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Just got back from GI with scope results, I need meds plain and simple

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Ulcerative Colitis
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Posted 8/2/2010 5:32 PM (GMT 0)
I'm working both ends, Heather has said that repeatetly! Plain and simple I need meds. I went from mild to moderate, left side ulcers but the whole colon is inflammed!

12 asacol a day (I opted for this since it worked 6 years ago) but I have never taken 12 before I think it was 6 at the time.

Rowasa enemas at night.

I can't not do without meds, I've tried. Medication will be my friend that's all to it.

My attitude is great right now, pray it stays that way. For some reason when I take meds, it get depressed. I really believe it gets all the yeast fired up in my system, so I will do low, low sugar and high and a ton of probiotics.

Thanks for listening.

WE can make it, but I need medication to do it. I'm done beating my head up against a brick wall.

 

Posted 8/2/2010 5:55 PM (GMT 0)
Wow, so your UC has spread now...you have had lots of other stuff going on in there that probably contributed to it.


Yeah, I'm a med-lifer. resigned to that fact 20 years ago.

You see meds as a failure...it's a perspective you need to change.
Expect it to take a few weeks to settle.

Hang tough....it's frustrating, I know. YOu gave it a fight...but I think the fight was more your perspective than anything else.

q
Posted 8/2/2010 6:11 PM (GMT 0)
Hugs - I'm a med-for-lifer as well and it's ok.

Have you considered remicade? It's working wonders for me; I'm down to only Lialda and Remicade, and many of my fellow IBDers in the remicade room are off everything but remicade. You wouldn't be "med free" but you might not have to take pills every day.

Also, look into Lialda instead of Asacol. It's the same medicine but you take it just once a day.

Both of those treatments are BIG $$$$$ if you don't have insurance - but if you do, they might be worth a discussion with your doc.
Posted 8/2/2010 6:16 PM (GMT 0)
You are right, I didn look at meds as a failure and now my attitude is I need medication to get well.

Thanks Heather for your support, you're truly experienced (unfortuatley) in this stuff. You will email people all day long to help.

You're one of a kind!

Thanks,

Linda

Erinkate23 my doc said to try this first, she calls remi and all the immuno "big guns" she wants to wait, so I will the asacol/rowasa first. Thanks for the hugs, hugs to you as well! That means the world!

 

Posted 8/2/2010 6:20 PM (GMT 0)
Better living though chemistry.
Posted 8/2/2010 7:35 PM (GMT 0)
Meds for life here too - even though many I can't take.  I do rectal meds now as needed. 

My husband who has COPD/lung cancer/hypertension and congestive heart failure would not be alive without tons of meds - I am convinced!

ElaineNY

Posted 8/2/2010 7:35 PM (GMT 0)
The way I got my head around being a med-lifer was to think, well, my gut doesn't work right because of an imbalance or lack or a certain chemical, so I have to take it in pill form whereas others have it in their system naturally.
I know that's not good science - but it helped me, as a metaphor.
Posted 8/3/2010 10:38 AM (GMT 0)
I'm a med-lifer as well and trust me, I fought it in the beginning much like you were doing. But I like Songlady's reasoning. Our guts just don't work right for whatever reason so we have to do the best that we can so we can lead normal lives. Trust me though when I say, that it gets easier and easier, regarding your meds.
Posted 8/3/2010 2:47 PM (GMT 0)
Some people with IBD have managed to stay off meds, but for me there is no shame in taking meds for life, especially mesalamine since it protects against colon cancer also.

There was a book I read called "Maker's Diet" by Jordan Rubin. He has been able to stay off meds by having an incredibly restrictive diet. That is not practical for me, but some people like cooking and are willing to spend the time and money necessary for this approach.
Posted 8/4/2010 2:18 AM (GMT 0)
That's the problem, I don't want to draw attention to myself by being extremely restrictive about what I eat, or ruin enjoyment of social events surrounding food where there's always something I can eat if I'm not too picky. And I hate to cook!!

I seek a healthy balance, physically and emotionally.
Posted 8/4/2010 2:34 AM (GMT 0)
I actually never had any aversion to taking meds for as long as I need them. Don't get depressed about it! You're not the only one and it doesn't mean you're giving up. It means you're doing what you need to do.
Posted 8/5/2010 1:20 AM (GMT 0)
Wow some great posts. I was just told by my doc I'll be a med taker for life too! I just don't know when I'll have room for food. He starting me off with the high dosage of the enema type anti-inflamitory...4 pill 3x per day plus other stuff. (see signature).

The scary thin is not knowing how your body will react to it all..and reading the side-effects like "hair falling out"...may not mean much to the men but us women it's our signature!

what a journey I have to take to keep my colon!
Posted 8/5/2010 1:58 AM (GMT 0)
I don't see ever getting off meds at this point. Well, unless I am completely misdiagnosed and I eventually find the true root of my problem but it doesn't seem like this is going to happen... I've been through so much and everything is points to UC from the results I've received.

I seem to have stopped responding to Asacol. If it helps you, that's GREAT. I loved when Asacol was enough to keep me in remission.
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