Advise badly needed

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No end in sight
New Member


Date Joined Dec 2008
Total Posts : 2
   Posted 12/14/2008 10:24 AM (GMT -6)   
hello there.. am new to the forum & am hoping to get some advise from people who've been through this ... i was diagnosied with a 40cm severe left sided UC Sept 07.. between then & now i've been on prednisoline ( between 30 & 40 Mgs daily) and asacol, Azathioprine & ciclosporin... none have worked & now my doctor has put me back on Azathioprine with the intention of putting me on a course of injections in the new year... i'm concerned with taking the steriods for such a long time, considering what i've read about continous use of them.. i really need some advise as to whether there is some alternative meds out there that can help.. in the last year , i've had to have a blood transfusion due to blood loss beacuse of the rectal bleeding & have had some " accidents" at work with with some close calls on making it to the toilet on time.... its completely changed my life & not for the better.. any advise would be greatly appreciated...

glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 12/14/2008 11:27 AM (GMT -6)   
Have you tried rectal meds? The ASA meds make me worse so I can't do the rectal form but there are steroid enemas that work well. You have every right to be concerned about being on Prednisone for an entire year. I would talk to your doctor about a better game plan or switch doctors.
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


limit_sugar
New Member


Date Joined Dec 2008
Total Posts : 3
   Posted 12/14/2008 8:32 PM (GMT -6)   
Here's the advice, see diet below.
 
Prior to this diet, what worked best for me was one Rowasa enema at bedtime.  Hold it overnight.  Lay on your left side as you sleep.  Hold 1/2 bottle if that's all you can at first.  You have to be a fighter and hold this medicine overnight.  This is where the battle can be won.
 
I have experienced a very good stretch of time with extremely reduced symptoms after suffering with it for going on 7 years.  In the past I have tried many different things including Asacol, Rowasa, Prednisone and others.  I also have tried various diets in the past with varying levels of success.
 
What has worked for me extremely well for the past 2 months is a diet change.  I significantly reduced the amount of sugar intake and, in particular, avoid anything with high fructose corn syrup.  I also am avoiding milk.  Absolutely positively NO POP!!!  And, absolutely NO FRUIT JUICE or HONEY!!
 
It is somewhat difficult, but give it a week and see if things get any better.  I know it is tough.  This means no pop, no fruit juice, cookies, cake, ice cream, or just about anything sweet.  No milk, no coffee, no tea.   For my sweet craving, my wife has been making me plain fruit pies w/o sugar.
 
The up side of it is that I have been able to eat just about any regular meal.
 
Snack on pretzels, saltines, fruit.  Avoid potato chips and junkie snacks like cheez-its.  Some of these contain fructose.
 
Read labels, give it one week.  Stay on your medication while you do it.   
My symptoms shut off like a faucet.  I hope yours do too.
 
Good Luck. 

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/14/2008 11:26 PM (GMT -6)   
Rectal meds, a good probiotic daily and a fibre supplement daily and eating as healthy as possible (eliminating as much as possible, processed foods/beverages, fast-foods, animal fats, refined sugar/artificial sweeteners, alcohol and caffeine is my advice...along with drinking chamomile tea and looking into some other natural anti-inflammatories like chamomile tea.

:)


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


No end in sight
New Member


Date Joined Dec 2008
Total Posts : 2
   Posted 12/16/2008 4:21 PM (GMT -6)   
thanks for the advise guys .. its good to know there are others out there with this ... i didnt realise how common it is & how it affects (moderately ) young people ... i'd love to change my doctor but am living in england & thats not possible with the wonderful NHS healthcare system... has anyone had the injections? they are called Infliximab and i'll get one a month along with 150mgs daily of the Azathroprine... originally when he first diagnosied me, my doctor said that the injections would be the last option before surgery... i dont like the idea of having an operation to have the offending area removed but if it was going to put an end to it completely....also i've been reading about a probiotic called VSL#3 which sounds like its pretty effective..has anyone tried it?
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