Newly Diagnosed Colitis

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LochNess
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/25/2009 11:11 AM (GMT -6)   
I was very recently diagnosed with UC (end of July of this year). I don't know exactly what type or what part of my colon is affected, if the doctor told me I wasn't paying attention because I was still sedated from the scope. I have an appointment with a specialist in October and I was just wondering what I should expect/questions I should be asking?

I'm on Asacol and Prednisone right now. Is Asacol going to be a long term medication? Also, do presnidone side-effects get better or worse as you take it/start tapering off? I've been taking it for 3 weeks and my face has swelled up, I've had the joint pain, I think I've gained weight, I've got acne break outs on my chest(something I was hoping I wouldn't have to deal with after high school), my legs cramp up really easily (is that normal?), some nights I can't sleep regardless of how tired I am, and my period never happened this month (again is this a normal side-effect?). I do feel better (I did a big happy dance when I had my first solid bowel movement in 3 months) but I feel very unattractive and self-conscious now with all the stuff going on with my body, and I've still got another 3 weeks or so to go. Is there another alternative to prednisone that I can ask for if I have another flare up?

Basically I've got lots of questions and not many people to ask for answers/talk to about what I'm going through so any advice would be greatly appreciated!


Diagnosed with UC August '09 (age:21)

Asacol-> 6/day
Prednisone-> Started at 45mg (3pills 3x/day)
Currently 20 mg (2pills 2x/day)
(tapering off and should be finished in the next few weeks)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/25/2009 11:43 AM (GMT -6)   
Welcome to HealingWell, but I'm sorry to hear you have UC.

You'll want to ask your specialist how bad the UC is (mild, moderate, severe?) and what parts of your colon are infected. You may have proctitis (rectum only), proctosigmoiditis (rectum and the S-shaped curve just above it), left-sided or pancolitis (full colon.)

Typically biopsies are taken during the colonoscopy, and you want to know the results of these. What you don't want to hear is dysplasia, as that can point toward possible colon cancer. We are at a somewhat increased risk for that.

Ask if the doctor is reasonable sure you have Ulcerative Colitis and not Crohn's disease. The symptoms can be similar, but sometimes the treatments can be different. Asacol is a long-term maintenance medicine. Predisone is used short-term to induce remission, or lessening of symptoms.

The short-term side effects of Pred do tend to get worse the longer you take it. As you taper, the joint pain may get worse. The facial swelling and weight gain are primarily from fluid retention, and will slowly go away when you're off the Pred. For future reference, these can be minimized somewhat by watching your salt intake. Pred typically makes you crave salt or salty foods. The insomnia and acne will also clear after you're off the Pred. In the meantime, there's not much you can do about ithe acne as it doesn't usually respond to regular acne treatments. Your sleep should get better as you get off the Pred.

Also ask your specialist about rectal medications. The oral Asacol may not reach all the way to the rectum, and in UC that is the area that flares first and heals last. The drug in Asacol is also available in enema form or as a suppository. It's usually better to start with enemas if you have any involvement above the rectum itself. Enemas may also help with new flares and eliminate the need for steroids. If you do need steroids, they are also available in enema and suppository form, which often have fewer side effects.

I'm sure you'll get a lot of helpful information here, and welcome again to our forum.
Judy
 Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001. Flared for 5 years, finally in remission with Remicade since March 2006. Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
Avascular necrosis in both shoulders is  my "forever" gift from steroids.
Chronic joint/connective tissue/muscle pain; TKR 05/09 
"My life is an ongoing medical adventure"
 


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2011
   Posted 8/25/2009 11:45 AM (GMT -6)   
You could go ahead and ask how much of your colon is affected, how bad it is, etc etc.

Asacol is a long-term medication and you need to stay on it even when you're better. You could also consider adding natural supplements and a probiotic.

Well, pred side-effects get worse the longer you take it and when you come off of it they should go away. I don't know if the leg cramping is normal. And I don't know about the period because mine didn't always happen in the first place. But the others are normal.

I know some people here use Entocort instead of Prednisone because it has less side-effects and I believe it is safer. Also, if you catch flare-ups early (like in the constipation stage / bright red blood and not the darker stuff) you can go on rectal medication to help stop it. You might consider starting that anyways, because while it doesn't treat your whole colon it will at least help the bottom!

We'll be happy to answer any other questions! =)

PS: And as for the Chron's thing, my doctor did an EDG (I think that's what it's called... where they put the camera in from the top end of you XD ) at the same time as the colonoscopy to rule out other things.


