Some Quick Info About Me:
Hi everyone – I’m Jonathan. I’m 31 years old living in Nashville, TN. I was diagnosed with UC in May of 2011, and have been experiencing varying levels of an active disease ever since.
Some more about me:
I’m married with no kids, and this disease hit me like a freight train. My wife and I enjoy running and my first flare came after a period of heavy distance running. I also had some high short-term stress at work at the time, and I believe the combination of the two caused my UC to surface. After the initial flare, I went a year with only mild symptoms and only taking Lialda. I had another severe flare in August of 2012, and since then I have been on a roller coaster of Meds and severe UC. I tried Remicade in Nov-Dec; 3 Infusions- I had no relief and severe “serum sickness” after the 3rd infusion that landed me on disability for 2 months. I started Humira this week…
My current symptoms:
loose stools and diarrhea. No blood or mucus for now. Rising frequency and high urgency. Rapid weight loss.
Other symptoms I’ve had:
Blood and mucus, severe/massive swelling in my feet and hands (very painful)
Humira, SCD, Low Residue, & 2nd Opinion
After the Remicade debacle, my GI put me on prednisone, recommended Humira, and got me into the IBD Clinic at Vanderbilt University for a 2nd opinion. Vanderbilt has some of the most respected dr. in my part of the country, and I wanted to share some of their advice. My exam at Vandy consisted of appointments with a Psychologist, Dietician, and GI. The GI thinks I have two options, Humira or surgery… I’ve started Humira. She told me that Humira and Remicade are completely independent of each other. There is no guarantee that either will work, but no relation where if one doesn’t work on the other.
I started the SCD diet on Jan 5 and followed it for 6 weeks before speaking with a dietician. The Dietician said that the SCD has way too much fiber to eat while having inflammation in the colon, and can hinder the colon from healing. She suggested I try a “Low Residue Diet” which is almost the opposite of SCD! Less than 13g of fiber, no raw veggies or fruits (except bananas and melons) no grains, only white bread and white rice. Also, 2 ensure “muscle shakes” per day which are high in sugar. She did say it is better to limit the amount of sugar. The SCD was hard to adjust to, but I really enjoyed it after a few weeks.
I’m trying the LR diet for a few days now, and diarrhea is starting again. While on SCD I was having 3-5 soft stools (not D) and sudden/high urgency. Now I’m going 5-7 times with diarrhea and gas, but I seem to have a little more warning now. Also, I’m trying to gain about 20lbs.
My theory is that SCD is a good way to maintain remission, but maybe not a way to promote healing from severe inflammation. Also, I saw a Rheumatologist because of massive swelling in my hands and feet which are part of my UC (I thought it might be Rheumatoid Arthritis) He said that the if it was RA the swelling would not go away on its own (it would last 2-4 days and go away). This turned on the lightbulb for me that my colon is inflamed and will not go down on its own which is what UC means. If I am fortunate enough to find remission, I plan to go back to SCD to maintain.
The psychologist was interesting… our conversation focused on coping with the fact that UC is a chronic disease and needs to be treated as such. I know from my own experience and by reading stories here that we all kind of think this will go away without these medications. I’ve spent a lot of the last 2 years in denial!
Two Questions that I have:
- Is anyone trying a “Low Residue” Diet or spoken to a Dietician about what you should eat? The Dietician told me fiber is like a brush or sandpaper against the colon wall which isn’t good while inflamed. I have read Adam’s book and Breaking the Vicious Cycle.
- Is anyone having success with Humira?
Where I want to be in 1 year:
In remission and discussing when to stop Humira. I believe that remission can be maintained through lifestyle adjustments, but I’m not convinced that remission can always be found though lifestyle changes alone.
I know this website promotes natural treatments for UC which is what I want. I was very hesitant about starting Humira, and I really, really hope that it will work and I can stop taking it after a year.
Other Meds I’ve tried:
Prednisone, Imuran, Remicade
written by Jonathan
submitted in the colitis venting area