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Ashley O
Regular Member


Date Joined Jun 2008
Total Posts : 72
   Posted 6/15/2009 10:50 PM (GMT -6)   
Hey everyone. So it's been FOREVER since I last posted but I read the posts daily. After being on Remicade for nearly 3 years now my doc thinks it's no longer effective. I've sent in bloodwork to check for antibodies and had my 4th colonoscopy to date this morning. Well, my colonosocopy was not pretty. I'm definitely flaring and after only 3 weeks from getting my remicade in my 8 week cycle. The culprit behind this mega flare, which sent me to the hospital with dehydration and malnourishment last week, was most likely my 7 day Macrobid antibiotic for a bladder infection. Nice-right? Another wonderful thing to add is that my disease has progressed from being mostly confined to my rectum and lower left side, all the way through my transverse colon to my right side. GREAT. So biopsies and bloodwork are out for analysis and I have an appointment for discussion with my GI next week. We will discuss possibly needing to stop Remicade and start something else. I'm so frustrated, upset, and scared. I've been battling this disease for 4 years and it took a year to get my disease somewhat under control when I finally found Remicade. I was on Prednisone for a year and that sucked. Now I might have to go back. I don't want to be that sick girl again who can't leave the house. I hope there is another drug out there for me. This disease makes me so angry sometimes. Anyway, I thought I would give you all an update on myself, rant a little, and ask for any words of encouragement, advice, etc. Thanks so much and hope everyone else feels better than I do!
Female, Age 20, DX w/Left sided UC October 2005
Currently in Semi-Remission with mild symptoms

Present Meds: Remicade Infusion every 8 weeks since August 2006
Clonazepam 1 mg as needed for anxiety (for rare long trips in the car or traveling)

Past Meds: Canasa Sups, 40 mg Prednisone Daily for 1 year, Miralax Daily, Ginger Supplements


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 6/16/2009 12:32 AM (GMT -6)   
Ask your physician why this flare was started by an antibiotic regimen. I have a pretty good reason why. Sound like a bacterial imbalance instigated this flare.  See what the doctor says.  I hope you feel better soon! We'll pray for your remission!


Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.


kate22
Regular Member


Date Joined May 2009
Total Posts : 227
   Posted 6/16/2009 12:40 AM (GMT -6)   
Have you tried asacol, or other mesalamine type drugs?  maybe you could take those instead of the "dreaded pred" and they could get you over the hump.  I can totally sympathize with you and know what you are going through.  I was diagnosed w/UC in my 20's.  Being sick and on pred makes you feel like you're waiting to get well and live again; everything is on hold.  Right now I am on pred and "waiting" too.  I won't leave the house either.  I am so sorry you are having difficulty...try to hang in there.  At least your UC is confined to the left side...have you tried Rowasa enemas?  At one time, I was having a flare and afraid I might have to go on pred, and my dr. prescribed Rowasa enemas once per night, and it got me out of my flare.  Ask your dr. about some of these other less toxic meds...you might have other options!  I hope you are better soon!!!

blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 6/16/2009 12:53 AM (GMT -6)   
She was taking Prednisone 40 mg every day for a year. Although it's not a high dose, it's more than 5 times the physiological level that the adrenal glands produce. That's god-awful, not to mention destructive physiologically. I'm glad you found Remicade.
Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.


edfish
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/16/2009 4:00 AM (GMT -6)   

Hey everyone. I feel for you all suffering from the colitis. I was diagnosed in 2000 in the month of September and I'm guessing that August/ September are the months that the condition reall kicks in for you guys too. My Doctor could not tell me why that was (what can doctors tell you about colitis except of course "take more pred steroids") They really know nothing and won't even consider diet as a factor!

Now, there are things that you can do to help. The best thing you can do is probably not very practical for most of you and that is: move to Asia. I know how that sounds but this is what I did and have never had a bad year (no symptoms what so ever) in the 5 years ive been here. Everytime I go back to England bang there it is 4 months on the toilet up to 30 times a day with only a few seconds warning! Now let me tell you that my colitis was SEVERE in every sense. One of the worst cases my specialist has ever seen. When i was diagnosed my red cell blood count had fallen to 5.3 (should be 14) my blood irritation level was 145 (should be 0-10) I am six foot three and my weight was 57 kilos! so you can imagine waht i looked like. The doctor wanted to remove the whole bowel but didnt because he didint think i would survive the surgery  in that condition. So i recovered the normal way: 12 preds a day and 6 asacol for many months and I had the moon face and the thinning of the thighs and other pred side effects. That was 2000. When i recovered i went travelling around the world in 2001(mostly Asia) and did not get sick at all indeed it was as if I had never been sick at all. When i went home 2002 the colitis was waiting for me and i was taken back to hospital and met a new doctor. He told me the only food i could intake was boiled vegetables, fish, boiled potatoes, rice, chicken not even fruit! Here's what I did: I checked my self out of hospital in a wheel chair(with about 5 or 6 doctors and nurses trying talk me out of it all the way) I went home and booked the first flight to thailand. As you can imagine the flight was rough. As soon as we took off i went to the toilet and just sat there for hours making sure that when i needed to rush i wouldnt mess myself in the line for the toilet.

