Posted 11/26/2007 4:34 AM (GMT -7)
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.
Paul
Diagnosed in 2000 at age 43 with UC extending half way across transverse colon.
Allergic reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Currently in Abatacept trial - waiting for remision
 

Posted 11/26/2007 7:29 AM (GMT -7)
I exercised (20-30 miles of walking/hiking per week) with my last gigantic flare. The only time the GI held me back was when I was having over 40 episodes of bloody diarrhea per day. Other than that he felt exerise was good for UC patients and encouraged it. Just bear in mind that exercise will increase motility and maybe that is what your doctor is concerned with? In my early years of UC I was prescribed folic acid. I think it was because I was in the child bearing years and even though I never wanted to have children the doctor prescribed it anyway.

Sue
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
 

Posted 11/26/2007 8:15 AM (GMT -7)
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.
Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 

Posted 11/26/2007 2:55 PM (GMT -7)
I never heard of not exercising, now I have been too tired when flaring lately and have put on 5 pounds in almost 3mos of pred. Also, I second taking cal + vit D 500 mg 3 xday and fosomax 1x week (that's what I take). Also, I take 600mg of potassium 2xday to help w/muscle cramping.

What is going on w/your kidney? You mentioned Kidney symptoms? I have kidney problems that I belive are from taking the 5ASA drugs and am curious if yours are the same? Also, you should be having urine tests checking for proteins if not already.
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

Posted 11/26/2007 5:51 PM (GMT -7)
Hi Beth,
Here are my kidney symptoms: + blood/protein in urine, flank pain, frequent urination (at times).
Thanks for your response.
UC diagnosed 2002 (pancolitis)
Flare lasted 3 months
remission for 5 years
Recurrence Jan 2007
+ C.Diff (rt colon), Nov 2007 (tested neg all prev. times); left colon-severe u.c.
Asacol 1600mg three times/day
Prednisone 40mg every am
Mesalamine Enema (1000mg) @ bedtime
Flagyl 250mg 4x day
Bentyl 10mg 2-3 caps as needed
Calcium/Vit. D
Haven't decided which probiotic yet!
 
 
 

Posted 11/26/2007 9:38 PM (GMT -7)
So sorry you are having such trouble. I have been in a flare for 8 months and just started Remicade. Pretty much a wonder drug. Very expensive and the insurance does not always pay however when you are that miserable it is time to consider Remicade. Also stopped the Asacol and that was a huge difference in how I felt. Much better without that drug.
Hope you feel better soon and Good Luck
Posted 11/27/2007 9:19 AM (GMT -7)
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).
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

Posted 11/27/2007 7:44 PM (GMT -7)
Momma D - I'm hopefully starting Remicade next week. Had my TB test today. Awaiting response from Insurance company.

Beth - I don't recall the protein numbers - just know that they've been elevated. My GP says that all other kidney tests were normal and told me not to worry just yet...go figure!
UC diagnosed 2002 (pancolitis)
Flare lasted 3 months
remission for 5 years
Recurrence Jan 2007
+ C.Diff (rt colon), Nov 2007 (tested neg all prev. times); left colon-severe u.c.
Asacol 1600mg three times/day
Prednisone 40mg every am
Mesalamine Enema (1000mg) @ bedtime
Flagyl 250mg 4x day
Bentyl 10mg 2-3 caps as needed
Calcium/Vit. D
Haven't decided which probiotic yet!
 
 
 

Posted 11/27/2007 11:23 PM (GMT -7)
Hopefully the insurance company will get back to you right away. Good luck and keep us all posted.
Posted 11/28/2007 6:57 AM (GMT -7)
I would find out what the protein numbers are and get a second opinion. If you are hypersensitive to sulfasalazine, asacol or lialda it can cause minimal change disease in the kidney which I have. Originally my GI said oh yeah have your primary check it out and said it was probably no big deal, it actually is. One thing you can see is if you have foamy urine (I never really looked) and that is a side effect of minimal change disease also if you have edema. I had to do the research myself on the drugs I was taking to find the connection and bring it to my Dr's attn.

Not saying that you have this but I would definitely check it out.
Beth, 32
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

Posted 11/30/2007 9:36 PM (GMT -7)
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
Posted 12/1/2007 12:11 AM (GMT -7)
Hey birthday guy! Happy Birthday! I hope you do actually havea few moments to reflect on what is good about your life and your progress right now. Just think, we could be in a country where we wouldn't even have access or choice of treatments for our disease.
That said, my little bit of advice is on the FLAGYL. If you develop ANY tingling in your hands or feet at all, stop taking it immediaqtely and call your physician. I was not told that the neuropathy is cumulative and can likely remain permanently. We don't need any more challenges. But my zapping feeling was only after high doses for months long. Just be aware of that and act quickly if needed.
I hope your birthday week can get better for you. Remember, you have fought too hard to let this disease take any more from you. Press on in the battle! You can do it!
-Catracha
Posted 12/1/2007 6:47 AM (GMT -7)
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!! yeah
aka. uc veteran

Asacol - four a day
6 MP - 1 tab. a day
Remicade - every eight weeks.

Posted 12/5/2007 2:25 PM (GMT -7)
xtremefit - i'm starting remicade this friday (dec. 7th)...i'm really looking forward to it. When did you first experience any relief?
As far as exercising - i'm still having too many trips to the bathroom (>20 per day) so right now that's not an option. I'm hoping to go back to working out after a couple of Remicade infusions...

Colon Pow
aka Sindi, 49
UC diagnosed 2002 (pancolitis)
Flare lasted 3 months

remission for 5 years

Recurrence Jan 2007

+ C.Diff (rt colon), Nov 2007 (tested neg all prev. times); left colon-severe u.c.

Asacol 1600mg three times/day

Prednisone 40mg every am

Mesalamine Enema (1000mg) @ bedtime

Librax, 1 caps b4 each meal and @ bedtime

Calcium/Vit. D

VSL#3

Starting Remicade December 7, 2007! Yippee!

Posted 12/5/2007 2:59 PM (GMT -7)
Colon Pow - glad you are starting remicade, keep us posted!!!

That is my next step if the Azathioprine does not help. 
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

Posted 12/5/2007 7:52 PM (GMT -7)
Beth, thanks! I will keep you posted. Good luck with the Azathioprine.
UC diagnosed 2002 (pancolitis)
Flare lasted 3 months

remission for 5 years

Recurrence Jan 2007

+ C.Diff (rt colon), Nov 2007 (tested neg all prev. times); left colon-severe u.c.

Asacol 1600mg three times/day

Prednisone 40mg every am

Mesalamine Enema (1000mg) @ bedtime

Librax, 1 caps b4 each meal and @ bedtime

Calcium/Vit. D

VSL#3

Starting Remicade December 7, 2007! Yippee!

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