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Crohn's Disease
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Posted 10/5/2013 12:57 PM (GMT 0)
I am 16 now and was diagnosed with crohn's a few months ago... My doc says it has been present fr 5-6 years now, but he says it will get cured cuz its in its early stages.. What I wanna noe is, is he saying tht to comfort me or can my crohn's seriously get cured forever?
Posted 10/5/2013 2:20 PM (GMT 0)
You can hopefully find a treatment plan that keeps you in a solid remission for your whole life, but there is no "cure" for Crohn's. When I say "cure," I mean that you would be somehow able to remove the disease from your body and never think of it again. That is not currently possible. Your DR should talk to you like an adult and stop telling you things like this.
Posted 10/5/2013 2:47 PM (GMT 0)
Is your doctor actually a proper doctor? Did he actually use the word 'cure'? Any gastroenterologist will know that there is no cure for Crohn's and will not use that word in relation to it.

Hopefully you can get into a long remission, but you will never be free of the disease in the sense that an actual cure means.
Posted 10/5/2013 3:09 PM (GMT 0)
Is he a Specialist? A GI doc or any other shouldn't be using the word cure. If he is I would recommend finding a new Dr.
Posted 10/5/2013 4:03 PM (GMT 0)
Thanks for replying
And no! My doc's gr8, he's really good; I guess then he was just saying to calm me and my parents down..
U hv to understand, for my parents to have seen me go for a colonoscoly made them worried, plus this big syndrome comes out, I guess its a doctor's way to make the news come out to us slowly...
But now im a 100% sure, this thing's not curable....

So do my medicines last forever, or i stop taking meds after remission?
Posted 10/5/2013 4:29 PM (GMT 0)
It's still wrong of him to give you and your parents false hope by using the word 'cure', imo. It's one thing being optimistic; it's another thing entirely to give misleading information.

Being on meds lasts as long as you do, basically :-/

That actually is a really tricky one to answer, because it's almost impossible to tell whether a remission is being sustained by medication or not. Some people would be in remission even if they weren't on any meds; other people relapse if they come off their meds. Personally I wouldn't take the risk; I'd stay on the meds because I'd rather be overmedicated than have a Crohn's flare-up.
Posted 10/5/2013 5:11 PM (GMT 0)
@NiceCupOfTea
thanks; I guess i'll find out abt tht when I have my first remission
Posted 10/5/2013 5:32 PM (GMT 0)
Hi Bullz,

As you are aware now there is no cure for crohn's yet. My son was sixteen when he was diagnosed and from the start I got him to read as much as he could about the disease and to understand also what he needed to do to get it under control. If it was up to him he would have left it all on me, but it now been two years and he takes his medications, vitamins and rests when his body when it is telling him to do so. He also knows that he is not able to do some of the things that 16-18 year old kids like to do even if they are not supposed to.

He is doing very well and is enjoying his life. It takes time to get used to the diagnosis but you will be fine too. Make sure that you take the medications that your doctor prescribes for you, it is so important to keep your crohn's under control and maybe the cure will come soon. Take Care.
Posted 10/6/2013 12:38 AM (GMT 0)
No cure now, but personally I would be surprised if there wasn't a cure found in your lifetime. There are new findings about the nature of Crohns all the time. Hang in there and treat yourself well : )
Posted 10/6/2013 9:02 AM (GMT 0)
@Dingleeire
thank u, im new, so knowing tht things will work out fyn helps :)
@big betty
let's hope there is one soon!
Posted 10/7/2013 2:43 AM (GMT 0)
I don't want to sound negative here, but Crohn's disease is a can be a very serious illness. It can be hard to find a medication that works, and they all come with side effects and risks. Even if you do find a medication that helps you in to remission they seem to stop working over so many years and you have to start over in finding a new one. A lot of us end up having to have surgery to remove diseased parts of our bowel. We can get abscesses and fistulas, and have extreme bleeding. Strictures from inflammation or scar tissue. For most of us it means there are going to be hospital stays to get severe flares under control. Then of course it can effect so many other parts of our bodies. We get joint pain, skin problems, eye problems etc..

