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    Son's crohns
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    louisbruce posted:
    My son is newly diagnosed with crohns, taking standard dr. Prescribed meds, self innoculating. After 11 months he is almost to the day going ok for a month then being sick with low grade fevers, severe fatigue, and nausea for 7-10 days. This pattern has not let up. He is trying to do college but is currently going thru one of his spells. Is there anything out there that anyone has found to relieve these "spells". He is trying to eat vegetarian, with as little meat as possible. He is overwhelmed more than anything by current dr. Prescribed meds not working, showing little if any improvement. Is this the norm? Should he just expect this pattern? How does remission occur? I have heard how individualized this is, but what kinds of experimentation should he attempt first. Or is there any. Between October and now he has gone from 225 to148 on a 6ft. Frame. He is going to cleveland Clinic for care.
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    hannahleigh89 responded:
    Everybody's case is different. I've been dealing with this for about ten years now, and I've not yet been in remission. There was a period of time after a series of surgeries while I was on a new medication that I was doing much better and began putting on weight, but that medication has stopped being effective for me. Some people can take pills and pop right into remission and others try everything under the sun and continue to suffer.

    One thing I'm going to mention is his diet. Vegetarian is great, but I can't imagine that being good for his gut right now. Raw fruits and vegetables are very hard on the digestive tract when it is trying to heal. It is incredibly unhealthy, but when I'm flaring badly, I stick to white starches. Potatoes, bread, noodles. I also do okay with dairy but most Crohn's patients do not. He needs protein to heal and he needs soft foods without ruffage so that he isn't constantly tearing his gut up worse than it already is. He needs the starches to help pack some weight back on.

    How many medications has he tried? What is he on now? I didn't respond to any of the pills that they use to control Crohn's. I take a hand full of pills every day, but they are for symptom management, not disease management. He may respond to something different so it may be time to try a new pill.

    Hopefully, he does find a medication and a diet that does put him in remission, but it may be a while so he needs to be prepared for that. He also needs to be aware that it is very common for patients with chronic illnesses to become depressed, especially at his age (I'm making an assumption about his age based on your statement that he is trying to do college). Hopefully this isn't something that you have to worry about, but the methods of suicide that boys his age choose are often very lethal, so you both need to be aware of where he is at emotionally and be prepared to deal with depression if necessary. I know of several young people who have taken their life because of Crohn's, and it doesn't have to be that way. So just be aware.

    Also, what do you mean by self inoculating?

    If you have any questions, feel free to ask and I or someone else will try to do our best to help you. Try to stay positive. I have very severe, very active Crohn's disease but I did manage to make it through nursing school and I am currently working part time as an RN. There are ways of getting through it, you just have to be prepared and dedicated.
     
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    jbicaci replied to hannahleigh89's response:
    I found out that the liver functions controlled Crohn's disease in 1960 in Italy. I was going to get part of my intestine removed due to excessive pain. But since I came to USA and tried to communicate my knowledge with doctors I found they are not nutrition trained. After many attempts to treat Crohn's by specialist I've got so sick that decided to take matters in my hand. I went to The Vitamin Shoppe and located Liver Support Factor pills and helped put Crohn's in remission. Also papaya helps a lot. Eating vegetables prepared with chicken broth and avoiding spices and can products helps. The secrete is Methionine which is dangerous if taken a long time. But a clean liver produce the following: no stomach acidity and reflux, no joint or muscular pain, properly working intestines, clear and active memory, and no allergies. I don't know why doctors will not hear me or do research with the liver?
     
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    amydav responded:
    I was diagnosed with crohns at the of 10. I was so sick for two years before this diagnoses. I have had over 60 inches of my small intestine removed and part of my colon. I am now 28 and have been suffering with crohns for over 20 years now. Trust me nothing worked. I've tried it all. Until I tried a GLUTEN free diet. People that have gluten sensitivities experience the same symptoms that crohns patients do. I believe people who are sensitive to certain foods continue eating them until there's a problem and it affects each of us different. So someone may get this or they may get that. Just depends on the person. I believe crohns should be treated as a food allergy. Three years ago I was on the verge of having another surgery, Couldn't do it. So I researched and researched and made connections, anybody can do it. Even a doctor but they don't because medical and drug companies wouldn't make as much money. Well, I then started the GLUTEN free diet, that means no wheat. More expensive, yes but worth your life. I have not been back to my GI Doctor since. I never had that surgery. I noticed a huge change in my abdominal pain and discomfort. My stomach was so sensitive, I couldn't even touch it before. I was even getting those fevers and sweats, but it stopped. My nausea went away, vomiting stopped and I felt so much better. It just faded away over the next few months. I have not had a flare up in 3 years or longer. I have not been to the ER, which used to be an every other night thing for me. The hospital became my second home. Seriously! And now its not. Tell your son to try it for at least 3-5 months, if it helps keep it up with the GLUTEN FREE diet. I am 100% certain this will help and keep him from future hospital visits. He was just diagnosed, it only gets worse. If I was put on this Earth for something, its this. No one should suffer when all the answers are laid out in front of our eyes. Don't let any doctor tell you it won't work or its a bad idea because that's what my doctor said too, he just wanted that 15,000$ from the infusions I WAS getting twice a month at 15,000 an infusion...(BIG MONEY) and am longer receiving which by the way caused cancer and I didn't want that. Its a vicious medical circle, don't be fooled by people with smiling faces and doctor badges. They do what their told by the higher ups in a way to make more money. So if its keeping you or your family sick, its worth it to them. Please try it, I am a big gluten free supporter because I know from experience it DOES work. My email is [email protected] if you have any questions or concerns, please email me any time and I'll get back to you.
     
