New here, lots of questions

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Veteran Member

Date Joined Aug 2009
Total Posts : 832
   Posted 8/3/2009 1:34 PM (GMT -6)   

Well, I really don't know where to start, I have lots of questions and I've been reading here for a few days, you all speak your own language of drugs, treatments, diets, etc.

I'll tell you about me...I'm 32, female, had a colonoscopy last Friday and the doc said colitis on the left side and there's alot of mucus (his words were fancier but that's what he meant). I have an appt with him Thursday to discuss this plus the biopsy results. I've had symptoms for about 2 months and knew something wasn't right so I had it checked out. Right now, it doesn't seem too terrible...some days I go to the bathroom only 2 times, some days 6. But from what I understand it will get this true? I know he will want to put me on meds but I'm not a big fan of meds. And you guys talk about flares and, so, is this a flare for me? I have urgency, blood, mucus, yadda yadda. Does remission mean totally back to normal like I was 6 months ago? *you are probably all laughing at me, sorry, I'm really clueless here, bear with me*

Do I start taking a med right away to try to stop the progression if that's the case? Or try diet first? I like the idea of no meds, but I'd like this to stop first, then try to keep it gone. I do understand there's no cure only control. Of the meds, the mesalamine sounds the least dreadful...least side effects, etc.

I know this is kinda rambling but I just need some input if you guys have any to share. I would like to be informed and knowledgeable at least a bit before my appointment.

Thank you!

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 8/3/2009 1:46 PM (GMT -6)   
Hi, and welcome, although I'm sorry that you're here! It's not necessairly true that you'll get seems that many of us on here have had some pretty nasty flares, though. Some people have pretty mild cases of UC, so don't have horrible symptoms, and I imagine a lot of them don't come to sites like this. My first (and so far only) got bad enough that I was having 15-20 BMs/day, but I've been in a nice remission since May.

For me, remission means normal bowel habits (1-2 non-urgent BM's day), like I was pre-UC. The decision of whether to try meds or diet first is a very personal one. Both diet and meds can be very frustrating...what works for me may not work for others, etc. However, the meds do have the benefit of having had a number of controlled studies done. I chose the meds route, simply b/c I was incredibly sick and had a newborn to take care of, and figured I had a higher chance of getting better faster with meds. Plus, I'm not one to be bothered by taking meds.

I started out with just oral mesalamine (Asacol) then added rectal mesalamine (Rowasa) a week later. I was close to remission when I got a tummy bug, which set me back pretty far. So my doc and I decided to do a quick course of prednisone, b/c I'd been sick for so long and b/c I had a job interview coming up. I was able to get off the pred easily, and have been in remission ever since. I started tapering the Rowasa after I'd been in remission for a few weeks (to every other night for a couple of weeks to the twice weekly I'm at now, and where I intend to stay). I also switched to Apriso from Asacol, simply for convenience of only having to take pills once a day as I was having trouble remembering my noon dose of Asacol.

The mesalamine drugs are generally quite well-tolerated, and are definitely what I'd choose to start with. If you do choose to use meds, DEFINITELY request both oral and rectal forms. Don't leave without an Rx for both! And don't let you doctor put you on definitely aren't sick enough for that at this point!

Good luck!
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).

Veteran Member

Date Joined Jul 2008
Total Posts : 823
   Posted 8/3/2009 2:45 PM (GMT -6)   
Hi, I am 33, female and was diagnosed at 31 right after giving birth. I am glad that you found this site, I was very stressed when I first found out about UC and this site has some very useful information.

I agree with Fruitgirl, you may not get worse. It is not predictable. Some people get worse, others better and some stay the same. I am not a big fan of taking meds either but diet makes no difference for me...that is good in some ways because I do not have to deprive myself of food. I do eat very healthy food and avoid grease and excessive fats but that is not because of UC, I just want to be as healthy as I can. I also work-out on a regular basis. I take as few medications as possible but I do take them. They help when I am in a flare and also help keep me out of flares (in remission). It is important to really learn to listen to your body and catch the symptoms early. I have learned that the hard way. For me, the earlier I start to treat a flare the better. It does sound like you are currently in a flare since you are having urgency, blood, mucus...I personally would suggest taking the meds to get out of this flare and then deciding at that point whether to continue meds after that...I also agree with treating with both oral and rectal meds to get out of a flare!
Dx 2006 right after the birth of my daughter
Lialda 3 pills a day!
Canasa daily
Probiotics Daily

Regular Member

Date Joined Jun 2009
Total Posts : 173
   Posted 8/3/2009 3:13 PM (GMT -6)   
We are never laughing at your questions! That's what this board is for. Questions.
Did your doctor say you have UC, or is that what the upcoming appointment is for? If you do, then it does sound like you are probably in a mild UC flare and you will likely need meds to get out of it. Unless you are in the very slim minority for whom diet alone can fix you.
And yes, remission should be more or less like you were before your problems began, although what remission is can vary from person to person.
Good luck and I hope you stick around the forum. As you've noticed, you can quickly educate yourself about the different meds, diets, and realities of UC on here!
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.

