Newly diagnosed but positive about treatment!

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New Member

Date Joined Dec 2009
Total Posts : 19
   Posted 12/2/2009 5:17 PM (GMT -7)   
Hi everyone,
I am new to the forum but have been reading it for a while since I have been unwell.  I finally got a diagnosis of mild crohn's disease in the ileum.  My GE gave me prednisolone and then maintenance treatment with pentasa but he also suggested that there is a trial coming up soon that I could enrol in which is the triple antibiotic regimen against MAP.  Anyone on this treatment at the moment?
Hope everyone is keeping well!

Veteran Member

Date Joined Oct 2009
Total Posts : 1070
   Posted 12/2/2009 9:12 PM (GMT -7)   
Interesting. I hope this works well for you.
I use FD&C Blue dye number 1 and it really seems to help me.  There is SCIENCE behind this.  Just ask me and I will explain it to you.  U/C and Crohn's for 34 years.  Blue dye for one month and I am feeling pretty good!  I am so excited by this but I need others to try it with their doctor's permission.  Simple food coloring!!  BLUE1.  
I can't make money on this, it's already in your kitchen.  I just want to help.
I do 2 drops in 6 ounces of water when I get up, 2 or 3 drops in 16 or 20 ounces of water that I sip all day and then 2 drops in 6 ounces of water at bedtime.   Max of 7 drops a day.  Give it about ten days.  I am NOT a healthcare professional.   Ask your doctor if this is safe for you. 

Regular Member

Date Joined Dec 2009
Total Posts : 93
   Posted 12/3/2009 7:34 PM (GMT -7)   
I am new to the form also but have been searching for help for my daughter. I am very interested in the MAP factor and would like to know where the clinical trial being conducted that you spoke of is located. Any information would be greatly appreciated to point us in the right direction.

Regular Member

Date Joined Oct 2009
Total Posts : 253
   Posted 12/4/2009 2:43 AM (GMT -7)   
I'm currently on prednisone but no interesting trials for me! Good luck I hope it works for you!
female 19, diagnosed crohns december 2008
erythema nodosum
currently taking 40mg prednisone, then imuran or remicade when i taper
feeling scare about side effects but will be happy to feel better :)

Veteran Member

Date Joined Dec 2005
Total Posts : 1768
   Posted 12/4/2009 3:19 AM (GMT -7)   
Just out of curiosity, why would you start a trial when you've only been recently diagnosed? Does your doctor not want to try any of the meds out there first before starting a trial? I think I would be afraid that I'd get the placebo and get worse during the trial, and require even stronger drugs. Of course that's just my initial reaction after reading your post. I'm not judging you, I'm just curious if your dr suggested the trial along with other options.

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 12/4/2009 5:25 AM (GMT -7)   
I'm curious too about you trying clinical study. I would only use a clinical trial because the other meds are no longer working.
Thats just me though.
Goood luck with your course of action.

Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

New Member

Date Joined Dec 2009
Total Posts : 19
   Posted 12/4/2009 4:03 PM (GMT -7)   
The pentasa is currently working pretty well so when I next see my GE (about 4 months) I will tell him that. He just mentioned the trial to me and said that some patients had been responding very well to the antibiotic therapy and that I could consider enroling in it if I wanted to. He said it was totally up to me if I wanted to try it. I live in Scotland in the UK so not sure what treatments other patients are currently on.

Veteran Member

Date Joined Sep 2005
Total Posts : 517
   Posted 12/5/2009 12:27 PM (GMT -7)   
No not on it ...and never have been... but as I have read, doing antiMAP after the typical crohns meds would be the incorrect sequence. so go ahead and do it now. best of luck and would like to hear after 3 months how it helped

Veteran Member

Date Joined Mar 2006
Total Posts : 1034
   Posted 12/5/2009 12:36 PM (GMT -7)   
since you were just diagnosed, you are in a very fortunate position to give dietary methods a real good try before getting hooked on meds like the rest of us. seriously, check out the makers diet, the specific carbohydrate diet (scd), life with bread, elemental diet. they are all difficult and require you to make major adjustments in your eating habits and cook a lot of food and self discipline due to changes it makes to what you eat and the initial detox affect, but imho it is WAY worth it. if you stick it out for a few months, right now, imho, you have a very good chance of not becoming dependent on meds and thus experiencing a slew of long term side effects, like osteoporosis, anemia, extreme weight gain, lupus, etc etc etc. especially since you said you have a "mild" case, this could be your ticket to regaining your health sooner than you think instead of adapting to a new "normal" like the rest of us did. now meds do have their place, but imho, if you can control it without meds your body and your mental attitude and your life and your emotional state will be TONS better. most docs are oblivious to or discredit dietary means, so you'll have to do your own research. this forum is a good start - do searches on the diets i suggested to read the threads.

once you are done with your antibiotics, do a course of probiotics for a while to reseed your gut as the antibiotics will have killed it all off.

best of luck!
Crazy Harry

Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

New Member

Date Joined Dec 2009
Total Posts : 19
   Posted 12/5/2009 2:47 PM (GMT -7)   
Thanks crazyharry, will look into the diet info. Will keep everyone updated on how meds/diet helps.

Regular Member

Date Joined Nov 2008
Total Posts : 348
   Posted 12/5/2009 8:59 PM (GMT -7)   
Here is a GI talking about that treatment with 3 antibiotics:
27m - Dx January 2005: UC/Crohn's
Humira, Entocort 9 mg, Asacol 4 x 3, Flagyl 250 mg x 3
Imuran failed

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