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Crohn's Disease Forum » Ulcerative Colitis Forum » Advice or Help with my UC!


04-10-2013, 07:47 AM   #1
bbizzowers
 
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Advice or Help with my UC!

Hello all and good morning,

I was diagnosed with UC in 2008 and have had rather mild flares, based on what I've read here, so I am thankful for that. However, I'm not sure about what is happening to me right now so I thought I'd reach out for some helpful advice or suggestions.

I will try to be as detailed as possible while not being crude. And I apologize, but I am a bit wordy when I write.

Typically, when not in a flare, I usually have 2-4 bowel movements (BM) each day. Mornings are always difficult and I usually go at least twice in the first hour of my day. I also pass gas normally with no difficulty there.

For the last month or so, things have been different. I don't pass gas freely anymore, and instead it builds (I'm assuming) inside. Pain is NOT an issue at all, thankfully. However, with the gas building, it only enhances the urgency with each BM. My clock is around 15-30 seconds once I get the urge to go. The gas buildup also removes all hints of discretion from the process.

The BMs themselves have changed. It pretty much looks like dirt with a solid piece maybe 1-1 1/2 inches long and the width of a kid's crayon. But my entire body tenses up, similar to how the whole body tenses before vomiting, to pass something so small.

As for medication, I am on asacol 400 mg 3 pills 3x per day. Honestly, I'm usually good for 2 doses each day. I normally forget one.

My diet is ok, I guess, in that I don't eat fast food and my wife cooks pretty healthy items. I don't drink soda or alcohol. I exercise 3-4x/week as well and I always try to get my 7-8 hours of sleep.

I hope I didn't miss anything, but if I did, ask away. I'm hoping there is something I can do to try and avert this issue. I'm not even sure if it's a flare since I'm not bleeding at all.
04-10-2013, 03:31 PM   #2
jwfoise
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Hi bbizzowers.

I don't know if it is a flare, but it does sound like things have changed. If this has gone on for a month, it might be time for a chat with your doctor.

During my flares I also have a lot of problems with gas and I find Gas-Ex helps, at least a little.
04-10-2013, 03:45 PM   #3
2thFairy
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I always had a lot of gas with flares.

If you haven't seen or heard of this yet, Asacol 400 mg has been discontinued and is now being replaced with a similar drug by the name Delzicol. The Asacol HD 800 mg will still be available. Here is a good thread about it:

http://www.crohnsforum.com/showthread.php?t=49793

Since you are already forgetting to take your third dose in the day, maybe the Asacol HD 800 mg is better suited for you anyway. Either way, definitely contact your doctor to see what to do about the discontinuation of your current meds.
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04-11-2013, 10:19 AM   #4
sickinlk
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yep agree with fairy,
gas is a sign of a flare starting, then comes the mucous and then the blood.
you seem to be on a high dose of asacol for maintenance IMO. it could also just be just that. I thought 1200 was a maintenance dose and 2400 for flares. correct me if im wrong anybody with more experience. you are on 3600mg and even after missing a dose(which we all are guilty of im sure) its still too much. don't go changing anything without consulting your GI or nurse, but I would certainly question it.
I know that feeling your talking about too as if your whole body is retching when you pass stool. I had that during a flare. I never knew the reason.
ju
04-11-2013, 12:37 PM   #5
jwfoise
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you seem to be on a high dose of asacol for maintenance IMO. it could also just be just that. I thought 1200 was a maintenance dose and 2400 for flares. correct me if im wrong anybody with more experience. you are on 3600mg and even after missing a dose(which we all are guilty of im sure) its still too much.
I've been on 4800 mg for years; that's my maintenance dose. Originally I took it 1600 mg (4x400) 3 times a day, but my middle dose would be like 2 p.m. and I'd always forget to take it, so my doctor had me do 2400 mg (6x400) twice a day (breakfast and dinner, which are about 12 hours apart).

That has worked well for me, though according to my doctor, that is the maximum dose you can take.
04-11-2013, 03:56 PM   #6
sickinlk
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[QUOTE=jwfoise;632803]I've been on 4800 mg for years; that's my maintenance dose. Originally I took it 1600 mg (4x400) 3 times a day, but my middle dose would be like 2 p.m. and I'd always forget to take it, so my doctor had me do 2400 mg (6x400) twice a day (breakfast and dinner, which are about 12 hours apart).

