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Posted 10/10/2013 5:11 PM (GMT 0)
NiceCupOfTea
I'm so very Sorry to hear how crohns has caused so much suffering for you and many others.
Yes I joined a crohns forum last year when I was having issues that wasn't going away, to see what others were doing, but got very depressed when I saw some of their experiences.
What actually help in my case was drinking Aloe Vera Juice (Whole Leaf) twice a day. The dull ache on my right side went away after about 4 days of drinking Aloe. I had this ache for months after drinking Instant Coffee for a few weeks. I don't drink any form of coffee any more.
I had stopped drinking Aloe for a while when I was in a "remission" or just feeling better. Aloe was the only thing different that I added at the time of the ache. Also the ache was from a stricture because every time food was passing through it ached.

Here is an interesting post about Aloe Vera from another forum.
it has mixed results for some but remember you have to abstain from foods that irritate the crohns & not sure if those people were watching diet:

http://www.crohnsforum.com/showthread.php?t=37574

Jen77
As far as vitamins, you have to use a strong version or take extra since people with crohns will not absorb all the nutrients from the food we eat. (damaged intestine, diarrhea etc.)
I tried many different multis before finding one that gives me energy.
"GNC Ultra Mega Gold with iron" I pay $16-$20 for 45 day supply.
The probiotic & Fish Oil needs to be Enteric Coated.
Enteric coating ensures that it is not dissolved by stomach acids until it reaches the small intestine.
The Fish oil study used time released or enteric coated fish oil.

I have not been in remission for 20 years Jen. The symptoms are minimal because of selective diet & The Aloe and vitamins etc.
I have had full blown flareups over the past 20 years because I got complacent and started eating unhealthy foods.
The Aloe Vera is what helped me to get better in every case & remove the pain.

Please don't be doubtful if you have not tried the exact same thing that I have. It took me many years to just find a good multi vitamin that actually works & Its still effective after 10 yrs.

NO prescription medications have ever brought me into remission. 1990 was the last time I used Meds. and they all made me sick so I quickly discontinued use of meds.

I have no affiliation with the book or their authors. I just read it and benefited from it. If it wasn't for those authors I would be lost and at the mercy of the medical system only, with no other options. The Crohn's section is only about 7 pages long so you don't have to read a long book to get info. The author is a Medical Doctor and is co written by his late wife a Certified Nutritionist.

Take Care
Posted 10/11/2013 1:04 AM (GMT 0)
So it sounds like you are still having some symptoms. Do you have regular colonoscopies? How did they come out? Blood work? I know I've had years where I thought I was in remission and just having a small amount of symptoms where the damage was still being done inside. I've learned I can't always trust how I'm feeling when it comes to the simmering going inside. I've gone to the doctor thinking I was wasting my time, only to find my sed rate through the roof. That was when I was only taking mild medications to control my Crohn's (Asacol and rounds of pred when needed).

Problem is I've heard it all when it comes to natural routes. Everyone claims they work. All kinds of different ways. But none really show a lot of promise in studies, including Aloe Vera juice. In fact I'm heard Aloe Vera juice can have a laxative effect, which is the last thing some of us need. All vitamins and supplements can come with side effects and have risks. So we have to be careful with what we put in our bodies, especially while self treating like this.

I started Humira in June, and I have seen improvements. I'm not where I want to be yet though. So I need some tweaking. But I have been helped from medications in the past. They've saved my life and brought me out of some very painful flares that no aloe vera could have had alone. So I'm glad you found something that helps you. But this just goes to show we are all different.
Posted 10/11/2013 12:34 PM (GMT 0)
Hi Bullz, I have read all the posts here and yes though I follow a very restricted diet, I still flare up. I boycotted veggies and fruits all together except for potatoes and bananas two years ago and I still have pain. For me this pain can be 3 or 4 days/week which is a blessing for me if I compare it to the pain I used to have 24/7 for the last 6 years. I've exhausted all possible meds out there except for the biologics. The thing that gave me relief was Entocort w of course the toll of lurking high blood sugar in the horizon (couldn't undergo tests cause of the nasty cold). Pred before it caused me reversible high blood pressure which went down to normal after stopping it. Needless to say I developed other complications coz of pred like severe eye dryness. I was aware of all these complications and I can't blame my GI alone. It's a matter of choice; I knew I might have problems and I accepted them. Food adjustments couldn't control my pain. Hadn't it been for the meds and experimenting w them, I would have ended up having this horrible pain. I haven't been absent from work for a month, which is for me and my boss, a breakthrough. I refer this back to the combo of Imuran, Entocort and Pentasa. This doesn't mean that I don't have pain. Right now as I am typing I'm having some pain in my abdomen but I can attribute this to the cold I have but still pain is bearable; I don't need to rush to my GI or hospital. Experimenting w this disease for years and my GI's recent decision that I have to try to experiment w things and see how things go on, made things different for me. Till recently, I used to be taken to the ER coz of dehydration after having 20 bms. My GI told me to start taking Imodium right away after the 3rd bowel movement and to repeat it when necessary and not to reach the state of dehydration. Also, when I feel I'm flaring up, I keep a bland diet; and drink Ensure. You will learn by time what works best for you but try to be concentrating well and drawing relationships between what you eat and your flare ups.
Hope you feel better :)
Posted 10/11/2013 3:28 PM (GMT 0)
Thanks no pain,

I can understand getting depressed at other people's experiences. I do a lot, and sometimes I think that adds to my cynicism and weariness.

