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Crohn's Disease Forum » Your Story » Success Stories » My remission story. Diet definitely worked for me!


 
02-25-2016, 11:08 AM   #31
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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.
02-25-2016, 11:12 AM   #32
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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...
02-25-2016, 11:14 AM   #33
my little penguin
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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
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02-25-2016, 11:20 AM   #34
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Anyway I was expecting to ruffle some feathers for not having taken the traditional route.
02-25-2016, 11:27 AM   #35
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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
02-25-2016, 11:38 AM   #36
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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.
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Dx May 2014: JSpA
8/2014 ileocecectomy
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PAST MEDS: remicade, oral mtx, humira
02-25-2016, 11:39 AM   #37
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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
02-25-2016, 11:42 AM   #38
smt
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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.
02-25-2016, 11:50 AM   #39
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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.
02-25-2016, 11:52 AM   #40
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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".
02-25-2016, 11:55 AM   #41
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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/
02-25-2016, 12:03 PM   #42
smt
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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.
02-25-2016, 12:10 PM   #43
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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.
02-25-2016, 12:16 PM   #44
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"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)
02-25-2016, 12:19 PM   #45
lenny
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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.
02-25-2016, 12:21 PM   #46
smt
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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)
02-25-2016, 12:22 PM   #47
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They are distinct, as is mentioned here:

http://www.webmd.com/ibd-crohns-dise...crohns-disease
02-25-2016, 12:30 PM   #48
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I think they are doing research into it everyday.

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02-25-2016, 01:00 PM   #49
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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.
02-25-2016, 01:04 PM   #50
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I thank you for the explanation. I wish your son the best.
02-25-2016, 01:20 PM   #51
David
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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.
02-27-2016, 08:26 AM   #52
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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
02-27-2016, 04:29 PM   #53
David
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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?
02-27-2016, 04:30 PM   #54
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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?
Yeah, I don't mind. If it can help anyone then that's great.
08-18-2017, 10:19 AM   #55
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Thanks hope I did not sound rude because I certainly did not mean to.
I hope everyone can to be profited by your advice with the best intentions!
09-05-2017, 09:26 AM   #56
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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.
The meds are part of what flare the disease in the first place. I remember well first anti inflammatory gave me terrible stomachaches and nausea, the doctor gave me another farmaceutical for nausea. It just leads to a snow ball. Im no doctor but have you ever thought that the chemicals on your food might have been what gave you a bowel obstruction?
Our bodies are not able to process the chemicals that are present on the food today. Try organics, read the labels, anything with more then a couple of lines dont touch my skin!

4 years remission. no meds. loads of vitamins. apple cider vinegar. lactose pills for the naughty times. warm lemon water. massages. meditation. yoga.
09-05-2017, 09:36 AM   #57
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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...
yes yes yes!
they dont know what causes! Our usual medicine look only at the organ that has the main inflammation. But all of us here know the inflammation occurs on the entire digestive system.
Dont get me wrong but it seems very stupid now to believe it is ok to fill an inflamed stomach with hard core pills.
So much still to learn about digestive system, didnt they just found out a mash is actually another vital organ?

smoothies personally for me never really worked well, pinaple gives me a strange kind of pain, seems to clean but really have to lye down for some time.
have you tried apple cider vinegar? i take with honey and a bit of water. Make sure it has 'the mather' first thing in the morning. No it will never taste good. but it sure helps incredible specially for energy levels.
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