Trying to Make Sense of All This

Intro:

I’m Andrew. I have a degree in criminal justice. I am a family man and my last jobs were in the field of armed security.

Some more about me:

I am very much into physical activities including exercising and sports. I am from the bay area of California and enjoy spending time outdoors. When I have a lack of energy I spend my time reading or learning something new online anything to keep me focused.

Symptoms:

Weakness from anemia, odd dull pains in lower abdomen every couple of days.

My Story:

Hello everyone, I was diagnosed with UC on February 2011. I remember I dealt with the unknown for about four months prior to being diagnosed because I didn’t have medical insurance at the time. Every day was worse than the previous mainly due to stress and continuing to eat damaging foods. The past couple of years has been the definition of trial and error for me as I try and figure out the do’s and the don’ts. The good news is that I have my diet figured out at this point but over the years I have taken more than a few falls mainly due to experimenting with different foods and catching a few illnesses. Most of my diet does include SCD legal foods with the exception to bread and a few others.

I have never taken any of the normally prescribed UC medicine with the exception of prednisone after my colonoscopy. I am terrified of them after reading so many reviews. During one of my many ER visits prior to being diagnosed I was prescribed Carafate and prevacid because it was assumed that I had an ulcer. When taking these two prescriptions combined with my daily diet (SCD Almond/egg pancakes, turkey sandwiches, and rice with organic ground beef) I never bleed.

Every time I ask a Dr. if it is ok to continue to tak after three years I’m always told it is fine. It almost seems at times that I have a case of colitis without the internal bleeding unless I break my diet rules. I also taked ultimate flora critical care 50 billion probiotics.

During the time period of being diagnosed to the present day I have had major flares that have taken their toll on me resulting in 25lbs of weight loss and vitamin deficiencies along with anemia. I am confused by the fact that I have been eating the same foods back when I was 165 but now that I am 145 I don’t gain weight at times I think I am loosing weight. My biggest concern is a change in my stool which does not consist of any bleeding or diarrhea but the solidness of the stool has changed to where it breaks apart within seconds of hitting the water. I’m very puzzled by this as my diet has not changed I have recently become aware that I am deficient in vitamin d and am wondering if this maybe why. Any insight on the matter would be very much appreciated.

Thanks!

written and submitted by Andrew C. in the colitis venting area

Ask Adam

“Hi Adam, I was wondering what you think about the idea of completely avoiding Dr. prescribed meds?

Also how often should a colonoscopy be done?”

Hey Andrew,

Thanks for sharing, and what’s up to the fellow Bay Area Native!

Quick answers to your Q’s above:  I avoid them, and every 4 years should be good if you’re feeling good.  Below, I’ll go into more details…

You have a great question about “completely avoiding Dr. prescribed meds”

Of course in hindsight I wish to have avoided all medications right off the bat after my diagnosis and changed my diet, but that doesn’t usually happen for any patients right when you’re trying to understand your new disease.

As much as I don’t like western medications, I’ve realized I can’t hate them.  That would be impossible for me.

Heck, if it wasn’t for Prednisone several years ago when I had a flare up I wasn’t able to control myself, I may have ended up in the hospital.  And as much as I can’t stand to think about Humira, that exact same medication I know has helped many others all around the world.  I’ve talked with these people, and I know they love that stuff.

Of course it bugs me to no end to hear that certain medications have side effects that can literally cause your skin to peel off your hands and feet.  A doctor prescribed med gave me those fun gifts years ago.   But again, that’s life.  Things don’t always work out perfectly.  But for the folks who use western medications prescribed by GI doctors to treat UC and for those that are having success….AWESOME!.  I think we should all be happy for those people.  They are struggling with UC too.

In the end, I think avoiding Dr. prescribed meds can be a good decision, but you need to have a plan.  And don’t ever completely rule them out.  They may end up saving you someday from some nasty moments.

As for your 2nd question about how often for a scoping of the booty…  Well, again, here’s a question that has different answers depending on which Gastro doctor you ask.

My GI doctor who I think is great told me every 4 years.  He has UC just like I do, so whatever that’s worth to you, take it as you like.

I’ve heard from other UC’ers who say their doctors ask them to have a scope each year.  To me, that sounds like a ridiculous amount of butt probing (which often leads to flare ups mind you).  And I’m just  not so sure there’s any overall longterm benefit to that much colonoscopeeing.  I sure as hell won’t be going back for another round of the big snake annually.

The procedure is great to give you and your doctor a bird’s eye view of the inner walls of the colon, but between the prep, the probing, and the anxiety before and after…I think once every 4 years is probably adequate.

I wish you the best Andrew.  Thanks again for sharing your stories, and I wish you the very best with a full recovery and long lasting remission.  (Stay away from the breads:)

-Adam Scheuer