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HELP with Questions for GI on TUESDAY...(tomorrow)

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Crohn's Disease
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Posted 2/17/2009 1:39 AM (GMT 0)
Sorry, should of posted this a while ago..

Here's my story, as short as possible:
Dx Nov 05 after a fissure was found in Jun 05. Had an emergency colonoscopy after flagyl & cipro TORE me up. Go under control with Entocort & Rowasa. Got better and started to wean off meds (except Entocort). Crohn's was found in large intestines and primarily rectum & sigmoid. Had severe abscess that grew enormous before I knew what it was. Was in ER twice and 2nd time it got drained and I was admitted to hospital because of pain. Got pain under control, gave me 40mg of Pred, colon surgeon got me into a GI fast and the GI put me on Colozal, Rowasa, Steroid Enemas, and upped my Pred to 60mg, and gave me a few other things. 2 weeks into that treatment, I started to refract (got better, and then started going in reverse). GI immediately switched me to Remicade after they continued to find fistulas, fissures, and abscesses. I met the GI in January, and started Remicade mid-February 06. By May 06, I was in remission. Went through infertility treatments, go pregnant Feb 07. Delivered Aug 07, started to feel off, I was on Remicade every 8 weeks at 5mg/kg and doing fine (amidst a lot of stress with a premature baby and my other daughter's funeral). Called the GI in Jan, because just wasn't feeling any better once the pregnancy hormones wore off. I opted for a colonoscopy before making any change of protocol. Colonoscopy showed mild inflammation. He recommended Imuran, I disagreed. He referred me to a GI at a bigger hospital with more research. Met new GI in Jun 08. He was great, we changed the Remicade to 10mg/kg every 8 weeks...unfortunately, I was too far into this flare and had no idea. Rushed via ambulance in early Jul 08 because of pain. Spent 8 days in hospital with PICC line, cipro, flagyl, sigmoid colonoscopy, dilaudid for pain, and complete bowel rest (all liquid & clear liquid diet). They put me on 40mg of pred. Tried to wean me off, I flared.. they bumped my Remicade to every 6 weeks (10mg). Tried to wean off Pred again...flared bad. Bumped me back to 30mg and I held on that. I had to decide on clinical trial or Tsyabri. I chose trial. Started trial in Oct. It's Feb 09, trial NOT working. I'm on 6-9 pain pills a day along with xanax, phenergan, and levsin fairly regularly. I'm maintaining weight, but only because of all the meds. These are obviously short-term meds..

I'm still having regular pain and cramps. I see the GI tomorrow... He's recommending:
Tysabri
Humira
Cimzia
Methotrexate

I'm against Tysabri for obvious reason. Again Methotrexate because I'm in my child bearing years. My surgeon has been examining my file and consulting with other docs for the last week or two and I see in March 3. We might consider a temp ostomy.

Can you all help with questions to ask the GI? I'm at a blank, though I know I'll have a huge list by tomorrow afternoon and once I get started with questions, they'll start coming to me faster.

Thank you guys! You've all been a tremendous amount of help/support the last several months...
Posted 2/17/2009 3:40 AM (GMT 0)
If I read this right, you are on Pred 30mg and off the clinical trial right? Humira is another TNF drug similar to Remicade and there is a good chance that it will work for you even though you developed a resistance on Remicade. I have used all three TNF drugs and failed Cimzia as well. Humira worked very well for me for over a year. Just remember that with any TNF meds there is a risk for infection but there exists that with Pred as well. The pain meds can also cause a rebound pain effect on your intestines. This is when your body gets used to the pain meds and the intestines actually suffer from taking to much. I too take pain meds and was told this from my MD. But, I understand the reason they are needed, boy do I understand the pain. My case is also complicated and I am so sorry you are going through this. Have you tried Asacol? Mild but could be added on.
Posted 2/17/2009 4:30 AM (GMT 0)
Wow, that's even worse than what I've gone through the past 8 months.

Check out my thread, Humira or Surgery. At the bottom I posted the questions I'm going to be asking the surgeon, maybe it will help you.
Posted 2/17/2009 5:01 AM (GMT 0)
I was on that trial you were in for a year (ABT-874) and it seemed to help a little but not enough to say I was going into remission. with my next scope(A year later) they found pre-cancer cells and I think it was all the drugs I've tried backfiring on me. (Preg. Remicade, Humira, Methotrexate) Hope you find your answer and it makes life easier. Children need their Moms.
Posted 2/17/2009 5:05 AM (GMT 0)
Can you get in the Prochymal trial?
Posted 2/17/2009 5:22 AM (GMT 0)
do you know where your current flare is located? When you say flare, what are your major symptoms? blood, D, urge or constipation? fevers? how many times a day? Since you need to get off pred, you should probably talk to him about humira before surgery at least to get you in remission for a little bit and get your body/head on straight for a while.

I'd be against tysabri as well. Before surgery i'd want to know that it would be effect because if your inflammation is diffuse and spread throughout your large and small intestine, surgery might not help and the disease could re-occur. also what kind of surgery would it be? full colon or resection? After surgery what meds would they put you back on for maintence? if they don't think surgery will put you in remission for aw while, i'd ask them to recommend you for trials. the last thing you would want is a major operation only to wake up sick again.

Vin
Posted 2/17/2009 5:57 AM (GMT 0)
Thanks guys..

I'm actually NOT on Pred. Pred does awful things to me (cataracts, high blood pressure, swelling, the list goes ON!) After the high blood pressure, that was the final straw. GI said NO MORE...

So, I think I've narrowed it to Humira or Surgery. I have all over large intestinal pain, plus on and off rectal pain. I don't suffer much from D,but every several days, I sort of flush and it turns to pudding. I do suffer from what "feels" like constipation, but then it's usually mush behind it. I have not seen blood in the toilet, but I wipe it.. and you can never know if it's in the stool sometimes.. sometimes it's green.. sometimes it IS streaked with blood.

Trigirl - Yes, I felt like I got a LITTLE help, but not NEAR what I need.. I really was expecting MUCH more from it...the joint pain is about to send me over the edge..

Rider - Going there to check it out! Thanks!
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