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Crohn's Disease Forum » Your Story » New to Crohn's at 49


07-16-2017, 11:13 PM   #1
mattiesquish
 
Join Date: Jul 2017
Location: orlando, Florida
New to Crohn's at 49

I have been living with "issues" my whole life and yet I just found out that I have severe Crohn's, ad I am soon to be 50. Not sure what severe means other than I find myself in bent over pain and the Doc wants to cut out a few inches and then put me on Humira. I researched the Dr. and he is extremely well recognized and respected in the field but I did not want to jump right into surgery.

So I researched and found so many wonderful people out there sharing their journey and helping each one of us find possible solutions. I found that no two stories are the same.

I told the Dr. to give me 6 months to try other stuff and he basically understood but guaranteed that I will be back for the surgery. I am kind of a obsessive compulsive nerd and looked over many different solutions. Some failed and some worked with some tweaks.

First I had to figure out my trigger foods. Oddly, anything with tannins upsets me. Being French, and not being able to have a glass of red wine is a sin. Besides wine and coffee for drinks and red meat for food, I can live with most anything. I was a vegan for 3 years and I never felt healthier... but I hate veggies so that is harder on me than my new diet.

Well, it has been 6 months and I am feeling extremely stable. No flare ups and if I eat something that my body does not like, I swell up until its gone, with a lot less pain.

This is the cocktail that works for me:
- 2000mg of pentasa/day (i cut it down from 3 and may cut it down to 1)
- 4.5 mg/day Low Dose Naltrexone (LDN for short and Google it)
- Golden Milk at night (turmeric, honey, almond milk, little coconut oil optional)

That's it. That is all I am doing. Cutting out trigger foods and taking my cocktail above each day. I have no side effects and I have noticed that I am able to tolerate more foods than I used to at the beginning of my journey. I almost never have pain.

The LDN is the tricky one to get since most doctors will not prescribe it for Crohn's. But it has done wonders for me. I went to a naturopathic doctor since my GI Dr. did not support something that he never used before.

I will be going for another colonoscopy and hope to see that this is making a difference. Will write back once i have any update and please reach out to me if you have any questions/suggestions on what I am doing.
07-17-2017, 09:00 AM   #2
ronroush7
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Welcome. I hope the best for you.
07-17-2017, 11:46 AM   #3
mtseeg
 
Join Date: Jun 2017
Location: Ohio
Hi Mattie:

Welcome. I think you and I may be in a similar boat (I'm 47). Do you recall what sort of issues you were having and at what age you can remember them starting?

Best of luck to you on the regimen. It's intriguing and I hope it keeps you in remission.
07-17-2017, 04:54 PM   #4
mattiesquish
 
Join Date: Jul 2017
Location: orlando, Florida
Hi. I always had issues. Early 20's I would notice dark beers. For whatever reason, I always had issues with Outback restaurant. I was super fit until about 30. Got lazy and put on poundage. At about 35 the list of foods and drinks that bothered me started to grow. I don't know when I started getting cramps and I thought it was normal to go 10 times/day. Always making sure I went to the bathroom before a movie, dinner, etc. I guess it must be 15 years? Right now I go once or maybe twice a day. I may be not be as normal as someone without Crohn's, but I feel like I did in my 20's. Well, stomach-wise. (Since I am still bald). I am still not in great shape, need to lose about 50 lbs, but I did not want to take drugs and diet as I would never know if it was working. I can only feel better once I lose it too.
I will let you know as soon as I have any update and thanks for the good wishes. In the meantime, read "The LDN book". Really cool stuff. Robert
07-17-2017, 04:55 PM   #5
mattiesquish
 
Join Date: Jul 2017
Location: orlando, Florida
Welcome. I hope the best for you.
Thanks... we all need luck! Robert
07-18-2017, 05:30 PM   #6
eleanor_rigby
Senior Member
 
Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Unfortunately with Crohn's, symptoms are not a good indication of disease severity. It's great that you feel you are doing well but make sure you get regular testing to check the symptoms are aligned with what is going on inside. I see you are getting a colonoscopy soon which is very sensible. Hopefully it will look good - let us know how you get on.
09-26-2017, 05:30 AM   #7
mattiesquish
 
Join Date: Jul 2017
Location: orlando, Florida
I have been living with "issues" my whole life and yet I just found out that I have severe Crohn's, ad I am soon to be 50. Not sure what severe means other than I find myself in bent over pain and the Doc wants to cut out a few inches and then put me on Humira. I researched the Dr. and he is extremely well recognized and respected in the field but I did not want to jump right into surgery.

So I researched and found so many wonderful people out there sharing their journey and helping each one of us find possible solutions. I found that no two stories are the same.

I told the Dr. to give me 6 months to try other stuff and he basically understood but guaranteed that I will be back for the surgery. I am kind of a obsessive compulsive nerd and looked over many different solutions. Some failed and some worked with some tweaks.

First I had to figure out my trigger foods. Oddly, anything with tannins upsets me. Being French, and not being able to have a glass of red wine is a sin. Besides wine and coffee for drinks and red meat for food, I can live with most anything. I was a vegan for 3 years and I never felt healthier... but I hate veggies so that is harder on me than my new diet.

Well, it has been 6 months and I am feeling extremely stable. No flare ups and if I eat something that my body does not like, I swell up until its gone, with a lot less pain.

This is the cocktail that works for me:
- 2000mg of pentasa/day (i cut it down from 3 and may cut it down to 1)
- 4.5 mg/day Low Dose Naltrexone (LDN for short and Google it)
- Golden Milk at night (turmeric, honey, almond milk, little coconut oil optional)

That's it. That is all I am doing. Cutting out trigger foods and taking my cocktail above each day. I have no side effects and I have noticed that I am able to tolerate more foods than I used to at the beginning of my journey. I almost never have pain.

The LDN is the tricky one to get since most doctors will not prescribe it for Crohn's. But it has done wonders for me. I went to a naturopathic doctor since my GI Dr. did not support something that he never used before.

I will be going for another colonoscopy and hope to see that this is making a difference. Will write back once i have any update and please reach out to me if you have any questions/suggestions on what I am doing.
I have all my tests and exam results back. I am in full remission. My GI stated that they have never seen such a drastic change. I never lost 1 pound because I strictly did not want to change anything but stay away from trigger foods and find a regiment that worked. Now, losing weight can only help.

I feel great! I have no cramps, I go once a day like clockwork. The meds cost me about $75/ 6 weeks. I could not expect a better outcome. LDN is my answer! Please reach out and I would be more than happy to share exactly what I am doing.

Super happy and crampless!
09-26-2017, 05:31 AM   #8
mattiesquish
 
Join Date: Jul 2017
Location: orlando, Florida
Hi Mattie:

Welcome. I think you and I may be in a similar boat (I'm 47). Do you recall what sort of issues you were having and at what age you can remember them starting?

Best of luck to you on the regimen. It's intriguing and I hope it keeps you in remission.
I am 100% fine now.
09-26-2017, 05:32 AM   #9
mattiesquish
 
Join Date: Jul 2017
Location: orlando, Florida
Unfortunately with Crohn's, symptoms are not a good indication of disease severity. It's great that you feel you are doing well but make sure you get regular testing to check the symptoms are aligned with what is going on inside. I see you are getting a colonoscopy soon which is very sensible. Hopefully it will look good - let us know how you get on.
Thanks. All results are back and I am doing great. Not 1 ulcer found and no stricture.
09-26-2017, 05:34 AM   #10
mattiesquish
 
Join Date: Jul 2017
Location: orlando, Florida
Welcome. I hope the best for you.
Thanks, I am doing great!
09-26-2017, 05:51 AM   #11
ronroush7
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Join Date: Oct 2013
Location: vienna, Virginia

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Glad to hear.

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