1. You are in a serious flare.
2. You need more aggressive treatment. Certainly a higher dose of Asacol, perhaps different or additional medications.
3. I understand your specialist care is rationed. I know it's a drag, but you need to be seeing the GP often enough that they all know you. If they change something and it doesn't work, go back.
4. It's unfortunate that you decline to use enemas, because those could help a lot with the urgency. The inflammation in UC alway starts in the rectum, and that is the last place that heals. I understand they're unpleasant, but if they help, they're a lot better than spending your day in the loo in pain.
5. The more you know about
your condition, the better you can advocate for yourself. Read the information here, on the Crohns/colitis foundation website, books, etc.
6. Generally when you're in a bad flare, there's no point worrying about
what sets you off. Everything sets you off and nothing sets you off. While some of us can identify foods or activities that trigger symptoms, flares can also come with absolutely no trigger. The hardest part of this diagnosis is for us to come to an understanding and acceptance that we have a chronic condition. The only absolute cure is surgical removal of the colon, which can have its own challenges. Medications can help us, but we have to be dedicated to taking them every day. As your flare recedes, you may begin to be able to identify some things that seem to always make you feel worse. When you're going 20 times a day, there's absolutely no way to tell. Right now you need to concentrate on medical treatment to start getting things under control.
Good luck, and I hope you feel better soon.
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal, Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
Co-Moderator UC ForumPlease remember to consult your health care provider when making health-related decisions.
Posted 1/3/2009 9:56 AM (GMT -7)
I agree with Judilyn, you need to get more agressive with your treatment or your health will continue to delcine. UC will not go away; you need to be vigilant. You also need to spend more time learning about UC. This is a life long disease characterised by periods of flares and periods of remission. Right now you are in a flare and are not doing all you can to improve your situation. You need to start back on rectal meds, sometimes it can take a month or more of treatment to see improvement with rectal meds. You need to work with your GP to be on a regular schedule with your GI. With your symptoms you should be in your GI's office weekly until your symptoms improve. You also need to be very open and honest with both your doctors. I know it's not easy to talk about these things but they can't guide your treatment unless they know everything.
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
Currently it is Thursday, December 13, 2018 5:56 PM (GMT -7)
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