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Ulcerative Colitis
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Posted 3/4/2010 6:57 AM (GMT 0)
Howdy,

As the topic states I'm brand spanking new here. about 4 years ago when I was 20-21 I had intermittent blood on tp. It would go away, really only showed up during extreme stress. I was in college, tests, girls, etc. Fast forward 3 years and I start getting blood almost every movement. It wasn't going away. Sure, I went to a dr. Hemoroids were his diagnosis, no cream worked, went to a GI and she said fissure. Nothing made sense, just had blood and constipation. Possibly just blood. My diet was horrible. Started eating a grapefruit a day and that fixed 3 days of no #2.

I was terrified it was cancer. As I had finally gotten my life right, a job, a beautiful woman I want to make my wife... Anyways I went again, this time went to another GI and we did a sigmoid-scope-thing. Ulcerative proctitis is the diagnosis. However after more research into my condition I gave become very very concerned about my prognosis.

Asacol, 2 pills 3 times a day
canasa, 2 1000mg a day

The second day of the pills there was no sign of
blood and my constipation issues have subsided.

I feel great but I absolutely fear that it will spread. Mainly due to the weight loss that many of you have experienced. I am about 5 10 and 130 lbs. Currently I am trying to gain weight and get as strong as I can so if I suffer some horrid flare I won't kick over.

It is amazing to find a community like this but I still feel a bit out of place. Through my lurking here it seems many of you have far worse of a time than i have a right to complain about. Perhaps there's someone here that shares a similar story? I'm still kind of reeling from having a chronic mystery disease.

I apologize for typos. This was written on an iPhone. I can imagine you will see me around here quite a bit!


Thank you
Posted 3/4/2010 10:30 AM (GMT 0)
Hey there,

I'm a 25 year old guy that's had UC since late 2002, diagnosed spring 2003. First of all, you're lucky if the first pills you tried cleared things up... I've tried many, many different pills. However, my symptoms aren't as horrible as some of the people on this site, so I thought I might be able to relate to you.

I take pentasa as well as a stronger drum named 6-mp. Sometimes I get to feeling perfect, but I always am in the restroom at least a few times a day... it's just a given. Often I wake up with pain in my lower abdomen in the morning, until I use the restroom. The disease itself is always there a little bit, and it will come and go on it's own free will.

Some things that ease symptoms are: getting plenty of sleep, relaxing, not taking on too much in my life, going to bed fairly early (if I stay out real late with friends it throws things off for me), and not drinking. The drinking one can really bother me at times, but if I've felt healthy and as if my symptoms have cleared quite a bit I do drink once in a while. It just isn't good for my disease though, and more than half the time it seems to aggravate things.

I was most importantly going to address you trying to gain weight. I'm 6 foot tall, and have been around 150-155 for the last couple years... was down to 145 for a while with this disease. Last fall my GI Doctor referred me to a dietitian at my request, and I made a goal to put on weight (muscle of course). I also met with a personal trainer to get an exercise program in place. I've been lifting weights since October, and combined with a much higher caloric intake I've put on 20 pounds of muscle with only 2 pounds of fat gained with it. It was rough at first, I actually lost weight between month 1 and 2. The dietitian thought that anyone else eating as much as I was would have been getting very heavy, fast! The UC most likely was effecting the absorption of the food.

Anyways... just letting you know what's possible. Good luck with things!

Zach
Posted 3/4/2010 12:29 PM (GMT 0)
Hi there!  First let me say that you are more then welcome here at Healingwell!  And second, never ever downplay your condition or compare yourself to others nono   If this is important to you then it's important to us.  We all have varying degrees of Uc/Up and you should never hesitate to ask a question or have a concern OK?
Posted 3/4/2010 2:13 PM (GMT 0)
Getting you head around having a chronic illness is a huge thing, so, no apologies necessary. Welcome! Ask any questions..... there are some wonderful, knowledgeable folks here - and however gross the topic, poop-wise, this is a safe place to discuss it!
Posted 3/4/2010 3:12 PM (GMT 0)
Dan-I felt the same way (everyone on here being much worse) when I was first diagnosed as well. Comparing yourself to others doesn't work very well because either way, it's a sucky disease, and everyone has their own limits.

Anyway, I'm glad the meds are clearing things up for you so fast! Especially on such a low dose! Sadly I don't seem that responsive to the 5-ASA's but it's good to know they work for others.

As for gaining weight, try calorie dense foods like nutritional shakes, smoothies, etc. I also have to drink lots of gatorade when I'm flaring both to rehydrate me and keep me from losing too much weight. This disease has made me absolutely neurotic about my weight, I swear.
Posted 3/4/2010 4:21 PM (GMT 0)
Hi and welcome.

As for being scared about it spreading, the absolute BEST thing you can do to prevent that is to be faithful about taking your meds (both oral and rectal!) FWIW, I had a pretty horrid first flare...15-20 urgent BM's a day at my worst, and I was 25 lbs below my pre-pregnancy weight by the time I was 3.5 months post partum (my flare started about 4 weeks after my son was born and I'd gained 25-30 lbs during pregnancy), and I'm doing great today. It's very, very, very rare that you'll die from UC...you and your docs will realize when you're sick enough to be hospitalized and all that jazz.
Posted 3/4/2010 5:51 PM (GMT 0)
Sounds little like me 12 years ago. I really wish I would have had a support site like this back then.
Posted 3/4/2010 6:49 PM (GMT 0)
Hi Dan..welcome to the forum!