As far as aloe vera is concerned, I tried it for a month when I was new to Crohn's. A fellow student of mine at the time was a salesperson for an aloe vera company and persuaded me to give it a go. Made no difference whatsoever; admittedly I hadn't changed my diet.

I think if the natural approach is going to work at all, it seems like you need to catch the Crohn's while it is quiescient or very mild (either early onset Crohn's or in remission after surgery). It also seems like the single most important factor is changing your diet. Supplements and probiotics don't do a lot on their own, but a strict diet might.

Once the disease gets an established foothold, it's much harder for diet (or even meds) to get you into remission.

I also agree 100% with Jen about the possibility of having few symptoms while the Crohn's is getting worse behind the scenes. That is exactly what happened to me. For five years I had almost no symptoms, apart from diarrhoea 2-3x a day. I wasn't on any meds 'cos I couldn't tolerate any of the mesalamine meds the docs prescribed. However, I didn't really care either because I wasn't in pain, I wasn't ill, and the diarrhoea didn't interfere with my life.

The feeling well ended in 2005/6. A 2007 colonoscopy showed, in its words, severe and extensive Crohn's disease. Now I don't know what my 2000 scope showed (the one which got me my diagnosis), but for most of the time I thought I was doing just fine, the Crohn's must have been silently ruining my colon.

That said, if you've gone 20 years without an acute flare-up, you are probably out of the woods as far as underlying Crohn's damage is concerned. But I still wouldn't take it for granted. If you haven't had any tests for a few years, it might not be a bad idea to get some done to check there is no permanent damage to your intestines.

Oh, and one last thing. I almost envy those people who have the discipline to follow a strict diet. Once upon a time, my reluctance to change my diet would have been because I didn't want to give up the nice things of life: bread, desserts, meals out, etc. Now I feel like I couldn't give a rat's arse what I eat, but I don't have the energy or motivation to think of recipes, shop for the ingredients and prepare them. I'm not a bad cook either, but I almost feel like I just don't want to know food anymore. Even though I can eat.
Posted 10/11/2013 11:06 PM (GMT 0)
NiceCupOfTea
Yes I did start on the natural stuff early about a month after I was diagnosed. The food thing was easy for me because I got so sick after drinking milk, coffee, store bought concentrated orange juice, ice cream, etc. The pain would last for days afterwards.

I also agree with Jen77 about the disease simmering, and also your experiences. I think it is always ready to come out of its dormancy at any time if you ingest something that causes the reaction inside. I basically have had similar experiences as yours. Last year when I was drinking instant decaf coffee, I really did not have any major problems, but as I continued to drink coffee it eventually caused a stricture and that's when I started feeling it.
Over the years I have forced myself to only eat certain foods that I can tolerate & I cheat on occasion.

Jen77
I have not had any tests for many years, simply because I didn't like the experiences I had the last time. The barium enema was terrible, painful and other things too...
I'm also afraid to find out what they might want to suggest as treatments etc.
Also my condition is somewhat stabilized with minor to mild symptoms of crohns.
I have gone up to about 1 year without any noticable symptoms.

I probably would benefit from some of the other tests you mentioned.
Maybe a blood test to see if I'm lacking in any way.
I still have issues with energy at the end of the work week and many of my weekends are unproductive trying to get some rest for the next week or just plain worn out from battling with the illness at times. On this plan I have not had major pain in many years.
But I know I am not in remission because I still have to watch everything I do or else I pay the price. This is how its been for me the past 20 yrs or so.

When I added the"Critical Care 50 billion" probiotics my bowel movements improved
Posted 10/13/2013 6:49 AM (GMT 0)
I don't blame you for hating the tests. I had a bad experience with a colonoscopy, I woke up during it. But my new GI made sure I was put out (propofol). So the prep wasn't fun, but the scope was a piece of cake. After my first scope I was told I had "mild Crohn's". So imagine to my surprise after the scope I had in June that after 7 years I now had severe Crohn's. From just having a small area effected in my small intestines, I now had my entire colon inflamed, ulcerated, and oozing. Was not a pretty sight! Many of those years I was just having "mild" symptoms.

So unfortunately it's pretty impossible to say for sure that your self treatment is really working to keep your Crohn's under control. It could still be doing a lot of damage in there for all you know. I can't tell you the stories I've heard where people ended up in emergency surgery because they didn't realize the damage that was going on in there. Or perhaps NCOT is right, that since it's been so long and you haven't had any major flares, maybe you have a more mild form of the disease. Hard to say without the tests.

As scary as the tests and treatments go, I'm more scared of the damage it can be doing to my insides. Treating the symptoms is just half the battle. I can take Imodium and get by with more mild symptoms (did that for years). But it doesn't put out the fire inside, I learned that the hard way. Best of luck to you no pain.

