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Just got home from the Dr... UGH

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Ulcerative Colitis
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Posted 7/14/2009 10:44 PM (GMT 0)
Hey everyone~

    Just got home from the Dr..  he's upping my Prednisone to 60mg. for up to 2 weeks maximum and starting me on a new formulation of Mesalamine called Arpiso.  I'll be taking 30mg of pred AM and 30mg PM.....  As far as the Apriso... It's newer than Lialda and he said the findings he's read on it so far look very promising...   Then if I don't get cleared up within a 2 week period,  I have to go back in and try a medication like Humira or Remicade....   So, that's the news... I feel a bit depressed but hopeful that this new 5ASA with the combination of Pred will do the trick...    he said I am already a candidate for surgery if I want to consider that, but with the location of my disease, I'd have to have a permanent colostomy bag... but at least I'd be cured.....   I'm ok with everything.. just hard hearing the word surgery and colostomy bag... I can't imagine going poopie out the side of my belly into a bag for the rest of my life....

   

Posted 7/14/2009 11:04 PM (GMT 0)
Why would you have to have a perm colostomy? I hope the Arpiso works for you.
Posted 7/14/2009 11:04 PM (GMT 0)
You poor baby!! I am sooo sorry that you are feeling so bad right now. Wow, what a tough decision. I can't offer you advice but I can offer support and an ear for whenever you need to talk, whine, *****, complain or just talk out the options. We are all here for you. Sending you many many many ((((((((HUGE HUGS)))))))))). I pray that you find some relief soon.
Emilie
Posted 7/14/2009 11:11 PM (GMT 0)
Hope that the new combo works! I'm on Apriso...I switched from Asacol for convenience, as I was having a lot of trouble remembering my noon dose and sometimes my evening dose. I was doing well on Asacol, and Apriso is working just fine as well.

Salix (Apriso manufacturer) has a program where you can be reimbursed for your copay, up to $50/month. All you have to do is fill out a form and take your "card" (which is actually is a 8.5 x 11 paper) to your pharmacy. It's nice, because my copay for it would be $35/month.

http://www.salix.com/products/apriso/reimbursement-info.aspx
Posted 7/15/2009 12:25 AM (GMT 0)
Thank you so much! Yes, I am really praying that this new combo works...

and Yes, fruitigirl, I got 2 of those cards, my doctor is so good about giving me samples he piled me up and gave me two of those program cards... I'm happy to hear that it works for you.. makes me a little more hopefull that it will work for me too!

AMK77, I don't know why I'd have to have a permanent colostomy, probably because they'd have to remove my rectum and/or Anus and I don't know if they can rebuild another one since my disease is so involved there... that's the only reason I'm guessing.. If I ever have to talk to a surgeon, I'll be sure to ask... I remember reading about people here who have had 2 procedures, yes, they have a bag but for a short time, then they do a drop-down procedure.. but I think you need an Anus for that then they rebuild your rectum.. I don't know for sure and hopefully I won't have to find out... lol...

Gurgling Tummy.... Thanks just ever so much for the support... got tears in my eyes... that's just what we need sometimes... someone who's just THERE.. ya know?? Sometimes words aren't important and thanks so much... :)

I'll keep you all posted on how it goes tomorrow on the higher dose of Pred and the new Apriso... FINGERS CROSSED TIGHTLY!!!!!
Posted 7/15/2009 1:41 AM (GMT 0)

DON'T LET YOUR GI TELL YOU WHAT KIND OF SURGERY TO HAVE!!!  They aren't the experts and don't know.  If you get to the point of surgery consult with the best colorectal surgery you can find.  I have never heard of a UC patient getting a colostomy for UC.  A colostomy will not remove all of the UC.  Stupid doctor!!

Sue

Posted 7/15/2009 2:33 AM (GMT 0)
A doctor caused my UC and a doctor made it worse. Only after I threw away the drugs and learned how to be healthy did I become better. It took me years, but I am now textbook-perfect in the bathroom every single day. No doctor is going to start chopping off parts of me because they are too imcompetent to do anything except keep poisoning me in an attempt to squash symptoms instead of working with me to restore health.

