HealingWell
Search Close Search
☰

New Person to Site

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/25/2010 2:40 PM (GMT 0)
Hi everyone,

  I am new to the site....I am usually a person that reads all posts, blogs, forums, etc., but never signs up for a site or responds to anything. I have decided to give it a try and write a couple of posts today.

  Well,

  I have UC and have had it for two years (I am 32), I have one major question that I wanted to ask....

  How do you know if you are in remission? I read all the time that people are in remission or have been in remission for months or even years...What???I have never been in remission and I am jealous of you! I am always passing blood with my loose stools. I always tell my doctor but he just perscribes a different med ( I currently take 4 pills of Lialda per day).

  Can someone describe remission to me? I get through life...I  work full-time, have a family, and am an active person in society. I don't understand the word remission I guess?

Is remission....being normal like you don't have any problems??? No blood, sick feeling..perfect stools...no syptoms of UC. I can never understand what people mean when writing about remisson.

If you are in remission, do you still take medicine?

Posted 8/25/2010 2:51 PM (GMT 0)
For me, remission is a range of symptom severity from no symptoms, to the occasional mild symptoms. Through most of my remissions, I have had ups and downs with some symptoms occasionally appearing then disappearing. I may have cramping off and on for a few days, a little extra mucous for a few days and so on. I have occasionally had a bit of blood in the mucous, but that is a bad sign and that's when I start to worry. A few times it disappeared and I was fine again, a few times it proceeded into a flare.

Like one of my docs said, as long as all the symptoms don't all start coming back at once, you should be fine.

My last remission which lasted 3 years was extremely good. Virtually no symptoms except a wee bit of cramping at times and extremely regular and predictable BMs. Now if I could only get back into that kind of remission.
Posted 8/25/2010 3:04 PM (GMT 0)
Thanks for your insight C_G_K,
I have been waiting for a response...like watching the minute arm on a clock.
I have been bleeding for 2 years now. Like I tell the doctor, It is so hard to describe my stools to him or anyone. They are always different! Most of the time (75%), they are soft and furry looking with red blood in and around them. He always asks if the blood is from hemroids or my UC. How do I know? I think it's from the UC, but is there a chance I have internal hemroids that could be doing this?

The thing is...I just live like this. I don't know any different. I also inspect my stools everytime like a previous poster wrote. I have never EVER been symptom free, and it's time to get serious or I could be in some serious trouble.

I am going to keep reading and try to figure out what is right to make me better. I hope I am making sense...It is just a real hard thing to understand and discuss because there are so many different syptoms, problems, responses, questions, examples, etc. Like....Some people and doctors write certain things to take...then someone will totally go against it. Take pro-biotics....NO, they are bad for you. Take Vit D....no, it causes cancer. Take these or that...no, they can make you worse. Everyting contradicts teh other on these posts or in the hospitals or doctors offices. Never take more than 2 Lialda a day, well, my doctor perscribes 4 a day? What am I suppose to do?

What the heck are we really suppose to do??
Posted 8/25/2010 3:51 PM (GMT 0)
Hi and welcome! I understand, I have not really been in full remission since diagnosed (last June) What has helped however was rectal meds. You will hear alot about this from people on this site. They are not fun to administer but once you get used to them it is no big deal. I hear it is hardest to heal the bottom inflammation and these will help you with that. I have started on them and shown great improvement. Blood and mucus is waaayyy down and I have even gone a few weeks with nothing. I use Rowasa enemas and occasionally when I need an extra kick I use steroid suppositories. I also take 2 lialda/day but I think more of a preventative from spreading since my inflammation is low (rectum/sigmoid)

Where is most of your inflammation? Throughout or limited? That will also help gage treatment as far as oral dosages etc.... Did you have mild inflammatin? Moderate?

Also what helps alot of people here is a fiber supplement. Some like Metamucil, some like Benefiber..seems to be alot of experimenting to find what works for you. Also how about a good quality probiotic....this has helped alot of people.


I am hoping that I will find the right combo of meds/supplements that will be the magic formula. I know others will give you great ideas too on some things to try. Also sounds like it is time to find a new doc, since he is clearly not helping you anymore. Good luck and let's see what others have to say.
B
Posted 8/25/2010 4:07 PM (GMT 0)
Hi, and welcome to HW!
Gosh, sorry for your symptoms. The others have given you some good suggestions - I would second them! Especially the rectal meds.
You basically have been on various of the 5-ASAs....?

The 5-ASAs are supposed to keep us in remission longer, and we're suppsoed to stay on them as maintenance meds - in other words, keep taking them even in remission. If we stop, they sometimes don't work when we start them up again.
In my own experience, sometimes the 5-ASA meds need something else to help me get into remission - which for me means 1-2 stools a day and no blood, neglible pain.

For years I thought I was just fine with 4 stools a day as long as there was no blood. I do find that the number of stool per day varies greatly according to my diet, probably more so than if I didn't have UC, because of scarring in the colon.

