Colonoscopy update - good news/bad news

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Beth75
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Date Joined Jul 2007
Total Posts : 2148
   Posted 4/4/2008 1:32 PM (GMT -6)   
had my colonoscopy this am.
 
Good news: no inflammation - YAY!
 
Bad news: scarring throughout my colon from last flare up.  Diagnosis changed from proctosigmoiditis (left sided colitis) to pancolitis.  Dr. thinks this is from my last flare up and in retrospect this was different from my first flare, this past time going to the bathroom 25+ times a day, horrible cramping and pain, in addition to the blood, mucous of the first time.
 
Also, I did have a sigmoid polyp (likely inflammatory) and I do have hemorrhoids.
 
I talked to him briefly after the procedure, got some lovely pics of my colon (wont be hanging those on my wall).
 
I meet with him to go over everything in a couple of weeks.   I am nervous about having pancolitis, I think that will change the severity of my flares from before?  Though I am not too sure, I have not researched that. 
 
Also, I am nervous about the azathioprine not working and I will likely be on 5mg of pred for another year.  Doc says that if the aza is not working I will likely flare around 15mg of pred.
 
I was so hungry on the way home I had my DH stop to pick up kentucky fried chicken.....now I feel like crap!  uuuugh, bad decision!
 
Any questions, I should ask my Doc at the next visit?
Beth, 32 ~ Major Flare Sept/Oct 07 ~ almost in remission
UC dx'd March 2000 (30 cenitmeters as of 2005-proctosigmoiditis)
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007 - partial remission since 03/08
Prednisone 25mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 10mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your protiens!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 4/4/2008 1:43 PM (GMT -6)   
I wouldn't worry too much about the change of diagnosis. Even though your symptoms can be more severe then the other forms, it doesn't mean it will. There are people that have Pan with mild symptoms and people that have UP with severe symptoms. So it all depends on your flares. But either way, if you know what to look for symptom wise, then just be more proactive in your care. And definately don't put off any scopes because now that you have Pan, it raises the notch a little on the ole colon cancer scale. Glad to hear that your inflammation is down though - that's a bonus eh?!
 @--->--SHERRY--<---@
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~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Fibromyalgia-'06~Sacroiliitis-epidural injections
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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 4/4/2008 1:49 PM (GMT -6)   
Hi Sherry - yes, I am happy to hear no inflamation and he did tell me that I will be having the c-scopes yearly now. I guess I will have to figure out how that Aflac thing works (my copay is $250), which is better than no coverage, so I can't complain too much.

one thing I have learned over the past 8 months, I will always call my Doc if I think I am begining to flare again and I will always recommend staying on their meds (as long as they are not hurting).

I just never thought it would turn into pancolitis. I did cry a bit on the way home, I am ok now. I just don't want to deal with more.......but it could always be worse!
Beth, 32 ~ Major Flare Sept/Oct 07 ~ in remission
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 25mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 10mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your protiens!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 4/4/2008 6:39 PM (GMT -6)   
Congratulations on your inflammation report! You didn't say whether polyp got removed, but if so, that's another reason to avoid KFC & other fats, spices, roughage for 7-10 days. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 4/4/2008 7:58 PM (GMT -6)   
Beth - hooray about no inflammation! With my pan-colitis, I just feel the inflammation work its way around my abdomen. New pains in new places... Still important to follow up at the first signs of a flare - but not really any different than other types. I'm sure the new dx will require some grieving - hang in there!

KFC always hurts me :( Even in pre-UC days. But there is something so tasty about those fake potatoes - hahaha.
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring :(
 
40mg pred, Asacol 12 per day,  Azathioprine 75mg, Rowasa, Canasa, Aciphex, Forvia, and Pro-Bio
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


UCinNC
Veteran Member


Date Joined May 2007
Total Posts : 528
   Posted 4/4/2008 8:03 PM (GMT -6)   
I know you are worried about the aza working, about it keeping you off pred..... I just wanted to throw in some words of encouragement and let you know that aza has worked for me, and I have pancolitis and am steroid dependent. I definitely agree with the others to try not to let the change in diagnosis upset you too much, especially because the disease could retract again the same way it appears to have spread. my understanding is that it will not necessarily affect the severity of your flares, so try to not to get to hung up with the change in diagnosis (though of course I can understand why it is upsetting). hang in there and good luck with the aza. it has been a great drug for me, especially in conjunction w/ rowasa enemas, as needed.
30/Female/NC
Pancolitis dx 3/07
9 Colazal a day (was on 12 Asacol/day, but suddenly got sick from it)
150mg Imuran/day (steroid dependent, reached this dose 9/07)
Cortfoam in AM, Rowasa in PM (is working wonders for me thus far)
Various vitamins, bit of fish oil, a probiotic.
Getting married October, 2008!!!!


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 4/4/2008 8:48 PM (GMT -6)   
thanks Old Hat, UC and Dakaota for your encouragement, I really needed it today = )

Old Hat - yes they did remove the polyp and are doing a biopsy on it, will go over that w/GI in a couple of weeks. I'm sure I will be regretting the kfc even more tomorrow. Plus I have been so good lately, my system is not used to the grease (even lost 10 of the 20 prednisone pounds).
Beth, 32 ~ Major Flare Sept/Oct 07 ~ in remission
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 25mg 1xday (taper 5mg a week from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalpril 10mg 1xday, Fursomide 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your protiens!
Pre-Diabetic from Prednisone use - Low carb/sugar diet & exercise.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 4/4/2008 10:23 PM (GMT -6)   
O.K., after polypectomy they should give you some special instructions for home care. In case they didn't, pamper yourself with plenty of rest, no strenuous housework, or long drives for ca. 7-10 days. No OTCs that could induce bleeding, of course. Best wishes! Also congrats on losing the 10 unwanted Pred lbs.-- that's absolutely terrific news you can really take pride in!!!!!!!! / Old Hat

Post Edited (Old Hat) : 4/4/2008 10:26:59 PM (GMT-6)

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