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Remission Isn't All I'd Hoped

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Crohn's Disease
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Posted 5/10/2011 3:10 PM (GMT 0)
We risk our lives taking biologics and remicade to achieve remission and we only get back about half we hope for.  When cancer patients go into remission, their tumors shrink and disappear.  With us CD'ers, that doesn't happen.  The damage that's done is still there.  Granted, we don't get new stuff, but we still must endure the blockages and strictures created by the original stuff.  We can't even (most of us) go back to eating all those great foods we used to enjoy.  about the only benefit I can  see is no new damage and maybe the D goes away.  We still risk major infections, pancreatitis, liver damage, blood chemistry damage just to keep taking the meds that give us the remission.  What I wouldn't give to be able to eat a garden fresh tomato, or strawberry shortcake.   Remission may have its perks, but life still seems pretty bleak.  Has anyone been able to eat normally again?  Please give me some hope that it's possible.   I am starting to feel overwhelmed. 
Posted 5/10/2011 3:28 PM (GMT 0)
I know it can seem bleak, but really life can be pretty darn good once you finally get things REALLY under control. Blockages, if they are happening, mean that the damage is done, and if they are not taken care of by your current medication, then either you need to move on to more aggressive meds, or its scar tissue and that means surgery. On the upside of surgery, the damage has been removed and then you can move back down to less aggressive medication, possibly.

Now on to Tomatoes and Strawberry Shortcake. I'll tell you what I do, cause you are barking up some of my favorite trees. For tomatoes, I cut them up into a small dice, add some basil, salt, pepper and a nice drizzle of olive oil. Let that sit at room temp for a bit, till it gets nice and juicy. Then I grill up some crusty bread, and serve. For my pieces I put just the juice on the bread. Everyone else puts the tomato bits on. You get the flavor of the tomato, without the pain.

I do a very similar thing with the Strawberries. I put lots of sugar and a bit of lemon juice on them and let them sit for a good long time. Then when I make the short cakes, I just use the juice on mine. I get all the flavor, without the pain. It isn't the same, but it gives me the flavor I am craving with out putting me int the hospital or sending me to my bed.
Posted 5/10/2011 3:33 PM (GMT 0)
I feel you ODT!! I just recently had a vent post about tired of being sick all the time, and I too am in remission. I can't eat many things I used too and it does suck, but like Zanne mentioned you learn to find new favorites. Or learn to modify things.

Vent away my friend, all of us do understand. Hugs!
Posted 5/10/2011 4:10 PM (GMT 0)
Even worse is taking all the meds and not even achieving remission.
Posted 5/10/2011 6:39 PM (GMT 0)
After I had my ileo and ops for strictures I can eat everything except mushrooms as they can be fiberous and have a form of skeleton and one very chewy large field one got stuck 3 years ago and caused a blockage that sorted itself out after 3 days but have avoided since just in case even though I have eaten them for years without problems.

Even when I flare now I can carry on eating normally so there is hipe but if you have strictures and they haven't been cured by medication then maybe surgery to remove them may be next choice.
Posted 5/10/2011 8:56 PM (GMT 0)
@Zanne
Thanks for the suggestions about tomatoes and strawberies. I will try those. Right now, I have just been diagnosed with ulcers and am waiting to hear what is causing them. Also had lab work and found out I can't take 6 mp so that limits my options. Am going through a lot of bumps in the road right now and having to dp it alone as hubbie passed away a year ago and no kids. My dog is cute...but no help! Having lots of pain from the ulcers right now, too, which makes me tend to want to vent a lot. So far, I don't tolerate any pain meds except Tylenol which is like eating M & M's with this pain. I'll still keep plugging away. Thanks all for your support and understanding. Also on Pred which helps increase flares LOL.
Posted 5/10/2011 9:16 PM (GMT 0)
Hey ODT I have issues with pain meds myself. Have you tried taking a 1/2 tab instead. Thats what I do and while it doesn't take my pain 100% away, it does take the edge off so I am not so miserable. Just fyi!

Also, when you feel sick day after day it does tend to wear you down. My recent vent was at a time that some meds for bronchitis and a new Probiotic were messing up my guts and making me sick, and it does get to you after awhile. So we do understand your suffering. So vent away, believe it or not it does help a little, helps you not feel so alone.

I also wouldn't say you are in remission though with all the symptoms you are having. My problems in remission is that since I had my resections my tummy is so much more sensitive and things just make me sick very easily, it sucks! Big hugs and I hope you get feeling better!!
Posted 5/10/2011 9:39 PM (GMT 0)
I just wanted to add that I bet that cute little doggy does help! I know my new little kittens helped a lot while I was recovering from surgery. Maybe not the way my family did, but they sure did entertain me and the snuggles were priceless. And during the long days when my husband was working late, and my daughters were at school, it sure made the house less lonely!!!!! turn
Posted 5/11/2011 6:15 AM (GMT 0)
Animals are amazing. I have a miniature dachshund named Penny, and used to have a black lab mix named Midnight, who died recently. Ever since my diagnosis, whenever I'd have a particularly bad session in the bathroom, they would come into the bathroom and try to comfort me. Penny cries until I picked her up, then tries to lick my arm. Midnight would sit next to me and rest her chin on my knee. It helps sooooooo much, at least emotionally.

Also, it bugs me when people say "At least it's not cancer!" as if somehow nothing, in any way, could ever be as bad as cancer.
Posted 5/11/2011 12:35 PM (GMT 0)
My husband had a saying on the mornings after when he had a hangover

I'm so sick I feel like I'm dying - and afraid I won't!!!
Posted 5/11/2011 7:14 PM (GMT 0)
Hey I just wanted to add... that just because you can't take 6mp, which I didn't really get why you can't or maybe you didn't say. But I can't take it because it messed up by hemoglobin and hemocrit levels for months to wear i have to be isolated and its very dangerous.

Granted I cant take 6mp, I can still use remicade, imuran, humira, cimzia, methotrexate, tysabri, and many others. so its not nearly or remotely that since i cant take 6mp that I'm really counted out of an entire category or anything... 6mp might be a doctor or YOUR doctors favorite go to immunosuppresent, but that does not mean AT ALL that its going to be the best drug for you what-so-ever. It might take quite a few tries on different immuno-suppresents before you find the one or the COMBO that helps you the most.
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