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sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 7/11/2009 9:04 AM (GMT -6)   
I'm so tired of battling this disease lol.

So to bring up to speed... last time I went in he didn't believe I even had UC because I was in remission... but because of the symptoms I reported after tapering off of prednisone he decided to do a flex sigmoidoscopy. He said I have active UC up to 30cms. He put me on Rowasa and 50mg of 6mp..keeping me on the Lialda.

This visit I told him my symptoms yet again... and he said I knew you were going to be a tough case. So he suggests pred. and I tell him that I refuse.. I just don't want that for myself again. Plus every time I take it..I taper off and am immediately in a flare again. He said well there's not many options.. this whole time pushing that if I got surgery the disease would be gone. So then I said..what about Remicade? He said it was an option, but we'd have to get it approved by my insurance. I said well then by all means lets go on Remicade. So then he says it will take 3-5 days to get approval and within a week after that to get the first infusion. I said shoot and I'm going on a cruise... he goes a CRUISE? I said yea next friday and he goes.. that's not a good idea. You'll have to be on pred. I said no I refuse...what about steroid enemas? He said we could try those, but he prefers pred. He said that it's possible if I let it get worse to get Toxic Megacolon and have to go to the hospital.

So my first infusion will be after the cruise.. we can't get a refund from the cruise or I wouldn't go.

He's upping my dosage of 6mp to 100mg, which makes no sense to me if he's just going to pull me off of it after the first infusion. Plus I'm scared it will have negative side effects at such a high dosage. And he's switching me from Rowasa to Steroid enemas.

My husbands scared about the side effects of Remicade...and honestly so am I, but I want remission.. I want it soon..not in a few months. I've heard a lot of people on here go into and stay in remission on Remicade.

btw.. I also asked him if my black stool was from any meds I was taking.. he said it was worrisome of an ulcer or it could be old blood coming down.. He tried to do a rectal exam, but didn't have any stool to see the color. Btw..oddly I didn't feel as violated as my first time getting a rectal exam. I think because I knew what to expect and I've had so many other things stuck up my butt by now LOL!!!!!!!!!!!!!!!!!!!!!!!
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 

Post Edited (sweetmelody) : 7/11/2009 10:15:07 PM (GMT-6)


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 7/11/2009 10:16 PM (GMT -6)   
my husband keeps saying he's afraid of losing me... cuz of the cancer risk with Remicade.
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 7/12/2009 1:34 AM (GMT -6)   
melody,
Yes, the risks of meds is always a concern.....

I do hope the steroid enemas are of help to you and that your cruise isn't badly hindered because of the flare you're in. How long are you going for?

q
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16289
   Posted 7/12/2009 6:05 AM (GMT -6)   
Poor thing. You should get a colonoscopy to check out what might be causing the black stool. Do you take iron pills? They can make your stool really dark or sort of green.
 
I hope Remicade helps you.
Diagnosed with mild proctitis in March 2007: Treated with Canasa (as needed)
December 08: Began treating with Asacol 400mg (9/day) + Canasa 2x/day - Anemic
May 09: Off Canasa, taking Asacol (9/day)
Back on Canasa every other night + Asacol (9/day) + Probiotics + Iron
Reducing to 6 Asacol/day + Canasa + Probiotics + Iron - So far so good!!! -SPOKE TOO SOON! Back to 9/day...


WIMOMOFTHREE
Veteran Member


Date Joined Apr 2009
Total Posts : 654
   Posted 7/12/2009 7:00 AM (GMT -6)   
I'm scared of the risks of remicade too.  I start mine on the 23rd of July.  All the medications have horrible risks or side affects.  Good luck on your decision and have a great time on your cruise.  I know you don't want the pred but could you just go on it while you are on the cruise?  Pred works instantly for me(I do flare when I go off it too) but maybe you wouldn't have to worry about UC on the cruise and you could enjoy your vaction better.  Just athought.  Good Luck!

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/12/2009 7:37 AM (GMT -6)   

My thoughts were the same - short burst of prednisone to have a great cruise - unless prednisone gives you immediate side effects.  Personally, I wish I could take more prednisone but I am older and not afraid of future problems!  As for 6 MP - the side effects when my doctor raised me to 75 from 50 were immediate but if they are too bad you can drop 6 MP immediately with no problems also. I also have protosigmoiditis up about 30 cm.  Only on rectal meds and this week and next last of the prednisone!  Doing well and nearly in remission. I am happy with "nearly". 

Good luck and have fun on the cruise!  Do you take pepto bismal  - that can cause black stool!

As you know, I take small doses of Imodium when traveling.  Going to NC for a few days next month.  Already planning later flights, etc. and taking my Imodium regularly after morning BM, etc.  Always has worked for me and prescribed by my doctor.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works!
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 7/12/2009 10:53 AM (GMT -6)   
don't take pepto or iron pills.. :/

I would do the prednisone if it didn't just always SUCK for me lol. Every time I've been on it my doctors have said oh it will only be a short round... and i'm always stuck on it for 6 months. I just can't do it to myself again. It's ruining my marriage to be on that awful drug. I JUST got off of it and started losing weight. I refuse ... I know it would help me immediately, but I just can't do it to myself. I am HOPING steroid enemas will get me steady enough to enjoy myself.

Last time I was on a cruise was on my honeymoon.. I took Imodium every day and once I got home was so bad I should have been in the ER, but we had no insurance. I'm not sure if using it so much is what caused it, but now I'm nervous about it.

I will try it every once in a while if I'm too bad to do anything... but I'm gonna try to make it without it. I will be taking half a vicodin to get me through the plane ride to FL. and to get through the waiting to get on the boat. It's a 7 day cruise.. and I AM nervous about going on it, but we can't get a refund and I refuse pred. so I don't really know what else to do.
Kara, 22F Married.
Latest - Lialda 2 twice a day. Left Sided Colitis 40cm up...flare. Also IBS.
Medications: Lialda 2 twice a day, Align probiotic, Hyomax as needed, 6mp 50mg a day, Rowasa enemas.
I am so sick of this disease!
 
 


WIMOMOFTHREE
Veteran Member


Date Joined Apr 2009
Total Posts : 654
   Posted 7/12/2009 11:38 AM (GMT -6)   
I asked my doctor about taking Imodium or pepto.  She told me noway.  People with UC shouldn't take that stuff.  I never have.  She said something with the bleeding and inflammation.  Maybe that will help you.  I've never tried it because she said not to.  I don't want to make my UC worse.  As if! tongue

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/12/2009 12:15 PM (GMT -6)   

Most gastro and other doctors tell you not to take Imodium or Pepto for obviouos reasons - it masks the true symptoms and you just don't know whether you are getting better or not.  I have two gastro docs now - one who has over 30 years experience.  He knows that I know how Imodium and pepto affect me and that I am cautious - always take it AFTER my regular morning BM or two.  Never take it when not needed and pepto only for the worst nausea.  BUT - I have been taking it for over 30 years for IBS so I know my system.  He prescribes it regularly for those who need to have some control to work and go to school, etc.  On days at home I do not take it - and you soon find out how well your UC is doing.  I would always take it on vacation - but still in very small doses and only when needed!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works!
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 

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