Everyone is different, and everyone has different levels of disease. But I just didn't want you to think that you take a pill and everything will be "fine" and you'll get to completely enjoy life as if you never had it. That's not the way it is for many that suffer and continue to fight this thing every day. Maybe it is that way for some that have very mild disease. Some get to enjoy periods of remission and periods of being sick. And some have a very hard time achieving remission. As suggested above I would read as much as you can about your diagnosis. I would also make sure I have a doctor that is going to be honest and straight with me. I don't care for sugar coating. I sure do hope they find a cure soon though!
Posted 10/7/2013 3:34 PM (GMT 0)
@Jen77
I just pray to God tht mine works out fine
Posted 10/7/2013 8:35 PM (GMT 0)
I hope so for your sake Bullz, maybe you'll be lucky and have a mild form of the disease. But education and knowing what it can do I think is very important.
Posted 10/8/2013 12:35 AM (GMT 0)
Bullz,
The summary that Jen77 gave is very accurate from what I have seen, since I have been dealing with severe Crohn's for over20 yrs now, but mild since a child.
The last time I took prescription meds was in 1991, and I have never had any operations.
I use some of the recommendation from a Nutritionist & MD written in a book called
"Prescription for Nutritional Healing".
This book has helped me to maintain Crohns so that at least I dont have any pain or severe flareups like I did for the first few yrs. when I was first diagnosed.
Basically what I have found out from my own experiences is that if you really want to help yourself to feel better (most of the time),
You have to accept that certain foods and drinks will cause a flare up


1) Once I figured out what foods was causing me to run to the bathroom and have intense pain, I made up my mind that I would try my best to stay away from them.

2) I drink "Whole leaf Aloe vera Juice" every day when I am flaring until I start feeling better. It is best to drink it everyday.

3) I take strong Vitamins & Fish oil to give me energy to go on. Mal-absorbtion is a part of Crohns. Thats is why we have no energy to do things or have weight loss, etc.

4) I do not drink any Milk or milk products or coffee.

These suggestion are a good start, but if anyone has any question. Please ask.
I read of many crohns suffers on here and it really make me very sad.
Posted 10/8/2013 6:19 AM (GMT 0)
@no_pain
Thank u very much, this was a lot helpful

My doc says I have a mild Crohn's... I do have flare ups as my disease has picked up since I came to India fr further studies.. I have lived all my life in the Middle East, so foodstuffs there were pure and plus, my parents always made sure I ate well...
The problem started when I came to India... I was fainting more often, stomach pains, increased loose motions nd anaemia.. I had become horribly thin... Thtz when my dad took me to a GI in UAE who straightaway suspected Crohn's and did a colonoscopy.. (We had been visiting doctors since my 6th grade, but no one cud detect the syndrome).. im takin homopathic medicines with my allopathic ones, and I eat more frequently even if I dont feel like.. But I haven't put restrictions on my diet already!

Its nice to know tht we cn relate and understand each other here :)

(P.S. no_pain - How do u noe so much abt Crohn's?? Are u a doc??)
Posted 10/8/2013 3:35 PM (GMT 0)
Some people can improve their symptoms with diet, others can't. What I can safely say is that Crohn's is far more than a lactose or gluten intolerance, so for anybody with Crohn's cutting out those things won't be the full answer. Not will taking additional vitamins, etc. If you are in remission with just those things, then you are most likely in a spontaneous remission which doesn't need meds to maintain it.

It's misleading to imply that you can control Crohn's with dietary changes alone. Some people claim to do it, but that usually involves more sweeping changes than not drinking milk or coffee.

Post Edited (NiceCupOfTea) : 10/8/2013 9:40:21 AM (GMT-6)

Posted 10/8/2013 4:40 PM (GMT 0)
When I am flaring, I avoid foods that make my symptoms feel worse. But when I am in remission, I can eat practically anything with no problems. So if my diet caused Crohn's, then I would go out of remission when I eat certain foods, which is not what happens. Just sayin' I agree with NCOT on this one.
Posted 10/9/2013 12:16 AM (GMT 0)
Bullz,
No I am not a doctor. I have had Crohns since a little boy so I understand all the symptoms & have been able to experiment with different natural approaches starting in 1990 when I was diagnosed.
Specifically from the Book "Prescription for Nutritional Healing" and other sources . I have specifically studied and read many sources about natural therapies to aid in the health & healing of the digestive tract. Which is very possible as I am a testament to the fact that natural medicine actually works. It is an ongoing process that is never ending & the Crohns is always there in my case, dormant or not my symptoms are minimized by natural medicine.
You must decide if you want to succumb to the double edged sword of Prescription Medications and their side-effects.
I have tried them & I was not able to work and be on them so I looked for another approach.

