Pentasa

grannyh · Post by **grannyh** » Sun Jul 15, 2007 9:48 am

I should say for anyone new.. I am OLD. Therefore I am willing to take whatever risk there might be in Entocort. I have also said I have insurance that allows me to purchase the Entocort for $50 a month instead of the $400 it would cost without insurance.

It took me almost two years to decide to take Entocort. During that time I almost died several times from dehydration.. only luck saved me.. happened to be at the doctor for other things when he realized I was on a downward spiral and would not recover without IV treatment to replace fluids.

The rehydration episodes at the hospital were depressing and humiliating! I was continually asked how much I drank, how often etc.. even with the diagnosis with me for Collagenous Colitis..no one even knew what it was! I was visited by substance abuse counselors who tried to pressure me into rehab for alcohol abuse! I was told it was my own fault that I was dehydrated and should just drink more water! There is no way to keep up fluid intake to counter the massive butt burning D!!!

After years of being trapped within a few feet of the "library" and still not making it in time.. I was depressed to say the least. I had gotten to the point I had decided I would NEVER go back to be rehydrated again to face the humiliation of having myself blamed again.. I had no life! I was willing to let "nature take it's course" rather than live like I had been. Since I had been offered Entocort I figured.. what the heck.. give it a try and if it doesn't work... then so be it!

This disease is baffling to most doctors and I sure had been to enough of them. Even with a diagnosis in hand and slides available for doctors to view I was told the illness was too rare and the diagnosis was wrong!

Everyone has to find their own way to deal with our illness.. what works for one person may not work for another. Since the doctor said the side effects of pentasa were probably worse than Entocort I went for the Entocort.. pentasa was his drug of choice as last resort...

I don't know what I would have done without this forum in the early years of this disease. I was given hope here that kept me going. The only doctors who approved of me going to this site for hope and help were my family doctor and the gastro doc I finally found who didn't treat me like I was nuts and the cause of my own problem.

I say whatever works.. at a level of risk you are willing take... go for it:)
grannyh

grannyh · Post by **grannyh** » Sun Jul 15, 2007 10:31 am

PS..I should add that I don't drink.. but try telling that to a substance abuse counselor when you have your head buried in a waste basket tossing your cookies while begging for rehydration and you have been ignored in the emergency room for 3 or 4 hours.. they only dig their feet and step up the pressure to join their program!

starfire · Post by **starfire** » Mon Jul 16, 2007 7:59 am

I am outraged about the treatment you received. I was also questioned about alcohol and drug abuse (and my husband was questioned about me) the time I went to the ER and they blamed it on food poisoning. I was throwing up, dehydrated and then the D started in earnest. I think they decided to keep me overnight just to get me out of the ER. The smell was horrible. I was actually too sick to care (much).

Anyway, I only had to go through that once. I hope you never have to go through it again. I'm sure I'd be willing to take the Entocort if I were in the place you were/are. So far Asacol is doing OK for me.

Love, Shirley

Post by **tex** » Mon Jul 16, 2007 9:11 am

Incidentally, Grannyh,

Where in the world did you ever get the idea that you are old? As far as I can tell, there are no old people in our membership. A few of us are beginning to mature, perhaps, but that's a long way from being old.

There's no point in trying to pull the wool over out eyes - we know better. LOL.

Tex

grannyh · Post by **grannyh** » Wed Jul 18, 2007 12:31 pm

Anyone eligible for Medicare is "old"..LOL

When I blather on about Entocort giving me my life back I want people to realize I am well beyond child bearing age since we don't know the long term effects of Entocort. However, knowing what I know now and that it has saved my life.. if I was younger and had a choice.. babies or life.. I think I would forgo the child bearing to be safe. Nothing else worked for me...

I can't eat everything and not have problems... fiber is still a big no no and I stay away from soy and never have fried foods... I can be happy with the few things I have to stay away from:)
grannyh

ajsmom514 · Post by **ajsmom514** » Fri Jul 27, 2007 10:52 am

Well, I was put on Asacol first... did not see any change in the symptoms. In fact, I think they got worse. More nausea, vomiting, the big "D"... wasn't too pleasant. So I took myself off of that. Then my GI gave me Pentasa. It seemed to work w/ the D. In fact, it turned into constipation, but constant nausea. Not too much vomiting, though. I cut the original dosage in half (ok, not literally, but only took half the pills) and things seemed to get better. But, I absolutely hate taking pills and these pills are the size of a small country, so I hated them even worse. I decided to try a GF diet on the off chance that I may be gluten sensitive. My cousin is a diagnosed Celiac, so it was worth a shot. The diet, I must say, has been wonderful. I'm hoping it stays that way. I might need to get a 2nd and 3rd job, though, to afford the visits to Whole Foods!

Good luck and good health to all!