Questions After 6-weeks of SCD and Reduction of Meds

Introduction:

I am a 61 year old who has been experiencing UC for the past two years. In the past I have had some digestive problems, but the onset of the REAL UC came when my husband and I sold everything and moved from our family and friends to Paradise…otherwise known as Hawaii. I feel fortunate to have found a good GI here, but in March 2013, I had a severe flare. I have been on presnisone, then budesonide along with Asacol. I started SCD diet in July 2013. Stress definitely affects my UC.

Some more about me:

I work long hours for a high-tech company..been doing this over 25 years. I love my job. I sew home decor, garments, costumes and quilts. I am a voracious reader, especially of mysteries, thrillers and biographies. I play piano and sing in choirs. I love the beach!

Symptoms:

The Prednisone plus Asacol provided nearly complete relief, but once I came off the Prednisone, the frequency, urgency, gas, mucus and bleeding started. Then I was on Budesonide for another two months, decided to try SCD and felt wonderful. I tapered off the budesonide, with my GI’s approval, and am finally off, but inflammation is returning, as are the gas, mucus and frequency…only a little bit of bleeding. My joints are extremely painful. I have gone back to the intro diet, in hope that I will improve again.

Questions After 6-weeks of SCD and Reduction of Meds

1. Has anyone else had a setback after removing Budesonide? I had progressed to about phase 2 of SCD (not all the foods) and now am back to ground zero again…and discouraged.
2. The doctor does not want the inflammation to build up too much. He says my UC is probably genetic, as I did not have any infections, parasites or toxic reactions, and it has come on late in life and there is family history. His suggestion is to move to 6-MP to stabilize. Has anyone gone through this same scenario?
3. I have been extremely faithful to the diet. I have made and eaten the yogurt, and mainly eat the SCD soups and grilled meats or baked meats. I have been overweight for years, but I am losing about 2.5 lb per week. My doctor says that is fine, as I am recording my intake and he can monitor me. I have eaten the homemade pearsauce and applesauce, but I don’t seem to tolerate more than extremely limited amounts of honey or juice or fruit sauce. Is this normal 6 weeks into the diet?
4. I am struggling to work, keep house, do laundry, plus all the cooking. I feel really tired. I did have the “speed” effect of prednisone and budesonide, but I am struggling now for the last week with just taking the Asacol. Will this improve?
5. I have no energy to exercise…even walking. Does anyone have ideas? Will this last long? I used to walk about 3 miles per day,and at my age, I need the weight bearing exercise.
6. Most posts I see are from young people. Are there others my age who have suddenly found themselves in UC world?
7. I am so thankful for this site and Adam’s dedication. I was feeling so bad that I did not think I could do the SCD…but I am inspired by the stories and Adam’s plan for the diet phases and the cookbook have really been helpful….the specific descriptions of When a recipe can be used has been a Godsend. At the beginning, my brain was too foggy to figure things out for myself. So thank you all for your contributions, encouraging words and organized approach to breaking this cycle in my life.

Medications:

Asacol-helped in the beginning, but I flared anyhow. If I forget to take it, I notice that I feel the rumble, so it helps.
Prednisone-stops the flare, but caused me to just fall, not faint, not be dizzy, but falling. I hurt myself pretty badly in three falls. Very difficult to taper off – it took several months.
Budesonide- stops the flare slower than prednisone, but had fewer side effects for me. I had terrible night sweats and hair loss. Got the inflammation under control, but inflammation recurs after tapering off. Had to taper off in 3 mg increments

written by Barb H

submitted in the colitis venting area