second flare: pancolitis, proctitis?

oh my gawd we're back again...(dun, dun na nuh)

sorry for the little backstreet boys reference there, i couldn't help it!

anyway, hello everyone! i was a regular around here when i enjoyed my first flare back in, oh geez, 2005. it was a blissful four years of remission where I barely even thought of my disease minus my regular gi visits, keeping up with maintenance meds, and few flare scares (which all were brought under control by upping asacol/rowasa). i did come on and lurk a few times because, let's face it, i love this forum! it helped me through so much during my first flare and i feel quite attached to this place.

well, i thought i had the hang of things in terms of keeping my uc at bay, but within the past 3-4 weeks i've been experiencing symptoms that just won't budge. i've surrendered myself to the fact that this is in indeed my second official flare, however this time around the symptoms are different. with my first flare of pancolitis, i had the standard bloody diarrhea, 10 BM's a day, being awoken by stomach cramps, extreme weight loss, etc.

this time (and i'm just speculating), I believe my inflammation is towards the lower end of my colon/rectum. i have urgency, and the blood is bright red, but i am more constipated that anything. i still have formed stools but it seems as though they have a hard time passing through the inflamed area of the rectum, and thus i'm getting "backed up." does anyone else have these kinds of symptoms? im thrown off by the "constipation" aspect of it since i was so used to diarrhea in my first flare.

I upped asacol to 12/day per my doctor and am on nightly rowasa enemas. but my GI is really gunning for me to get started on prednisone, which is something i'm just not comfortable with doing right now (getting a second opinion next week). i feel fine, i am able to get about my day easily, and do not want to go down the pred road yet.

my question is, especially for people with pancolitis, when you encountered your second flare, how did it manifest? same pattern as the first or was only one area of your colon inflamed? was it easier to control that your first time diagnosed? did you go straight to the dreaded pred or were you able to control it with just mesalamine pills/enemas?

WHEW sorry for such a long post!! just wanted to give everyone some of my backstory :) let me know if any of you have experienced anything i discussed above or can provide any insight.

Kristine,

I have a few pet peeves, at the top of the list is people who refuse to take meds. It seems like prednisone is the drug everybody loves to hate. Now granted it can have some side effects, but it usually beats the alternative. Right now you are not suffering to much, right...Is the goal to reach the 10 bloody BM's and all the good stuff that came with it..???It appears your GI first tried other meds that did not do the trick..Now maybe a Hydrocortenema might help before the dreaded prednisone as fruitgirl suggested...But I ain't a Dr. There are good doc's and bad ones. I judge a Dr by how well he took care of me. How did your doc do over the last 4 years. Ever hear of toxic megacolon..?....Do yourself a favor and put that fire in your colon out before it burns the house down..I have had UC for 40 years, many here have had it much worse then I. But it still can wear one down..I use steroid enemas and Sulfar to put my colon fire out. There many many different meds out there that people on this thread can tell you about. Most of them have side effects. I am not the sharpest knife in the draw here, only one of the oldest...Do yourself a favor, don't take to heart what I say, but do take to heart what your Dr says..

RJD

So I read how exercise is helpful to us with UC. My wife buys me a treadmill...So I walk on it today pull my back out and now need bed rest. This is the kind of year I am having. April 4th of this year I lost my beloved German Shepherd who was 9 1/2 years old...I had bought another house 3 months ago but it fell through since I couldn't sell my house. 2 months ago my mother was dx with cancer...This is the kind of year where I could go in a bomb shelter and have a volcano erupt under me....

RJD

RJD, swear words aren't allowed, thus the reason for the edit.  And try to keep the tone a bit lighter, please! :)

Post Edited By Moderator (fruitgirl) : 12/10/2009 11:50:32 PM (GMT-7)

Try adding some additional fiber to your diet. Some take supplements daily. I don't need to do that, but if things get a little firm I'll eat some granola or bran cereal or beans. That usually clears things right up for me. Just be sure you get plenty of fluids with the fiber.

I'm not able to use Mesalamine, but have found hydrocortisone suppositories to be a huge help when I start to get rectal inflammation.

The reason is flares start at the rectum and work their way up....if the lower and above part isn't being dealt with, it will just continuue to where the original flare was.

Yes, flares can be contained to the lower part and if dealt with using rectal meds, it could nicely remain there.

Of course, I'm saying all this for those who can use the above said meds successfully...

I'd still give it a good go before going on pred...

q

Kristin,
I'm not sure but did you doctor rule out a fissure? My child has recently been diagnosed with UC (pancolitis) but my husband has had a fissure on/off for years with the same symptoms (maybe without the urgency)? He's now starting to think maybe he has UP? Very confusing.

I would take the pred. I have a bottle in my cupboard waiting for my next flare. The side effects for me are much less severe than living with a flare.

     Kristin...just a suggestion, which works for me if I have a bit of constipation...also works for my husband,  ....flaxseed oil capsules.  Just take two a day with meals.  It makes the poo slide out without forcing.