First flare after stopping RX drugs

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Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 4/16/2008 9:13 AM (GMT -7)   

I’ve heard it will be worse. I’ve hear your old meds may not work the same. And it’s a very scary thought considering what I’ve gone through with this DX. But when I went RX free (stopped taking my asacol, imuron, and prednisone) my symptoms improved and I had the longest and best remission I have had in years. I finally gained some weight back and I haven’t been able to do that since my UC started 3 years ago. I owe this mostly to my diet. I can see the correlation to junk food and my UC symptoms.

My current flare: My UC was doing so good I began to consume more bad things. I even went out a couple times to drink. I stick to vodka b/c it seems to work best for my UC. I figured I was doing worse when I started to see some mucus on my stools. Well one weekend I drank some beer. It did affect me but not too much. The following Tuesday I ate a hamburger and fries at a local place and by Wednesday I was bleeding once again. Bleeding, then bloody looser stools. Then it got to mucusy blood usually in the mornings. But that’s not the worst part. The worse was my aching joints. That part of my UC symptoms was worse than I remember with a flare. My colon was sore (not during eating or digesting, just hurt my lower back) and my back and chest obviously had major inflammation going on somewhere. But I have been eating better and it’s the third week of my flare and things are improving. Blood is decreasing and stools are starting to form. I am so excited to be at this point in my flare considering it’s the first flare I have had to fight without using doctor prescribed drugs. I can post some of my UC tips I live by later if anyone would like. I’m not sure what exactly I am doing better for my UC, but I am so happy it seems to work.


                                                                                         
28/M/TX (revised 4/16/08)
Severe Colitis (pancolitis) since January 9, 2005
currently:  3 weeks of flaring and finally improving.
RX/day:  Tapered Prednisone completely January 2008. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
(believe me I know my body and do not recommend doing this!!!)
OTC: seldom use VSL#3, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it.
 


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 4/16/2008 9:31 AM (GMT -7)   

Got2Believe,

I truly believe that some of us can get off meds by following your example...I believe it can be done...we've just Got2Believe.  I also think that in some cases where diet failed, it could be because we consumed things that we thought were ok, but in reality they were not ok -- sometimes we follow diets that worked for others, not realizing that we are all unique genetically; so what's good for the goose may not be good for the gander.

tongue

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.


Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 4/16/2008 10:40 AM (GMT -7)   
Besides my Faith, diet would be the next biggest factor involved, but I have learned I have to live a whole different lifestyle now that I have UC. Less stress, more sleep, food combination, probiotics, vitamins, water, teas, exercise, etc...
                                                                                         
28/M/TX (revised 4/16/08)
Severe Colitis (pancolitis) since January 9, 2005
currently:  3 weeks of flaring and finally improving.
RX/day:  Tapered Prednisone completely January 2008. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
(believe me I know my body and do not recommend doing this!!!)
OTC: seldom use VSL#3, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it.
 


elliekate
New Member


Date Joined Mar 2008
Total Posts : 16
   Posted 4/16/2008 12:04 PM (GMT -7)   

Hello,

I follow the SCD diet strictly and it has also helped me tremendously. It is so restrictive that I'm looking forward to the day when I can cheat a little, although I'll always follow the diet. I am interested in the UC tips that you mentioned in your original post, and also how closely you follow the SCD. Thanks.

 

Ellie Kate
diagnosed with pancolitis 3/08
prednisone 15 mg
Lialda 4/day
Probiotics 7/day
Assorted vitamins


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 4/16/2008 12:17 PM (GMT -7)   
Yes, please share your tips.
Diagnosed 2/29/08 with Mild Universal UC
I've had UC since 2000 but was in remission for most of those 8 years med free
Lialda Colazal & Asacol made symptoms worse
Not taking any more meds for now. Trying a holistic approach.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30078
   Posted 4/16/2008 1:52 PM (GMT -7)   
You didn't flare because of the food. Your flare got worse because you didn't heed the worning signs and start meds.

