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Posted 9/26/2008 4:53 PM (GMT 0)

Hello everyone,

 

I was diagnosed about 8 years ago with UC unfortunately. I'm currently going through a flare up at moment like so many other people on here. I joined this site to learn from others and share my

Experiences as well. Well to begin with this disease sucks! Even though you have to be thankful because it could be worst. I haven't had a colonoscopy in 8 years I had a rough transition from college to work along with my insurance. I’m finally starting to get a handle on things though. Another reason I haven't had a colonoscopy is because I get very few flare ups. Even though thats still not a reason to get a check up, but when your not suffering you seem to forget about it.

 

 

The recent flare up happen about 2 months ago. My gastrologist apparently moved to Maine. So they assigned me a new doctor who wanted to run all these test that I couldn't afford at the moment due to my insurance. If you don't have insurance GET insurance people! This doctor was trying to tell me he thinks I have food poisoning after looking at my file, complete bs I know my body. So I found another doctor and he prescribed me a months worth of prednisone. All the other medications doctors have tried with me never works or at least I didn't really give it a chance. They all had "col" or "zol" in their name and their basically all the same medication. The prednisone worked, but I hate taking that stuff because I think of the long-term health risk it’s going to have on my body. Well I was fine back to eating normal and I decided to eat a large pizza, ice cream, and french fries yeah yeah I know. It was my cheat day and obviously I over did it and flare decided to awake again.

 

It’s very strange though because I went 2.5 years almost 3 years without a flare up. I'm not on any maintance drugs because I honestly just don't believe in them. I'm doing the nature route and taking 2000mg EPA and DHA of fish oil a day along with my acidophilus. Our stomachs have good bacteria that help us regulate our digestive tract. Studies show that people with our condition lack the healthy bacteria in our stomach, so that’s why I supplement it with acidophilus. The more information you know about the disease the better. I honestly think that’s what kept me free for so long. I started slacking on taking them everyday and bam I get sick. I could type more but I don't want to bore you guys and girls anymore. I'm taking other stuff now also but I'll explain it later.

 

 

Posted 9/26/2008 5:12 PM (GMT 0)
Hi welcome to the forum! It seems you have it all figured out....be well,

quincy
Posted 9/26/2008 5:23 PM (GMT 0)
I wish I had it all figured it out. Unfortunately I don't and if I did I would I sure it with EVERYONE who has the disease. I'm curious if anybody in here has tried the natural way with success. I just feel like doctors are always playing a guessing game with what medication they prescribe, because at the end of the day they go home healthy and we ALL remain sick.
Posted 9/26/2008 5:47 PM (GMT 0)
The problem with many doctors is that they prescribe pred first-line.

Too bad...but it's cheap and patients usually feel really good once initially on it. It's an easy way to treat...but not for any long-term effect.

Really, you should be on oral and rectal meds...5ASA if you can use them...lower dosages to start and increase if you need them.

Alternative supportive supplements can be used.....but remember that there is NO CURE. 

Some patients are misdiagnosed....some patients have more than one thing going on that can mimic UC.

It shouldn't be a guessing game...if you are properly diagnosed and have a set-up of meds that you can also control during flares and taper to maintenance...that's a good way to start and hopefully keep you going for a very long time.

In saying allllll that, not all patients can use 5ASA meds...but in part I would blame doctors for starting patients off on pred plus too high dosages of 5ASA meds, as well as neglecting to use rectal meds. 

There are options.

You have choices...try not to allow your skeptisism to alienate good sense and practicality for your future of dealing with a CHRONIC disease.

Get reallly smart about UC, its meds (options) as well as what you are doing yourself with diet, supplements, stress levels, support...etc.

Joke.....what do they call the med student that graduated at the bottom of the class? Doctor!

Not all doctors are good doctors......but not all patients are good patients.

quincy

Posted 9/26/2008 7:00 PM (GMT 0)
I was started on prednisone right off and it didnt work at all. I lost weight on it. I got the ugly moon face but otherwise, no relief. then the md tried Azathioprine, and that just gave me nausea,
then we tried rectal meds.. they helped a little bit... but not really. I went from a 10 to an 9 on a scale of 1-10. I still wanted to be a 0.

then I was started on remicade... poof!! everything was better.

recently the remicade stopped working.

