Crohn's Disease Forum » Your Story » My doctor did not know what it was, but I beat it!

01-15-2012, 11:52 AM   #1
New Member
Join Date: Jun 2011
My doctor did not know what it was, but I beat it!

I had been suffering with pain and weight loss for about 4 months. My doctor thought it was my pancreas since my Colonoscopy was clear and when they went down my throat with a camera, that was clear. I went to the Gastroenterologist and had the swallow the camera treatment to look at the small intestines, and that is where it was. Ulcers, erosion, etc. He put me on Endocort, and after a month I was not feeling much better. I started reading about Probiotics and diet. The very first day I took Probiotics pills, the pain stopped. I changed to a Primal diet, eliminated all grains, sugar, and dairy. I have since regained the 30 lbs I lost. I have been symptom free for 6 months, and I think I beat it. My Gastro doc, could not believe it. I showed him my Probiotics and he just said if it works for you great. My question is, why don't doctors give you any advice on diet, etc. I know it is different for everybody, but when I had it, I thought I was going to die the pain was so bad. My wife is disabled and I could not take care of her. Her sister had to come and stay with us, since I was doped up on pain meds, and that was not taking away the pain. All I could do was lay in bed and moan. All I was eating was Cream of Wheat, and soon discovered that according to the Primal diet I started to follow, wheat is one of the worst things for your intestines, who knew!
01-15-2012, 05:07 PM   #2
Rain's Avatar
Join Date: Jan 2012
Location: fort smith, Arkansas
Wheat is hard on the gut! I don't know if i could follow the primal diet, I love french bread and garlic bread and pasta too much. I'm glad everything went well! I've heard that everyone can get ulcers and that they can go away on their own, or with some tlc. Good to know your ok now.
01-15-2012, 05:23 PM   #3
Angrybird's Avatar
Join Date: Nov 2011
Location: Cambridge, United Kingdom

My Support Groups:
Hi, I think it really helps that I live near Addenbrooke's hospital in Cambridge. When I was diagnosed the first thing they looked at was what I ate! Meds only came into play when I flared up on the elemental diet they tried. I think team there are known for looking at this more and having a more open mind about diet and nutri drinks etc. I think the docs try meds as they are a quick fix compared to going through everythng you eat and trying to pick out al the niggly things that can cause issues. I think the post by happy is worth a read, the dedication they are puttng into their diet is amazing.

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
01-15-2012, 08:16 PM   #4
New Member
Join Date: Jun 2011
I love all that too. But once you put it out of your life, it is easy to live without it. It just depends on your will power. Thanks for the reply. Mike
01-15-2012, 08:51 PM   #5
Senior Member
Join Date: Nov 2011
I agree, diet is MORE important than medications--FOR ME.

I think doctors are oriented toward surgery and pharma because no one will pay to fund studies which would essentially result in an unpatentable approach to diet--even though this is, in my estimate, the best way to prevent further intestinal damage from Crohn's. I also agree that QUALITY probiotics and, I would add, QUALITY omega 3s are essential and exhibit positive effects in a matter of days/weeks--these products have limited patentability, in terms of unique delivery processes, and certainly don't reap the astronomical profits of modern biologics/prednisone/pentasa.

Doctors go through an intense indoctrination process that doesn't value dietary considerations. It's a herd management approach to human health that will not consider individual sensitivities which cannot be quickly/efficiently measured by modern equipment. Dietary alterations positively/negatively effect health outcomes over the long term, and there are too many uncontrolled variables that won't fit neatly into their sterile paradigm. If only they honored their Hippocratic oath (first do no harm) and listened to his advice: "Let food be thy medicine, and medicine be thy food."

Biologics, Prednisone, and Pentasa, I believe, are far too profitable approaches which result in a short term, but measurable, benefit. For ME, Pentasa was not only uneffective, but it had a nocebo effect--the prospect of remembering to gulp down 5 huge caps 3 times a day for life was psychologically detrimental.

I think the effectiveness of an exclusively dietary Crohn's treatment depends on the severity and locality of the disease. Irregardless, the protocol should be equal parts: diet, supplements, lifestyle changes, exercise, and complementary medications (I'm testing out LDN--six weeks into the 4.5mg dose, I now believe it is working).
"Give away the stone. Let the oceans take and transmutate this cold and fated anchor. Give away the stone. Let the waters kiss and transmutate these leaden grudges into to gold. Let go." MJK
01-15-2012, 09:44 PM   #6
Forum Monitor
kimmidwife's Avatar
I have to agree with you all. I am very angry with my daughters docs for not backing me up on the whole nutrition thing. Now my daughter will not listen to me about watching what she eats. She keeps saying but the doctors say crohns is not related to diet. That is what our doctors keep telling her. We have already changed doctors once and there has been no difference. We are hopefully moving later this year and I am going to look for a doctor who believes in looking at nutrition and diet with crohns. Hopefully I can find one and hopefully my daughter will listen.

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-16-2012, 02:50 PM   #7
New Member
Join Date: Jun 2011
Lucky that my Crohn's was not nearly as severe as some that I read about on here, even though I thought I was going to die from the pain. My heart really goes out to those who have suffered a lot more than I did.

What irritates me the most about doctors is that they push pills and don't give reasonable and common sense advice on how to deal with it. We end up searching the internet and coming up with our own cures. Thank God for the internet. In the old days you would have to look it up in the encyclopedia! For you older people, I bet you learned to spell encyclopedia from the Mickey Mouse Club like I did, lol. I remember in school I was thrilled to see it on a spelling test and you could practically hear all the kids singing it!

Crohn's Disease Forum » Your Story » My doctor did not know what it was, but I beat it!
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