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Advice from veteran Uc'ers to the newly diagnosed

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Ulcerative Colitis
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Posted 11/5/2009 1:38 PM (GMT 0)
I think so too since there is just so much good information on here. :)
Posted 11/6/2009 7:10 PM (GMT 0)
I'm a veteran (at least according to Healingwell's criteria!) and though I've 'only' had UC for a few years I'd like to add a bit to this too. There are some interesting responses already so I won't repeat what's been said:

1. Always have hope/never lose hope. No matter how bad things are.

When I was flaring severely I always woke up thinking that this is the day that things will turn around, or even better, this is the day that someone might have found a cure for UC. Yesterday's gone. So the 30 trips to the bathroom yesterday are history. Start today with a clean slate and move on. Whether you like it or not, the world's going to carry on, with or without you -- so don't get too caught up in your problems otherwise you might get left behind.

2. Keep Trying. There is a solution out there.

You just need to keep trying and making educated decisions about what might work for you. Sooner or later you'll find it -- whether it's switching from one 5ASA to another, using rectal meds, trying probiotics and other supplements, changing your diet, trying a new treatment such as remicade, fecal transplant...or even having surgery.

3. Dream Big. Keep Smiling.
Posted 11/6/2009 7:19 PM (GMT 0)
Rio - Thanks!!

Posted 11/6/2009 8:43 PM (GMT 0)
The best Toilet Paper is Kirkland (Costco).
Posted 11/6/2009 9:24 PM (GMT 0)
I've never bought their toilet paper but I love everything else Kirkland so why not??? :)
Posted 11/9/2009 11:56 AM (GMT 0)
:0)
Posted 11/9/2009 5:28 PM (GMT 0)
Bump!
Posted 11/9/2009 8:17 PM (GMT 0)
It is important to become aware of your body. Your body is trying to tell you something.

When I first found out I had colitis, I searched the Internet to find out as much as possible. I took note of my body's history and what natural treatments might work for it, and I applied the treatments I found applicable to my situation until I found what works best for me (fecal transplantation, probiotics, and diet).

The stress response can result in illness and disease. Stresses can be both physical (bacteria, ...) and mental. Here are the six stages of disease:

Stage 1: Accumulation of stresses.
Stage 2: Preconditions for certain diseases is provoked or certain disease(s) is provoked due to type of stressors.
Stage 3: Disease begins spreading. At this point, one may not feel anything different from before.
Stage 4: Symptoms manifest.
Stage 5: Pattern of disease is firmly established.
Stage 6: Differentiation of disease. The disease has an ego of its own.

For all diseases, meditation, breathing exercises, regular exercise, and diet can help heal a sick body and maintain health. Other treatments, such as fecal transplantation and probiotics, target the particular disease. They will reduce stressors such as not having enough strains of bacteria in the colon.
Posted 11/9/2009 9:18 PM (GMT 0)

Joy - you are so right - being in "tune" with your body.  I learned at an early age that NO ONE knows my body like I do.  If a doctor tries to tell you how you feel, etc. - get a new one. 

Once I was hurt by a pap smear (incompetent doctor) and was scared to have another.  When it came time I had a panic attack - knowing I SHOULD have the test, etc.  Then I realized - hey, this is my body, I can do what I want - no one has to force to do any tests, take any pills, etc.  Once you relax and find a good doctor it all comes together.  I know that my first gastro doctor was "ok" but when pushed against the wall and not knowing what to do for me next - he referred me permanently to the specialist in Albany.   Now - HE IS A GOOD GASTRO DOCTOR!  He has a lot of experience, etc.  He is conservative as I am - told me I should not have taken the prednisone so long (and he was so right) and told me my UC is not serious enough for Remicade considering the risk - FOR ME! 

So, yes, listen to your body, relax, and get a doctor who will listen to YOU!!

ElaineNY

Posted 11/10/2009 12:17 AM (GMT 0)
is UC contagious from general contact or just being near someone that has it?
Posted 11/10/2009 12:19 AM (GMT 0)
Kaitlyn, UC is not at all contagious. There is no known pathogen that causes it.
Posted 11/10/2009 12:22 AM (GMT 0)
Thank you!
Posted 11/10/2009 7:56 PM (GMT 0)
:0)
Posted 1/13/2010 1:32 PM (GMT 0)
I have this in my signature but I thought I would bump this to the top for our forum newbies!
Posted 1/13/2010 3:51 PM (GMT 0)
Sherry...do you think it might be a good idea to also add the link to this thread to the list of UC resources at the top of the page? Just an idea...so whatever works best.
Posted 1/13/2010 4:20 PM (GMT 0)

I added it!