Post Edited (Jen77) : 10/13/2013 1:02:08 AM (GMT-6)

Posted 10/13/2013 1:43 PM (GMT 0)
I noe this is not relevant, but I badly wanted to tell... I had my colonoscopy a few months ago.. I admit I was hell nervous cuz I knew this was a big test but I was also looking forward to it O:) Though they drugged me, I didnt sleep nd when I cud, watched my colon being monitored on the screen.. My GI explained various locations of my colon.. All I needed were painkillers, otherwise I didnt dislike my colonoscopy even a bit... Though I understand it necessarily doesnt have to interest everyone...
Posted 10/23/2013 7:45 PM (GMT 0)
Jen77
I know that the diet & natural supplements are working because I have never felt the need to go to the emergency room like the first time. The severe pain I had back then has not come back like that. Because of the terrible pain I had after drinking lots of SODA, I dont drink soda anymore. maybe once in a blue moon I will have the restaurant iced down version.

Also I know when my bowel movements are good or not. When I was younger I had terrible gas which I don't have anymore because of the food I stay away from. I was also very malnourished and skinny. I have been able to maintain a fairly healthy weight for my height for many years.
This disease does not go away for me, I have had some good months up to a year, where I forget about it, but its always ready to cause me torment if I don't watch my diet.

I really give much of the credit to the Aloe juice or fresh aloe gel.
Thanks for the regards.
Posted 10/23/2013 11:37 PM (GMT 0)
It is interesting I found this thread about "cure". My boss' wife actually has CD, as do I, and she is working on a new vaccine type thing for Crohns...she is excited about it. Hopefully there will be a cure for many diseases in the next 20-30 years...but with the amount of toxins and crap on the food these days...new diseases will come..which is very discouraging but unfortunately it is the world we live in.
God bless all, hope everyone is doing ok.
Posted 11/1/2013 8:05 PM (GMT 0)
Here is an update on my current condition with Crohn’s:
After I posted on 10/23 I visited a relative that evening and ate a bowl of soup there. I immediately started to have discomfort and a very full feeling. From my past experience I know this is the starting of a flare up. (I get these about once a year)
I also had been eating some hot chips that my son asked me to buy that week and chocolate covered raisins & a doughnut someone gave me (I normally do not eat these). All of this led to a full blown flare up. I started having a burning sensation on my right lower abdomen that was leading into some slight pain. I also was trying a pea protein powder drink after weights exercise, but will stop because it has Carageenan & I noticed it made my symptoms worse.
The Free form Amino Acids are better since they don't need to be broken down by the digestive tract. They are the building blocks for cell regrowth (intestinal walls).

I quickly went into my Crohn’s health mode of eating and supplements.
1) Drinking 12-16 ounces (tall glass) of Aloe Vera juice whole leaf, 3 times a day, morning, lunch & evening. (I work)
2) I increased these supplements to 2 caps, 2x times a day from 1x day : N-Acetyl Glucosamine, Quercetin, Boswellia, 50 billion probiotic.
3) I continued on twice a day : Fish oil 1000mg, Multi- Vitamin, Lecithin.
4) Added Free Form Amino acid powder under tongue 2x day

Foods for at least the first 3-4 days of flare. I eat all of these during the course of the day but in small amounts. :
1) Baby Food in jars, Organic (lunch and dinner)
2) Boiled : Beets organic, Sweet Potatoes, yams. (dinner and lunch)
3) Bananas ripe, Peeled Apples, persimmon, pomegranate (lunch)
4) Carrot juice small cup (4-6 ozs.) 2x day
5) Egg white only, on whole grain tortilla with sharp Cheddar cheese for break fast.
6) Green tea 3-4 times a day
7) Ginseng for energy if needed

After 4- days of this I am noticeably feeling better . The burning sensation and mild pain went away after 4 days this time around. I also do some light exercises during flares. The only reason why I motivate myself to do this is because it works every time. I have been doing this for over 20 years & I don’t use prescription medications, because they have caused me problems. The NAG & Quercetin I recently added last year & have got along well without them until now. If I drink any juice it must have no high fructose corn syrup & the daily water requirement is covered in the tea mostly. I was reminded how important diet is for my condition, again the hard way ! It is somewhat difficult to stick to but it always works for me.
Hopefully this information might help someone.
Posted 11/1/2013 9:11 PM (GMT 0)
I have heard many mixed things about this disease and calming it down. There was one person who told me to try this "aloe" powder stuff that was mixed with different things that is supposed to help with healing. She thought that this would help calm down my disease, as she said it did for someone else she knew. I tried it for a couple months. It was expensive stuff, $120 for a container... so I couldn't afford to do this too long without seeing results. After the couple months of trying, it made no difference. At this same time, I would try to go without dairy, go without bread, see if it is related to any of those things... again... didn't help me one bit.

Right now, I am on Tysabri. This medicine has made me the best I have been in years. I am off all other medicines, with the only things I am on are vitamins (as it is easy for me to get vitamin deficient) and environmental allergy meds. It works like Remicade worked for me when it did work. I had tried all those other injectible meds without any luck.

