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GonnaGetThruThis
Regular Member


Date Joined Feb 2007
Total Posts : 55
   Posted 10/23/2008 3:18 PM (GMT -6)   
Hey all. I'm in a bit of a dilemma and would appreciate some advice from people who genuinely understand my problem so here goes...

My nan passed away in June which was obviously a stressful time and I started noticing some mild flaring symptoms so I was pretty worried and went to see the GP around the end of the month. She prescribed a course of steroids but advised only to take them if absolutely necessary and instead control the stress with anything else that would help relax me! So I did and it seemed like the symptoms "appeared" to go away.

Now a few months on and I've had some mild symptoms kicking up for the last month or two. I've had ALOT of wind and gurgling in the tummy and gut, some cramps on the left side as usual and more recently the urgency to go to the bathroom again. AND i've been getting a fair amount of blood & mucus when I go to the loo.

I've still got a valid prescription for the steroids and an appointment with the gastro next week so i'm really not sure whether to go back on the steroids or to just wait it out and hope the symptoms will fade away (again).

I'm really scared i'm gonna end up flaring quite severely and that's probably my only reason for going back on the steroids but as I'm repeatedly being told by the GP and gastro this is really a last resort that they would rather try and avoid.

Do any of you have any suggestions about what I should do or possibly ways to calm my system down as I'm really having trouble deciding the best action to take.
Status: possibly flaring again?? :(

- 25 yr old female diagnosed January 2004 with UC - Left side
- Asacol 2 daily (400mg each)
- Azathioprine - 100mg daily


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 10/23/2008 5:15 PM (GMT -6)   
Since your appt is next week, I'd hang in there if I could. Can you call them and just see what they suggest?
Age: 48
location: Seattle, Wa
Diagnosed with UC in June 2006
Medications: Asacol 3 pills 3 x/day, Canansa am & pm, Atenelol 1 x/day, Ativan as needed
No. of colonoscopies: 1
Originally diagnosed with moderate UC, pancolitis


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 10/23/2008 5:28 PM (GMT -6)   
Dont freak out it aonly is going to make it worse! Take deep breaths when you're stressed and try to relax : )
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4X2)
Corti Foam p.m.
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 10/23/2008 7:44 PM (GMT -6)   
I'm probably in the minority around here, but I'd suggest going ahead with a short course of steroids with a quick taper before your flare gets any worse. It may be just what you need to get things under control. If you wait until you're worse, it could take longer and/or a higher dose to work.

Are you on a high quality probiotic? If not, I suggest you start taking one. This will help improve your digestion and cut down on gas and gurgling.

Regarding stress management, I've found a regular yoga and meditation practice to be invaluable. I also find symptoms tend to hit me AFTER the stressful period is over... kind of a delayed reaction. This may be what's happening with you.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


GonnaGetThruThis
Regular Member


Date Joined Feb 2007
Total Posts : 55
   Posted 10/28/2008 6:15 AM (GMT -6)   
Hiya,

I've managed to survive another few days - have the appointment with my GI today so fingers crossed he has something worthwhile to share.

I'm not currently taking any probiotics, can you suggest a good quality one? If so, is it possible to get these on prescription or are they just over the counter supplements?
Status: possibly flaring again?? :(

- 25 yr old female diagnosed January 2004 with UC - Left side
- Asacol 2 daily (400mg each)
- Azathioprine - 100mg daily


Discouraged
Regular Member


Date Joined Mar 2007
Total Posts : 54
   Posted 10/28/2008 6:35 AM (GMT -6)   
What's a short course of pred with a quick taper?  I didn't know you could do that.  My doctor always says 40 mg for one week, then decrease 1/2 a pill for another week, then another 1/2 a pill for a week, and so on.  By then I'm fat faced and miserable!
Diagnosed with UC (proctosigmoiditis) April 2006
Asacol 1200 mg (3 pills) 3 times a day
Canasa suppositories 1000mg at bedtime
Currently in a flare and taking Prednisone 30 mg per day to taper to zero in about 9 weeks *just had dosage increased to 40 mg because I am not responding* Back down to 30 mg and doing okay..so far
Aciphex
Colazal
Rowasa
Bentyl when needed
 


GonnaGetThruThis
Regular Member


Date Joined Feb 2007
Total Posts : 55
   Posted 10/28/2008 7:33 AM (GMT -6)   
TBH Discouraged - I've never really had a "quick" taper. The average one has lasted at least 6 weeks, starting on a dose of 30mg, decreasing by 5mg each week. In that time I usually manage to get a bit podgy, develop an endless appetite, have sleepless nights and offend most of my friends and family with my insane temper and mood swings. That's why i'm trying to avoid it. wink
Status: possibly flaring again?? :(

- 25 yr old female diagnosed January 2004 with UC - Left side
- Asacol 2 daily (400mg each)
- Azathioprine - 100mg daily


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/28/2008 9:04 AM (GMT -6)   
I don't think quick tapering gives the drug enough time to work.

Your Asacol dose is ridiculously low (did we talk about that before?)
If I were you, I would be taking 10-12 per day at this point.
It has bumped me back towards recovery, and maybe you could avoid prednisone.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/28/2008 11:51 AM (GMT -6)   
If it were me, I'd start taking cortifoam rectal meds and a good probiotic daily and indefinitely, one that I use is called primadophilus reuteri made by natures way, it has guaranteed intestinal release, aid with lactose intolerance, high cholesterol and for women, vaginal health, it has aided both my IBS and IBD, it's affordable and only 1/day is needed. Only downfall is it must be kept in the fridge, but worth it.

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


potato
Regular Member


Date Joined Jun 2008
Total Posts : 281
   Posted 10/28/2008 12:22 PM (GMT -6)   

Yeah, Peety's right, your asacol dose seems almost unbelievable for left sided UC.  I was on 9 tablets when first diagnosed and I wasn't even in much of a flare. 