That has worked well for me, though according to my doctor, that is the maximum dose you can take.

sorry I think I was getting confused with mezavent. but the most I was ever on asacol was 2400mg and my docs never increased it even though I was flaring for 18months.
4800 that's a lot of pills. bleugh
ju
04-11-2013, 04:15 PM   #7
jwfoise
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sorry I think I was getting confused with mezavent. but the most I was ever on asacol was 2400mg and my docs never increased it even though I was flaring for 18months.
4800 that's a lot of pills. bleugh
ju
No problem. Yeah, a lot of pills, but <shrug>. I always have found the name "asacol" amusing, I've often thought it was supposed to sound like "asshole".

I saw 2thFairy's comment about Asacol being discontinued. I gave the mail order pharmacy I use a call, I just did a 3 month refill a week or so ago. They had not heard this yet, and said they had a "sufficient" supply (whatever that means). I'll have to keep an eye on this, since my doctor would have to write a new script if I'm going to have to change.
04-12-2013, 09:23 AM   #8
sickinlk
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its called asacolon in the states isn't it? ass and colon.

aptly named
ju
04-12-2013, 03:35 PM   #9
markktoo
 
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I was diagnosed with UC 6 years ago at 50. I was on a 1600mg maintenance for first few years but I am now down to 800mg/day, ASACOL.

I have done somethings that I believe helped me get to a really good place, so I want to share. Shift eating habits to anti-inflammatory types of oils. Omega-3s.

I take teaspoon Carlsons fish oil daily.
I take Garden of Life Ultimate probiotics for healthy gut bacteria 2 times a day on empty stomach.
Take good multi-vitamin to compensate for poor absorbtion, and a B-complex as well.
I also take l-arginine, 3-4 grams per day, spread thru out the day on empty stomach. This last thing had the most impact for me after a few months, I believe, and there is some research regarding use for UC. I also take 2 grams l-citrilluine which is converted to l-arginine in the system by kidneys. Nitric oxide is the result of using these amino acids and it improves blood flow. I had also done some research over the internet ( good idea, bad idea) in looking for alternatives, or just other things I could do to improve my situation and I put together information on endothelial dysfunction in UC patients and that l-arginine improves endotheilial dysfunction.

I am sharing what worked for me. UC is a personal disease with variations in symptoms, medication response, and the real source of the disease.
04-15-2013, 12:47 PM   #10
jwfoise
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I take Garden of Life Ultimate probiotics for healthy gut bacteria 2 times a day on empty stomach.
Hi markktoo. I take a probiotic too and it has helped me a lot. I had not heard about taking it on an empty stomach (I take mine with breakfast). Why would that make a difference?
04-16-2013, 10:18 AM   #11
markktoo
 
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The only caveat to eating with food is really hot food can kill microorganisms. Otherwise, its probably not that important.
04-16-2013, 10:22 AM   #12
sickinlk
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The only caveat to eating with food is really hot food can kill microorganisms. Otherwise, its probably not that important.
don't forget, not to take antibiotics either at the same time

ju
07-26-2015, 06:24 AM   #13
Tomboy_katUC
 
Join Date: Jul 2015
I always had a lot of gas with flares.

If you haven't seen or heard of this yet, Asacol 400 mg has been discontinued and is now being replaced with a similar drug by the name Delzicol. The Asacol HD 800 mg will still be available. Here is a good thread about it:

http://www.crohnsforum.com/showthread.php?t=49793

Since you are already forgetting to take your third dose in the day, maybe the Asacol HD 800 mg is better suited for you anyway. Either way, definitely contact your doctor to see what to do about the discontinuation of your current meds.
I used to take Asacol and completely forgot about it but you reminded me I now take delzicol which, because I stepped on it, I noticed it is a capsule with the Asacol inside of it.
07-31-2015, 02:27 PM   #14
jwfoise
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I used to take Asacol and completely forgot about it but you reminded me I now take delzicol which, because I stepped on it, I noticed it is a capsule with the Asacol inside of it.
I also switched from Asacol to Delzicol. I never stepped on one, but if you shake one you can hear the pill rattling inside the capsule.

My understanding is that it essentially glorified aspirin, and like aspirin, it acts as an anti-inflammatory. The biggest difference is the coating/capsule - it is designed to not dissolve in the stomach, like a regular aspirin, but survive till it gets to the intestines, so it releases the drug there. There is a whole family of related drugs that just dissolve in different places in the GI tract.

IIRC, the reason they turned Asacol to Delzicol is that the patents on Asacol were expiring and so others could then make generics. They go a new patent on the new packaging, and re-released the drug under the new patent.
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