Here is the thing about bringing up the controlling the disease with diet thing. I have people in my life who care about me who I work with and talk with, who hate to see me sick... so they study up on it to see what helps. They read all this stuff about diet... and think "well he eats at McDonalds, no wonder he is sick". I had ended up in the hospital, and they blamed the McDonalds I ate and said it was my fault I ended up in the hospital. I then have to spend A LOT of time explaining to them that I could go without McDonalds for a week, and I still have the same reaction to eating stuff that is easy for me to eat like grilled chicken. It does not matter.

If there is one diet I stick to, it is the "not too unhealthy, not too healthy" diet, or a low fiber/low residue diet, as it is easier to digest. It is no salads, it also isn't much greasy items. If I go to McDonalds, I rarely get hashbrowns or fries. Usually just a burger or a sausage biscuit, and if I have extra money... a grilled chicken sandwich or chicken mcnuggets. Burger king actually is a little easier for me since it is charbroiled and even less greasy. KFC actually is one of the best places I can eat out at... with a nice white chicken breast, mashed potatoes, and mac n cheese. I have never ended up in the bathroom after eating a good meal there. Never has the diet determined my flare up though...

Again, everyone's situation is different. No_pain, I am glad your aloe/diet plan is working well. My Tysabri is working well for me. I guess I would try to keep it as a "every person's situation is different" thing... I just HATE having to explain in detail how my specific disease acts... and it takes many days for me to explain my case for every person after they read and think it is a diet controlled thing.....

Just my own disease/my two cents on this... really hope there is a cure down the road as well...

 

Posted 11/1/2013 10:24 PM (GMT 0)
JakeB
You are absolutely right everyone is different genetically physically, etc.
One thing I have noticed over these past 23 years is that the disease can actually be active even if you think it is not.
Some of the lighter symptoms for me are low energy levels, feeling like I haven't slept even though I did. Easy to catch flu. The Crohns affects the intestinal tract which is where most of our immune system exists, so there can be many different symptoms.
Aloe Vera must absolutely be used in a liquid form only, to have any benefits. The polysacharrides and natural chemicals are destroyed once its dried. I have used the fresh Gel for many years and recently the Whole leaf Aloe juice. That product you tried was someones way of trying to fill their pockets. Traditionally Aloe is used in a gel or juice form and it is very affordable, not a powder that cost an arm and a leg. I pay around $20 for a gallon from Lily of the desert.
Also Mcdonalds is probably one of the worst foods a human being can eat in my opinion.
I get nausea after eating anything from Mcdonalds, hamburgers, fish sandwich. Their sausage has causes me to flare and have pain. I have not eaten at Mcdonalds in over 15 years because of it.
I have also had a number of flareups right after eating KFC chicken, so I only rarely eat KFC anymore. They used to have a grilled version that may have been ok with me but I still don't want to risk it. I heard that they supposedly are using low transfat oil now, but who knows.
With me the diet is definitely the triggering mechanism into a flare up. I had almost 2 yrs without a flare one time, but usually I have a flare once a year.
The middle of the road diet you mentioned is what I also did but found better health leaning towards more natural foods (fruits organic veggies, fish, chicken)

I am glad to hear that you found Tysabri that works for you. Are you able to eat anything while on it ? Do you notice any side effect ?
Posted 11/2/2013 4:51 AM (GMT 0)
Interestingly enough, McDonalds doesn't upset my stomach... unless I eat the stuff that typically ends up being greasier (like fries)... that makes me nauseated, and I usually stay away from that. I guess I never really had a huge issue with foods per say with my disease. I have had a very active, very harsh disease... but can never control it by foods. I actually feel quite sick if I have any salad (I quite like myself a french side salad with pasta), or any raw veggies. I do like broccoli, but it has to be boiled first, and I usually top it with a little bit of cheese for extra flavor. I think the reason the raw stuff doesn't sit well with me because it is making my intestines work harder, which I have learned to give it the easiest food that it can digest to make my life easier.

Once I explain this to people who don't understand my disease and try to be "experts", they seem to understand what I can eat, why I can eat it, etc. I just am a little sour towards the "diet" thing with people as I was once told I shouldn't bring any fast food or "junk food" into work so my coworkers couldn't see it, because they thought I wasn't taking care of myself. In all reality, the "junk food" tended to be easier for me to eat (such as pretzel sticks, combos, etc), which allow me to get the extra calories I need throughout the day. But, of course, they didn't understand it and treated me like dirt because they thought I ended up in the hospital because of that...when in reality, I have learned that many of my hospitalizations for Crohn's weren't necessarily directly related, but a result of the disease (such as MAJOR dehydration, or illnesses like pneumonia).

I will always end up with a diarrhea symptom, due to my ileum being taken out... so fluids aren't getting absorbed like they should. So really, I will never be "normal", but I have accepted this. Usually my flairs are directly related to things that stress me out, such as arguments I had with someone, or someone upsetting me in some way, or an "unknown" bill of some sort. Somewhat tied to anxiety as well, in which I am in the bathroom every hour. But some days, when I am totally relaxed (which I always try to remain in a state of relaxation for this reason), I may only go to the bathroom 3-4 times in a day which is my normal.