Great advice from all.

Definitely use your medications and taper the Canasa to a maintenance dosage. Yes, that means you'll always be having to use them at regular intervals, but it will help keep things in as calm a state as possible.

Regarding the Asacol and taking it 3x daily, if it's easier to take it 2x, discuss it with your doctor. There's less likelihood you'll miss a dosage.

Have you had a colonoscopy as of yet? If not, make sure you ask for one with lots of biopsies to get a good baseline for what's going on. If all is OK you probably won't need one for another 3 - 5 years.

Learn lots!!! I'm impressed with your doc so far.

quincy
Posted 3/4/2010 10:35 PM (GMT 0)
Sorry for such a delay in my reply. I work nights so I sleep till about noon or later. Pretty awesome s hedule. Anyways!

No, I haven't had a whole colonoscopy. Is that necessary? Just a flexible- you're awake for this- scope. I was privledged enough to get to go spelunking in my own intestines. That cost a pretty penny right there. Yay for mediocre health insurance! Inflammation and ulceration was noticible, but didn't look like ground beef or anything. In addition it was only like 7 cm. That was untreated, so I guess for about 4 years untreated it's not too horrid. Still I would rather not have it.

It never has made any sense to me to live in fear. Throughout my time here on this earth I've come to see that I'm only afraid of things I don't understand. Give me a knowledge of what I'm facing and it's not an obstacle. So my plan of attack on this little problem is to learn.

If anything, this disease may be forcing a positive change in my life. Sitting around is unappealing, I don't know how long I'll feel good so why put anything off? I am starting a workout program (haphazardly) and eating to gain weight. The next step will probably be proposing to my girlfriend. Who knows what comes next! I guess I just want to deny this condition the ability to control my life.

I appreciate the welcomes. You all have helped to calm my nerves quite a bit.

Dan
Posted 3/5/2010 12:32 AM (GMT 0)
Just make sure you stay on your meds(oral and rectal) even when you feel better, and keep eating healthy. When I was first diagnosed I lost a lot of weight too, my ribs were sticking out and I had no butt or boobs (luckily I was cramping too much to care for once! hehe). Just be good about the medications and stuff, get enough rest, you'll be alright!
Exercising isn't a bad idea. When I was on pred I was crazy all the time (happy unlike most people here who take it). I put The Toxic Avenger in, and did situps in front of the tv for the entire movie. Then I jogged and did jumping jacks during a UFC marathon. Stair runs during commercials. It was interesting. Didn't hurt me though! lol
Good luck!
Posted 3/5/2010 2:46 AM (GMT 0)
Dan, I can kinda understand your feeling of everyone being worse off. But with me I started out horrible. I was on temporary disability for about 6 months before I was able to jump back into work again. Also, you have to be extremely thankful that Asacol works for you. You have to be thankful that your body is responding to the first treatment. I think for me, Asacol caused more harm than good for me when I was working on getting diagnosed. The only drug I respond well to is Humira, I've been taking it for going on 3 years this May with the fears of falling out of remission. So, to keep you healthy you must be faithful to the treatment you are receiving. Glad to hear that it's going well for you.
Posted 3/5/2010 3:57 AM (GMT 0)
The GI's course of action is the asacol and canasa for 6 weeks. Then I have another consultation with him. He mentioned a few things that he thinks are possible. He's seen cases where he treats it aggressivly and it disappears, mentioned taking me off all drugs to see what happens, and also possibility of maint meds. I really would like to take all the steps available to help stop it. Maintenence drugs seem like a solid route.

Also are there many here whose only symptom is blood? I never had much even then. Wouldn't even change the color of water. So gross :(
Posted 3/5/2010 4:05 AM (GMT 0)
I think I'd stay on the maitenance meds, even if it's a milder case. You don't want it to come back worse the next time.
Posted 3/5/2010 4:40 AM (GMT 0)
Yes, you need a c-scope to see what's going on at the other end of the colon. There are many with extremely limited UC of the rectum but the cecum is still inflamed....so you see that it's not logical for only a sigmoid scope to give you a complete diagnosis.

With the small amount of inflammation you have, I'm wondering how you lost so much weight? One of the side effects is usually constipation, not diarrhea...

q
Posted 3/5/2010 7:51 AM (GMT 0)
Oh, I never lost weight. I'm a stick. 130 has been my weight for years. I guess I will consult my gi as to a
colonoscopy. He is very accomplished in his field, so that makes me a bit calmer. He never has given me the feeling of just plodding through my appointment. One of the best drs I've seen! Heck in my first GI visit the lady said I had a fissure and never bothered to do anything but waste my time. This GI is awesome.

You are very correct. The only other symptom besides blood was constipation. I believe a poor diet helped make it bad, at least exacerbated that part of the disease. It was nothing an increase in fiber couldn't fix. I'm on my first week of taking the drugs and I'm feeling great. Really the first time in 4 years. Just nervous!
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