In a world of hurt

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 5/26/2009 2:22 PM (GMT -6)   
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

quincy
Elite Member


Date Joined May 2003
Total Posts : 30601
   Posted 5/26/2009 2:49 PM (GMT -6)   
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
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 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....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ 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 !!!
 


samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 5/26/2009 3:21 PM (GMT -6)   

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


shakes3
Regular Member


Date Joined Mar 2009
Total Posts : 21
   Posted 5/26/2009 3:42 PM (GMT -6)   
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.
Diagnosed with moderate UC left side 2005
Salofalk 3pills x 3 times daily - No effect
2006 moderate to severe UC
Prednisone 25mg daily cycled down 5mg per week
Asacol 3pills x 2 times daily
Remission achieved
2009 severe pancolitis
60mg prednisone cycled down 5mg per week
Remicade
2grams fish oil, multivitamin
Currently at 10mg prednisone, starting to flareup again.


samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 5/26/2009 3:45 PM (GMT -6)   

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.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30601
   Posted 5/27/2009 2:08 AM (GMT -6)   
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


*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 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....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ 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 !!!
 

Post Edited (quincy) : 5/27/2009 2:14:36 AM (GMT-6)


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 5/27/2009 3:53 AM (GMT -6)   
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?
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:20mg pred (as of 4/27/09), 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections weekly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 5/27/2009 5:04 AM (GMT -6)   
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.
Diagnosed with UC in 1990.

Current Meds: Sulfasalizine (2 g), Rowasa (now and then), Folic Acid (1 mg)

Supplements: fish oil, flax oil, glucosamine, CoQ10, fiber, aloe vera juice, probiotics.

Other: Raw Milk for breakfast. Currently exploring a raw milk fast one day/week.


samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 5/27/2009 7:34 AM (GMT -6)   
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.

Sweetie31105
Veteran Member


Date Joined Aug 2008
Total Posts : 903
   Posted 5/27/2009 7:43 AM (GMT -6)   
Do you think you can be lactose intolerant? Maybe you should try breaking away from dairy. That may help.
27 year old, Married, Female.
Diagnosed with UC since March 2007

Taking Humira and Imuran since May 2007 (Currently in remission since May 2007)
Taken off Imuran 1/15/09
Only taking Humira.

Can't take Asacol, Allergic to Remicade


samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 5/27/2009 8:06 AM (GMT -6)   
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. 

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/27/2009 9:16 AM (GMT -6)   
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!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


quincy
Elite Member


Date Joined May 2003
Total Posts : 30601
   Posted 5/27/2009 1:56 PM (GMT -6)   
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
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 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....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ 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 !!!
 


samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 5/27/2009 3:15 PM (GMT -6)   

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


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/27/2009 3:25 PM (GMT -6)   
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.
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).
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 5/27/2009 3:52 PM (GMT -6)   
Can someone tell me more about Remicade?  Costs, how it is administered, etc.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/27/2009 3:55 PM (GMT -6)   
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.
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, Culturelle probiotic, and Zoloft (25 mg).


samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 5/28/2009 3:00 PM (GMT -6)   
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.

Hellokitty
Veteran Member


Date Joined Mar 2009
Total Posts : 765
   Posted 5/28/2009 3:45 PM (GMT -6)   
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.
Female 32 years old
 
Diganosed ulcerative colitis November 2007
Present medication- 1/2 X 500mg pentasa in the morrning= 250g pentasa (I reduced this to see how my diet will effect me) and 1 X250g Asacol every other evening
Diet- Tried raw food diet with 80% raw foods, found some pro's and cons. Started to add more products to keep up weight as mine did not balance. Still eating raw spinage and still am combination eating. No dairy No gluten.  
 
Other medical problems- Born with asthma- no medication taken for this.


samlc25
Regular Member


Date Joined May 2009
Total Posts : 92
   Posted 5/28/2009 3:51 PM (GMT -6)   
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.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30601
   Posted 5/28/2009 3:53 PM (GMT -6)   
it's not the food......

Seems you're improving.

q
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 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....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ 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 !!!
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, June 22, 2018 5:06 PM (GMT -6)
There are a total of 2,974,378 posts in 326,171 threads.
View Active Threads


Who's Online
This forum has 161254 registered members. Please welcome our newest member, Bozorama.
292 Guest(s), 9 Registered Member(s) are currently online.  Details
tarawa, Gunner823, summer16, ArtAngel, Girlie, Pratoman, NiceCupOfTea, G-Ju, lapilot