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Ulcerative Colitis
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Posted 1/19/2011 1:14 AM (GMT 0)
Hi all,

I've been lurking around here for quite a while, haven't really felt the need to post 'til now. I got UC 3/10, was diagnosed early 6/10. I just had an appt with my doc this morning, and he's bringing up the surgery option, going so far as I have a consult next week with a surgeon to talk about things in case it heads that way.

As far as meds, I've been on pred alone (worked about the first 3 days). Then I was on azathioprine & re-up on pred which didn't do a thing. Now I'm on Humira and low-dose pred, which did something for about a day before returning to business as usual. I've been on 4 Lialda the whole time as well. Today the doc decided to do 'one last salvo' to see if he can do something - back up on pred, back on azathioprine, humira once a week. In the mean-time since I was diagnosed I've altered my diet (though admittedly not full-tilt), started taking probiotics, and tried a bunch of things (metamucil, etc) I've seen on here and read in other research. Nothing seems to even touch it to get me over that first hump and into remission.

So I guess I'm wondering what else is there before I'm esstentially forced to take the big leap? My doc seems knowledgeable and like he actually cares, I can tell he's getting upset that things have been so ineffective, so I trust that he's trying everything he knows and I think he knows his stuff. He's saying that it's just too aggressive.

Whadaya all think? This place is full of people with way more experience than me, and I'm betting I'm not alone in this scenario. Thanks!
Posted 1/19/2011 1:24 AM (GMT 0)
Hi, and I'm glad you joined us after lurking! lol - so, welcome to the conversation.

Where is your UC, limited or throughout?

And - you know what I'm going to ask - have you tried any rectal meds? I didn't see them in your post..... did the Lialda help at all? If so, I'd try Rowasa....or even the steroid enemas (though, if the pred isn't doing anything for you, the steroid enema might not, either.)

And you haven't tried Remicade...? Otherwise you've done quite a sampling of the standard meds!

It's not a bad idea to talk to a surgeon anyway - those conversations are optimal if not held at a time of emergency..... and I'm glad you have a GI you like and who cares!
Posted 1/19/2011 1:26 AM (GMT 0)
have you tried any of the rectal enemas? I currently use Rowasa. I currently take Remicade, 6MP, Colazal and the Rowasa enemas every other night. What mg of Prednisone where you on?
Posted 1/19/2011 1:34 AM (GMT 0)
My UC is throughout.

The enemas are probably the only things I haven't tried, though the thought has crossed my mind more and more lately. The only thing that has stopped me from asking is the fact that the Lialda has basically seemed like a waste the entire time, though I understand having it "directly" applied would be more beneficial. I asked today actually about Remicade (we talked about it before but I decided to try Humira) and he said that if it were Chrohn's it would be a possibility but he hasn't seen any difference with UC switching between the 2. He also said if I had started with Remicade we could have tried Humira, but he doesn't like going the other way.
Posted 1/19/2011 1:35 AM (GMT 0)
I'm also curious if you've tried remicade.

Rectal meds never helped me, but they have helped enough people here on this forum that I would recommend giving them a shot before surgery.

In the mean time I would recommend that you start looking for a surgeon that you feel comfortable with in the event you do need the surgery.
Posted 1/19/2011 2:06 AM (GMT 0)
I would try the rectal meds. Lialda made me worse, but rectal meds have put me into remission before. There is a difference between taking the med orally and applying it straight to the source.
Posted 1/19/2011 12:21 PM (GMT 0)
What kind of symptoms are you having? Is it still a full blown flare? or just mild symptoms that seem to be hanging on?
Posted 1/19/2011 8:55 PM (GMT 0)
Honestly, I haven't had it long enough to really know if it's a full flare for me or not (hence why it seems a little soon for surgery). Currently I'm at 10+ BM on a work day and 5-7 on a non-work day, no-form stools, and occasional blood (usually when stress goes up, though more lately) and urgency. I'm still feeling out yes/no foods so obviously things get worse when I screw up.
Posted 1/19/2011 9:11 PM (GMT 0)
I don't understand why the rush for surgery if you've had it for such a short time?

Don't let the doctors tell you when to have surgery unless you are absolutely desperate - it's your body and your choice. Personally, I'd try every avenue before agreeing to surgery and let thespecialist know that's how you feel.

How about getting a 2nd opinion?

