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10-14-2011, 07:40 AM   #1
botrel4
 
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Not better and sad...

I've been on Humira since August 8th of this year, got a rescue dose in between weeks on September 26th and have been on Entocort since then too. No change...probably worse... I know I have one stricture and I am feeling like I have an additional one. Beginning to wonder if this will ever be figured out and under control...
10-14-2011, 09:29 AM   #2
Crohn's 35
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Hey, we know how you feel!!! Humira peter'd out on me, in my opinion, just not strong enough, Remicade is stronger and helps fistulas but I was allergic to it. Strictures (in my own opinion) can't be fixed by drugs, had too many to count. That causes blockages and lots of pain. I had a resection to fix it. Some have had balloon and stricturplasty, but some didnt work on them. Have you been on Remicade? When was your last colonscopy, you could have not only strictures but scar tissue building too. Keep us posted.
10-14-2011, 09:38 AM   #3
Jessi
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Welcome to the family! I'm sorry to hear you're doing poorly atm.

Remicade works really well for me, and I've heard of a lot of cases of fistulas being taken care of because of Remicade. I'm not sure about strictures, though.

I know how you feel with the sadness. Sometimes, it's just too much to sit and wonder about what's going to happen. I try to live by the quote that's written under my signature. It helps me to be happier. I hope you and doctor can come up with a plan that works for you... and quickly.
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Dx'd with Psoriasis in 1993
Dx'd with Psoriatic Arthritis in 2004
Dx'd with Ulcerative Colitis on May 18, 2011

"Life isn't about waiting for the storm to pass... It's about learning to dance in the rain." ~Anon.
10-18-2011, 07:43 AM   #4
botrel4
 
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Thank you for the replies! After a colonoscopy yesterday, I was informed that I am now in remission. YAY! Although, I haven't felt like I'm in remission, but apparently the strictures are gone and there was no inflammation! My doctor prescribed a med (I haven't picked it up yet so I don't know what it is yet) to control my cramping. I sure hope it works! One day at a time...
10-18-2011, 11:00 AM   #5
Jessi
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That's fabulous news! I hope you continue to feel better and better. And I hope that the new med works for you.

Keep us posted.
10-18-2011, 01:41 PM   #6
tiloah
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I'm so glad to hear you are in remission. I hope the way you feel reflects that soon.
10-18-2011, 01:57 PM   #7
botrel4
 
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Thank you! I am happy that she said I am in remission. I just don't feel like it. I'm still passing blood and she said she could not find a source of that blood; and my colon is constantly spasming. The new prescription is to help the spasming and I sure hope it works - I just took my first dose at lunch time today. I guess I need to sit back, wait and trust that my doctor is correct. I just wish I felt assured in what she said.
10-18-2011, 02:17 PM   #8
Grant
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Wonder if they think you have IBS botre14 & the medication is to stop that spasm. Either way remission sounds great-well done.
Rgds
Grant
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1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection
2012 Laproscopic Laperotomy & Resection
2013 diagnosed with a Fistula
Been on Azathioprine Pred & Methotrexate
Currently on:
Inflectra
Questran
Loperamide
Calcichew
Pentasa 4gm daily
Daily Multi Vitamins
3mthly B12 Jabs
10-18-2011, 02:24 PM   #9
botrel4
 
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I really don't know, Grant. The medicine my doctor prescribed for the spasming is Chlordiazepoxide/Clidinium. I can take one every 6 hours. I sure hope it calms my colon down. I just read your history....you poor thing! You have had a rought road! God bless you!
10-18-2011, 02:49 PM   #10
Del
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Hi Botrel14.
I do hope you are in remission. Stay strong because you are given me strength!!!!!
Take care...
10-18-2011, 03:43 PM   #11
Grant
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botre14, Just had my stricture dilated but whether it'll hold up is debatable. Anyhow well done you, really hope your belly settles down & you can move forward.
Best Wishes
Grant
10-26-2011, 11:15 AM   #12
botrel4
 
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Thank you so much, everyone, for all of your well wishes and advice. I am happy to say that I am feeling better, the medicine for the spasms is working out nicely. I'm actually trying to plan ahead a little (in hopes that I can actually stop taking Entocort soon). I would like to plan to try to lose some of this pesky weight. I've been searching the web to find out how long Entocort stays in your system after you taper off. My nurse said not to try to lose weight while on Entocort, so I thought I would plan to lose when this is completely out of my system. Does anyone know how long after taking my last taper dose that I should wait?
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