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    amydav replied to jbicaci's response:
    Gluten free diet will help tremendously. I've had crohns for over 20 years now, nothing has worked. Had 60 inches of my small intestine removed and part of my colon. Three years ago, I was on the verge of having another surgery. So I researched and researched. It has to do with how gluten affects certain functions of your body. Everybody is different so it affects everyone differently, while one person may develop this another may develop that. In my case it was crohns. I started a gluten free diet and after only a few months on it I noticed a huge difference. I have not been to my GI in three years and have had zero ER visits. And I never had that surgery. Gluten free diet(no wheat) will help, its the only thing that has for me. No doctor cares trust me, I've tried they shrug you off like you have no idea what you're talking about. I'm the one left laughing because he's out that 15,000$ per infusion, which I was getting twice a month. Which I quit going to three years ago. I felt like he was trying to keep me sick. But I broke away from their disease illusion. Crohns should be treated like a food allergy. You'll feel results in 3 months, as I did in my case. Gluten Free diet will work, I'm most certain of it. Do research on chemicals in our food supply and the affects they have on our body. We're being poisoned by people meant to protect us. Its all a scam and vicious circle. Keep us sick so they can get more rich. And I am not kidding by any means.
     
    avatar
    amydav replied to hannahleigh89's response:
    Gluten free diet will help tremendously. I've had crohns for over 20 years now, nothing has worked. Had 60 inches of my small intestine removed and part of my colon. Three years ago, I was on the verge of having another surgery. So I researched and researched. It has to do with how gluten affects certain functions of your body. Everybody is different so it affects everyone differently, while one person may develop this another may develop that. In my case it was crohns. I started a gluten free diet and after only a few months on it I noticed a huge difference. I have not been to my GI in three years and have had zero ER visits. And I never had that surgery. Gluten free diet(no wheat) will help, its the only thing that has for me. I'm the one left laughing because my GI is out that 15,000$ per infusion, which I was getting twice a month. Which I quit going to three years ago. I felt like he was trying to keep me sick. But I broke away from their disease illusion. Crohns should be treated like a food allergy. You'll feel results in 3 months, as I did in my case. Gluten Free diet will work, I'm most certain of it. Do research on chemicals in our food supply and the affects they have on our body. We're being poisoned by people meant to protect us. Its all a scam and vicious circle. Keep us sick so they can get more rich. And I am not kidding by any means.
     
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    amydav responded:
    Also I don't know the laws in your state and am not trying to condone this, but smoking marijuana helps a lot. Especially if he's losing weight due to nausea and vomiting and or loss of appetite. Just stay away from Gluten(Protein found in wheat). I used to be skin and bones but now I maintain a healthy weight and eat whatever I want, except gluten. Sorry if I offended you but I only speak the truth and just want to help. Believe me I've been to hell and back with this disease but I refuse to back down and give up. Also anything you can buy organic buy it. Do research on the chemicals in our food and the affects they have on our body, put their by people meant to protect us. Like I said its a vicious money making scheme. Get out of the illusion now.
     
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    hannahleigh89 replied to amydav's response:
    Crohn's is not the same as food allergies or gluten intolerance.
     
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    arbob5 replied to hannahleigh89's response:
    Hi Hannah...it's been awhile. My neighbor is a PA to a gastro Dr. and she agrees with what you posted 100%. She also said there are so doggone many untruths out there about Crohns and UC, and they deal with their patients everyday, correcting the "rumors" they have heard.

    I'm doing OK with my UC....fighting c-diff, but that's about over now thanks to Vanco. Wicked stuff but it does the trick. Don't know where I picked it up but I know it is quite common with UC patients. Same as with Crohns patients too?

    I can only say a patient should go to their physicians and get the right info on what they're dealing with. That's the best and only way to go.

    Again, good to hear from you again Hannah. We use to be quite busy on this site, right?
     
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    louvielias responded:
    My son has crohns and is now on humira...tried so many other drugs...
     
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    hannahleigh89 replied to amydav's response:
    I'm a nurse and I have done more than my fair share of research. I'm sorry that you are so ignorant of how your body works.


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