Learn as much about UC/meds/diets as you can so you can argue your corner.
Posted 1/19/2011 10:33 PM (GMT 0)
My GI says she notices Remicade works better on UC than Humira, and that her colleague at Mayo agreed.

How do you feel? I know your bm schedule is not "normal" but is it a big problem? I hope you are getting useful advice on here about how to handle a UC gut, it's a big adjustment but there is lots you can do to help minimize problems.
Posted 1/19/2011 11:19 PM (GMT 0)
Some unconventional treatments that have worked for others and may or may not work for you:

Fecal transplantation -- I never tried it but some here swear by it. You will find many threads on this forum discussing it.

Nicotine lozenges -- Politically incorrect and doctors will not mention them but some say they work. If you have never been a smoker then start out with a low dosage and gradually build up.

Diet and Supplements -- This is my mainstay. Check out the SCD diet and/or keep a food diary. Many threads devoted to it.

Antibiotics -- I know it sounds ridiculous but they worked for me and I am not the only one. Here are two threads with examples. Just remember to take them with probiotics.
www.healingwell.com/community/default.aspx?m=1689855&f=38&p=1
www.healingwell.com/community/default.aspx?f=17&m=2004319
Posted 1/19/2011 11:38 PM (GMT 0)
I know that some people respond really well with Remicade than with Humira and vice versa. I'm one who had a horrible reaction to Remicade, but if you aren't responding to Humira, why don't u try Remicade? It wouldn't hurt anything. Also, if the prednisone isn't working for you why don't you stop taking those and take some steroid enemas. Maybe you could talk to your doctor about those ideas, hopefully he'd be willing to try that.
Posted 1/20/2011 12:51 AM (GMT 0)

lamb_cd said...
Honestly, I haven't had it long enough to really know if it's a full flare for me or not (hence why it seems a little soon for surgery). Currently I'm at 10+ BM on a work day and 5-7 on a non-work day, no-form stools, and occasional blood (usually when stress goes up, though more lately) and urgency. I'm still feeling out yes/no foods so obviously things get worse when I screw up.

One thing I know is you have to eat. Sometimes it seems easier not to eat but that's not the answer. One more thing I know, in my case, it didn't matter what I ate when I was in a bad flare. It all treated me like it was toxic. And one more thing I know,(I don't know much) I would be trying a lot of meds before they cut me open. I hope you find something that gives you some relief and starts your remission.
Chris
Posted 1/20/2011 1:10 AM (GMT 0)
there is no harm in getting information about the surgery, and from what I understand for some people it is a very necessary choice in order to have any kind of life back, but it does seem early in the process of the figuring out this disease and sounds like there are still lots of options to look into before the finale decision. I'm big on listen to your gut (no pun intended) feeling and if you feel it is too early to consider surgery then insist on other options first.
Posted 1/20/2011 1:14 AM (GMT 0)
I am newer to this than you but I'll share my opinion. Don't rush into surgery. Doctors by nature want to be able to "do" something. You'll know for yourself when the time is right for surgery, if ever. It will be that point when you just can't take it anymore with the colon, so you're more than happy to get rid of it. People who get surgery tend to be happy with their surgery, because in their mind they had a reached a point where they knew there was no other option. The symptoms were too severe, or there was a high cancer risk, or an emergency had arisen.

Autoimmune conditions are unpredictable. As long as you still have the colon, there is a chance it will go into remission, either through some treatment you find or by its own accord.
Posted 1/20/2011 1:43 AM (GMT 0)
Excellent advice above...definitely talk with the surgeon and have information in your head about it but it is such a trial and error thing. What works for one may not for another but you want to try everything and know you did your best to try to get a remission going.

Hopefully something is still out there that will help you out. You will know just like DavisD stated when the time is right for you for surgery.

Hubby finally reached that point last June and had surgery in Dec. Wasn't able to get the j-pouch and ended up with a permanent ileostomy which we knew was a potential possibility. This end result wasn't a tragedy in his/my life because he is finally out of pain, recovering very well and we are both anxiously looking forward to getting back doing things we enjoy and can now do them without all the distractions and discomfort he had for so long that interfered with his and my quality of life.

Best of luck to you!
Posted 1/21/2011 5:31 AM (GMT 0)
Thanks everybody! for your input. It sounds like my initial gut feeling was right, now is too early to be heading down that path. There are still some things to try out there, I just need to be assertive that I want to try *everything* before I throw in the towel, even though he may not completely agree. Surgery's a little too permanent to not do so...
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