Posted 1/13/2010 5:08 PM (GMT 0)
Thanks Fruitgirl!
Posted 1/13/2010 5:55 PM (GMT 0)
Take at least 250 billion good varied strains of probiotics.
Posted 1/13/2010 7:59 PM (GMT 0)

I just passed the 10 year mark last spring and feel that I have learned to successfully manage my UC and am living a normal, happy life.

I agree you should learn as much as you can about the disease; however, I'd also urge folks to learn about the digestive system in general, how a healthy one works and the various pathogens and lifestyle and dietary choices that can cause problems.

Prepare yourself for a long battle. UC is complicated and has many causative factors. A lot of trial and error and determination is necessary to learn how to manage your condition. YOU are your own best health advocate. It's up to you to arm yourself with knowledge and to gather friends and family around you who can support your efforts. Accept that your doctor may not have the answers you need. Many are trained strictly in meds and surgery and those are not the only treatment/healing options available. Healing is often a long, spiraling journey. Accept there will be set backs and tough times. Be good to yourself during these times and do everything you can to reduce stress, eat a healthy diet and get plenty of rest. Don't hold emotion in. Have a "pity party" when necessary, then renew your resolve. Don't give up hope, no matter how anyone (even your doctor) discourages you.

Use meds as needed to stop bleeding, reduce inflammation and get out of crisis mode. Be tested for viral, bacterial and fungal infections that may be causing or at least contributing to your diagnosis and work to clear infections and/or yeast overgrowth. Rebuild healthy gut flora with high doses of a proven probiotic. Use natural supplements to help support meds to heal the gut and reduce inflammation. Research dietary changes that have helped other UCers. Experiment and keep a food journal to identify and eliminate food allergies and sensitivities. During times of worst flaring, it can be helpful to go on an elimination diet where you eat only a few healthy foods you know are generally safe for you personally. If bleeding and inflammation continue to be an issue, investigate predigested liquid diets that can give you the nutrients you need while allowing the gut to rest and heal.

Posted 1/14/2010 5:32 PM (GMT 0)
Hi there! Veteran UC'er here....10 years ago this year!

1st: go easy on yourself. I blamed myself for this - was it all the bad food, was it b/c I smoked, what about all the anitbiotics I was taking for recurring UTI's, blah, blah, blah. It took many years to realized "it is what it is" and I needed to learn to cope with it b/c the more I had internal battles with myself, the worse I made my condition.

2nd: research, research, research. When I was diagnosed, the info on the net was awful. Gay man's disease, etc. I FREAKED myself out and was hysterical! Now, there are some great resources on the net, such as this forum, which didn't exist back then. I talked to my doctor, read books on UC, etc. I researched and talked to professionals that dealt with homeopathic remedies, sought out 2nd, 3rd and 4th opinions from different GI docs. I empowered myself which enabled me to question and ask about alternative treatments when I would see my GI doc.

3rd: It's okay to question authority (your doctor), but if your doctor doesn't listen to you, find a new one. Mine is great. I sought out several doctors and ultimately stayed with the one that diagnosed me. He's was the most open minded GI and truly listened and didn't discredit some of the odd balls things that I've discovered over the course of my disease, such as protein seems to make me flare when I eat too much of it over a course of several weeks, my back goes out right before a flare or that with chiroproatic care my flare ups are much more manageable when I get one.

4th: Realize that what may work for you, may not work for someone else and vice versa. And if it works for you and someone says, "hog wash.", listen to yourself, learn from your experiences and know in your heart that you are doing what's best for you. Experiment with different things....if you don't try it, you'll never know if it will work for you (i.e. probiotics, honey, chiropractic care, supplements, etc). When you find a regimine that works, stick with it and if you don't, keep a journal of what does so you have something to fall back on when you begin to flare again.

5th: DO NOT stop your meds no matter how GREAT you feel WITHOUT speaking to your doctor first.

6th: Think positive, exercise, and learn to READ your body. Keep a journal - how you are feeling, write down aches and pains, when you flare up, what you eat, etc. Getting this down will come in time. For me, I can tell about 1 to 2 weeks before a flare hits. My back goes out, my BM's change ever so slightly, I get a skin rash in the crease of my elbows and my hips hurt. NEVER NEVER fails for me. When I listen (and trust me, sometimes I don't even 10 years later), I start my rowasa immediately and make sure I don't miss any Asacol. I go easy on my food and usually can knock out a flare up in a couple weeks. When I don't listen (which was this past November), it takes a lot longer to get under control - going on a 2 month flare up, and it's manifesting to other parts of my body (eyes).

7th: Coping comes in time also, and learning to "deal" with UC comes with each passing flare up. Knowledge is power and is a key element in coping with this disease. The more you know about your body, the disease and the meds, the better equiped you are to deal wiht the ups and downs.

