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Posted 8/11/2009 9:01 PM (GMT 0)

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
Posted 8/11/2009 9:08 PM (GMT 0)
Hi - did you still have symptoms (bleeding, urgency, mucus, diarrhea, etc.) before the 2nd colonoscopy? What was the doctor's reasoning behind it?
Posted 8/11/2009 9:12 PM (GMT 0)
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
Posted 8/11/2009 9:21 PM (GMT 0)

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....

Posted 8/12/2009 7:07 AM (GMT 0)
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
Posted 8/12/2009 12:18 PM (GMT 0)

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.

Posted 8/12/2009 4:54 PM (GMT 0)
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.
Posted 8/12/2009 5:11 PM (GMT 0)
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
Posted 8/12/2009 6:29 PM (GMT 0)
What probiotics are you taking? What dose of fish oil? And what's your diet like?

Posted 8/12/2009 8:21 PM (GMT 0)

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.

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