I tried omega-3 and fish oil, and it gave me diarrhea... so that was a bust.
and i tried some probiotics... also no help - I tried them for over 3 weeks. and nothing.

I hope the doctor can fit me in before my next appt in December so I can try Humira.
Posted 9/26/2008 7:00 PM (GMT 0)
I'm fully aware their is no cure along with everyone else who has the disease. When certain people can remain in remission for 5-10 years then I would imagine their doing something right or differently from the rest of us. Or possibly they have a mild case of UC. I thought I had a mild case until I lost 35lbs in one summer before I was diagnosed.

It always seems like a guessing game with the doctors. I read numerous threads on here and everyone is trying new medication that their doctor prescribed, because the intial meds they prescribed apparently didn't work. I'm just speaking from heart because we all suffer. You make more sense then my current doctor. :-)

I'm always educating myself about this disease.Sometimes I feel like I know more then my doctor, not really haha. Your absolutely right not all doctors are good doctors. Thats the thing with the human body it adapts to everything we do so fast. I'm looking into a specialist in Philadelphia now who is very well known, but will see. I just have a bad taste in my mouth with my last two doctors because they wouldn't listen to me.

Posted 9/26/2008 11:01 PM (GMT 0)
Hi gofor,

     Yep, we are all different.  I was diagnosed ten years ago, in the hospital, very sick.  Enjoyed two years of remission, while off all meds (Asacol and Prednisone).  In 2000, experienced another flare, short term pred, back on Asacol.  Back in remission after two months.  Then another flare in 2003, doc started me on Colazal because my problem is in rectum and 6MP along with prednisone.  Getting flares every year now and this one started in April and I am still flaring.  Cannot get off the prednisone for longer than two weeks at a time.  So basically I would say I am prednisone dependant.  You can see by my lengthy statement below what meds and supplements I am on.

     Everyone is different.  Unfortunately, they don't know the cause of this and therefore, no cure.  By the way, my GI doctor wants to send me over to the Univ. of Pa. Hosp.  I live in south Jersey.  However the doctor he wants to send me to, I heard was a specialist in Remicade and he knows I was exposed to the TB virus back in the 60's and Remicade can reactivate the virus and it could be fatal.

Posted 9/27/2008 4:07 PM (GMT 0)
Hi Christine,

Thats what I mean you remained in remission for 2 years with no medication. I surprised your doctor only had on prednisone for two week periods. When I would have a flare up usually I would take it for at least a month and then taper off my dosages accordingly. I was usually fine after that, but were all different unfortunately. I would be very careful with the remicade considering your condition. I'm no doctor but viruses can remain dormant for years on end until you give them a reason awaken again. Thats probably the last thing you need on top of all your other problems.
Posted 9/27/2008 7:30 PM (GMT 0)
Hi Gofor,

     NO, you misunderstood me..lol.  I meant I could not stay OFF the prednisone for longer than two weeks.  I was on it for months!  Started in April on 30 mgm which did not help, hospitalized in May, wasn't able to get off the prednisone until beginning of August.  Back on it two weeks later.  Tapered off two weeks ago, now in major flare again and back on 40 mgm!

     You betcha gofor.....no REMICADE for me.  I would rather have my colon cut out.