So i arrived in bangkok and started to relax. I even had a beer and a curry!!!!! That was it after four days I was cured i threw the preds in the bin and got a job as an English teacher and never ever thought about colitis again until i went back to england in 2006 for a family funeral where yet again i got sick in August. I left for Thailand and China yet again living as a teacher and am still here with zero effects!!!

Nobody understands colitis but i will tell you my thoughts. Certain things bring it on like fermented foods, stress, possibly leaf molds in the air in the autumn, alchohol etc but the root cause is in the mind. Any negative thoughts (for me the feeling of life passing me by and the feeling of working just to stay afloat) cause colitis in the predisposed. Once i was away from those feelings and happy and fulfilled the symptoms just vanish.

My advice is if you cant obviously move to Asia is to holiday there at the most sensitive time of year, switch to a rice based diet (this works) and try meditation and relaxation  techniques to improve your mental landscape. Most illness manifests from the mind.

I hope you all feel better. Miracle cures can happen as for me colitis is just a distant memory.

 

 


storysinger81
Regular Member


Date Joined Jun 2009
Total Posts : 82
   Posted 6/16/2009 5:28 AM (GMT -6)   

Hi edfish,

I'm glad moving to Asia worked for you, but I got diagnosed here!!!  Granted Thailand is quite different than South Korea in climate and culture, but depending on where you are in China, it might not be so different.

Certainly the stress is less for me here than they were in the U.S. and as I contemplate returning, I'm already concerned I won't have the time I need to take care of myself.  However, I don't think it's just the rice and less stress that can "cure" you.

Just wanted to offer another perspective...


~Diana
 
28 year old American in South Korea.
Diagnosed with Mild UC May 2009.
Currently on Asacol 2 pills/3 times a day and nightly suppositories of the same.
Stage One:  Food Journalling and Research about UC
Preparing to begin Vegan Healing Diet


edfish
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/16/2009 5:52 AM (GMT -6)   
it's more than rice and less stress. It's an improved mental outlook (fullfillment, inspiration broader horizons) that brought the "miracle cure." Being as the mind is obviously linked to the body any mental unhappiness can be physically manifested. I say it again, I went from the brink of major surgery to happy and healthy without medication in the space of a few days just by being mentally and emotionally inspired.

edfish
New Member


Date Joined Jun 2009
Total Posts : 3
   Posted 6/16/2009 5:57 AM (GMT -6)   
Also I hear nalcrom can be a good preventative medicine as it reduces the histamines and antigens the body produces. I have not tried it personally but it may be worth asking about.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/16/2009 9:48 AM (GMT -6)   
Ashley, you can ask your doctor about Humira. It's another biologic that people with UC can try after Remicade fails, or if they are allergic to Remicade. It's not yet approved for UC, but since it seems that Remicade is failing, your insurance might cover it. Or, have you thought about loading up on some probiotics as it seems this flare was antibiotic-induced? Maybe if you can restore your good gut bacteria you'll be ok.

edfish, moving to Asia would very likely make my colitis worse. Family is very important to me, and it would stress me beyond belief that I would rarely see them. Also, I can't imagine living in a country where I can't speak the language and I'd probably not like the huge difference in food, either. So, it's not a cure for everyone...it helped you, but it certainly won't help everyone.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


AmyWaffle
Regular Member


Date Joined Jun 2009
Total Posts : 173
   Posted 6/16/2009 12:22 PM (GMT -6)   
Ashley--I agree that there are lots of other drugs besides remicade for you to try. Have you been on mesalamines or immunosuppressants? It seems strange to me that your GI went straight to remicade (a big gun). It is common to develop antibodies to it so is typically not the first thing they try. I know how you feel about the prednisone, but if that's what you need to get better, then do it! Your body needs to heal up. I feel for you and let us know how you are doing! And don't move to asia and stop taking all your meds. That seems like a very bad idea.
UC since 1996 (age 20)
Mommy of 2 sweet little girls.
My life is one big flare.


Ashley O
Regular Member


Date Joined Jun 2008
Total Posts : 72
   Posted 6/16/2009 4:42 PM (GMT -6)   
Hey guys. Thanks for the input. I was on Canasa suppositories and Prednisone for a year with no relief for a year. My doc then went straight to Remicade and it's worked for me up until now. I think my doc is going to suggest mesalamines or Humira next. We'll see.

I like the idea of taking probiotics and will give that a try as well. Asia would definitely not work for me.

Thanks for all the advice and support. I'm keeping my fingers and toes crossed for next week.
Female, Age 20, DX w/Left sided UC October 2005
Currently in Semi-Remission with mild symptoms

Present Meds: Remicade Infusion every 8 weeks since August 2006
Clonazepam 1 mg as needed for anxiety (for rare long trips in the car or traveling)

Past Meds: Canasa Sups, 40 mg Prednisone Daily for 1 year, Miralax Daily, Ginger Supplements


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 6/17/2009 1:54 PM (GMT -6)   
     Asia wouldn't work for me either.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.

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