My name is Debbie. I’m 26 and live in Baton Rouge, Louisiana. I own a children’s entertainment business (I’m a professional clown, face painter, and balloon artist). I was diagnosed with UC in 2005 just after graduating high school.
Some more about me:
I love yoga, hiking, and all types of art. I am a creative and silly soul, and have a hard time taking anything too seriously (which is why I make balloon animals and paint children’s faces for a living).
I am determined to live life to its fullest and enjoy every single day!
Fatigue and some mild urgency. THAT’s IT! WOHOO!
Looking for Advice on Natural Remedies and Support Groups
UC turned my life upside down. I had just graduated high school as a confident, athletic, ambitious teenager. Over the summer I had extremely painful stomach aches that eventually lead to a colon so inflamed I couldn’t take a sip of water without running to the bathroom. I was diagnosed with Ulcerative pan-colitis. I honest-to-God didn’t know the definition of a “bowel movement”. I started college 20 pounds underweight, with a handful of pills, and a fear of food. You could say it was not my ideal college experience.
That was 8 years ago. Since then my colitis has been kept in check with azathioprine and 5-ASA drugs. Every once in a while I would have a huge flare, be put on a really high dose of prednisone, then switched to a different 5-ASA drug. After 5 years I switched doctors, and starting managing flare ups with mesalamine enemas instead of prednisone. That worked for 3 years! Until one year ago…
I had a very bad flare up in just the last few inches of my colon and resorted to Remicade. I have been on Remicade for 9 months now, and I feel like it is not effective. It is, however, effectively suppressing my immune system. So much that I keep getting infections that require antibiotics! (talk about a vicious cycle!!)
My doctor told me that having the last few inches of my colon give me so much grief is common. That by the time your medication gets to the end of your colon…well, there is nothing left to be absorbed by the end of your colon! And then patients doubt they are controlling their UC at all because every time they use the restroom they see blood. That is exactly how I’ve felt the last 9 months – doubtful.
I just told my doc that I am done with Remicade, and I do not want to replace it with the next drug. I think I can find more effective ways to naturally treat the last few inches of my colon. He told me not to be surprised if I have a bad flare up in about 10 weeks, so I am preparing myself!
During my last antibiotic-induced flare-up I juice fasted and it was FANTASTIC! I felt no cramping, no gas, no pain. I stopped bleeding in less than 2 weeks. So I am prepared to do that again (with lots of cabbage, which I read is great for ulcers). I also purchased IntestiNEW, a powder with L-Glutamine (like Bev suggested!!) :) I have yet to research her other suggestion of Astaxanthin, but I will probably buy that or Turmeric pills (also a natural anti-inflammatory) to have ready as well.
I also want to try a probiotic enema. I already take a great oral probiotic, but I want to target that problem spot in the last few inches of my colon. I asked my doc if I could just use my probiotic like a suppository but he looked at me like i was crazy (I’m thinking, “you asked me to stick all sorts of things up my butt!! enemas! suppositories!! your hands!!! a camera!!! And now that it’s my idea to stick something up my butt,*I* am the crazy one? Mhmmm.”) So I bought a probiotic in powder form, and I am going to buy an enema kit :) Has anyone ever tried something like that? What was your experience with it?
Also, I think I would like to start a support group in my area for teen-30 year olds with UC. When I was first diagnosed my mom took me to a support group and the youngest person there had to have been in their late 40’s. Honestly, it was depressing and I had a hard time relating to them. I would have really appreciated some advice on how to talk to teachers and employers when I was flaring, and how to deal with frustrating responses from peers.
Any advice on how to start a support group would be great. Like, how do I spread the word – put flyers in the Gastro clinics? Tell my doctor to hand out my phone number?? maybe make a website? I feel clueless.
Thanks for this website. I generally avoid researching and reading stories on the web because it’s overwhelming and depressing, but not here. Everyone on here is amazingly supportive and positive! So thank you. I would also like to add that I have been very blessed with a VERY supportive family and friends, and I like my current doctor. He surprised me with his…well, I don’t know that it was support, but more like…lack of criticism/objection to my decision to stop Remicade and focus on diet and natural remedies :) He pretty much said “Go for it, and let me know what happens!” :) So I’m going for it!
I have been on Azathioprine since I was diagnosed. I have gone through Asacol, Lialda, and have now been on Apriso for a few years (I feel like I left one out?). I am very happy to be seeing a doctor who is against using prednisone for flare ups. I find that mesalamine enemas work pretty well for me when I use them at the first sign of intestinal upset.
I take Garden of Life’s Primal Defense Probiotic, and Calcium (to make up for years of aggressive doses of prednisone)
I am quitting Remicade after 9 months of treatment. I hated it more after each treatment because I had to take IV Benadryl in case of allergic reactions, yet I still experienced mild allergic reactions every time! Also because every cold I got turned into a sinus infection. And did I mention the blood in my stool every other week? Yeah buddy.
Over the years, I have gotten better at noticing the signs indicating the start of a flare up, and acting immediately. I’ve saved myself a lot of grief by nipping them in the bud. Over the last year I’ve opened myself up to the ideas of more preventative measures, like giving up alcohol completely, stricter diet, and now – natural remedies and supplements. For the first time, I am excited (and hopeful) about trying new things.
written by Debbie
submitted in the colitis venting area