Someone explain this before I have a cow!

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DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 10/25/2007 8:22 AM (GMT -7)   
So the specialist was just a surgeon, but he was able to get us in really quick (since we're out of town I'm sure) with a GI guy who is apparently a God to hear his patients talk about him.  Unfortunately he's retiring Dec 31st, but we'll deal with that later.  I was scared when I went in b/c I was bleeding a lot and bad urgency, etc, so I was afraid it was getting worse.  Since I didn't get to see the guy originally on Monday, I had taken 40mg pred just to try and queal the pain since it was so constant, but it did nothing.  After I talked to the guy on Tuesday afternoon (before I took a second dose of pred) we decided on Remicade and Imuran which is TOTALLY stressing me out.  Took 30mg pred (weaning down 10 a day till it's gone).
Well, that night I went and ate at Pancho's in a deep funk.  For those who don't know what that is, it is THE worst for you fake mexican food in existance, and I ate a lot of it.  Even when I'm not sick i shouldn't have made it out of there alive.
But I did.  And I didn't have to go to the bathroom for 3 hours.  And then it was a non-event really.  So I waited all night awake for it to hit.  Nothing really.  Went at 4am,5am, 6am, and 9am.  All mostly non-events except one that I had to wait on the bathroom.  No blood, very very little pain.
WTH?  The day before I couldn't eat a straight up hamburger patty...or anything AT ALL for that matter and was sick as a dog.  So the 40mg of pred just miraculously works after the heavy dose in the hospital did almost nothing?  And it's been getting better too.  He did a sig scope yesterday and sure I felt like crap after that, but still.  What, this whole time I needed to be eating the worst food possible in existance?????
So now I'm really doubting starting this super expensive treatment, however I know it will come back.  I just hate so much drug, and being so bound to it to keep me well.  But what the heck?  Is it placebo since they are so sure I will get better on the Remicade?  I don't take it till tomorrow morning.  I'm so stressed about all of it, especially now since I don't know if it's the right thing to do.
I have still had a few runs to the bathroom.  But this is really freaking me out.  I know last time I had a colonoscopy it cleaned me out and I was well the next day, but this was even before that point.  And I do still have ulcers and they were bleeding after he irritated them with the scope.  But I have been more well since I started getting help Tuesday night than I have been in 5 months!!!!
 
dx late April 2005 with pancolitis UC after birth of my son (second child)... meds didn't work (or rather they would work and then randomly stop)
Started SCD and vit e enemas 12/9/05...that and meds = remission 12/11/05, off meds 12/20 (were on the way out before that), stopped continuous enemas 3/23 and use them only when I feel a flare coming on. 
Beautiful perfect baby boy born with no drugs and only vit e enemas during pg - 10/14/07
He also had no gas or discomfort while nursing from me being on the diet.
Didn't use the enemas last flare since I was nursing and regretting it now, wasted time in the hospital with drugs that did nothing but ravish my body, now on my own and almost better... vit e, weaning pred, licorice
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/25/2007 8:31 AM (GMT -7)   
Hi Denise,

I am debating the remicade myself, my PPD test is not until Nov 5th and I am doing better not sure if it's the pred or the hydrocortisone e's are helping but those took a flipping month!!! I have never heard of that (though I stopped the 5ASA's cold turkey) and I just started the imuran 1.5 weeks ago. I don't know what the heck is helping me!!

My plan is to do the PPD test and see how I am before starting remicade and if I feel that I am ok and want to wait for the imuran to kick in then I will let my GI know.

If you are doing better then let your GI know and get your tests done and then wait some time if you want to before starting remicade. I don't know the long term solution though.......

sorry, for my ramblings.......HTH!
Beth
Beth, 32
UC Diagnosed March 2000
Imuran 100mg 1xday;Remicade tests pending;Hydrocortisone enemas 1xday;Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Potassium 600mg 1xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 10/25/2007 9:38 AM (GMT -7)   

Denise and Beth, ramble on! I don't have any answers and we are in a similar boat with my daughter. She's been on 60 mg of prednisone for 2 weeks and the doctor doesn't feel she has improved enough on such a high dose. Waiting to get the bloodwork back about starting 6-mp. He did mention possibly starting Remicade until the 6-mp kicks in because he can't leave her on such a high dose of steroids for so long. He took her off Asacol for about 5 days to see if that was causing a negative effect but then decided it was OK to put her back on (but at 6 pills a day not 12).