Posted 9/27/2008 8:13 PM (GMT 0)
Oh my I really did misunderstand you. I never took it for months. Well I actually did take it for 1.5 months before when I was first diagnosed at 18. When I was sick in the hospital they were giving it to me through and IV! I was so druged up I didn't even ask them how many mg they were giving me a day. Usually my doctor will start me off with 60 mg a day, split up into 3 different meals.
Posted 9/27/2008 8:26 PM (GMT 0)
Hi, welcome to HW :) It seems you know your body and that is the first step to getting better. I always tell others that when they start to learn their body and it's signals then it will be easier to get their flare under control before it gets out of hand. As for the natural route, I did try it in the beginning of my diagnosis - but not because I wanted to, I didn't have insurance and I couldn't afford the meds. It didn't work out so well for me. I was orginally diagnosed with Ulcerative Proctitis but it had spread to left sided. I think that it spread too because even when I finally did get insurance, I was never faithful to my medicines anyway. But I am a med lifer - even on medications, I still have a hard time controlling this beast. With some of us, our UC is too aggressive for the natural route unfortunately. But if you can find something that controls yours then I applaud you! We do what we have to do to feel good right?
Posted 9/28/2008 7:03 AM (GMT 0)
I successfully go the natural route. In a perfect world I hope it for everyone to have the luck I've had but alas, that is unfortunately unattainable. I wish I had a solid regime to share with everyone here but my treatments are customized per flare based on my personal experiences. What works for some may not work for all. I think the reason UC is so mysterious is that everyone is affected, to a degree, differently based on their own physiology, diet, and genetics. Listen to your body and become receptive to signals sent.

I agree with you 100% that bacterial imbalances and yeast infections are a huge factor in UC flares. This coupled with a genetic predisposition toward auto-immune disorder is the cause of many--but not all-- unwelcome flares. Probiotics are a staple of my preventive maintenance. I also believe soluble and insoluble fiber are paramount in removing undigested fecal matter that feeds putrefactive bacteria and yeasts.

Certain pathogens like viruses can also be a cause by tinkering cell DNA causing an immune response, hence the ulceration. But that is another story...
Posted 9/28/2008 8:33 AM (GMT 0)
Quincy is 100% correct first line of meds should be Asacol Tablets and a Rectal Enema at night.... I am on that regime now and God willing it will work. Starting off on pred gets the body to used to hard drugs right away...
Posted 9/28/2008 7:43 PM (GMT 0)
Goforbroke, I go the natural route and have been in remission for over two years and I take zero medications or supplements, not even probiotics. I think UC is caused by an imbalance in beta carotene and magnesium. All I do is eat foods high in magnesium, mostly just nuts and seeds such as sunflower seeds and peanuts daily but all nuts and seeds are high in magnesium and I make sure I get a fair amount of beta carotene, spinach, romaine lettuce and carrots contain beta carotene. I tried many medications and could not reach remission with any of them. With this diet I have reached remission and have stayed in remission as long as I eat these foods. Also this diet has helped others on this forum to achieve remission. Read my thread 5 or 6 pages back called "I have discovered something that I think will help you too". Where you are starting a flare just two months back I would give this diet a try because if your flare is not way out of hand yet this diet can work quite quickly. If you try this diet and it works for you I ask that you( and anyone else this diet helps) write here and mention it because I want people to get the help they need and to know this diet really works.
Posted 9/28/2008 8:58 PM (GMT 0)
Cfromutah,

     I would love to eat nuts and seeds but was told to stay away from them as I also have diverticulosis.  Bummer...UC and diverticulosis...what a combo huh?

Posted 9/28/2008 9:29 PM (GMT 0)
Christine1946, Can you eat nut butters? nut butters have the same nutrients as the nuts themself. Maybe you can try sunflowerseed butter and eat more peanut butter also.


Posted 9/28/2008 11:53 PM (GMT 0)
hi, i just wrote a thread about my experiences. i've been in "remission" for 7 years without medications. i didn't take the meds b/c i didn't have insurance and couldn't afford them, and my gi dr refused to write me something that was available generic even after i told him my situation, and had the pharmacist to speak with him. i'm going in for my 2nd colonoscopy tomorrow, so i'll know if i've truly been in remission.
Posted 9/29/2008 12:58 AM (GMT 0)
If there's one thing we can all count on with UC, it's that everybody's body reacts differently. Medicine wise, diet wise. There's no rhyme or reason to it at all. Some of us can eat anything, some of us can eat hardly anything, some people have problems with dairy, some of us don't. The whole thing just makes no sense at all. We get so frustrated and wish that a cure could be found, but how can that happen when there's so many variables to this darn disease?
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