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Posted 5/26/2009 8:22 PM (GMT 0)
Hey Guys,

New member here.  I was diagnosed with UC November 2002 and I have been living with this beast ever since.  I came out of a year long remission a little over a year ago and I have tried every drug possible to get back in remission.

I participated in a study through my doctor involving Humira starting last September but was released from the study in February and listed as a non-responder.  I was the only patient that this drug did not work for in the study.

Since being released from the study, my doctor has prescribed just about everything to try and get me back healthy again.  Right now I am on Prednisone 40mg, Colazal 9pills/day, Cipro, Imuran, Rowasa (nightly enema), and I just started taking Super Shield on my own (with dr's permission) about a week and a half ago.

Right now, I can't keep any foods down.  Some foods are better than others obviously.  I basically have to eat the most bland foods out there to keep me somewhat manageable.  For instance, I grilled a cheeseburger last night and left off lettuce, tomato, onions, etc and I've gone 6 times since. 

A typical day for me right now: Wake up a few times a night with painful gas, which may or may now contain traces of bowel.  I go to the bathroom as soon as I awake.  However, I usually only pass gas with small traces of bowel.  I usually go 3 times before I leave for work, then a couple at work, then 1 or 2 when I get home. 

I'm looking for any advice I can get from you guys.  Right now, I'm really trying to curve my diet but it's hard.  Anyways, any advice would be appreciated...

Thanks,

Sam

Posted 5/26/2009 8:49 PM (GMT 0)
Hi..welcome to the forum!

Sucks that the humira didn't have any effect on your UC.

Curious how you got into remission in the past? What meds have you used since 2002 not including this flare?

When did you start this regimen of meds?

I'm assuming you had stool samples etc done before the trial.

Why did the doc put you on Cipro...did he suspect an infection?

Regarding food....you're meaning that you're throwing up after you eat?

Have you had upper GI series done?

Lots of questions I know.....
quincy
Posted 5/26/2009 9:21 PM (GMT 0)

Thanks Quincy!

No real idea how I went into remission in the past.  I know it was the only time I have been in remission in my 6 1/2 years.  I also know I was only on Asacol and Imuran when it happened.  And I came out last Memorial Day after a weekend of eating fried seafood and ribs. :-)    Now, these foods are my enemies.

My current meds are all that I have taken through the years.

I started my current meds in February.

Yes, there were stool samples done before the trial.

The dr said Cipro may help with my infection.  I actually stopped taking Cipro after I started Super Shield a week and a half ago.  My dr said there was no need in taking both.

Sorry, not throwing up, bowel movements.

And no, no upper GI done.

quincy said...
Hi..welcome to the forum!

Sucks that the humira didn't have any effect on your UC.

Curious how you got into remission in the past? What meds have you used since 2002 not including this flare?

When did you start this regimen of meds?

I'm assuming you had stool samples etc done before the trial.

Why did the doc put you on Cipro...did he suspect an infection?

Regarding food....you're meaning that you're throwing up after you eat?

Have you had upper GI series done?

Lots of questions I know.....
quincy

Posted 5/26/2009 9:42 PM (GMT 0)
I noticed you said you grilled a cheeseburger. My suggestion would be to stay away from red meats as well as pork products. Tougher to digest. Try leaner meats like chicken and turkey(white meat). I've started eating a lot more fish since my UC came back. I get the marinated ones cause fish has that icky taste plain. Also I find the way you cook things can affect your UC. I try to stay away from frying and Bbq'n. Bbq'n isn't as bad just try not to char your meat and if you do pick off the black parts. Hope this helps.
Posted 5/26/2009 9:45 PM (GMT 0)

Yes, I knew what I was getting myself into here.  It was definitely my mistake.  It sucks to say but I would almost rather lose my colon than to stay away from red meat or pork.  I really do try as much as possible but I love steaks, burgers, etc.  I do eat those in moderation though.

