Pseudopolyposis in ascending colon-what to do?

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weirdal1968
Regular Member


Date Joined Feb 2012
Total Posts : 59
   Posted 2/29/2012 7:23 PM (GMT -6)   
Back in Jan I had a colonoscopy. I've been on 30mg for over six months but I thought my UC was under control since I usually have one solid BM/day. Wrong! Doc found my ascending colon was littered with pseudopolyps including a circumferential lesion. He took lots of biopsies and they all came back negative. His advice was to get a j-pouch.

Not so fast I thought.

I've had UC since 1986 and never been off Pred/Asacol but I've been functional aside from flares roughly every two years. Been avoiding surgery because I never had much confidence in the docs in case the surgery had serious complications. Started FMT in January and I just finished another two enema treatments.

According to the surgeon I saw, pseudopolyps do sometimes go away on their own but I'm not sure that is believed by everyone. According to what I've read, PPs are caused by inflammation. Therefore if the FMT works, the root cause of the inflammation should disappear and the lesions will eventually heal. Or am I dreaming?

In the meantime I've cut *way* back on coffee since I like the acidic stuff which probably isn't good for my gut. Also taking aloe vera AMP, 20+oz of low sodium V8 juice/day, honey, L-glutamine, digestive enzmyes and Vit D.

Any suggestions for getting the gut healed quickly? Thanks in advance!

Post Edited (weirdal1968) : 2/29/2012 5:27:11 PM (GMT-7)


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 4533
   Posted 3/1/2012 12:57 AM (GMT -6)   
It sure sounds like that doctor is an alarmist-- if the biopsies came back negative. What are his recommendations for follow-up? I'm wondering why your gastro hasn't changed your meds, though, if you've been flaring every couple of yrs since 1986. That could be the heart of your problem-- because medication of UC offers more possibilities since the latter half of 1990s than just Asacol & Pred. Good luck with the supplements; probably some fiber would be good, too, depending on what you can tolerate. But why the 20 oz. daily of V8 juice-- that is acidic stuff. Drink less of that & more plain water daily! / Old Hat (31 yrs with left-sided UC; presently in remission taking brandname Colazal)

Post Edited (Old Hat) : 2/29/2012 11:00:43 PM (GMT-7)


quincy
Elite Member


Date Joined May 2003
Total Posts : 25695
   Posted 3/1/2012 2:27 AM (GMT -6)   
Hi...I would suggest you get a copy of the pathology report from the biopsies.

How was the rest of your colon...from rectum up to the ascending?

The pps are a sign of inflammation, either continuing or in the past (meaning a result of I would think).

I don't know if the FT would have an effect on the pps, but maybe it be worth for you to have another c-scope within the year just to make sure?

The only thing that would have me on edge would be the circumferential lesion...

Definitely do LOTS of research on it.

a formed stool to me would state not more than mild inflammation or none in the colon/rectum.

q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Airomir (asthma);Effexor XR 37.5 (depression)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care+Primadophilus Reuteri capsules @ bedtime)
~Metamucil capsules 6 twice daily with meals; Vitamin D 4500 IU
~URSO for PBC(or PSC?) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS" worth it !!!

Conquer UC
Veteran Member


Date Joined Jan 2012
Total Posts : 1165
   Posted 3/1/2012 7:46 AM (GMT -6)   
This is weird (no pun intended) that two posts in the same day (the other by viking99) mention a lack of symptoms however inflammatory pseudopolyps on colonoscopy? And both GIs recommending J pouch!

Wow...i really am speechless.

Just one question: have you been taking 5-ASAs this entire period (since diagnosis)?


Sending positive thoughts your way
24 yo female
UC pancolitis dx April 2011 ~1 month after birth of my first child. Went into remission after a course of prednisone (hated the s/e esp psychological ones!) .
Maintenance: mesalazine 3g/d. Sacc Bouldarii, Manuka honey, Benefibre. M/v as needed. Low FODMAPS GF, no red meat, no nuts, eggs maximum 6/week.
Coming out of a proctitis flare which started in Jan’12.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5402
   Posted 3/1/2012 9:34 AM (GMT -6)   
I would be more frightened of your long term prednisone use than of surgery! I've never heard of anyone being on that drug for over 20 years.

Sue
Moderator, Ostomy Forum

Ulcerative Colitis- 1987-2001
2001- opted for j-pouch surgery

weirdal1968
Regular Member


Date Joined Feb 2012
Total Posts : 59
   Posted 3/1/2012 2:15 PM (GMT -6)   
Conquer UC said...
Just one question: have you been taking 5-ASAs this entire period (since diagnosis)?


Was on Sulfa from 86-97 or so then switched to Asacol due to weird bloodwork. Never have been off 5ASA or Prednisone. Also on Hydrocort since roughly 1998 or so.

Didn't see the other post when I searched. Weird indeed! O.o

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6844
   Posted 3/1/2012 2:23 PM (GMT -6)   
Wow. That's just crazycakes you've been on pred for that long. How high of a dose?
Symptomatic remission as of May 2009
Colonoscopy in Oct. 2011 showed no inflammation
Symptoms began in Nov. 2008, about 4 weeks after birth of first child
Diagnosed with pancolitis in Jan. 2009
Apriso (Four 0.375 g pills once daily), Mesalamine enema twice weekly, multivitamin, vitamin D, probiotic
Used prednisone (starting dose 40 mg) to gain remission, tapered off easily

weirdal1968
Regular Member


Date Joined Feb 2012
Total Posts : 59
   Posted 3/1/2012 2:47 PM (GMT -6)   
Sometimes as low as 5mg with flare spikes to 40. Back in the late 80s I used to be on 60mg for months but that was before alternate meds.