She seems to be getting better (although quite slowly).  Her morning bathroom routine is not as intense or so lengthly. She has made to school part-time every day since last Friday (after being out 1 month). Of course she will be out next Monday and Tuesday for her prep and colonoscopy.

So like both of you, does she start new medicine and if so, what? In the back of my mind I would like to believe that she is just one of those people who take awhile to have the prednisone kick in. The nurse practitioner who I often speak with says sometimes we see things because we really want to believe it (as in my feeling that my daughter is mending) but that we will see exactly what is happening with the colonoscopy. And then we can make some decisions.  


--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday
hydrocortisone enema nightly, rowasa in the morning
40 mg prednisone daily
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly!
Summer 2007 - slowly began tapering Rowasa
9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/25/2007 10:16 AM (GMT -7)   
Bennie - I had never heard of pred taking a while to kick in. I thought it wasn't working b/c it took so long for me, but again, I did stop the 5ASA's after 7 years. Something is helping me and it has to be the pred or the hydrocortisone e's, but they are both steriods so one couldn't help but not the other....could it?

I am so sorry your daughter is going through this. My thoughts are with you both.
Beth, 32
UC Diagnosed March 2000
Imuran 100mg 1xday;Remicade tests pending;Hydrocortisone enemas 1xday;Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Potassium 600mg 1xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 10/25/2007 1:18 PM (GMT -7)   
Denise - sometimes Mexican food does that to me - especially if I have any sort of beans with it. Sometimes it's a "miracle" food for me! Must be something with the fiber :)
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Forvia and a Probiotic
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


DeniseW
Regular Member


Date Joined Nov 2005
Total Posts : 346
   Posted 10/25/2007 4:41 PM (GMT -7)   
I hate this dag gum disease, it makes no sense!!!

It's so great you're so involved Bennie. I am so glad mine waited to kick in till I was older and I hope you can get it cleared up for her. I did talk to a few people who had been on Remicade for like 8 years and it's helped them the whole time. You just can't ever get off. And from what I'm told you take imuran and remicade for 9 months and then get off everything but the remicade. I'm thinking if I only have one drug, no matter what it is, I will feel better. Especially if it's not one I have to take every day you know?

I was also told that they have 4 of the genes for this, so gene therapy should be within our lifetimes at least.

I am still running and still bleeding, though only going like twice a day now. I think I'm going to go on it and hope I can be on only that.

Beth, I'm not sure what ppd is. Is that the test for inflammation? I had that done and it was +. Either way, I'm just tired of the roller coaster and this place makes it all sound so dreamy. I'm sure it's not that nice (and one lady said she gets 3 days of headaches even after 8 years of it), but I guess I'll take it a day at a time. Too bad I have to drive 3 hours each way to get it! The people are very nice there though and said people drive way more than that all the time just to get it done there.

:( Hate this stuff.
dx late April 2005 with pancolitis UC after birth of my son (second child)... meds didn't work (or rather they would work and then randomly stop)
Started SCD and vit e enemas 12/9/05...that and meds = remission 12/11/05, off meds 12/20 (were on the way out before that), stopped continuous enemas 3/23 and use them only when I feel a flare coming on. 
Beautiful perfect baby boy born with no drugs and only vit e enemas during pg - 10/14/07
He also had no gas or discomfort while nursing from me being on the diet.
Didn't use the enemas last flare since I was nursing and regretting it now, wasted time in the hospital with drugs that did nothing but ravish my body, now on my own and almost better... vit e, weaning pred, licorice
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/26/2007 6:27 AM (GMT -7)   
PPD test for tuberculosis, I think they inject me and see if I swell.
Beth, 32
UC Diagnosed March 2000
Imuran 100mg 1xday;Remicade tests pending;Hydrocortisone enemas 1xday;Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Potassium 600mg 1xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

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