NiceCupOfTea
Selective eating is only part of the equation. I have tried many different natural anti-Inflammatory foods and supplements.

This is what I'am currently doing.

1) Selective diet (I don't eat anything that has caused a flareup in the past)
2) Aloe Vera Juice (specifically-Whole Leaf) - 2x daily if flaring or weekly when not flaring
3) 50 billion + culture (enteric coated) Probiotic caps -2x day when flaring (This has helped me when bleeding to heal very quickly)
4) Strong Multi-Vitamin - 2x daily
5) Strong Fish Oil 1000+mg Omega-3 (Enteric coated) - 2x daily
6) N-Acetyl Glucosamine 750 mg 2x day
7) Quercetin 2x day
8) Boswellia 3-4x week
9) Digestive enzyme complex 3-4 times week &
(papaya enzymes after dinner or larger meals)

I only added the N-Acetyl Glucosamine & Quercetin last year because of the promising benefits that some studies have shown.
The N-A-G has been shown to facilitate the healing of the intestinal wall lining.

It sounds like a lot but I am able to work at my job without hardly any distraction from the symptoms of Crohn's. I know this current plan is working because when I deviate from the diet portion I will have major problems. (I have been doing this for over 20 years)

Foods are very deceiving since they don't always cause severe problems every time you eat them that's why its tricky.
I have had many occasions when I was younger and not flaring but after eating something like fast food fried chicken(KFC).
I immediately became very sick for days afterwards. Other times I did not have severe symptoms after eating it. But it happened enough with (KFC) chicken that I finally don't eat that anymore. Foods fried in corn or vegetable oil give me major problems so I only use olive oil. I have the same experience with ice-cream.

These are the foods I do not eat:

1) NO raw Milk or milk products even lactose free milk or ice-cream has caused a major flare- except real cheese (small amount) or Yogurt I can tolerate .

2) No greasy Fast foods fried in vegetable oils, like hamburgers fries etc especially when flaring.

3) No canned foods

4) No processed sugary Junk foods or very little if you must. This causes big problems for me. You may not feel it immediately but the symptoms will creep up on you. (A study showed that people with crohns eat too much sugar) and I must admit that I have a sweet tooth. I eat honey or fruits or dried fruits, dark chocolate etc., when I want sweets. I notice I have less problems with those.

5) No Coffee not even Decaf or instant coffee. I only drink decaf on rare occasions. Coffee has caused me major problems in the past. I was drinking instant decaf a while back for one month and it caused me to have serious problems with a stricture. I did not recover from that for over a year. A study showed that coffee is damaging to the intestine wall lining. The Whole Leaf Aloe Vera juice really helped the pain to go away after 4 days of use.

Processes Sugars feeds bad bacteria in your intestines so getting a good bacteria balance in your digestive tract is very important for Crohns sufferers. That is where the probiotic supplement comes into play. Some studies suggest certain probiotics strains have helped to minimize the symptoms of IBD.

Hope this information might help someone.
Posted 10/9/2013 12:47 AM (GMT 0)
In my experience diet is a good way to influence my symptoms, but it can't control them. Medication is the only thing that has, for me, had any major impact. I'm taking 40mg/week of Humira, with folic acid and omeprazole to protect my liver and reduce acid in my stomach. I also take vitamin supplements and an anti-histamine, and Loperamide as needed (I needed a lot, at first).

All of that combines to do a few things about my symptoms. The Humira reduces inflammation of my usual problem areas, such as anus, intestines, throat, and stomach. Alone, however, it is not enough, as the acid in my stomach will eat away at existing sores and prevent them from healing, while the incredible speed of my digestive system causes such massive amounts of diarrhea that my anus remains irritated. The Omeprazole handles the first, Loperamide the second.