Believe it or not.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 4/17/2008 7:03 AM (GMT -7)   
That is definetly one way to look at this situation, but I have to believe my consumption has a lot to do with it. I mean think about the name junk food. Why would anyone choose the word junk? And its not only what you consume, its when you consume it and how much you consume.
I just find it hard to fathom how a healthy college athlete would get a crazy disease like this. I've relied on my body and pushed it to its limits at times and I think that I didn't have to get UC. And I didn't ever think I would have colitis this long much less be on prescription meds the rest of my life. So I dedicated a lot of time and effort to my colitis. I'm a guy so I had to learn how to cook. I took extremely detailed notes about my body. I tried a lot of different things to try and treat my colitis, but what it all comes down to is mostly what I consume. Call me crazy, but I feel guilty eating something non nutritional especially when im flaring. People trip out when they eat with me b/c of what I am eating. I drink mostly water I eat mostly steamed vegetables and I really do notice a diffence with my digestion when I stay to far off my normal diet.
about my flare: I have to say I am still improving. But i have been at this point with my meds before and stayed way to long so I am curious to see if I continue to eat healthy if I can clear all my symptoms. SOrry this is so long, but I just want someone to read a thread that isn't about meds b/c not too many Gastroenterologists would even mention what you eat. When i was diagnosed my GI told me I could continue to eat whatever b/c it was all the same when it gets to the gut.
                                                                                         
28/M/TX (revised 4/16/08)
Severe Colitis (pancolitis) since January 9, 2005
currently:  3 weeks of flaring and finally improving.
RX/day:  Tapered Prednisone completely January 2008. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
(believe me I know my body and do not recommend doing this!!!)
OTC: seldom use VSL#3, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it.
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5151
   Posted 4/17/2008 9:03 AM (GMT -7)   
I agree that a healthful balanced diet is very important to maintenance of remission, but once you've been diagnosed with IBD it's dangerous to quit anti-inflammatory med. cold turkey. My 1st gastro, who was not experienced in treating IBD as it turned out, advised me to quit med when I got to remission, so I did. 3 weeks later I had a major flare on my hands again, with a longer stretch of colon inflamed than during the initial flare! / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)
 

quincy
Elite Member


Date Joined May 2003
Total Posts : 30078
   Posted 4/17/2008 9:12 AM (GMT -7)   
I don't know......I think the strategy of "balance" is good way to deal.

Pushing the body to the limit and beyond can actually trigger autoimmune disorders (in those susceptible)....it can only handle so much.


Junk food is called such because it contains a lot of "stuff" in high dosages. Low food intake for high negative return.

Lots of steamed veggies....hope you're also eating a balanced intake.

We can have our cake and eat it too.

You should get back on your meds....at least for maintenance.

You're more emotionally attached to the negatives than the positives.
Try it for a while, but don't miss the important symptoms that are nudging you to start actually believing you need the meds.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 4/17/2008 11:30 AM (GMT -7)   
Thanks for all the input guys. You all are great! I have just had the best remission in a long time and so far it seems that I just went through a bad flare and it didn't take me months to get to where i'm at. 1-2 controlled BM per day with blood decreasing daily. (which is way better than 5+ uncontrollable BM's per day) I am a person who has bled the majority of my time with UC and need to see improvements. Maybe I should try different maintenance drugs to see which works best for me, but for now I am choosing to go this route and I will definatley tell the world if it works for me or it turns out to be a bad idea.
If anyone wants my tips hit me up on my e-mail. THey have all probably been said before. I'm just saying like earlier it is what, when and how much food to eat, what are good combinations. I use probitics, digestive enzymes, get enough sleep, laugh and play with my two year old daughter everyday and things. I eat a lot of things. beef, chicken, fish, fruits, vegetables, nuts, seeds, very little sugary things...Never soda, never coffee...Never energy drinks...Never fast food joints...Well anyway like I said I eat healthy and do some other things I think help.
                                                                                         
28/M/TX (revised 4/16/08)
Severe Colitis (pancolitis) since January 9, 2005
currently:  3 weeks of flaring and finally improving.
RX/day:  Tapered Prednisone completely January 2008. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
(believe me I know my body and do not recommend doing this!!!)
OTC: seldom use VSL#3, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it.
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5151
   Posted 4/17/2008 5:06 PM (GMT -7)   
Better to hold off nuts & seeds when you have bleeding. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])
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