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LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 8/11/2009 3:01 PM (GMT -6)   

Well today I had my second colonoscopy...didn't go as well as last time

I felt alot...hurt ..and he said I wasn't completely empty... I went to the bathroom all friggin day so I guess that was a waste...and I still have active colitis..so have to go talk to him about changing meds...and also have IBS on top of it

so ya...not the best day i guess...sorry just have to vent.

I am worried...I have pancolitis...if the pentasa is not working...what next?? He wants me on pred again too....

I am a pretty happy guy...but right now..this disease has me pretty down....hopefully won't last long


Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


NiRo
Regular Member


Date Joined Aug 2009
Total Posts : 198
   Posted 8/11/2009 3:08 PM (GMT -6)   
Hi - did you still have symptoms (bleeding, urgency, mucus, diarrhea, etc.) before the 2nd colonoscopy? What was the doctor's reasoning behind it?
Lialda 4x a day
Rowasa Enema 1x at night
Align (Probiotic) 1x a day
Fish Oil 4x a day
Multi-Vitamins (includes Vitamin D, Vitamin C) 1x a day


quincy
Elite Member


Date Joined May 2003
Total Posts : 30366
   Posted 8/11/2009 3:12 PM (GMT -6)   
Hi...what clean-out did you use?

You really should be using rectal meds to help inflammation there and use it consistently until you're improving.

When were you last on pred?

Did the doc take lots of biopsies?
When do you go back for results and continued treatment?

q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x 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....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ 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 !!!
 


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 8/11/2009 3:21 PM (GMT -6)   

I did have some symptoms on and off before the 2nd colonoscopy, but nothing compared to before I started treatment. He hasn't given me a reason yet, I have to have a follow up appointment. He just said that it was still pancolitis and still active.

I do still have a problem with keeping weight on tho...

I used Pico Salax for cleaning out. Last time it worked great. I thought this time too...as I went to the bathroom about 25 times until 2am. I will speak to him about rectal meds when I'm in there. He's never mentioned them to me...maybe as my whole colon is affected? i don't know.
I was on pred in Dec last year until feb. I don't want to do it again...I'll have to wait to talk to him. i guess we'll see.
I think he took biopsies. Last time he took 5...this time I'm not so sure. I talk to him Aug 25 for follow up.
 
I'm just scared the next drugs are going to be way worse. I am not prefect...but don't feel i want to be on any biological drugs that increase risks for other things like TB or cancer. Scares the crap out of me. I'm only 28....
Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


quincy
Elite Member


Date Joined May 2003
Total Posts : 30366
   Posted 8/12/2009 1:07 AM (GMT -6)   
Hi Chuck....I've never used the picosalex...I do the gallon prep and prefer it.

The rectal meds are to treat the lower part of the colon..not meant to treat the whole colon...that's what the oral meds are for. I'm talking 5-ASA like the Pentasa/Asacol..etc.

If the rectum isn't being dealt with, it can keep what's above it in a not so good state regardless of the meds...basically, the butt RULES!!!

The rectal med I'd suggest is the Rowasa if you're in the US...if you're in Canada, Salofalk or Pentasa enemas. I don't know if the Pentasa is available in rectal form in the US, however.


So, if your doc says the rectal med won't work because you have pancolitis..it's a lie...because treating from both ends, no matter the extent, is really a first-line treatment.

You shouldn't have to go on pred if you don't want to....the oral/rectal route takes patience and consistency in using them.

I've used them for 20 years and relieved my doc isn't pred happy.

q
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x 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....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ 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 !!!
 


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 8/12/2009 6:18 AM (GMT -6)   

Thanks Heather.  I am going to make  some notes to ask him when I go in next. I will definetely get his take on this.

I appreciate your feedback. Yesterday was a pretty lousy day, so it's nice to vent a bit.


Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/12/2009 10:54 AM (GMT -6)   
I started struggling with this when I was about your age, and I wouldn't wish all those years of active disease on anyone! Or of prednisone use, on again, off again...and rectal meds will not reach all of your disease if you have pancolitis.

The biologics are a great advance in treatment, try not to worry about the worst thing that can happen. I am grateful there is a better treatment now and wish it was available when I was younger.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


quincy
Elite Member


Date Joined May 2003
Total Posts : 30366
   Posted 8/12/2009 11:11 AM (GMT -6)   
Hi Chuck...you're welcome.

I must also add that many of us use probiotics as well as fibre supplements to help keep the flora of the colon balanced as well as to regain a more even rhythm and bulk the stool.

Dicyclomine (an antispasmodic) helps me with the spasming and discomfort too.

quincy
*Heather* Status: ...Asacol 3 twice daily; Salofalk enemas every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x 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....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ 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 !!!
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 8/12/2009 12:29 PM (GMT -6)   
What probiotics are you taking? What dose of fish oil? And what's your diet like?

Diagnosed with ulcerative colitis spring 1999. Have been in remission for years with only a few minor blips. Scope on 6/22 showed no inflammation at all.
 
Maintenance dose sulfasalazine. Probiotics, vitamin D, fiber supplement and fish oil caps. George's aloe vera juice and l-glutamine for gut healing. Mostly grain-free and dairy-free low carb diet.
 
 


LeafsFan
Regular Member


Date Joined Dec 2008
Total Posts : 274
   Posted 8/12/2009 2:21 PM (GMT -6)   
princesa said...
What probiotics are you taking? What dose of fish oil? And what's your diet like?


I take UDO's probiotics, I take 2-3 extra strength fish oils per day (can't remember exact dose, but they are the stronger ones I believe).

My diet for the most part is fish, chicken, rice, rice pasta w/ sauce, eggs, fruit, some veggies, yogurt. I keep wheat to a minimum, but do consume some.(I do cheat on occasion, maybe a slice of pizza here, or potatoe chips there...not perfect, but that's my overall diet.)

I have a really hard time keeping weight on with this diet. I used to work out alot more, so I'm used to high carbs, pasta's, potatoes, meats. This is a big change for me. I'm really worried that if this doesnt help me, I'm running out of options.  I'm definetely a bit nervous for my next appointment with the GI. It's Aug 25 ... didn't sound like my colonoscopy was too promising.


Chuck - 28 yrs and counting
 
Diagnosed w/ UC Dec 08 - pancolitis
 -----------------------------------
Pentasa 500mg 2pills-4x daily
Prednisone 50mg Calicium + Vit D
Multivitamin, vitamin C, probiotics, fish oil
 
"If you can solve your problem, then what is the need of worrying? If you cannot solve it, then what is the use of worrying?"

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