At that point, were I to eat whatever I want, I would still be miserable. My guts would still hurt, my appetite would be affected by the pain, and I would develop bouts of hot bloody diarrhea or gassy conspitation, depending on what I ate. Greens and dairy for gas, grease and peppers and onions for fire and blood.

There is a very very long list of foods that I can't eat. I can't even name them all; the list changes, so I just go by a few guidelines: No onions, no peppers (black pepper is okay), no grease (includes fried food), NO GREENS, no caffeine, no alcohol (especially not beer). Fruit is okay in moderation. Dairy is okay in VERY small amounts, except for extremely hard cheese, like parmesan, which seems to be fine in massive quantities (i like parmesan).

Strict adherence to these rules allows me to live relatively comfortably. While my stool is never normal, it also doesn't actively hurt, which is really all I'm going for at this point. And then the rules change and I have to figure them out again. Dairy in particular wobbles between acceptable and not.

So I would suggest that, in addition to your medical treatments, you begin experimenting with your diet: Keep a log, if it helps, and see if anything in particular bothers you. If you could feel better just by avoiding some foods you might not like that much anyway, why not?

The more aware you are of how everything you eat will affect you, the better you will be able to control your life. Maybe you don't mind putting up with the price for, say, onions most of the time... but you've got a job interview coming up and you want to be at your best. Knowing in advance that onions bother you would let you remove that from your diet for a few days, so that you ace that interview.
Posted 10/9/2013 1:35 AM (GMT 0)
@no-pain

Do you know how many people have tried diets (even stricter than yours) and tons of supplements only to still end up flaring or needing surgery?

Obviously not.

You are not the first new poster to come along advocating diet and supplements, as though it was an amazing novel approach, when countless people before you have tried similar regimens. It isn't new and it's not an answer to most people's Crohn's disease.

Just to add: what I ate made no difference to my symptoms (aside from when I got a stricture; then I did have to start being more careful about fibre). And when I went on an elemental diet, I got even iller. If a food makes you worse, then cut it out, just common sense. But diet does not have magical healing powers that meds don't.

Post Edited (NiceCupOfTea) : 10/8/2013 7:41:03 PM (GMT-6)

Posted 10/9/2013 2:02 AM (GMT 0)
It's such a complicated disease, and so much we don't understand! We don't really know what causes the inflammation in our intestines in the first place...we suspect bacterial balance, or too much sugar, or stress or genetics or viruses, pollutants....the list goes on and on. So it's entirely reasonable that some foods or diets or supplements have anti-inflammatory properties and work well for some people, but don't work at all for others. The medication choices we have are not such hot stuff either....we all respond differently to the meds. So my conclusion when I read these threads is everyone is right and everyone is wrong! One of the frustrating things for me, especially the first couple of years after I was diagnosed is that I think I know what I'm doing, and then my symptoms or problems completely change and my assumptions are proven incorrect. This is especially true with my diet.... when I'm feeling well I can eat practically anything, and when I'm not doing well, practically everything makes me sick. I'm always a little lactose intolerant and I rarely can tolerate fast food, but beyond that, I don't have any diet regimen that works well for me all the time. So my only real advice is do your best, and try not to be so restrictive with your diet that you miss out on important calories or nutrients. Bullz, I hope we are not depressing you....there is no known cure, but many of us, (and I still count myself in this category) can go for long periods in remission with a relatively normal life.
Posted 10/9/2013 6:03 PM (GMT 0)
@gumby44
Totally agree with u... Crohn's is such a complicated and challenging disease and only thtz the reason a cure hasnt come up yet.. Everyone seems to have a different Crohn's.... Amd we have to concentrate on meds and diet control...
No_pain: even I was paranoid about side effects of medicines before which is why I refrained frm taking them.. But Crohn's is something with which I have to make an exception.. Ive already learnt tht it will atleast affect the kidney.. But we dnt have a choice either.. And the last thing I want is to further feel depressed by thinking of the side effects...
@gumby 44: Mr.Crohn here does make us all depressed; but i'd rather face the facts instead of want a sugar coating-i can do tht fr my parents, but I have to be practical... We all have to be.... And its encouraging to see many who already are :)
Posted 10/9/2013 6:51 PM (GMT 0)
NiceCupOfTea
Just as in Bane's case I also must pay attention to what I eat, If I want to feel good most of the time. Did you read Banes post ?
I only posted my experience hoping to possibly help someone to deal with this sickness just as I have.
I noticed many others on this forum are not actually benefiting from traditional medicine.
They continue to listen to everything that their doctor says hoping that he has the answers for them & some seem to end up worse off than before the treatments.
My post is to encourage people that there is some hope.