It does help though, thanks..

shakes3 said...
I noticed you said you grilled a cheeseburger. My suggestion would be to stay away from red meats as well as pork products. Tougher to digest. Try leaner meats like chicken and turkey(white meat). I've started eating a lot more fish since my UC came back. I get the marinated ones cause fish has that icky taste plain. Also I find the way you cook things can affect your UC. I try to stay away from frying and Bbq'n. Bbq'n isn't as bad just try not to char your meat and if you do pick off the black parts. Hope this helps.

Posted 5/27/2009 8:08 AM (GMT 0)
Actually, food isn't going to cause you a flare, and eating foods that are high in protein and that take longer to digest isn't/shouldn't be a problem unless it's foods that are done in high fat/oils and charred on the bbq...etc.
One can have beef or pork with relatively no fat..

But, in saying that, eating smaller portions more often during the day, eat as well balanced as you can.

I don't believe in cutting out all carbs, sugars, etc, but one must use much common sense in eating. If I overdo, I will get discomfort....If I'm flaring at the time, my discomfort will be more and I may have more bms.

High fat foods, carbonated drinks and artificial sweeteners will more than likely give one more gas, cramping and looser stools.

You mentioned Cipro for your infection.....did you have one for sure through a stool sample test? or was it another infection in your body?

I've never heard of Super Shield...I see they're probiotics...lots of good stuff in there!


You could also consider to use fibre supplements to bulk up the stool a bit and maybe help with the probiotics....


I sure hope you're able to get this flare controlled.....

quincy

Posted 5/27/2009 9:53 AM (GMT 0)
Burgers and red meats make me hit the restroom multiple times as well during a flare.... I suggest a very bland white meat and fish diet for a while....yes, it sucks, but its a sacrifice for a better cause I suppose. You are on some big guns for meds right now....if you are having no luck with them have you talked to your GI about Remicade?
Posted 5/27/2009 11:04 AM (GMT 0)
I hadn't heard of supershield either and looked it up. I noticed it contains FOS, a prebiotic. My understanding is that FOS can cause meteorism (lots of gas) among other problems. Perhaps the supershield is contributing to your discomfort?

I'm not against probiotics - use them myself. In fact I think they have helped keep my UC under control. I am just not sure about prebiotics and have avoided probiotics that contain them.
Posted 5/27/2009 1:34 PM (GMT 0)
Lots of good information in here.  I really appreciate it.

Quincy, my doc just said maybe the Cipro would control the infection.  He had recently given me a sigmoidoscopy (sp.?) and that's why he prescribed that med.  It did not work though.

MBx5, I've heard of Remicade and was considering trying that med right before I went on the Humira study.  However, I was a non-responder in the Humira study and from I've read, these two drugs are very similar.  I'm afraid I would not respond to Remicade as well.

ickypoo, my gas was just as severe before Super Shield so there's no way to know if it's contributing right now or not.  My hope is that with time it will help me.

I am leaving for the Caribbean in 10 days for my 5 year anniversary with my wife.  A 6 hour plane ride > Caribbean food > potential disaster.  UC kinda makes making babies difficult sometimes.  I don't want to spend the entire trip on the toilet.

I've considered starting a liquid diet and possible give my colon a rest until the trip.  Anyone have any other ideas?

Here is the Super Shield website.  I am by no means promoting this as it obviously hasn't worked for me yet, but just for educational purposes.

http://www.bluerockholistics.com/product/pro-ss.asp

Posted 5/27/2009 1:43 PM (GMT 0)
Do you think you can be lactose intolerant? Maybe you should try breaking away from dairy. That may help.
Posted 5/27/2009 2:06 PM (GMT 0)

Sweetie31105 said...
Do you think you can be lactose intolerant? Maybe you should try breaking away from dairy. That may help.

Sweetie, I don't think there's a doubt about it..............yes, I am.  Any meal including cream of any kind shoots right through me. 
Posted 5/27/2009 3:16 PM (GMT 0)
I don't think that just because Humira didn't work that Remicade won't. I don't know of anyone on here who use Humira first then switched to Remicade, but I know of a few people that didn't respond to Remicade, were able to get approved for Humira, and it worked for them. Hope you find relief soon!
Posted 5/27/2009 7:56 PM (GMT 0)

samlc25 said...
 