Asacol, Azathioprine, Prednisone, Rowasa
First Remicade 6/22/09

Regular Member

Date Joined Jul 2009
Total Posts : 32
   Posted 8/3/2009 3:19 PM (GMT -6)   
Dear Calm on the Outside,
I'm so glad you are proactive and seeking information and help.  I have had UC for almost 26 years and was diagnosed right after my first child was born.  Most of the time I have been ok but have had a number of bad flare-ups.  I am now in one that has lasted 6 months and am on colazal, mesalamine enemas and 6MP (just prescribed a few weeks ago).  Unfortunately, the meds have not worked (I even asked for prednisone but that didn't work this time).  Finally I decided to see a holistic nutritionist/doctor of naturopath.  Went last Wed and boy, was I enlightened.  Unfortunately, the M.D.'s  are not really trained in nutrition and viewing the body as a whole.  I have been placed on a specific diet (that I would have never thought of), additional nutrients, protein shakes...
The reason I am telling you this is because I think both avenues, medicine and diet are important.  I really wish I had gone the diet route a long time ago.  Medicine seems to target the symptoms of IBD; nutrition... addresses the causes...
Bottom line, go both routes and and don't take what your Dr says as gospel.  By the way, it seems that most doctors are not "impressed" with holistic and naturopathic routes because they only believe that medicine and surgery are the cures.  Leave your mind open.

Veteran Member

Date Joined Aug 2009
Total Posts : 832
   Posted 8/3/2009 7:44 PM (GMT -6)   
Thank you everyone for your replies. Let me address the questions if I can and ask more questions of my own...

I do not know for sure that it's UC, but on my report from the colonoscopy it said colitis from the rectum to the descending colon (I don't know if that's ALL of the left side or just part of it, I will be sure to find out Thursday). From what I've read, not all colitis is UC, right? Sometimes it's hard to figure out all this information but I am trying!

What is 6MP?

And...yes, I'm thinking a med to get out of this flare, even though compared to what I've read here, mine is mild so far and then yes, I'm pursuing the diet/nutrition aspect as well. My aunt has had colitis for decades (and I didn't know this until I was diagnosed, she lives halfway across the country) and she does natural remedies/diet. So when I find out exactly what I have I am going to call her and compare notes.

Thank you for not thinking I'm crazy for asking all these questions even though I'm not in that bad of shape. I am a person who needs information from people who have been there. I have printouts I'm taking to my dr. appt...he's going to love me or think I'm

Veteran Member

Date Joined Jun 2009
Total Posts : 2012
   Posted 8/3/2009 7:45 PM (GMT -6)   
I think you probably caught this fairly soon so maybe if you start with something like Asacol it'll keep it from getting worse. But left untreated, yes, it'll get worse. I started with Asacol but that wasn't enough, I was put on Prednisone three times. Now I'm on Imuran. But now that I've tried enemas I would suggest that too. So maybe start out with some Asacol or something similar with an enema and also change your diet. Supplements sometimes help, I've found that turmeric works well. If you begin with medicines you can always start lowering the dosage later. I'd rather do that than risk a diet on its own before trying them. Then while on the meds you could get used to a new diet and if it helps, begin lowering your med dosage. Good luck!
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 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome

Forum Moderator

Date Joined Dec 2008
Total Posts : 16732
   Posted 8/3/2009 8:29 PM (GMT -6)   
I tried the med free approach with no luck. I am happy I had the opportunity to try different treatments even though they failed. I feel like I have given the holistic approach a chance but maybe it doesn't work for me, but that doesn't mean it won't work for you. I tried the SCD diet, Low Residue diet, I've tried many vitimans and herbs along with probiotics (which I still take and believe help but not enough to get me off medication).
I currently take Asacol and it has helped me to get into remission. I am not sure if this is quite remission, my movements are still a bit urgent but I don't see blood or mucus and I only go once or twice a day. Things are pretty predictible, not like I was before the Asacol, running to the toilet constantly, unable to pass wind for fear of dirtying my panties and sadly, I did soil them on a few occassions.
I remember when my colitis was a smaller flare, going 2-4 times a day. I was able to treat it with rectal Canasa suppositories as needed, sometimes every night, sometimes every other night. The problem was that they were extremely expensive and I didn't know about the Axcan patient assistance program. I stopped taking the Canasa and tried all these diets and herbals. I had no luck and quickly got worse, worse to the point that I couldn't pass wind - if you catch my drift. I ended up very sick from loss of blood and barely able to walk across the room without collapsing. I became terribly anemic and felt like hell. Recently terminated from employment with no insurance, I had to drag myself to a new GI and pay out of pocket, she prescribed me Asacol and more Canasa. I found out about the PA programs and got drugs for free and about 9 months later, here I am, much healthier.
So my point is, treat it properly now, if I had continued the Canasa, I wonder if I would need to be on Asacol now. Maybe I would still be controlling my colitis with rectal meds. That would be a dream. The oral meds don't give me many bad side effects but I have to take 9 pills a day and it's hard to remember. They are also expensive. I get them for free but I see a lot of people struggling to pay for them.
colitis and UC are different. I don't know exactly what I have. The two biopsy reports seemed to contradict eachother. I think regardless of whether it is colitis or UC, they will try to treat it with 5ASAs. You could probably be treated with a low dose, maybe Canasa would help.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...

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