Before you go on the pred, have you tried a cortisone enema?  Or a 5 asa enema?  That seems like the logical next step.

 


Potato...  Female, 58, dx 11/07 mild left sided ulcerative colitis (50 cm)
asacol 3 3x a day, cortenema (generic) pm rowasa every other day 
culturelle, benefiber wafers  generic acidophilus, metamucil wafers, activia yogurt, spinach & sunflower diet, primadophilus reuteri
children's vitamin, Vitamin E 400 mg, omeprazole 2xday
oxazepam when needed, lomotil or ImodiumAD when needed
Yoga, meditation, The Work by Byron Katie, exercise at least 5 days a week
 
 
 
 
 
 


J B
New Member


Date Joined Oct 2008
Total Posts : 7
   Posted 10/28/2008 9:27 PM (GMT -6)   
I know this is unrelated and silly, but what's a probiotic? I've obviously never taken - should I be?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 10/28/2008 11:24 PM (GMT -6)   
Probiotics are living organisms that, when ingested in sufficient quantities, provide health benefits beyond basic nutrition. They're often referred to as "friendly," or good, bacteria.

Edward Farnworth, a senior research scientist for Agriculture and Agri-Food Canada, says that some strains of probiotic bacteria can kill the disease-promoting bacteria that live inside our intestines. During the time that the probiotic bacteria pass through the digestive system, they also release chemicals to communicate with the intestines. "As the probiotics go through, they're communicating with the intestinal wall, and the cells in that intestinal wall are starting all kinds of protective mechanisms for disease resistance and infection," says Farnworth.

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


GonnaGetThruThis
Regular Member


Date Joined Feb 2007
Total Posts : 55
   Posted 10/29/2008 8:08 AM (GMT -6)   
well.... I've actually been prescribed 6 Asacol daily so thats 800mg, 3 times a day. But I noticed i used to get some hair loss. Then when they introduced me to the Aziathioprine I had EVEN more hair loss so i just decided to lower the dosages myself and experiment a bit. My GI was happy with this as long as I was on an amount that suited me.

So instead of taking the prescribed 125mg Aziathioprine and 2,400mg of asacol, I cut it down to 800mg and 100mg of Azia.
Status: possibly flaring again?? :(

- 25 yr old female diagnosed January 2004 with UC - Left side
- Asacol 2 daily (400mg each)
- Azathioprine - 100mg daily


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/29/2008 8:15 AM (GMT -6)   
And that's why you're suffering.
Sorry, but you have confusing logic about what has "suited you."
You may end up on steroids as a result, and some hair loss will be the least of your problems!
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 10/29/2008 8:32 AM (GMT -6)   
     I've had UC for ten years.  My last flare started in March of this year.  I had to be hospitalized for ten days in May and slowly...VERY slowly...have come out of the flare.  For most of that time, I had to take prednisone.  It seemed like whenever I was off the prednisone for two weeks...wham...blood, urgency, diarrhea returned.  The end of September my GI doctor put me on 40 mgm of prednisone (he usually started me at 30 but it just wasn't doing the trick), with a taper of 10 mgm every week until I went to 20 mgm, then 5 mgm per week.  I am now on 5 mgm and hopefully will be OFF the prednisone by the end of the week.  He also increased my 6MP from 50 mgm to 75 mgm.  For the month of October, I have been symptom free..yaaaaaa.  Normal bowel movements, no blood.  I now have to have monthly blood tests instead of every other month.  This is to check my CBC and make sure my white count doesn't fall too low with the increase in 6MP.  My liver tests have been normal, although my pancreatic enzyme level was very high when admitted to the hospital.  I was taken off the 6 MP for a month because of that.  My Amylase and Lipase returned to normal levels after my fifth day in the hospital and I wonder if it wasn't a lab error to begin with.
     The doctor recommended I take probiotics and I take Powerdolphilus by Country Life, two daily.  My other meds are listed below.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


GonnaGetThruThis
Regular Member


Date Joined Feb 2007
Total Posts : 55
   Posted 10/29/2008 12:02 PM (GMT -6)   
@ Peety, I understand exactly what you are saying and totally agree.

But I was finding that the more my hair fell out, the more stressed I was, which in turn brought on another flare. It's a vicious circle and since I have only been dealing with this for the last 4/5 years I'm still experimenting and learning alot about it and how my body is responding to all the medicines & possible ailments.

It's all trial and error! TBH, I REALLY hate the whole idea of being reliant on medication. I'm really concerned about all long term side effects etc. and would love to find natural remedies that control the diseases instead.
Status: possibly flaring again?? :(

- 25 yr old female diagnosed January 2004 with UC - Left side
- Asacol 2 daily (400mg each)
- Azathioprine - 100mg daily


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 10/29/2008 12:29 PM (GMT -6)   
I know what you mean about relying on medication, it's a big adjustment.
I have lots of friends who struggle to change their diet to control their cholesterol or blood pressure when new meds can help so much, but they don't want to rely on medicine. Another friend who needed to give herself shots and take big pills said she thought she couldn't take pills...but now she knows she was wrong.
Better living through chemistry!!

I have had good luck with a naturopathic doctor, and improved enough to finally get off prednisone. But he emphasized that I should not stop taking the Asacol. He gave me strong probiotics, and some other herbal pills to "strengthen my colon" (licorice root?) but I haven't been good about remembering to take them.

I wish you wouldn't worry so much!! Keep in touch.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete probiotic first, then Forte pills. 
Achieved remission for the first time in many, many years!? Seemed so, but colonoscopy Oct. 6 proved not so, heavy inflammation in ascending colon & will be using Rowasa again. But I AM better.
 
 

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