Posted 12/16/2011 1:20 PM (GMT -6)
I was diagnosed with ulcerative colitis (UC) when i was 27 while in grad school. After a quick diagnosis by a local GI and barely an explanation, i decided i needed another opinion. UCLA confirmed my diagnosis as ulcerative colitis. So after a loss of 20 lbs and countless hours spent on the floor in agony, i decided it was time to follow my GI's orders to take an aggressive approach: take Lialda,prednisone, and mesalamine enemas. It was immediately effective. However, i continued to have relapses..I can write a book as to my struggle but i honestly do not have the time right now. I feel that i must help you right now.
After 2 years of constant relapses and high doses of Lialda, prednisone, and 6mp (mercaptopurine), i finally found my way. You will too.
First, be sure to visit the Chrohns and Colitis foundation website or consult other legitimate sources to be sure you are taking all the necessary steps in diagnosis. After you know for sure you have it, the GI specialist might follow the usual progression which is to try a 5 ASA medication such as Lialda or Asacol. Then if that does not work, combine it with a daily enema. If you are very severe (such as myself) they may combine the previous 2 with a steroid such as prednisone, or maybe a steroid enema. If those do not work they may combine the 5 ASA with 6mp, then gradually reduce the prednisone until you are completely phased off. So anyway, once you have another relapse, the GI again may raise the 6 mp. At one point I was on 100mg of 6mp and it still did not work after so long. And i had no appetite, low energy, and was depressed. Point it, this was my long and painful war with many battles.
I have extensive experience with UC and powerful UC drugs. I have researched this delightful subject, bought textbooks on irritable bowel disease as well, and tried many things including the"holistic approach." I have a Masters degree, work in the medical field, and therefore, know all about efficacy or effective outcomes. But i was desperate.So yes, i tried even foolish approaches with no efficacy. If you have been cured with approaches that have no efficacy then i challenge you if you truly had UC. Then i challenge you to give me evidence that has validity and reliability. I am talking internal and external validity. And replicated evidence across participants and with different researches. If you don't even know what this means then don't waste your time in challenging me =)
Here is what worked for me: When my GI put me on Lialda x4/day + melamine enema, i slowly attained remission. However, I had to figure some things out on my own. I had to maintain a consistent medication schedule. I had to break the Lialda and mesalamine enema doses up: i took 2 lialda when i woke up, took 2 lialda at 2pm, then a mesalimine enema at bedtime. I developed a good professional relationship with my original and local GI. I told him that my cousin is on Asacol and taking it x3/day. I told him that maybe i must have my mesalamine (the compound in lialda and asacol) broken up throughout the day. He then said "why break it up if the whole point of Lialda is to do it once a day and Asacol and Lialda have the same compound mesalamine anyway?" Then i told him, all i know is that the Lialda is more effective when i break it up to two in the AM, one in the early afternoon, one in the later afternoon, then melamine enema at night. So then i told him that my cousin is doing well on Asacol and i would like to try it. He then wrote me a prescription of Asacol, take 4 pills, x3 a day. That's a total of 12 pills yes. Incidentally, the reason Asacol must be taken so often is because it does not have the same extended time release that Lialda does. Furthermore, i learned that i must take Asacol when i wake up, take them at 2pm, then take them again at 8 or 9pm.
I think Lialda is a great idea for people that have less severe UC. But i am only generalizing here. For people like myself that have severe UC, i believe that Asacol has more efficacy. It worked for myself.
But i must also mention that after 2 years of charting my food and liquid intake (on and off), i learned the food and liquids that take me out of "remission." I kept a dietary journal. This was absolute key! You must keep track of what you consume. MUST! Everyone has a unique GI tract. Everyone responds differently to what they consume. For myself, i cannot consume caffeine. On top of that, i cannot consume either regular coffee, or decaffeinated coffee on a consistent basis. Why might you ask? I don't know. I assume it is due to the acidity. I do indulge once a wk with a cup of decaf coffee, coffee being my true love, but this is when i am in a "remission"(more about what a true remission is later). Also, i reduced fat intake, did not consume too much fiber, stayed away from gassy foods..etc. I recommend an awesome book: "What to eat with IBD." It will educate you on fibrous foods, gassy foods, what to be wary of, etc. But again, make yourself a dietary journal! keep track. And honestly, you may not ever obtain remission consuming caffeine on a regular basis. So many people with IBD will say the same thing. I need to conduct a study on this for sure. Anyway, start drinking morning decaf tea and/or just do a morning protein shake. Protein shakes give me so much energy! I am now more alive then i ever have been because of dietary changes. Now again, be sure you keep track of what you consume and your reaction to it. Empower yourself now!
For the present, i am still on Asacol after one year, and my symptoms are under control. My bowel is almost "normal". I do not believe i have obtained a "true remission" yet. There are different forms of remission. One is the type that basically, the patient reports that he or she is doing fine. However, a true remission is known only after a colonoscopy done. I continue to have little "episodes" every few weeks where i may get carried away with certain foods or start consuming caffeine on a regular basis. But i have such command over my bowel right now and such experience with my own signs and symptoms, i immediately know how to "fix" it. I know that if i must go to the bathroom more than twice a day and i am very gassy, i must restore the balance immediately. I can restore this balance within less than a day. Fortunately my medication is very effective as long as i maintain a consistent schedule in taking them, and i know how to change my diet to work in concert to return the proper balance to my colon.
My goal is that i achieve a true remission. I am due for a colonoscopy in a couple of years. By then i hope to achieve a true remission. As for you, my goal with this long message is that you too will learn about yourself and how to achieve control. i hope that you will learn about how different food and drinks may affect you, through your own experience and studies. And i hope that you begin a dietary journal to empower yourself and see what really works for you.
Thanks for reading this. I hope that helps!