Conflicted

[CharlieK]

I was recently dx with Crohn's after a routine colonoscopy. In reality I have been having diarrhea issues (many times with blood and urgency) for well over 2 years. I went to my regular MD 2 years ago and she prescribed a med that didn't help. I then tried probiotics which resolved my symptoms about 85% for about a year, then it didn't help anymore. Anyways, GI Doctor put me on Lialda and Budesonide and then Imuran. About 1 month into the Imuran I had a terrible bout of bloody colitis and shortly after ended up having extremely low hemoglobin and needed a blood transfusion. I was taken off Imuran and they did a TB test to start me on Humira. My blood test was 2 weeks ago and I never heard back from the Doctor's office - I know the test was back the next day as I could view it online. I haven't called the GI office because I am not thrilled with being put on another scary drug and am not really liking the level of care I am receiving. Plus - I changed my diet a week ago (eliminating grains, cereals and added sugar) and my symptoms have disappeared. I now have normal stools and no blood or discomfort at all - like a miracle. Have not been this good in over 2 years for a whole week. I know GI Doctors are generally of the belief that diet has nothing to do with Crohns, but so far I am begging to differ. I know it will take more than 1 week to tell and I also switched to a different probiotic and maybe it is just that the Lialda and Budesonide have gotten things under control (have been on both 2 months - they have helped some, but not at all to this degree). So not sure where to go from here - I probably need another GI Doctor, but do any of them actually listen to patients and be willing to accept that maybe diet might help/work? Do I just wean myself off the meds and see if I stay well? Afraid the Doctors will poo poo (no pun intended!) my feelings of not wanting to treat this with meds my whole life if diet is helping. Anyone have similar experience? Any thoughts? New to this whole Crohns' thing - by the way, I am 52 years old so have not had these issues my whole life.

 

[DJW]

Hi and welcome. I'm glad symptoms are clearing up. There is a lot to take in with this diagnosis.

My thoughts:

Don't come off the meds without the doctors instruction.

The cause of crohns is complex. Diet can help eleviate the symptoms but it isn't a cure. Elemental diet in kids with crohns is quite successful in bringing remission; if my memory is correct.

It is also possible the meds you are currently on have worked to put you in remission.

The tricky thing with crohns is the amount of distruction and complications inflammation (under treated or untreated) can cause. If you're not comfortable with your GI doc can you get a second opinion from another doctor.

Sending you my support.