Need some help

[Metfan1]

whats up everyone. im experiencing the worst flare ive had in years and im not sure what to do. im so opposed to taking the heavy drugs for this disease but my 6mp isnt working anymore. does anyone have any good tips on how to control this vicious disease without the use of drugs?

 

[David]

Hi Metfan and welcome.

I'm so sorry to hear you're experiencing so much trouble

Sometimes Crohn's Disease can be controlled with diet, other times not so much. It would depend on many variables. Some areas of the forums you might want to look into:
Enteral nutrition
Low Dose Naltrexone
Diet, Fitness, and Supplements

Would you be game to share your symptoms? We might be able to provide further insight thereafter.

Again, welcome!

 

[tots]

I am sorry your having a hard time.
When I was first diagnosed I hated taking a
bunch of meds. (14 to be exact). But, now
that I am older and wiser I am ready to
get rid of my symptoms. It can do
alot of damage and because we cant see it
its easier for us to mot treat when we arent
"that bad". My feeling is we do whats right for
us at any given point. One way oe the other
I hope you get relief soon!


Lauren
:thumright:

 

[Metfan1]

thank yous for your help..right now im experiencing around the clock stomach discomfort, blood in the stool, diarrhea, body aches, and im using the bathroom about 10 times a day.

 

[David]

With symptoms like that, I'd be weary of trying to control everything with diet. TOTAL enteral nutrition MIGHT do the trick but it's so important to get disease activity like that under control that I personally would hit it with various treatment options. At the very least, if I was going to try total enteral nutrition I would want to do it under the care and supervision of a good GI.

When was the last time you were evaluated by a gastroenterologist?

I'm worried about you How long have you had these symptoms?

 

[Jennifer]

Are you only taking 6MP? What dose? Chances are you'll have to call up your GI and have blood work done for starters and then they'll likely want to run other tests to see what's really causing the bleeding. Once you know the cause and location of the blood loss then you're GI will better be able to treat your symptoms.

 

[Metfan1]

im currently taking 50 mg 6mp...i used to get remicade infusions about 2 years ago. it worked pretty good at first but they stopped working..i just went for a colonoscopy in december and my doctor said everything looked good. when april came around i started seeing a little blood. i normally get a little flare every time the weather changes but it usually doesnt last too long..this one is different though..its gotten worse since april...im calling my doctor tomorrow and guna see what he suggests. i dont want to take humera or the hard drugs like that. yous think entocort will do me any good?

 

[David]

50mg of 6-MP is on the lower end of the spectrum. Your dosage may need to be raised to reach therapeutic levels necessary to get you into remission. Your doctor can perform blood tests to help evaluate if that is the case for you. He might take a CBC to evaluate white blood cell levels as well as test your 6-TGN and 6-MMP levels to see if the 6-TGN is in the therapeutic range. I realize some of this may sound greek but I'm happy to elaborate if any of it is of interest to you.

 

[Metfan1]

i understand. ive been through all that stuff before. im going on about 6 years now with this disease. any word on the entocort? you think that will help my situation?

 

[Jennifer]

I always go towards Entocort before Prednisone obviously because it has less side effects. The drawback is that it takes a little longer to kick in. Prednisone can take a few days where Entocort can sometimes take up to a month for you to notice any drastic change in symptoms. I'd suggest it to your GI and see what they think. What you may be able to try is both at the same time by doing a short dose of Prednisone (10 days or less) at a high dose and start the Entocort at the same time in hopes of giving the Entocort more time to kick in. That's if you even need steroids though. Gotta know how much inflammation you have going on with that blood work.

Meds I've taken in the past for flares are 6MP, Asacol, Prednisone and Entocort. Not saying that will work for everyone but that's what I was on usually (steroids were off and on of course).

 

[David]

I'm not sure about how well entocort would work for you. I provided some data on it here if you're interested.

That you do worse as the weather changes makes me wonder about vitamin D though. Do you monitor your levels?