Your disdain for a natural approach, leads me to believe that you have some ties to the medical field.
What is the incentive for a pharmaceutical company to come up with a cure when they are already making much money from the current medications out there being used to treat Crohn's and many other illnesses. Humira is used to treat a number of different illnesses & what is its actual effectiveness for these different illnesses ?


Finally the reason that I'am not the first poster to recommend diet & supplements is an indication that others are going the natural route with some favorable success just Like I have been doing since 1990.
My condition is mild because of the natural approach. I know how I felt before going the natural route & I positively know it has benefited me tremendously.
Posted 10/9/2013 8:56 PM (GMT 0)
no_pain, if you read Bane's post you'll see that they said medication was really the only thing that made an impact.

I personally believe some people with Crohn's do have some food allergies and intolerances. For those people cutting out certain foods probably does help some of their symptoms. In no way does that treat Crohn's for those who do not have food issues. I've tried cutting out certain foods early on. I tried vitamins, fish oil, probiotics, different supplements. I really saw no improvement in my symptoms. Sometimes I felt worse after taking some supplements actually. Sure there are some things I shouldn't eat when I'm flaring. Even my doctor tells me that. Fried foods, salads, nuts, popcorn. Anything that I find aggravates my symptoms when flaring. But while in remission no foods bother me.

NCOT doesn't have any tie to the medical field that I know of no pain. Are you connected to that author of the book you keep touting here? Seems like it. NCOT has been here a long time sharing her ups and downs with this disease. So far you've only posted 3 posts, all about a book.

Finally you say you see people here not responding to medications. Well there are a few different reasons for that. First of all it can take some time to find the one that works for you (as it is very different for everyone as we all say). Second, it's a chronic illness, it's going to come back. Sometimes we build a resistance to medications, and we have to find a new treatment plan. Sometimes they don't always work, and people need surgery. Some try natural remedies with varying results. You'll see a lot that say they still suffer regardless. We are all different. I tend to believe the ones that say they have the best results when they do a bit of both natural and medical treatments. And honestly I get a bit insulted when people act like my serious illness is just a dietary and vitamin problem. It's just not that simple.

Honestly when people tell me they've been in remission for 20 years because of diet and supplements I think of a few things. They have a mild form of the disease. They have food allergies or intolerance. I've also had people claim this that started right after a surgery, or after a medication put them in to remission. So you have to wonder what really brought on the remission. And then there is always the.. don't trust everything you read on the internet. Yes, I tend to trust my well educated and experienced doctor that has my best interest at heart. Over someone online, sorry but that I think is smart advice. Don't trust all you read online.

Post Edited (Jen77) : 10/9/2013 3:04:03 PM (GMT-6)

Posted 10/9/2013 10:16 PM (GMT 0)
Lolzers, yeah, I'm a pharmaceutical shill, that's it. I can appreciate you probably won't want to sift through 4000 posts to find out my history, but if you did you would find out I failed every Crohn's med going and eventually had to have my colon removed. Only way I could be a worse advertisement for Remicade is if I'd dropped dead from it.

So you're quite right: not everyone on these forums benefits from the Crohn's meds. Does that mean meds are worthless? Absolutely not. What you should remember is that health forums are naturally self-selecting towards people who have joined precisely because they are not the ones who are in remission or responding to the usual meds. They are looking for help or solutions. In other words: Crohn's forum members are not representative of the entire Crohn's population out there, many of whom will be in remission and not thinking enough about their disease to consider joining a forum.

Don't get me wrong: the meds are not perfect. In particular I think the biologics have failed to live up to the hype. And I don't think there has been enough research into the root cause(s) of Crohn's: it has been mostly about finding new drugs for treatment. But let's face it, if there is a cure out there, the only place it's ever going to come from is medical research.

#You can give me my backhander now, Remicade manufacturers#
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