I am sorry if this sounds harsh, but I am living proof of this reality. I don't want anyone else to have any more pain or misery due to the utter ignorance of American doctors regarding health.
Posted 7/15/2009 4:14 AM (GMT 0)
I was told it's better to take the prednisone all at once, interesting.
Posted 7/15/2009 5:33 AM (GMT 0)
Hi qazwsx12,

I just read your post and did some research on that.. because it does make sense to me that it might work better if taken all at once (HIT IT HARD)...lol.... but my dr. was saying that right now, if I take all my pred in the am, which I do.. by the end of the day, I get this downtime and feel pretty much no effects of it. If I break the dose up to 30mg. am and 30mg. pm then I will be on a more stable constant dose and it might even be easier for my body to handle the effects that way. Heck.. I'm so confused now that I don't know WHAT to do at this point.... I'm just trying to listen to everything and figure out what sounds the best for me... Any oher suggestions if I should take it all at once... I know it's hard for me to handle it at 40... another 20 might push me over the tolerance edge.... I was thinking that 30mg am and 30mg pm would be nice for me.... Now I'm starting to feel scared again.... GEEZZZZZZZZ.......
Posted 7/15/2009 7:28 AM (GMT 0)
When I was on prednisone I was told it might be better to take it all at once and early in the morning to help from keeping me up all night. That was always the worst for me when I was on it, sure messed up my sleep. Good luck Susiebuddy, hope the Apriso works!

Universal Colitis since 2003
Asacol 12 6 tablets per day
Mercaptopurine 1 1/2 1/2 tablets per day
hydrocortisone enema as needed (try not to use unless really, really needed)
Probiotic (lots!)
Fish Oil
Folic Acid (a must on 6-mp)
Iron (Solgar gentle iron - gentle on your tummy)
Multi Vitamin
Biotin
Lots of toasted french bread (especially when its actin up!)
Quiet time everyday to d-stress
Posted 7/15/2009 8:19 AM (GMT 0)
Hey-ya,

I suggest going to the ostomy fourm. I had surgery in May but only have the bag until August and I already feel so much better. Again, I only have it for a short time; there are a lot of people on the forum who are lifers and they seem pretty happy with their decision. There are a lot of UC people too. I thought most UC people didn't get the surgery.

Also, I did short trials of Remicaid and Humira and I would rather Remicaid. Check out all the info and this is only based on the pain factor. I have a high threshold for pain but the first 4 shots of Humira just about passed any pain I have ever felt.

Good luck with your meds. Prednisone is no fun; especially at 60 mg a day.
Posted 7/15/2009 1:55 PM (GMT 0)
are you sure the doctor didn't say permanent ileostomy??? I've never heard of a colostomy for UC either- I'd double check! Hopefully the pred will kick in & get things under control prior to that. Good luck! I wouldn't put too much stock in surgery talk just yet, before trying the biologics. But, if you're not %100 averse to surgery, I'd schedule a consult with a colorectal surgeon now! Just to give you an idea of what could be in store.
Posted 7/15/2009 2:14 PM (GMT 0)
Ya.... thanks for the input everyone.. I'm going to call today and schedule a consult with a surgeon just so if I EVER have to go that route, I'll already know what will happen and it might make a decision with medical therapies down the road a bit easier.... Plus then I can find out about the "permanent bag" thing.... I'm sure that's what my GI said.. I remember feeling a bit shocked when I asked him "would it be permanent?" And he said " well... unfortunately yes".... But then he's not a surgeon.

I do have to give him credit though, even though he might be wrong about the surgery part, he's been the most awesome doctor... very patient and understanding, willing to work with me on things and incredibly kind... Hard to find these days... When I leave messages for him at his ofice, which isn't too often.. he usually callls me back within a couple of hours everytime... I feel fortunate to have him as a doctor... we'll just get this surgery stuff straightned out and hopefully I won't ever need to go down that road.

I took my Apriso this am.. all at once, the insert reccommends it being taken once a day... WOO HOO.... I like that! I hate being a slave to pills!!!!!
Posted 7/15/2009 2:25 PM (GMT 0)
Just so you know, my GI tried to tell me that a permanent ileo would be my best surgical choice. He was wrong; the jpouch has been fine. It's not the GIs scope of knowledge to determine the surgery choice; it's the patient's choice as well as the surgeon's. A permanent ileo may be what you choose, everyone has to make their own decision based on their lifestyle, but again, that would be your choice. I loved my GI too; he was great but his knowledge of UC surgery sorely lacked. And his opinion of the jpouch procedure was outdated and wrong. I make sure to remind him of this on an annual basis. Every anniversary of my jpouch surgery I send him a letter to let him know how healthy, happy, and active I am with my jpouch. My goal is that he never speaks poorly about this surgery choice to another patient.

A consult is a very good idea. Make sure you pick a surgeon with tons of experience. You can get recommendations in your state at www.j-pouch.org

Sue
Posted 7/15/2009 2:36 PM (GMT 0)

Suebear said...

And his opinion of the jpouch procedure was outdated and wrong. I make sure to remind him of this on an annual basis. Every anniversary of my jpouch surgery I send him a letter to let him know how healthy, happy, and active I am with my jpouch. My goal is that he never speaks poorly about this surgery choice to another patient.

That's awesome.

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