Tysabri has been wonderful. I have gained about 15 lbs since being on it, to the highest weight I have ever been in my life (which is great... I have been underweight for many many years). This is one way I know it is working. Energy wise, I am still trying to get that figured out... but I am getting supplements to help with that. In regards to food, I can eat anything I can tolerate on it... my appetite has been fine. I generally find my food intake has to be a variety of "small" portions. I can never eat a lot of one specific item without getting full quick. But if I have many different items in front of me, I can usually eat a good amount of food at one sitting. An example of my food intake today (which I felt pretty good today, very calm and my crohn's seemed to follow): Sausage Biscuit from McDonalds, left over taco meat that I made into tacos for lunch, and chicken stir fry for dinner. I randomly had munched some cheese nips and pretzel sticks throughout the day as well. This type of food is my normal intake that tends to go pretty well for me. Yes, after my main meals... I tend to need to use the bathroom, but I find that to be typical of me normally due to the ileum issue/pushes food through as I take more in.

Side effects on Tysabri... not really anything besides being tired the day of. Often times, I when I get the infusion, my stomach does quite a bit of gurgling, but I attribute that to the fluids my body is getting at that time. Otherwise it has been great. I was on Remicade for 5 years without any issues either (I built up antibodies to it though, so it stopped working). This is the first time a monotherapy has actually worked since my Remicade days.

They do blood work every infusion (so every month) that gets my doctors my inflammation markers. It is actually quite cool, as I can see the results online a day after they are drawn... so I can see the exact number assigned to them, and what the normal ranges are. Ever since starting Tysabri, they have dropped to normal from slightly elevated/higher. A couple times when I was sick, they were higher, but otherwise have been great. It really makes me happy to see results like that..

Granted, I haven't had the disease as long as you, but I have had it since 1998... been through the ringer, many different medicines, many different food changes, to figure out exactly what works for me. This seems to be the key at the moment... until the new medicine that is like Tysabri comes out next year... which is supposed to be safer... really can't wait. I go to a research/academic hospital (actually been on a couple studies there), where the IBD doctors are really up on the latest and greatest, and have been part of many papers regarding Crohn's and UC. I am really lucky to have them in my back yard.

Sorry for my long response, just wanted to explain where I am coming from and my thought process behind my personal disease. I feel like some may be like you, no_pain... which in my opinion, you are the lucky ones... and some like I... who rely on these medicines sadly... it is such an interesting disease in how it works... just hope things keep improving for the sake of all of us!

Post Edited (JakeB) : 11/1/2013 10:55:32 PM (GMT-6)

Posted 11/4/2013 7:05 PM (GMT 0)
JakeB
I appreciate hearing about your experiences with battling Crohn's.
I also have to watch how I handle stress, your experiences are much like mine, but I dont get D from it. I think because I try my best to adhere to a strict natural only food diet, that I may be benefiting by it somehow. Possibly my symptoms are minimized by it. I still deal with a number of milder symptoms that come and go. This is a very difficult disease to deal with especially when you have to eat every day to maintain health. Everything we eat passes through the intestines, so why not make an effort to put foods that are known to be beneficial for good health.

This is a excerpt form this link from a Dr. Hoffman: http://www.drhoffman.com/page.cfm/170

" Why should inflammatory bowel diseases be on the upswing? There are many theories but conventional medicine has not yet satisfactorily answered the question. Many gastroenterologists choose not to believe it, but dietary factors clearly play a role. For example, Swedish researchers have found that people who eat at fast food restaurants regularly and who eat too much sugar may increase their risk of Crohn's disease. Researchers from the Karolinska Institute in Stockholm interviewed 152 people with Crohn's disease, 145 with ulcerative colitis and 305 healthy people about their eating habits in the five previous years. Those who ate fast food at least two times a week were 3.4 times more likely to develop Crohn's disease and 3.9 times more likely to develop ulcerative colitis, according to a recent issue of the Journal of Epidemiology. Fast foods in the Swedish study consisted of hamburger or hot dogs with mustard and catchup plus fresh fries or cream potatoes and soft drinks. It was also noted that those who ate more than 55 grams of sugar per day were 2.6 times more likely to develop Crohn's disease. Not surprisingly, an American expert in gastroenterology attempted to refute this study. He contended that IBD sufferers probably started eating the high sugar/high calorie foods in an effort to gain weight and chose foods low in fiber to reduce their diarrhea. "

Here is another post on this site about fast food and different people's experience which is very similar to mine:
https://www.healingwell.com/community/default.aspx?f=38&m=1078149

This recent flare I had last week was directly related to the things I was eating. I had deviated from my "normal" eating habits. I became complacent and was pushing the envelope.

Once I started back on my "flare foods" that I listed above. I started to feel better as every day passed.

That is really great that you are involved in that study. Hopefully you and others can benefit from that research. Did you have flares when you were on Remicade.
Once again glad to hear that the Tysabri is working for you.
Posted 11/4/2013 11:38 PM (GMT 0)
I'm so tired of Crohn's forever being blamed on diet. Even if there is a subset of Crohn's patients who can control their disease entirely through diet alone, for many of them diet makes no difference. I went on an elemental liquid diet, about as severe a diet as you can get, and I still managed to feel even worse on it.