Quincy, my doc just said maybe the Cipro would control the infection.  He had recently given me a sigmoidoscopy (sp.?) and that's why he prescribed that med.  It did not work though.

I'm missing the point....what infection do you have?  UC isn't an infection unless you have one separately.  Did the doc check that with a stool/swab?

q

Posted 5/27/2009 9:15 PM (GMT 0)

I guess I don't know and maybe I am misrepresenting the story.  My dr. gave me the Cipro to help with the UC since nothing was really working for me.  He said Cipro, or an antibiotic, sometimes helps UC patients.  Maybe the infection part was in my head.

quincy said...

samlc25 said...
 

Quincy, my doc just said maybe the Cipro would control the infection.  He had recently given me a sigmoidoscopy (sp.?) and that's why he prescribed that med.  It did not work though.

I'm missing the point....what infection do you have?  UC isn't an infection unless you have one separately.  Did the doc check that with a stool/swab?

q

Posted 5/27/2009 9:25 PM (GMT 0)

samlc25 said...
Lots of good information in here.  I really appreciate it.

Quincy, my doc just said maybe the Cipro would control the infection.  He had recently given me a sigmoidoscopy (sp.?) and that's why he prescribed that med.  It did not work though.

MBx5, I've heard of Remicade and was considering trying that med right before I went on the Humira study.  However, I was a non-responder in the Humira study and from I've read, these two drugs are very similar.  I'm afraid I would not respond to Remicade as well.

ickypoo, my gas was just as severe before Super Shield so there's no way to know if it's contributing right now or not.  My hope is that with time it will help me.

I am leaving for the Caribbean in 10 days for my 5 year anniversary with my wife.  A 6 hour plane ride > Caribbean food > potential disaster.  UC kinda makes making babies difficult sometimes.  I don't want to spend the entire trip on the toilet.

I've considered starting a liquid diet and possible give my colon a rest until the trip.  Anyone have any other ideas?

Here is the Super Shield website.  I am by no means promoting this as it obviously hasn't worked for me yet, but just for educational purposes.

http://www.bluerockholistics.com/product/pro-ss.asp

My doc says her observation is that Remicade works better than Humira, and her colleague at Mayo thought so too. So that tells me there must be some difference.

(I went for Humira first because of the convenience).

Posted 5/27/2009 9:52 PM (GMT 0)
Can someone tell me more about Remicade?  Costs, how it is administered, etc.
Posted 5/27/2009 9:55 PM (GMT 0)
Your cost depends on your insurance coverage. Cost also varies widely depending on where you have the infusion...some people have it at an infusion center, others at a hospital, etc. It's administered through an IV.
Posted 5/28/2009 9:00 PM (GMT 0)
OK, I have had a pretty good improvement over the past few days.  The improvement actually started when I started taking 2 pills a day of Super Shield instead of one.  I started this on Tuesday night, the 26th, and have gone only once each of the past two days.

Hopefully, this is not a fluke.

Posted 5/28/2009 9:45 PM (GMT 0)
There is only one thing I can suggest, which is what you already heard. Im staying away from meats, (except fish). Dairy gluten and I am also combination eating. At the moment it is the only thing that is keeping the pain away. If I was not doing this I don’t think I would be working. I find this disease depressing, I also find that no one around me really understands it. They see me healthy today but don’t realize that down the line I may not be able to work. Scary.
Posted 5/28/2009 9:51 PM (GMT 0)
This improvement is after a dinner of Chickfila (one friend chicken sandwich and an 8 piece nuggets) two nights ago, and two hot dogs last night.  The whole time I am eating I am thinking how screwed I am.  Then, nothing....  Maybe my colon is in shock but I feel nothing.  To top it off, the only time I went yesterday was solid as a cucumber with no blood.
Posted 5/28/2009 9:53 PM (GMT 0)
it's not the food......

Seems you're improving.

q
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