Question I've been researching.

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MastaCAK47
New Member


Date Joined Jan 2008
Total Posts : 2
   Posted 1/6/2008 7:03 PM (GMT -7)   
Hello,
  I was diagnosed with Severe Ulcerative Colitis 7-8 months ago.  Thinking of how I could have possibly gotten this Chronic Illness, is still unknown, which probaly never will be known, since there is no actual logical explanation explaining why we become diagnosed with this serious Chronic Illness.  I still, however, am sticking with my first guess, I do believe it came from alot of stress. sad    I rather not get into a whole life story, but I just recently lost my father, who I was very close with and recently I've become very stressed with life and what I will possibly do, due too alot of problems, from medical, physical, too financial.  I recently started noticing alot of blood coming from alot of bowel movements, which from my first guess, was just probaly something I ate, however, I skipped a day of eating, with the exception that I did eat a little bit of something for dinner, but it couldn't, from my knowledge, come out red.  Each bowel movement has been producing blood, which I'm guessing is coming from ignoring the medical evaluations by my doctor.  I cannot afford medicine, therefore, I have been unmedicated even after my colonoscopy, which is continously worrying my doctor.  I have come too a serious decision, that most will not agree and possibly flame me for, as I know the expectation of my decision.  What I am scared of, is the surgeries that I have been reading up about and from the straight go, even if I die from it, I rather not get any type of surgeries.  My question is, am I allowed to refuse the surgeries?  Before you flame me, despise me, or whatever, please understand, I know what may happen if it happens that my large intestine is massivly bleeding.  I thank you all for reading my post, I appreciate any information you guys can give me.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/6/2008 7:43 PM (GMT -7)   
The choice for surgery is strictly your own, no one can force this on you...and everyone is entitled to their opinions...to the best of researchers knowledge to date, stress does not cause this disease but definitely can exacerbate flares...it's thought more along the lines of environmental triggers bringing the disease out for those who are genetically predisposed to getting it...there is however nothing written in stone, and one day researchers may find concrete evidence that stress is a trigger, they already KNOW that for crohns (another inflammatory bowel disease) smoking is one known trigger for crohns, including second-hand smoke.  But this may not be the case for every crohnie either, there could very well be many other things that trigger ones crohns or UC.

:)


My bum is broken....there's a big crack down the middle of it!  LOL  :)


jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 1/6/2008 7:55 PM (GMT -7)   
i don't understand a medical system that has plenty of tests available -ie:breast cancer mobiles going into low income neighborhoods, how do the people pay for the breast cancer drugs if they find out they have it? how is there no way for you to get the drugs you need if there was a test given to find your problem? perhaps there are urgent care clinics that could help
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily
colazal 3 3x daily
proctofoam 3x daily
mesalamine enema 1x daily
canasa suppostiories 3x daily (usually doesn't get to do 3)
culturelle probiotic 1 daily
chewable vitamin
hydrocortisone enema at bed tme


doors12
Veteran Member


Date Joined Jul 2006
Total Posts : 636
   Posted 1/6/2008 7:58 PM (GMT -7)   
MastaCAK47 said...
I cannot afford medicine, therefore, I have been unmedicated even after my colonoscopy, which is continously worrying my doctor.
If you cannot afford medicine, are you able to apply either for local State health insurance (if available where you live) or (assuming your in the US) Social Security Disability (if you are disabled and cannot work)?
 
There are many medications that might benefit you, I'm on colazal and doing pretty well (MUCH better than when I was diagnosed and sent to the ER)
 
You can also do things like contact the medication manufacturer, get free samples from the doctor etc... Just ask people around here and they can tell you how, or ask your GI, or the CCFA
 
Also, some pharmacies have low cost prescriptions on common drugs (not sure how many *if* any UC drugs are on that list) for instance Target, Walmart.  And there has been discussion on this board that Colazal is going generic.
 
 
Why play the martyr and try to get by without treatment?  Keep in mind that you may be doing yourself a disservice by allowing your health to worsen to a point where it may indeed force your hand into action, so to speak.  What I mean is, if your condition could be kept stable with simply taking X amount of pills per day and following up with a GI, why not pursue this vs waiting for a medical emergency?
 
Just thoughts to keep in mind - not trying to flame you in any way


Diagnosed with Ulcerative Colitis 6/2006 at age 26 after sudden E.R. visit
~Pancolitis (Mild to Moderate)
 ~I had Mono in 2000
On Colazal 3x3/day; Folic Acid 1mg; Calcium/Magnesium/Zinc combo
In remission about 2-3 months after E.R. but not back to normal!
 
~Interested in finding a cure/making sense out of U.C. and philosophical and psychological aspects of UC and "Stress" and Personal Development issues with Chronic Illnesses. 

Post Edited (doors12) : 1/6/2008 8:01:11 PM (GMT-7)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/6/2008 10:05 PM (GMT -7)   
I do agree that if you want to take the medication there are ways for you to get help.

As for your right to refuse surgery, I can only speak for the US. If you live here, are at least 18 years old and mentally competent, you have the right to refuse any medical treatment you don't want.

Please do re-think this. I don't know how old you are, but you sound rather young. You don't have to suffer your whole life when there are medications that will help. You can have a good and productive life. If you're thinking you don't care about living, please ask someone for help. Most large cities have suicide hotlines or your GI can refer you to someone who can work with you at reduced cost. Even with UC, life is too beautiful to squander.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Intolerant to Asacol and rectal mesalamine preparations.
On Prednisone then Entocort 2001-2006 with only short periods off. 
Current meds are Colazal, Azathioprine Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 1/7/2008 12:18 AM (GMT -7)   
Hi MastaCAK47
 
Welcome to the boards.
 
Some of us have found relief from our symptoms by controlling it through diet. It's not an easy thing to do, but it beats the alternative. I avoid anything made with processed sugar like cookies, candies, milk, cakes, sodas, fruit juices, etc and I cut back on starches. Doing this has helped alot because I can actually have a life now.
 
Why not give it a try...but bear in mind...it's not for everyone.
 
:-)
NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.

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