Researchers seriously need to crack this disease and find out who responds to diet and who doesn't, so the ones who don't respond to diet aren't forever being made to feel guilty for their food choices by people who know nothing about Crohn's.
Posted 11/5/2013 2:51 AM (GMT 0)
I agree NCOT. I personally think some people have a lot of food sensitivities and allergies, and that is probably what is bothering them more then their Crohn's when they eat them. Especially when you have people that don't go through any kind of testing to see the status of their disease, and just depend on how food makes them feel. That's very little to go on in the way any scientific proof, and certainly not enough to make me feel bad about my food choices.

We are all different, but in no way will I ever be convinced that this disease is just about food. It's just not that simple, and I actually get offended by those who say that. I don't have a food allergy or sensitivity. I have a chronic serious medical condition that isn't effected by what I eat.
Posted 11/5/2013 5:25 AM (GMT 0)
I have food allergies, and I can tell the difference between allergy upset and crohns upset. Allergy upset will give me a fever, make me nauseated/vomit, close up my throat most of the way, rumble through my guts at high speed and come out like a poop-hydrant, but as soon as it's out of my body, i immediately feel better. Very distinct from my crohn's symptoms.

Allergy upsets obviously only happen with foods i'm allergic to, whereas crohns upsets happen pretty much all the time. however, i can control which upsets i get by eating certain foods. for example, greens (and sometimes dairy- comes and goes, but never as bad as greens) will give me extremely painful gas and bloating, to the point where i get constipated and can't eat. meat protein gives me the firebutt, and makes everything smell worse. nuts dislike being digested, and my teeth suck, so i don't eat much of that sort of protein. grease makes my guts bleed, so most fried food is a big no-no. some foods, like caffeine, peppers (not black pepper, which isn't actually a pepper), and onion chunks all set off bleeds and diarrhea and, except for caffeine, gas. My bland safe food, which right now is pasta with olive oil and parmesan (previously pasta with mozarella), produces a nice muted blend of symptoms that is easily manageable: least severe gas, no bleeding, no heat. each food also has what i think of as a "diarrhea quotient" which rates how rapidly it causes urgency despite my loperamide. my safe food rates very low here, while meat protein rates fairly high, with dairy currently being second only to grease and outright triggers. sometimes dairy drops off the radar and becomes acceptable again. Very strange.

I agree it's not just about food, but it can sometimes play a role in managing one's symptoms. Especially when combined with medication. However... not for everyone. I think this is partly because of the incredible nature of the digestive system: it is extremely rare to find any two people with the exact same mix of digestive flora, which have a HUGE impact on how your body digests various foods. Even just the ratios of each type of bacteria can have an impact. And that's just ONE of THOUSANDS of ways each human body is different.

The digestive system alone is so incredibly complex, and astonishingly individualized, that it never surprises me to see things succeed/fail on an individual basis. I hope Crohn's is cured in my lifetime; I'd love to read about what they finally figure out. I'm betting on an array of cures.
Posted 11/5/2013 6:27 AM (GMT 0)
I think certain foods can aggravate a flare, but bring one on? I don't know, I just don't buy it I guess. When I'm in remission I can eat whatever I want. If I'm in a flare, full of ulcers, then yes certain foods may aggravate it further.

Then of course there is IBS, which seems to be more bothered by food. I have a friend that gets diarrhea from certain foods. So far she only has IBS and some food allergy problems.

Just doesn't make much sense to me that I could be in remission and eat certain foods for a week and suddenly have inflammation and ulceration form... That doesn't compute for me. If it's already there and I'm eating salad or nuts I can see then there be a problem. Makes more sense to me to be having certain foods not agree with you and cause stomach upset (like IBS) then actually CAUSING Crohn's flares. I know we're all different, but from what I've read about what they do know about the disease, doesn't seem like causes flares anymore then stress causes them.

Post Edited (Jen77) : 11/4/2013 11:32:07 PM (GMT-7)

Posted 11/5/2013 8:01 AM (GMT 0)
That's a good point. I should clarify that when I say "feeling okay" i mean that literally: i'm okay. not good, but not particularly bad. I've never been in remission and i'm almost always in a state of mild flare. sometimes it gets worse, but "mild flare" is about as good as i ever get. fortunately, loperamide has slowed things down enough that i can actually enjoy those "good" days. Really wish I'd started it sooner.

so my foods are almost certainly aggravating an existing flare. Again, though, I'd love to read through the ultimate findings on Crohn's. My mom says that in retrospect I've had signs of Crohn's since I was born, but I didn't start experiencing major symptoms until I was 16. By then I'd ingested all sorts of foods that are now triggers, plus exposure to chemicals and whatnot. Also at 16, a few months before i started getting sick, my lifestyle changed from moderately active to somewhat sedentary. And I started getting sick over thanksgiving break, after our dinner. So it could have been any number of these possible triggers, or something else entirely, or an accumulation/combination, or just a ticking time bomb in my genes.

