Can anyone relate to me? :(

Seems like there should be something in addition to the Lialda...Lialda is basically Asacol in a more convenient form... Asacol / Lialda by itself is a maintenance drug. If you are bleeding you should have some bigger guns working with you such as Pred / Immuran / etc... Most people hate pred, but it could possibly bring you out of a major flare, then you taper off and go back to the maintenance drugs...

You should schedule an appointment with your GI - tell him/her about your bleeding and cramps, and see what they say.

Could go on rectal meds and see if it helps. We can all relate to you.

Sunshineonmyface~ I know just where you are coming from I was diagnosed December of 2008 and have not had a "reasonable" period of remission since then. I was on Lialda and using Canasa every night without any results. My bleeding would go down but I would have the same symptoms that us UC sufferers know and love! I was recently switched to Asacol and I use a Mesalamine enema when my bleeding gets real bad. I was on Prednisone for 3 months and would like to avoid ever being on it again. I take Probiotics, Fish Oil supplements and try to avoid gluten and dairy as much as possible. I am starting to feel better but healing takes time and rest is sometimes the best thing. Best of luck.

How often are you doing the Canasa?

I think you need the enemas which are a higher dosage of med and will go higher than just the rectum.

You could use the Canasa more often....

Fibre supplements can help bulk the stool.

q

Hi Sunshineonmyface,

It sounds like we are some of the newbies here in the forum, experiencing this stuff for the first time, and I definitely relate to your concerns.
I was also diagnosed last July. At that point--i now realize-- it was very mild disease, mostly in my upper rectum, though my scope showed it WAS present, on a cellular level, throughout my colon. Luckily I nipped it in the bud because --- oddly enough--- my 72 yr old mother had been diagnosed just a month or two before me.

When I was unable to come off the Asacol without my problems returning, in late september, I realized that I was going to be on meds permanently, which was really tough to hear. I have gone through a lot of denial with this whole thing, and am convinced that if I just find the right combination, ill be able to cure it. --I hope so-- Ive been trying. I became 100% dairy free (and i mean NO dairy products, not even in cakes, processed food, etc), and that helped significantly. It seems like you have also done this. After various attempts, hemming and hawing, and going back to it, I finally left GLUTEN behind. Ive been 100% gluten free since march, and no longer have any bloating (i used to live my life bloated). I also avoid all processed foods, preservatives, colorings, msg, etc. This also has helped. I can also say that I have had to cut out alcohol 100%. I kept trying to have 1 or 2 drinks every so often, but that inevitably brought back the bleeding. (FORGET about caffeine, or other stimulants. I think that played a role in the development of my disease)

After a few months of really disciplined eating, I was down to 1 (watery, diahrrea like) bm every morning. I still wasnt happy, I mean i wanted to have a "normal" bm, but it WAS regular, there was NO mucous and No blood.

I am currently in my worst state yet. I think its been my first real taste of the disease--13 bms, endless blood, and inflammation so bad I cant bend or stand too long or sit up  in a chair. BUT, I think I can attribute it to several triggers:

1) I tried probiotics (was having lots of yeast infections)-- and this gave me 2 weeks of diahrrea, which I kept ignoring, thinking I was adjusting.

2) I missed a day or two of meds, and felt fine, so decided to start tapering my Lialda on my own ===DONT DO THIS

3) Strenuous international travel--very stressful, complete change of diet--sudden increase of fiber (god i love rice and beans!!!)

4) more strenuous travel home with a head cold (Oh, did I mention a few alcoholic drinks in Brazil---how could i resist??)

5) followed right up by a 7 day course of flagyl for bacterial vaginitis (could this be related to the probiotics??? i dont know man, but my vagina flora is wack, just like my gut, im sure) ---OMG BIG MISTAKE!!!!

I just started prednisone (enemas werent helping) and I seem to be having immediate positive results.

AS soon as I get healthy again, I will be super conscious of any potential triggers, and make sure I dont let them add up and accumulate....

Hopefully that will achieve remission and keep me there.

I dont know if my long post is worth anything, but I do feel your frustration and can relate to your anxieties.

Best wishes for health,

StellaEstrela

  

Post Edited (gonnaworkthruthis) : 7/7/2009 5:34:18 PM (GMT-6)

holy crap...chocolate or coffee won't cause a flare.




The enemas are retention medication..you insert them at bedtime and retain them overnight. It takes a bit of getting used to, but after the 20 years of using them nightly for flares and then tapering to a maintenance dosage...I will tell you with absolute certainty that if you can use them...they will be your very best friend.

They work, they're more medication and cover up to and into the sigmoid..4g (4000mg) or you can start with the 2g (2000mg) dosage...Rowasa if you're in the US.

Start adding more basic foods into your diet. Can you eat eggs or more protein?

Coffee will increase the activity in your digestive tract, but whatever. You only drink 2 cups a day, definitely no biggie, and I'll bet you look forward to it. Unless it makes you sick to drink coffee, why worry about it. I have anywhere from 4 - 6 cups a day...on occasion more, but if I'm flaring, I'll definitely cut back if it nauseates me.

I don't think you're eating enough, especially since you've been doing so well.

Yes, I still feel bummed out when I start to flare, but after starting the enemas nightly again, I'm so much better after even a week.

Consider the enemas....very soon.

quincy

Noting my experience with enemas - I have tried Rowasa and hydrocodone and Proctofoam.  I am now using Cortifoam which is in a canister - you shake, fill up applicator and insert - very easy - and easy to retain.  My new gastro doc with 30 years experience prescribed it followed by Anusol suppository to cover the very end.  He recommended three times a day to start.  I have a problem doing twice - but doing my best to do it twice.  I have been using the suppositories three times a day almost every day as you can keep those in and work around the house, etc. Slowly my bleeding is stopping - I did not see any today yet!

 It is not fun - but neither is UC!

ElaineNY

Thanks for all of your encouragement. One thing that makes this so hard is that there is no one to talk with. I have a lot of "is this normal" questions. The blood freaks me out, and it's a guarrantee to ruin my day when I see it because I am scared to go on any more medicine. But if I knew it was ok to live with then I would be more relaxed.

does your hair fall out on the lialda? When I go to 4 my hair starts falling out like crazy, but I can tolerate 3 just fine. weird!