As for the V8, its because I'm not very good at eating my veggies. After a big glass my energy levels will usually climb out of the basement. Helps with my Shingles PHN pain as well.

quincy- the rest of my colon had a few scattered PPs but nothing I haven't seen before. My rectum was in great shape and the surgeon thought it was good enough to stay.

The next time I see my GI doc, I'll bring a list of "modern" meds and see if he's willing to play. Don't even have an appointment scheduled so it will probably be 6mos or more.

Conquer UC
Veteran Member


Date Joined Jan 2012
Total Posts : 1165
   Posted 3/1/2012 8:37 PM (GMT -6)   
Weirdall this is the post i was talking about
http://www.healingwell.com/community/default.aspx?f=38&m=2356303
24 yo female
UC pancolitis dx April 2011 ~1 month after birth of my first child. Went into remission after a course of prednisone (hated the s/e esp psychological ones!) .
Maintenance: mesalazine 3g/d. Sacc Bouldarii, Manuka honey, Benefibre. M/v as needed. Low FODMAPS GF, no red meat, no nuts, eggs maximum 6/week.
Coming out of a proctitis flare which started in Jan’12.

Conquer UC
Veteran Member


Date Joined Jan 2012
Total Posts : 1165
   Posted 3/1/2012 8:39 PM (GMT -6)   
P.S the only thing i can think of why, despite being on 5ASAs, you developed pseudopolyps is that the 5ASAs alone were not controlling your inflammation sufficiently hence why you needed the prednisone on a regular basis.

Have you tried anti-inflammatory supplements such as turmeric or boswellia serrata?
Im currently on turmeric and i find it helps greatly.
24 yo female
UC pancolitis dx April 2011 ~1 month after birth of my first child. Went into remission after a course of prednisone (hated the s/e esp psychological ones!) .
Maintenance: mesalazine 3g/d. Sacc Bouldarii, Manuka honey, Benefibre. M/v as needed. Low FODMAPS GF, no red meat, no nuts, eggs maximum 6/week.
Coming out of a proctitis flare which started in Jan’12.

weirdal1968
Regular Member


Date Joined Feb 2012
Total Posts : 59
   Posted 9/4/2012 11:24 PM (GMT -6)   
I've since performed a DIY fecal transplant and my Prednisone was down to 10mg before something fell apart. That something was Omeprazole. Its effects were masked by the Prednisone but not completely. When I tapered off the Prednisone the effects of the Omeprazole hit me like a truck and I was nauseated, lightheaded and unable to function. Once I quit the Omeprazole I felt better but it has only been one day off it.

According to the research I've done tonight, pseudopolyps are the result of long term inflammation and healing cycles that due to various factors screw up the tissue so that it no longer has proper cell structure. Usually the pseudopolyps are benign but due to their damage it makes the search for precancerous polyps far more difficult. When precancerous polyps form in normal colonic tissue they are relatively easy to spot (not sure about this last part) because of how they balloon the tissue outward. When they form in pseudopolyp-riddled tissue they flatten out and become very difficult to see.

The bad news is that the massive pseudopolyposis in my ascending colon is almost certainly permanent. I have a feeling the Omeprazole caused this mess but I can't prove it. This leaves me with a serious risk of missing a cancerous polyp or surgery. If I can drop my Prednisone and Asacol completely (assuming the damage hasn't progressed even further) I might be able to find a surgeon who will resect the damaged tissue and leave the rest of the intestine. I may have to settle for a colectomy in the long run.

Post Edited (weirdal1968) : 9/4/2012 10:36:29 PM (GMT-6)


SS0000
Veteran Member


Date Joined Feb 2012
Total Posts : 670
   Posted 9/4/2012 11:37 PM (GMT -6)   
Look into LDN and goodluck

AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 188
   Posted 9/5/2012 1:52 AM (GMT -6)   
I too have a ton of p pylops like bunches of grapes they are the result of previous severe inflamation,(I was on PENTASA at the tme so being on ant- inflamatories obviously does not protect against developing pylops.
My GI does not seem to corncerned about them I had a scope in July I'm in remmission,so there is no talk of surgery I don't think having pylops makes it a MUST HAVE surgery situation you just have to been aware of the risk like you say of missing pre-cancerous pylops.
I'm not aware of any SAT'S for this but my GI says the chance of developing colon cancer is is not much greater than average just because you have UC.
PS I also read an article today,about new research that has proved drinking 4/5 cups of coffee a day actually protects against colon cancer!

AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 188
   Posted 9/5/2012 2:15 AM (GMT -6)   
Also I don,t think the Omeprazole caused the pylop situation although I agree with you its horrible stuff I had to take it for a while but it was along time after the severe flare that caused the pylops.My GI also told me most surgeons don't consider re-sections on UC patients.
41yrs old,mum of 3,servere left-sided UC since 2006,
Tried most things alternative,scd diet,low residue,etc
Had,ascol,pentasa,rectalmeds,prednisolne,IVsteriods,Cyclosporin
currently taking Imuran 100mgs daily,movicol 1 satchet daily
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