Or maybe aliens messed something up poking around in my butt. Who knows! The whole thing fascinates me. It's one of the reasons I liked Dr. Sanborn so much; he was pleasant with normal care, but he REALLY lit up when he got talking about the research he was doing, and his enthusiasm was encouraging. I hope he still sees patients for studies over in California; he's a great doctor.
Posted 11/8/2013 5:06 AM (GMT 0)
I am learning more about my digestive system in the past two years than I have in a while. I knew a lot about the diseases, the treatments, etc. But in regards to what is actually Crohn's or separate from Crohn's... I am starting to realize what can cause issues....

I have been "lactose sensitive" many years... though drinking a glass of milk or having an ice cream cone doesn't make me sick. Though I made this realization today that eating cheese off of a block, or a frozen pizza (with a decent amount of cheese on top) makes me sick... very sick... and it has gotten worse lately than it ever has been. I get nauseous and very bad D... wakes me up in the middle of the night, and worse. Though after it clears through my system, I feel fine again. This is how I realize that while I have food sensitivities, this isn't a Crohn's flare due to the food I ate, but rather a reaction to a food that my body doesn't like. I am not sure why I am having this issue with block cheese/cheese on a pizza, but at least I am figuring out things I need to stay away from... again, not due to my Crohn's but a food sensitivity....

no_pain... Remicade was a miracle drug... that was the last time I ever had formed stools (since my surgery when they took out the ileum, I don't think that is possible anymore). I felt wonderful on it, and was so very upset when it stopped working for me (which was a gradual thing.... went from 8 weeks, to 7, to 6, then eventually once every month... on a double dose... which stopped working at all when they took me off of 6MP). I have to wonder if you just may have a bunch of food sensitivities that cause issues for you? I stick to the easier to digest low fiber stuff, and that usually works well for me in regards to me feeling well...

NCOT... I wish I could tell that to some of the "experts" aka former coworkers who blamed my diet on me getting ill. Anytime I make a new friendship, or start a new job (which I did in April... best choice I have made)... I make sure my boss/friends KNOW the entire scoop from my mouth and my mouth alone. I do not let them look stuff up on my disease, because it varies so much person to person. I make sure they know what causes issues for ME, how MY disease acts, what kind of special things I personally need to do, etc. It seems if I do this and over-explain from the start... people are much more able to understand it. Not to mention, I tell them it is like a person getting arthritis, or any autoimmune disease... it isn't about the food (though some foods are easier for me to eat than others in terms of not irritating things if they are upset), it is about what my body is doing... seeing my intestines as an invader.

I am still trying to figure things out... I am young yet (only 25) though having this disease since I was 10, having about 7-8 different doctors, going to 4 different health systems (and now belonging to a research hospital system that has a medical college attached to it), belonging to 2 medicine trials, it has been a wild ride... and if I can't figure out how I can personally help myself in this all, in addition to making people at least have some sort of understanding about my own personal disease, it makes life heck of a lot easier. I think that the understanding your own disease applies to anyone who has it, to be honest...
Posted 11/9/2013 1:45 AM (GMT 0)
Jake - I don't know whether I'm lucky or unlucky, or just plain friendless :-/ But I've never had anyone search the internet on Crohn's disease for me, apart from once. Don't really remember the links, but there was nothing of any interest; just alternative health/diet type of stuff of the blandest, most mainstream, nature. I remember feeling rather irked by it, in fact. It would be one thing if people looked up proper medical websites, like webMD.net, or whatever. It may still be stuff I've seen or know about, but I would appreciate that a million times more than a bunch of useless diet 'tips' which probably wouldn't help anyone with mild indigestion, let alone Crohn's.

So yeah: I would rather educate people about Crohn's disease first hand than have them read some crappy alt health blog which bangs on about 'pro' and 'anti' inflammatory foods like it was actual science.

Couldn't agree more with the importance of understanding your own disease. I never appreciated that until it was far too late. Was diagnosed in 2000, when my disease was early onset/mild. Nobody explained the implications of having Crohn's to me. And my symptoms didn't give the game away, because they were very mild (the diagnosis came as a surprise; didn't really believe it). Surprise surprise, things got worse. But not immediately; it was a slow, but mostly steady, descent into hell.

Trouble was, I didn't have all the textbook symptoms, and so if I went to medical websites, most of the info didn't seem to apply to me. Don't get me wrong; they're correct/accurate enough for the layman. But if you want to know about Crohn's, or Crohn's meds, in detail, you really have to hit up pubmed, which means learning a certain amount of medical terminology. If I'd done that years ago, I may have realised the implications of having pancolitis a lot, lot sooner than I actually did. As it was, my GI had to connect the dots for me, when I told him in sheer exasperation I wanted surgery.

Obviously, sometimes there is nothing which can be done. But I found out the hard way you can't rely on doctors too much. They are as lazy, or as bound by bureaucracy, as any other group of people. Most of them can't seem to stand telling you anything about your own disease, such as test results, what said results mean, etc. (my current GI is a notable exception). In such a scenario, it falls to the patient to do their own research on best treatments, which really shouldn't be the case.

Sorry, I rambled a bit :-/
Posted 11/9/2013 3:03 PM (GMT 0)
I came to this website because I was directed from another forum. Bing search led me to it when I looked up "natural anti TNF."

It seems that this is not a forum on the natural approach, and that most of you are looking to MDs for the cure.