19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 2xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/25/2009 12:02 PM (GMT -6)   
The leg cramping is common with Pred. Most of the time it's related to a sodium/potassium imbalance in your body. As you crave salt and eat more, it depletes the potassium in your body. This can cause muscle irritability and (sometimes severe) cramping. Often you can avoid this by drinking a glass of orange juice or eating a banana morning and evening.
Judy
 Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001. Flared for 5 years, finally in remission with Remicade since March 2006. Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
Avascular necrosis in both shoulders is  my "forever" gift from steroids.
Chronic joint/connective tissue/muscle pain; TKR 05/09 
"My life is an ongoing medical adventure"
 


LochNess
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/26/2009 3:21 PM (GMT -6)   
Sweet! Thanks for the help guys! I think the doctor who did my scope and my GP were both fairly certain that it was UC and not Chrone's.
What exactly is a probiotic? Is it the same stuff a lot of yogurts have added to them now but in a pill form?
I'm really excited I found this forum! I only know one other person with colitis so it's nice to know that there's a place I can talk to other people who are/ have gone through the same thing.

Oh! also I've read a lot about enemas on here, should I talk to my doctor before I start taking them and are they readily available from a pharmacy or do I need a prescription?
Diagnosed with UC July '09 (age:21)

Asacol-> 6/day
Prednisone-> Started at 45mg (3pills 3x/day)
Currently 20 mg (2pills 2x/day)
(tapering off and should be finished in the next few weeks)

Post Edited (LochNess) : 8/26/2009 3:29:06 PM (GMT-6)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/26/2009 3:46 PM (GMT -6)   
Probiotics are preparations of some of the "good" bacteria that normally live in your colon and help with colon health. The yogurts have small amounts added, but we generally take much higher doses. You can find a variety at your health food store. Also, pharmacies generall carry them. I order mine over the internet. Some people need to try a few preparations before finding one that helps them.

Probiotics also help protect us from overgrowth of "bad" bacteria in the colon which can make us very sick.

The enemas we use are usually either Rowasa (mesalamine) - the same medication that's in Asacol, or hydrocortisone enemas. You'd probably want to start with the mesalamine, because it's good to avoid steroids whenever possible. If that doesn't help you could try the steroid. The idea is to treat both from the top and the bottom, because oral drugs often don't reach the lower end of the colon, where flares start. These are prescription drugs, which your doc would need to prescribe.
Judy
 Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001. Flared for 5 years, finally in remission with Remicade since March 2006. Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
Avascular necrosis in both shoulders is  my "forever" gift from steroids.
Chronic joint/connective tissue/muscle pain; TKR 05/09 
"My life is an ongoing medical adventure"
 


LochNess
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/26/2009 4:15 PM (GMT -6)   
ohh ok. Good to know. I was also thinking of going to see a naturopath to figure out what will make me sick and what won't. The little I've noticed already is that drinking cow's milk makes me stomach feel gross(so I've switched to soy), and extremely spicy foods, and on some days certain candy(I have a really big sweet tooth). I've heard that it's a good idea to go on an exclusion diet (cut everything out and start adding foods to see what makes you feel worse). Any thoughts?
Diagnosed with UC July '09 (age:21)

Asacol-> 6/day
Prednisone-> Started at 45mg (3pills 3x/day)
Currently 20 mg (2pills 2x/day)
(tapering off and should be finished in the next few weeks)


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2011
   Posted 8/26/2009 4:26 PM (GMT -6)   
Coffee, things with lots of caffeine, that stuff with bother you. Pop might be okay, but it bothers some people.

Also if you're interested in seeing how goat's milk works for you, I found a good brand... I don't remember the name... but the carton is like tan, with blue pictures on it (I think like flowers and some Swedish girls), but yeah, it's good and doesn't taste bad like other brands,a nd my mom had me drinking that when she heard cow's milk could hurt.

The diet thing really depends on the person. Most UCers seem to have an IBS thing going on, I don't think I'm one of them (but coffee will speed up the poo). If you end up going to a naturopath you might as well ask about some supplements.


19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 2xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome

Post Edited (ElephantPipe) : 8/26/2009 4:50:05 PM (GMT-6)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/26/2009 4:27 PM (GMT -6)   
I'd suggest keeping a food diary for a couple of months. Then look back and see what consistently caused you problems. Some of us are more bothered by foods than others.
Judy
 Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001. Flared for 5 years, finally in remission with Remicade since March 2006. Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
Avascular necrosis in both shoulders is  my "forever" gift from steroids.
Chronic joint/connective tissue/muscle pain; TKR 05/09 
"My life is an ongoing medical adventure"
 


poopy67
Regular Member


Date Joined Jun 2009
Total Posts : 23
   Posted 8/30/2009 6:02 PM (GMT -6)   
My first dr. suggested tring to use meds only when flaring, then taper off and see how you do. So i would not need any thing sometimes for a couple of years. Then i would be on Pred/sulfazine. and boom i would be ok again. His idea was that uc patients can become immune to the meds so do not use all your options until you need them. I have been a uc patient for the better of 20 years. Only now i am going to have to stay on meds for longer this time. good luck to you and i must say this blog can help you a lot when you are scared of the new things that pop up. ask your Dr. what they think.
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