Quincy..and anyone else who wants to chime in re symptoms in relation to where UC is located

If you have ulcerative pancolitis...that's what you have. Since you've been on the Salofalk oral, the area above the sigmoid and possibly into it somewhat has been "maintained" and inflammation probably kept to a minimum.

You've been on Humira, that'll help keep the reaction down and while maintained with Salofalk oral...it's a huge plus.

Obviously, the 5ASA agrees with you...another huge plus.

Now, this is just a major tick off for me....if UC starts at the rectum and continues upward to whatever limit (be it rectum, sigmoid, left-sided or throughout) ....why not deal with the rectum as well. There are meds made for that area. But some doctors use the excuse it won't reach the entire colon...that's not the med's intention, that's why the both ends approach is best.

A flare will start bottom upward, it'll heal top downward....meaning the rectum will will stay inflamed unless it's treated.

It's an area that for some is never perfect and for others it's almost impossible to treat for whatever reason.

your inflammation at this point may be into the sigmoid. Probably the oral Salofalk is dealing with some of it, but below it is obviously severely inflamed considering how many times you're having movements and not much stool.

Regarding your supplements, I think you're on too many "blood thinner" ones. You for sure need the vitamin D, calcium/mag, C....I'm not one for the fish oils and wouldn't take flax oil....so that's a personal one. I found that it made everything too slippery, actually..and I don't think the concentrated oils agreed with me well.

My goal is to never use prednisone, but the 5ASA meds have always worked for me. I've never had children...could only imagine my misery (and the poor kid..lol).
Definitely hormonal fluctuations will affect things.

My advice till you see the new doc is to use the suppositories twice daily and make a list of questions and requests and what your goals are for treatment looking at the long-term (with the least possible side effects over the long-term).

One strong word of advice, don't get hung up on the possibility that you would have improved a lot if you were on rectal meds....I personally think you would have had much more relief, but you did start with pancolitis and now it's remaining limited....that's a huge thing. We all learn.

It took me almost 3 years to really understand how to use my meds properly and effectively. I've had lots of ups and downs, but my meds have always been a constant and I credit them only as to why it remains limited to the rectum and never as bad as my initial flare and first year and a half.

You should also be on good probiotics and use the psyllium. I take it with my meals.

Hope this answers some of the questions...if you're not clear on what I answered...ask away. Others will for sure chime in and fruitgirl hopefully since she's a 5ASA oral/rectal user with pancolitis.

quincy

...its the total opposite for me. My flares start with upper colon symptoms and and progress to the other rectal symptoms after..that has been the pattern for a while now.

 

Right now things seem to be good 1-2 BM a day, no blood, a bit of urgency that I am trying to treat with the suppositories . I will use 63 of them and see how it goes. if not, will try the enemas to reach further up.

 

While on Humira I was going more believe it or not. And felt alot worse in general.

 

My goal is as yours..no prednisone..or HUMIRA for that matter.

 

 

 

 

quincy said...

Now, this is just a major tick off for me....if UC starts at the rectum and continues upward to whatever limit (be it rectum, sigmoid, left-sided or throughout) ....why not deal with the rectum as well. There are meds made for that area. But some doctors use the excuse it won't reach the entire colon...that's not the med's intention, that's why the both ends approach is best.

     I have ulcerative proctitis.  So far, it hasn't gotten any further than my rectal area.  Your symptoms sound very much like mine.  My GI doctor said that the proctitis is the most stubborn, very hard to treat.

     Quincy mentioned about the fish oil and flaxseed oil making things "slippery".  Those are two supplements I have been taking daily...one each and I have to agree with quincy..they ARE making things "slippery".  Today I decided to omit them for a few days and see what happens.  I have pain even upon passing gas.  The pressure in my rectum is almost unbearable when having a bowel movement, so I know it is badly inflamed.  I try my darndest to retain the cort enema but it just seeps right on out along with mucus and blood.

Just to agree with everyone - my worst symptoms are the bottom ones. I have pancolitis, but it's the rectal inflammation that bothers me the most. Most of my flares have involved only the last 14-18 inches of the colon.
I haven't had "SBS" but maybe I'm not taking that high a dose of flax seed oil to have the slippery experience.
To be honest, I'm not sure it's doing a thing for me, but I started it when flaring and I wanted to feel as if I was doing "something" on my own behalf. I'll discuss it with the doc at my physical next week...

fruitgirl....my doc mentioned that higher in the rectum and above can trigger diarrhea...so, it doesn't have to be too high.


Krissy...As well, slight inflammation will trigger diarrhea, so if you have slight inflammation high enough to cause the looser stool, etc....treat that area with the oral meds and not the rectum, the rectum will eventually get more inflamed, hence your later rectal symptoms.

Personally, I don't think you may recognise other symptoms until they're possibly worse or more obvious.

I had mild inflammation for years before the bleeding started, obviously....and never had any rectal pain until it got more severe. My inflammation only went as high as into the sigmoid, but not all of it.

Diarrhea was my first symptom, but that didn't mean I didn't have rectal symptoms. It's all a matter of degrees.

As well, with inflammation limited to the lower part of the rectum, the stool will be more formed and one will have more "constipation" type of symptoms...hence the more rectal discomfort.


Regarding the fish/flax oils...they'll make things more slippery to definitely help constipation. For any type of urgency, I can't see it as a good thing..lol.
Of course, one has to try different things and eventually come to a conclusion of what eases some symptoms....not meaning the inflammation, but more discomfort, increase of some symptoms, etc. That's usually related to food, supplements, fibre, probiotics...etc.

Hope you find what works for you eventually....

quincy

OK, to put it plainly, you need to treat both ends. The oral 5ASA should be the constant and you should be using the enemas to deal with all of the rectum and as far into the sigmoid (even if it's not inflamed, it will keep whatever inflammation limited and in check).

I don't know what you mean what symptoms to treat....everything is by degrees and most of us do NOT feel the earliest symptoms because we recognise the more obvious ones.

With oral/rectal 5ASA (since it seems you can use them), should deal with your symptoms and you can taper the rectal meds to a maintenance. The oral meds can remain the same or increased if needed. The rectal meds should be increased at the first symptoms of a flare.

Does that make sense?

Don't make it more complicated than it need be. Fairly straight forward.

q

Definition of Universal colitis:
Universal colitis:Ulcerative colitis that involves the entire colon (the large intestine).

from: http://www.medterms.com/script/main/art.asp?articlekey=7363#

Post Edited (wodin) : 2/19/2010 2:22:58 PM (GMT-7)

i will def ask for the enemas soon..the past few days have been up and down..yesterday i had to go in the early morning..no blood..just urgent and not very firm..then i was left with that still not done feeling and had to go two more times after that and hardly anything came out this time so again it was just urgency..i am used to this as in my big true flare this was happening 50 yes 50!!!!!! times a day..tenesmus the whole bit..now today i have gone twice, firm, not urgent ...
so its really up and down..
i forgot how to do the enemas btw..

The enemas come with instructions... Lay on your left side, squeeze the air out (of the bottle lol), stick it up your butt and roll the bottle toothpaste-tube-style.

Also I like to pull it out a lil as to get some of the meds a little lower down.

And don't watch anything funny until you're good at holding it in lol

nor can we to hear how it goes for you!! ;-)