Confused

Meet Lynne:

I am a 49-yr-old female and was diagnosed with Ulcerative Colitis seven years ago. I haven’t seen my dr in about 4-5 years. I haven’t need to.

Some more about me:

I live in Minnesota. I think too much. I’m an over thinker.

Symptoms of Colitis:

I am currently in a flare and have blood & mucus in my bowel movements, which are partially solid. Thankfully, I don’t have cramping (never have) and I don’t necessarily have urgency. I am not on any medication. I also have a burning tongue – a strange symptom I have not had before. Sometimes my throat burns, too – maybe even down into my esophagus.

Confused

In the beginning, I followed the Maker’s Diet. I’m wondering if anyone else has gone that route? Also, in the beginning, I took Asacol until it caused inflammation in my liver. Then, I used the enemas instead. One thing I noticed, early on, is that I would get better after I flushed my system. I needed a 2nd colonoscopy, & I got better after I drank the stuff & flushed my intestines. Another time, I was having some symptoms when I got a stomach flu & had diarrhea. I was afraid this would make me worse but, strangely, I got better. MUCH better, as in “normal”. Almost 4 years ago, I had a bad (for me) flare. I told my dr how I’d improved greatly after flushing, & he agreed to let me experiment. He prescribed me golytely. I drank it, flushed, & got completely better. I began to think my “UC ” was bacterial related. I was in remission for almost 4 yrs until now. I even went thru a divorce & ; got remarried -big life stresses & transitions- without flaring. I could eat/drink anything I wanted. Now, suddenly, I am flaring again. Of course, I decided to flush. I used the gatorade/miralax over-the-counter method. I didn’t get better – maybe worse. One week later, I did a salt water flush. Still not better, which makes me very sad. I thought I had a good option with the flushing, as it made me completely better numerous times in the past. Why not now?? Why? Is there something unique to the golytely that worked? This is very confusing to me. I’d sure appreciate any thoughts anyone might have on this flushing issue. I take quality probiotics 3 times/day to replace any good bacteria I may have flushed out.

I am also confused about my burning tongue, etc. Do I have GERD? Crohn’s & not UC? Do I now have an allergy or some food sensitivity? Sulfites? Gluten? The Maker’s Diet says to eat one way. The SCD says another. All options seem so restrictive. I’m not sure which way to turn. :(

Medications and Supplements

I am determined not to take medication. Asacol caused me liver inflammation, & I believe the next level of meds is way beyond what I need & has dangerous risks that come along with it. So, I’m trying to take care of this on my own. I don’t even want to go to the doctor, because I don’t want them to scare me by suggesting strong medications.

I am now taking probiotics, multivitamin, iron, vitamin B12 … all a desperate effort to get better & be as normal as I was just 2-3 mths ago.

written by Lynne

submitted in the colitis venting area