's. I am looking for support and success stories. My doctors (rheumatologist and GI) are not interested in listening or helping me to do this. I don't know if I'll ever be able to be medication free but let's face it, any med that you take long term may or has the capability to do damage. There just has to be a better way. I am looking to do a juice reboot when I am in remission for more time (I am not rushing anything).
 
Ive been off medications and treatments for a while. I couldn't take the side effects. I researched and tried many things including juicing. It really helped when I needed to rest my gut. It was a lot of work but It became my normal routine. I'm on a diet just for me now. I feel like I'm doing good for someone with crohns disease. I put the information for what I do on crohnsnhope.com. It may help. Hope hope it does someone
 
I have just moved which included lots of family drama. but through it all I ate my same diet and rested as much as I could. Although I'm real emotional about having to move away, my gut is amazingly doing well. It was hurting when I had to push myself because we were on a deadline. but I've worked at my own pace the rest of the time. I wanted to eat what everyone else ate, but it would set me back. I packed up my meals and stuck to the eating schedule as much as I could. This disease sucks, it does take a lot to take care of things. I'll eat leaves off trees, if the pain goes away. Whatever it takes
 

cmack

Moderator
Staff member
You have my support Jojo. I hope things improve steadily for you now. Moving is always stressful. I have moved so many times I lost count a long time ago, and I don't look forward to the next time either. Good on you for sticking to your diet as best as possible, It probably helped a fair bit. Hang in there.
 
Top