can't get into remission

I have been taking the advice of so many of you for years! For 19 years I have had UC, and years ago, I could be in remission for months or years. However, now it seems with teenagers, and College the stress level is through the roof, and I can't seem to get this disease under control for more than a month at a time. Like I have read, the drugs that have worked in the past, either take longer to work, or don't work at all....such as Uceris, 6mp and Asacol. Prednisone works, but in reality it is a horrible drug that I would prefer to stay away from as much as possible. My Dr. told me to take Lialda religiously everyday after my last flare. The side affects were achiness, water retention and headaches, so I didn't take it everyday. I am now in another flare, and take 2 Lialda per day, but it doesn't seem to be having any affect on my symptoms. My colitis is down low, so no chance of surgery without being left with a colostomy bag. :( I take an 80 billion high quality probiotic everyday. Anyone ever had any luck with an allergist testing for food allergies as a possible trigger? Thanks so much for any suggestions!!!!!

Currently taking, Liquid Vitamin D, Vitamin B complex, garlic, Gas Stop (a whole foods product), Lialda,

Rectal mesalamine plus Lialda should get you where you need to go. It may be that you need a steroid enema to get the remission started, but after that you should maintain with rectal mesalamine plus oral mesalamine.

Have you taken an omega-3 like flax seed oil? That might help as well. And you might consider dietary mods like eliminating lactose, or gluten, or both, or even casein.

weren't you having some issues mr poop man ? did you get those resolved ? or am I thinking of the other poop man ?

The biologics are the proverbial sledge hammer approach. Try rectal mesalamine first.

Everyone's different with regard to diet. Essentially if you are motivated you should try eliminating the common problem foods and see what happens.

Your undertreating at this point. Two Lialda a day is maintenance dose not the amount to be taking during a flare. I agree that rectal meds would be beneficial at this point.

You said that the side effects of Lialda were achiness, water retention and headaches. That sounds to me more like the side effects of prednisone. Are you sure it was the Lialda and not the prednisone that was giving you those side effects? If I only had a dollar for every person who posted here who had gotten into remission, quit taking their meds that worked, and are now flaring again, realizing that those same meds don't work or work as well anymore, causing them to have to consider harsher and harsher meds and treatment options. If I were you I would take 2 Lialda twice per day as well as doing rectal meds. Have you retried the 6MP or Imuran? They can take a few months to take effect. You may want to try a quick round of pred for about a month and hope that when you are tapered off the Lialda and rectal meds or 6mp or Imuran will keep you in remission (if you take them religiously). The trick is to only take the pred for a month. If it works it works, if it doesn't you resign yourself to getting off it anyway.

Food allergy testing is a complete waste of time. Some foods can have an effect on UC but you need to figure it out for yourself by trial and error. Food allergy tests often show you are allergic to all the foods you eat and not allergic to any of the foods you don't eat. Are you sure your probiotic is helping? Some probiotics work in some people but the very same probiotic can make others worse. I took an 80 billion probiotic once which made me immediately worse.

Canasa is a mesalamine rectal suppository.

soystud said...
weren't you having some issues mr poop man ? did you get those resolved ? or am I thinking of the other poop man ?

Mr soyman, I had questions on dosage and frequency. I'm going to get a fancy blood test (by Prometheus labs) in a few weeks that should provide answers to my questions. The remicade has put me in the best condition I've been since before I acquired uc. And I just want to make sure it stays that way with no return of symptoms between infusions (saw some blood and increased urgency). I posted a while ago about that worry. Alas no remission yet, never had one, ever.

You got it soy, like a $2,100.00 blood test that my insurance is 100% guaranteed to deny in-full. Prometheus Labs will appeal to my insurance company on my behalf 2-3 times and then charge me like $250.00 maximum (6 months later or how ever long the 2-3 appeals take lol).

Neesie466, two and a half years of uc for me. I don't hold a candle to you though: 19 years wow.

neesie466 said...
How long have you been suffering with this awful disease that you have NEVER been in remission?? I feel bad for you....I really do...it sux :( Good luck with the blood test!

As depressing as this sounds, you have some good company here... People are willing to help.

neesie466 said...
...is Imuran like Remicade, etc?

6mp and imuran are both immunosuppressive medications with a slight difference in how the body processes them.