HealingWell
Search Close Search
☰

Bad response to Apriso. Other options or surgery?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/19/2012 4:15 AM (GMT 0)
My gastro put me on asipro 4 in the am and rowasa ememas and I'm having alot more bowel movements, diahrrea, is this normal? It's been about a week now.

Post Edited By Moderator (Judy2) : 8/20/2012 6:49:18 AM (GMT-6)

Posted 8/19/2012 8:13 AM (GMT 0)
Were you on any meds before the apriso and Rowasa?

What were your symptoms before what you're on now?

q
Posted 8/20/2012 5:22 AM (GMT 0)
Heather, I've had uc for over 20 years. I've. Been on asacol, lialda, colozal, rowasa enemas, you name it, always making my symptoms worse. about a month ago I was hospitalized for having at least 20 bloody stools day n night, dehydration, uti, and low potassium, and losing 20 pounds in two months, this was the absolute sickest and worse flare EVER!!was put on 60 mgs of pred and asacol six a day while in the hospital, saw the gastro and he put me on the asacoland enemas. Went about two weeks ago for my colonoscopy, show universal uc and moderate inner hemmroids. Gastro put me on apriso and said continue enemas. I've been in this flare for over four months. Had an accident in my pants taking my son school shopping yesterday and ar church tonight. I wear depends and the stool is so wateryit goes right through. Can't even make it to the toliet at home. Told my gastro I wanted iliostomy and he said no, I wouldn't like it and it wouldn't be reversible. Help Quincy, I need advice, at my wits end! Thank you!
Posted 8/20/2012 12:48 PM (GMT 0)
It sounds to me as if your UC isn't responding much to the 5-ASA's and also your body doesn't tolerate them well. I got much worse on mesalamine but am able to tolerate Colazal. Some of us can't tolerate any 5-ASA's. Have you been tried on alternate drugs, such as Azathioprine or 6-MP?

Another option would be some of the dietary interventions. These were never helpful to me, but have been to others. Also, some benefit from various non-pharmaceutical remedies.

Finally, if you're in the US, it isn't up to your gastro whether you should have surgery or not. That would be your decision, since it's your body. And you don't have to have a permanent ileostomy, you could probably have a j-pouch, which creates a pouch from your ileum to replace your rectum. It isn't exactly like "normal" elimination, but it's from the same place and done in the same way as you were born.

I'm giving your post a heading so you will hopefully get more responses. Good luck.
Posted 8/20/2012 1:11 PM (GMT 0)
I had a bad reaction to Apriso as well. I'd try imuran before you even consider surgery. I've had no side effects and imuran gave me my life back.
best of luck to you.
Posted 8/20/2012 1:21 PM (GMT 0)
Oh, I had UC that bad too. I remember those awful days. What about Remicade? Have you talked with your GI about that drug?

Sue
Posted 8/20/2012 3:25 PM (GMT 0)
I'm calling my gastro today for an appntmnt and I'm going to tell him I want to try other meds until we find one that works. I'm going to mention trying immuran or remicade. Thank you for all your advice, I was seriously considering surgery, but your right, I need to explore the meds before making such a rash decision. God bless you all
Posted 8/20/2012 3:44 PM (GMT 0)
Imuran definitely worth a try!
Posted 8/20/2012 4:02 PM (GMT 0)
I can't believe your gastro would say that about surgery. Has he had it done? He sounds clueless to me or perhaps, he wants to keep you on as a patient. If he has never had UC he has no idea how poor your quality of life can become. I went through the exact same medicines as you but also tried Remicade - which worked for about a year - and Humira - which did nothing for me. After five years of UC, I opted for the j-pouch surgery so I don't have a bag. You might research it. Obviously, I'd rather have a healthy colon but if I had known then, what I know now, I would have had it done the day I was diagnosed if I could have. I take no medicines and I have no urgency.
Posted 8/20/2012 6:56 PM (GMT 0)
I second giving Imuran a try. It has worked for me when nothing else did.

How long have you been with this GI?  I would strongly suggest that you get a second opinion or change doctors.  With the symptoms you are experiencing your GI should be doing everything is his/her power to get your quality of life back.  My old GI let me suffer and lead me to believe that I simply had to just deal with the symptoms.  He did not think outside the box and did not educate me well on medications or options.  I changed GI's after 4 years and the GI I have now is excellent.  He is not satisfied with semi-controlled symptoms.  It really changed my life when I changed GI's.

Posted 8/20/2012 6:59 PM (GMT 0)
Hi..yes...it sounds as though 5ASA meds don't agree with you at all.

You should discuss other med options with your GI or have the surgery. I would probably ask for a second opinion.

Only you can determine the quality of life you want...but if you've only been on the 5ASA meds..that alone can be in part what's happening with some of your symptoms.

Ask for the steroid enemas while you're on the pred.


Have you been checked for c.diff?

q

Posted 8/20/2012 7:06 PM (GMT 0)
I'm appalled your GI hasn't mentioned Imuran/6MP or Remicade. That's really, really bad. Depending on how your upcoming appointment goes, you may need to find a new doc.

If I were you, I'd do some reading about the other meds commonly used to treat UC. The CCFA has a pretty good overview. You can also read about the plethora of less-mainstream ways to treat UC (LDN, diet modification, fecal transplant, whipworms, etc) on this site. I'd do this BEFORE your appointment so you can go in armed with good knowledge.
Posted 8/25/2012 8:03 AM (GMT 0)
Ok, tomorrow I go see my gastro, thank you for all the info, wrote it all down. Waiting for ins to approve referral for a second opinion too!
✚ New Topic ✚ Reply