New w/ questions...losing hope.

I'm no expert, but the a few things came to mind.

Have your tried switching to Colazol instead of Asacol? Some people do better on that and vice versa.

Have you tried doing Rowasa twice a day? When my flare is bad and nothing seems to be working, my Doc has told me to increase my Rowasa to 2 times a day (morning and night). It really helps.

Depression is common, you may want to talk to your doctor about meds for depression. I have also heard that anti-depressants can help with the symptoms.

I see you are taking a calcium supplement. I would speak to your doctor about your concerns. Have you had a bone density test recently?

I wish you well.

Colon Pow - love the name! Why does the doctor not want you to exercise? Most people feel a lot better when they do exercise. Asacol also caused my hair to fall out - switched to Colazal and it stopped. I know it's easy to get depressed, especially when you are on prednisone and not comfortable with the way you might look, but things will get better once you get this thing under control. Remicade was the only medicine that allowed me to get off prednisone. I love it. I plan on riding the Remicade train as long as it keeps working. I've never had any side effects from it. Personally, if my choices were surgery or long-term prednisone use and nightly enemas I would opt for surgery, probably the j-pouch. The more I read about it, the more I've come to realize surgery it's not the end of the world and it really improves the quality of life for a lot of people. Good luck!

Welcome to the forum. I’m sorry you are in a flare. I have never heard of C. Diff being diagnosed with a colonoscopy. It is a bacterial infection and is diagnosed from a stool sample. I have been tested for it many times. Last summer I tested positive for C. Diff for the first and only time. I was prescribed Vancocin, a stronger antibiotic than Flagyl. For some people Flagyl is not strong enough. My symptoms only slightly improved after the Vancocine and returned to the same level about a month later. I have been tested negative several times since then. Don’t necessarily expect improvements after getting rid of the C. Diff., especially if your UC is active.

It sounds like you still have several options before Remicade. There are many different types of 5ASA meds besides Asacol that you could try. There are also immunosuppressants such as Imuran or 6-MP. 7 infusions of Remicade never helped me but I had no side effects from it.

I have never been into regular exercise but since my UC I have had much less energy, especially with my UC related arthritis. A small amount of exercise totally wipes me out.

I don't get the pain too much anymore, but when I do, the doc gave me a low dosage (10mg) of Diazapam. It seems to relax the muscles, and I don't have the effects of constipation which some of the other pain relievers seem to have.

Colon Pow, stool sample taken from the colonoscopy? That’s a new one on me. I don’t see how there could be enough stool left after being cleaned out by the prep. Whenever I’m asked to bring in a stool sample on the day of the scope I’m always asked to take it before I start the prep. I wonder if they tested for C. Diff. from the biopsies. Never heard of that but maybe it is possible? Don’t try another antibiotic for your C. Diff unless you are tested positive for it after you complete your Flagyl.

I tried Asacol, Pentasa and Dipentum, all 5ASA medications and they all increased my bowel movements from 4 to 6 up to well over 20 a day within a few days. They also gave me terrible joint pain. After stopping them my symptoms would go back to normal within a day.

Many UC patients do not absorb vitamin B12 properly and need injections. I get an injection every month and I’m tested for B12 levels every 3 months by a blood sample. Folic acid is supposed to help the body store the B12.

A good weight training program will help combat bone loss from the pred. Even when I was in a pretty bad flare when first diagnosed, I still walked, lifted weights and did yoga.

I'd encourage you to get started on a probiotic and look into dietary manipulations to help get your flare under control.

Hi Beth,
Here are my kidney symptoms: + blood/protein in urine, flank pain, frequent urination (at times).
Thanks for your response.

Colon Pow - how much proteins are in your urine and have you gone to see a Kidney Specialist? I was at 9grams a day my last check up, I have minimal change disease (it is 'reversible'). I also had hematuria (blood) but that is bengin (it's familial and is ok).

Hopefully the insurance company will get back to you right away. Good luck and keep us all posted.

I really sympathize with your story, as I was also very keen on health and overall fitness prior to my initial flare about a year and a half ago. UC initially hit me when I was really peaking in many ways in my exercise "career". I also would exercise about 4-6 times per week, probably totalling about 15 or more hours per week in the gym hitting the weight with a little jump rope and elliptical machine thrown in. And, like you, it hit me and it hit me hard. It was very depressing for me inititally as so much of what I loved to spend time with was seemingly taken away from me: the gym, eating well (how could I eat when everything made my symptoms that much worse?), school, and work. Eventually my perspective on the illness changed, as I know that the important things in life, primarily my knowledge, experience, and coginitive abilities, are not taken away from me as a result of this disease. And I know that eventually I'll be able to get this disease under control for the long-term and make a comeback in the gym... and eventually surpass even my previous physical limitations.

In regards to how much to exercise, it's really up to you. Nobody's judgement is better than your own. As a self-proclaimed fitness fan, you are more in tune with your body than the rest of us. Do whatever you feel comfortable doing and be honest and disciplined. If I can pass on any advice I'd say that you shouldn't let UC keep you away from an active lifestyle. It's easy to shy away from previous activities that you used to take pride in due your abilities. In other words, if you considered yourself a good tennis player and have concerns with hitting the court and not being able to perform as well as you did in the past, try to remove those concerns. You're not always going to be on top of the world, and setbacks happen. It's generally (of course there are exceptions) better to do what you can than not to perform at all simply because you can't perform as well as you used to be able to. I'm not sure if these thoughts have crossed your mind, but if they have this is the best advice I can give you.

All in all, it's better to be active to some degree than to be inactive. I'm sure you're aware of this, but sometimes it's hard to act on this knowledge when in the midst of a flare: it's easy to make excuses to stay and home and be lethargic.

Robert

Colon Pow, you want to know if you can exercise? Well lets see, I'm a CAT 3 cyclist and took 16th in my state in mountain biking. I do martial arts and I box. I've won bench press contests before I got into biking. The training that it takes to reach those goals are enormous. So yes, you can exercise. As far as Remicade goes, I couldn't have done it without it!!

Colon Pow - glad you are starting remicade, keep us posted!!!

That is my next step if the Azathioprine does not help.