Let me tell you something. It is so wrong for ANY doctor to tell you something is incurable.

They are not GOD.

I have seen many diseases and syndromes cured outside of their institution. And, that is just what it is.

They give you what the pharmaceuticals give them, and when I recently asked what was Humira made of, my doctor could not even tell me.

Just who do you think is making money using people us guinea pigs?

They are taught only what drugs can help hide the symptoms, and never look to see what is caused and ARE NOT taught to look at the body as a whole.

There are only a handle of MDs who actually do that and very hard to find, and of course are expensive.

ALL the anti-TNF drugs on the market are extremely risky to take, and have many really bad side effects like rare, uncurable cancer.

AND, there is not one person who is healed by these drugs which they prescribe for a lifetime. Over a lifetime paying $1M for a drug, get real!

Crohns is known to be genetic, with bacterial and environmental implications.

First you must find root of the problem i.e. pathogen... yeast, bacteria and/or parasite and get rid of them.

A good stool test, but not done by MD. Get your NMD or DO to run one. MDs still do not use a proper lab test, and mine just told me that they do not believe that yeast can be a factor.....boy are they so wrong.

It took them 20 years to catch up with how important probiotics play in your gut. There is extensive research going on to prove not only are they important, but that there are different strains that are needed for individual cases. Only a few MDs are smart enough to include them in your treatment.

Activated charcoal, cholestyramine or welchol will help bind and remove a lot of pathogens, heavy metals from pesticides and toxins that are filling your body that are hard to remove naturally.

Living in big city, swimming in contaminated water, drinking milk with MAP (in the UK the milk is pastuerized at higher temperatures and slightly longer and surprise, very few cases of crohns or colitis).

Environmental factors is most likely the main trigger for one genetically predisposed people to react.

Get tested to see what foods you are allergic to, and clear them from your diet until you can handle them.

You must have a clean diet, try to do all organic....google the top 12 foods to avoid that have pesticides. If you cannot afford all organic, use food grade hydrogen peroxide to soak you veggies, meat and even fish.

Lean meat and the right fish. The internet has a list of them as well i.e. salmon, cod, trout, tuna (not in can unless you know there is no soy in it- most soy is now GMO). NO PROCESSED foods or any form of SUGAR. Gluten is often a problem which after awhile can be added back in.

Talk to your NMD who knows about the mixture of drugs and supplements, and discuss adding Natural anti-TNFs to your regime along with antioxidants.

A lot can be in your diet, like drinking good amounts of green tea with fresh ginger, cooking with tumeric, peppermint tea, etc, apples and onions for quercetin.

Try not to do raw as it may be too rough on system at first. For apples, you can boil water add apples, turn off heat, let apples sit for @20 minutes coveted with a cloth..good for pears too! Steam or bar boil your greens, kale, mustard greens, bok choy, etc

You can make a big batch of tea everyday using green tea, pepperment, ginger, aloe vera with lemon and stevia. I add some detox tea for more flavor and help to push things out. You add the cholestyramine to this and take 2000 mg of charcoal with it, and drink it during the day 2 hours before or 2 hrs after any meals so as not to loses other supplements.

Anti TNFs-green tea extract, curcumin/tumeric, licorice extract, peppermint extract, oil of oregano, aloe vera, ginger.

CoQ10, aged garlic,fish oil, Vit A,Vit K, B-12 (methylcolabamine) Vit E are good too!

Vit C 2000 mg, Alpha Lipoic acid or R-Lipoic Acid, and glutathione are also very helpful in detoxing the bad stuff and promoting energy.

It can be overwhelming and expensive.

You can try Metagenics UltraClear to get a lot of the vitamins and mix them in blender with coconut milk/kefir, (mct) frozen fruit and add your extracts and flax seeds, hemp or chia, alternating. Besides coconut which can be expensive, you can use almond, rice or soy milk, the latter organic only. Hemp is good too, but a little pricey.

Hope this is helpful.

Don't let MDs ruin your hope or your life. They mean well, but know very little about the natural ways to use nature for cures.
Posted 11/9/2013 3:56 PM (GMT 0)
This is the second post today from a brand new person with only one post to their name, who thinks they and they alone have cracked the answer that has eluded millions of other sufferers from the same disease, researchers and doctors over the last few decades.

Love the way, though, how medications are always decried for not curing the disease, when diet is no more of a cure than meds are.

If you claim otherwise, then stop whatever diet you are claiming has cured you and see how far you get. If it's a cure, the disease will never come back. If it comes back, you were never "cured".

Post Edited (NiceCupOfTea) : 11/9/2013 9:07:55 AM (GMT-7)

Posted 11/9/2013 4:45 PM (GMT 0)
To nicecupoftea

I have no diet now, except for mct one due to the quacks who took out over 4 ft of my intestines.

I have no crohns now, and no longer suffer.

So stuff that in your hat!
Posted 11/9/2013 5:09 PM (GMT 0)
So you're in a surgical-induced remission then? Just like me.

But 4ft of intestine is a lot to have removed, which suggests rather severe disease. You are in remission for now, and I hope it lasts for many years, but please don't assume you are cured. You are not.

Are you on any maintenance meds?
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