I too have a family and a very public job..... I carry on and very few know about the UC. That's why I love this site!

Again - welcome!
Posted 8/25/2010 4:14 PM (GMT 0)
I do take Canesa rectal sup's. I was suppose to take them twice a day but my body can't take that much the doc said. I was bleeding even worse than I am now. It was just to much mediaction to put in my body...That's what I think? So now I take one every other day.
After reading these forums...I think I need to get a pro-biotic, like today! Is there a certain one you would recommend?

what is the difference between Canesa and Rowasa? I aksed that on another post but never got a response.
Thanks
Posted 8/25/2010 4:22 PM (GMT 0)
songlady,
thanks so much for the reponse....Thank all of you so much!
I am learning more today than I have in 2 years!


songlady
another question for you....when you wrote, two stools a day in remission. What does it look like? what if there is no blood but your stool is way out of the ordinary?

My UC is mostly in my rectum, but it is also located in other spots.
I don't know what type I really have...moderate or mild?
left sided something or other...sorry, it is documented but I don't know.

what is ASA or stand for? is it the same thing as Lidila?
I read a lot of abbrevations and dont know what they stand for.

Thanks again everyone....I am beginning to really love this site and it's only my first day on it ! :)
Posted 8/25/2010 4:36 PM (GMT 0)
Hi, welcome to Healingwell :) I have had Uc for 18 years and over the years, I have had a variety of symptoms. For the most part, I was like you, just living with it. Then I found this forum 6 years ago and started to realize that no I don't have to just live with it, that I could do something about it.

When I became more proactive in my care and more educated I finally reached remission. Of course I didn't stay that way for long but at least I knew it could be achieved. For me remission is solid stool (doesn't matter how many times a day I go) and the absense of blood and left sided/rectal pain. Everyone views remission differently but it is the general consensus is that if you are only on maintainence meds and not treatment doses with no symptoms then you are in remission. But of course these things are subjective because someone can be in remission from their Uc and find out that they have IBS - D in addition (yep that was me! lol).

5ASA meds are the general meds we take such as Asacol, Lialda, Pentasa, Colazal, and the rectal meds Salofalk, Rowasa or Canasa.
Posted 8/25/2010 4:43 PM (GMT 0)
Hi Coach - Sherry answered you about the 5-ASAs.
When I'm good, my stools are generally not always as picture=perfect as "normal" ut pretty darn close.
UC tends to start at the bottom and it goes up the colon continuously, and affects the colon lining. Crohn's can be anywhere - can skip areas - and affects the whole thickness of the tissue.
So, if you have UC, left-sided would mean it's affected from the rectum on up the left, the sigmoid colon.
Because it starts at the bottom and goes up, and flares tend to follow that pattern (I'm avoiding the use of the word "always" because I'm not a doc so I wouldn't guarantee that) this is why the rectal meds tend to work so efficiently.
Posted 8/25/2010 5:19 PM (GMT 0)
Wow, these posts really are teaching me something. It is amazing! Why dosen't the doctors explain this to me when I am asking them 1,000 questions. I never knew some of this. I now understand why the rectal med's would work better and faster.

Red_34, I think I am finally to the point you were at years ago. I want to do something about it and start eating better. I am sick of just dealing with it. I know I have not put enough dedication into getting better. Yeah, I take my med's and see the doctor, but that's not good enough anymore. I have to start eating better, get better educated on UC, stop being so dependent on my doc's word, and a lot more other things.

I wish I found this forum years ago.
Posted 8/25/2010 5:22 PM (GMT 0)
The doctor's are still unsure if I have Chron's or UC....if that makes sense? They always say more UC than Chron's, so does that mean I have both?
Posted 8/25/2010 5:37 PM (GMT 0)
There's a condition called Crohn's colitis which means that the Crohn's is limited to the large intestine at the moment but has the potential of going thru out the entire digestive tract. It's usually you have one or the other but very rare will you see both in one person.
Posted 8/26/2010 1:31 PM (GMT 0)
That is what I have...Chron's Colitis.

   I was always wondering what the difference was, now I know. It's strange, the doctor does not explain it that way. After I called him, he explained it that wasy now.  I asked him about 4 times before. I think I have a very good doctor, eventhough it doesn't seem like it :)

 

Posted 8/26/2010 3:57 PM (GMT 0)

When I say I am in remissoin it means I have lost a range of symptoms.  I no longer have urgency, bleeding, cramping, diarrhea, etc...  I go now about once maybe twice a day and it's usally on schedule, as in once after breakfest.  I am now confident in my ability to do anything without fear of needing a bathroom.  It's as if my UC has dissapeared.  I do realise it's a chronic condition which requires the use of maintanence meds.  I take Imuran at the moment.  I am aware things may change in the future but right now I can say I am in remission.  From my doctor's point of view I am in remission when he look inside my colon and can see nothing but normal tissue, no ulcerations or signs of inflammation. 

Hope this helps

MyUC

✚ New Topic ✚ Reply