Hope that helps someone. Take care all!
Posted 1/15/2010 3:15 AM (GMT 0)
Princesa and Trixy, thank you so much-- you really are heroines to me!!!!!! / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 1/15/2010 4:43 AM (GMT 0)

I was diagnosed in 1985 at age 19.

 

Flares will most likely come and go but they come and go in similar ways…learn to read your normal coming of a flare (smelly gas at first, maybe days or weeks of morning diarrhea, mucus, blood obviously).

 

At first sign of bm changes you believe are leading to a flare, see your GI and get on more medication.

 

Listen to your body and try to ignore most of the supplements and diet advice of others. Just because one person on a forum found they were allergic to peanuts doesn’t mean you need to avoid peanuts (or dairy or red meat, any other foods). The flare is caused by something which triggers your immune system not someone else’s. So when you get flares, pay attention to things that occurred weeks and months prior to your flare. For instance, my sister says she always will flare when under stress at the same time she neglects to take her VSL#3. I flare when I get a virus while under a lot of emotional stress.

 

You will be inundated with diets and supplements from all sorts of folks trying to help. Some come from UC patients that went into remission for a few years and believe they found special solutions and are eager to share. Most of those patients will have another flare. It’s tempting to believe you will not have another flare because of some change you made (diet, supplement, etc.); especially if you go into remission for 3-4 years. You still have the disease and something will probably trigger your immune system again to cause another flare. So don’t stop taking your maintenance drugs.

 

Your GI should know what other things (herbal medicines, supplements, natural treatments) you’re taking as those interact with medications you’re prescribed.

 

Read up on all the drugs and treatment options.

 

Don’t be afraid of prednisone, Remicade, Imuran and other drugs. You want to try to save your colon. Colon removal is major surgery and is not without risks.

 

I’ve researched it and it is possible to have a partial colon removal. If much of your colon is never inflamed then you should seek a surgeon who will discuss saving what colon you may have left that’s in great shape. At least talk to them.

Posted 2/22/2010 11:45 AM (GMT 0)
Newly diagnosed but apparently had it for a long time (1990 or so is my guess) looking back at the symptomology.  Still learning about all of this and do find it confusing and depressing.  I am a 43 yr old male.  I can understand that foods do not cause the disease but can aggravate a flare.  I went to the GI doc when I got the point of being afraid to eat, period!  UC is what he says I have.  I do not seem to exhibit all of the symptoms.  But every 7 to 10 days I have to go through an episode that makes me tell my wife to just shoot me and get it over with (jokingly) so the pain will quit.  I have no clue what is really going on with my insides, only that when an episode starts just the mere thought of food puts tears in my eyes, wondering if it will hurt me to eat it.  The hell of it is I have been trying to eat a lot healthier the last several years and now I have to toss a lot of that out the window.  The lialda seems to mess with my metabolism, I eat small meals often already anyways, and I feel literally shaky or like a sugar low if I don't eat every 3-4 hours.  Rather than losing weight as I had read as typical I have gained back 8-10 lbs I thought I lost.  I thought at first the lialda was at least lessing the severity of my episodes and was hopeful that this was the path to remission.  This scares me.  WOW, guess I rambled a bit.  Trying to decipher some of the advice I have read here.
Posted 2/22/2010 4:07 PM (GMT 0)
mdf34, welcome to the forum!

Have you done much reading on rectal meds yet? I suggest you ask your doc for them.

Regarding foods...try and eat as balanced as possible and take supplements for the foods you don't want to eat or can't eat.

It takes a while to figure it all out....too bad it took soooo long for you to be diagnosed, was it because you didn't go to the doc or that the doc wasn't focussed on your symptoms?

quincy
Posted 2/22/2010 9:09 PM (GMT 0)
Thanks for the welcome!:-)

When I really noticed I was having issues, especially with specific foods, I asked my PCP at the time about it.  He was like....."So let me see, this, this this and this bother your stomach and you won't eat them?  I said yes and he said GOOD.  Episodes were so occasional, but violently painful, that I didn't pay much attention.  I am sure last year was stressful for most everyone.  I was no exception.  So when my episodes were getting to be almost daily and unpredictable I realized that it was time to see a doctor.  I guess my symptoms are a bit atypical, but the doc had a look see and says that's what I got.

Way back when my problem was only a sometime thing.  I realized popcorn was a problem.  That day sucked cuz I loved popcorn.  Every once in awhile I would have an episode, but nothing like it is now.  So it was hard to realize something was going on I guess.

Post Edited (mdf34) : 2/22/2010 2:17:16 PM (GMT-7)

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