No regularity and a lot of urgency

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Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 5/10/2009 9:29 AM (GMT -6)   
Since I've been diagnosed back in Nov of '08 I've definitley seen my fair share of symptoms but have yet to witness what a remission is.  The D I was having was mostly in the morning (4-5 times) and maybe 1-2 times throughout the rest of the day. 
 
Latley my BM's have been on their own schedule.  I'm still going 4-5 times in the morning but throughout the day there's no telling when I'm gonna have to go.  Also, I'm now getting up in the middle of the night to go once or twice and it seems that it happens most when I roll over on to the left side of my body. 
 
I'm assuming I'm going through a pretty bad flare right now with no sense of regularity and some blood in my stool. 
 
Does anyone know what I could try to do to regulate my BM's other then getting on prednison?
 
Thanks!
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
6MP - 50mg - started 5/04/09
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3  
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso
Sunflower Seed & Spinach Diet - Started 4/26/09


quincy
Elite Member


Date Joined May 2003
Total Posts : 30676
   Posted 5/10/2009 2:23 PM (GMT -6)   
Hi...you should also enquire about rectal meds to help heal the rectum and into the sigmoid.

You have pancolitis, and only on meds since November....not complete meds from my perspective.

Eventually you'll develop a pattern of going....a lot does have to do with how much waste is being processed in your digestive tract and what kind of food you're eating....etc.

I sure don't suggest prednisone.....see if you can at least get the help from 5ASA meds...again, to help the rectum heal or at least to get the inflammation down to help with the urgency, etc.

You could add a fibre supplement to also aid in bulking up the stool, that will slow it down a teeny bit.....as well, an antispasmodic will possibly help with some of the urgency at night.

Hang tough, get on a good 5ASA med regimen..oral/rectal....and now that you're on 6MP, that can hopefully get the reaction down a bit so that your healing can continue.

As well....UC starts at the rectum and continues upward....but heals downward, so the rectum is also the last to heal.

Your recent bout with PSC may not be helping matters, and you have to heal from the biopsy and ERCP...again, maybe increasing the reaction considering both UC and PSC are autoimmune

quincy
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 5/10/2009 3:52 PM (GMT -6)   

Thanks Quincy,

2 questions for you...can you be on a rectal med and a 5 ASA at the same time and what are the different types of rectal meds?

It's funny that my GI hasnt recommneded any of this to me nor has he brought it up.  Getting him to allomw me to take something other then Remicade was like pulling teeth!


Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
6MP - 50mg - started 5/04/09
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3  
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso
Sunflower Seed & Spinach Diet - Started 4/26/09


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 5/10/2009 4:56 PM (GMT -6)   
I was diagnosed the same time as you Shadam, but much different story. I already been remission on Asacol and then it began to attack me and made me bleed with side effects. I seem to be intolerant to all 5-ASA drugs in some way at least at maintenance dosage levels. Something is keeping me fairly in check but I'm not exactly sure what, though I do still have some urgency as well especially if nerves kick in.

I don't know if this will help you but it is something I suggest on this board. Natures Way Boswellia 300mg to 600mg 3 times a day, give it a month or so and see if it helps.

Maybe experiment with different probiotics and different dosages, it seems it takes a lot to have an effect. I'm still doing this myself to try and find what does and doesn't work for me.

Shadam
Regular Member


Date Joined Jan 2009
Total Posts : 307
   Posted 5/10/2009 6:21 PM (GMT -6)   
Thanks Zippy,

I've been on a probiotic for about a month and a half now and I dont notice any difference or advantage of being on it.  I think I might try Align but it's so expensive. 
 
Has Boswellia helped you?
Age: 25 / Male / Florida
Diagnosed: 11/08 / Pancolitis
Asacol - 2 x 3 day (waiting for results)
6MP - 50mg - started 5/04/09
Prednisone / ended 1/09 (started at 30mgs and tapered down)
Mens Multi Vitamin - 1 a day
Calcium & Vitamin D3 - 1200mc of Calcium and 800iu of Vitamin D3  
Jaro - Dophilus Probiotic (3.4 Billion) - 1 a day
Diagnosed with PSC: 3/9 --now taking Urso
Sunflower Seed & Spinach Diet - Started 4/26/09


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 5/10/2009 7:44 PM (GMT -6)   
Shadam said...
Getting him to allomw me to take something other then Remicade was like pulling teeth!


Don't forget your doctor works for you not the other way around.

Hydrocortisone enemas usually work quick and attack the inflammed rectum with few side effects. You can use all the rectal meds in conjunction with the 5-asa's. There's several different types, but I have only used the rowasa and cortenemas.

You can actually be on an oral 5-ASA, a rectal med, prednisone, an immune suppressor like azathioprine, and humira all at same time for some GI's!

Lomitil or bentyl will help with the frequency. Immodium can help that too.
Proctitis DX 1999, Pancolitis DX 2008
Immuran
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3+Ca/1000mg DHA

Post Edited (Dr-A) : 5/10/2009 6:48:00 PM (GMT-6)


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 5/10/2009 7:46 PM (GMT -6)   
Shadam said...
Thanks Zippy,

I've been on a probiotic for about a month and a half now and I dont notice any difference or advantage of being on it. I think I might try Align but it's so expensive.



Has Boswellia helped you?


Hi, yeah it can be hard to tell with probiotics, you need pretty high doses of it to have an effect usually. I've been using Digestive Advantage, Pearls, Jarrows, and Jarrow Saccharomyces Boulardii. I am going to experiment with using just one for a while then switch to the other and see if I can tell any changes in my BM's or how I feel. I need to find out what works and what don't. There are so many choices out there. I will probably always stick with Saccharomyces Boulardii though.

I think Boswellia has helped me out, but I wouldn't know for sure unless I stopped taking it for a while. I hardly been taking any drugs for over two weeks now because they tend to give me other health problems at normal dosage. I've been on Boswelllia since Feb 19, I make sure I take at least one or two pills at 3 times a day. They don't have any side effects that is known or I have noticed even at high dosage. I'm afraid to stop taking them, they might be the only thing keeping things somewhat under control for me.
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