Did Have Sigmoiditis,C-Scope Today Reveals Pancolitis!

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 2/29/2008 12:50 PM (GMT -6)   
Well,after having my first C-Scope in ten years today,I've discovered I now have moderate to severe Pancolitis!The first two years of my dx were Procto-Sigmoiditis.Now I'm wondering how many of the ten years hiatus from a C-Scope did I actually have Pancolitis?

And all this time I thought I "just" had distal disease.I'm just intrigued to know,how many of you here have gone from distal disease to Pancolitis?Are things any harder to control,am I now facing surgery at some point?

I'm not really surprised it's spread,the last few years have been much harder to control,but it's a bit of a shock to see it's all the way round the Colon.Now I'm back on Pred and trying Pentasa tablets,as Asacol was making me feel sick.

Any views and comments are welcome,I'm a little numb at the moment!

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 2/29/2008 2:04 PM (GMT -6)   
How did ten years pass without a scope? A drastic change isn't surprising in that amount of time.
Diagnosed with ulcerative colitis spring 1999.
 
Therapeutic dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal. Oregano oil antibiotic, antiviral, antifungal.
 
 


Picton
New Member


Date Joined Jan 2008
Total Posts : 18
   Posted 2/29/2008 2:15 PM (GMT -6)   
Similar situation here. proctitis (and colonoscopy) when I was about 20, remission (or so I believed) for a good fifteen years following, then symptoms, another colonoscopy, pan-uc.

Good news is that the current flare responded very well to meds and I'm now back to normal, more or less.

My understanding is that the extent of the disease doesn't necessarily correspond to severity. Thus one can have mild pan-uc vs. severe proctitis, with the former actually being easier to control.
Moderate PanUC, diagnosed 12/07. Doing well.
Asacol 4 x 3, Colocort as needed, probiotics, fish oil, vitamins.


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 2/29/2008 2:32 PM (GMT -6)   
Hi Silent,

sorry to hear that, I have the fear that may be true for me. I am going for a colonoscopy in April and my last flare was different from my first flare, my first flare was mostly blood but my last one was a lot more D, cramping and bm's, but not as much blood.
Beth, 32
Major Flare Sept/Oct 07 ~ no blood since Dec 07 ~ almost normal bm
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, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd Sept 2007
Prednisone 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fursomide 20mg 1xday.  Potassium 100mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 2/29/2008 4:12 PM (GMT -6)   
Picton,I understand your logic,but it's not mild Pancolitis,it's moderate to severe.My Sigmoiditis was mild to moderate.I now have greater inflammation and throughout the entire bowel.

I also didn't have the increased risk of cancer with distal disease,with Pancolitis it's another threat I now have to consider.

It's gotten harder to control flares the last few years,which I attribute to undiagnosed Pan UC.

Princesa,to answer your question,I didn't pursue GI visits.I was meant to have a C-Scope 2 years ago,but they forgot and never sent an appointment.Basically,I just kept going back to my GP and getting steroids.A couple of letters were sent to my Consultants,but must have been lost in admin.I got so fearful of the procedure,I was quite happy to leave things that way.I have to say that was a big mistake on my part and I won't be so foolish again.Todays C-Scope was a breeze and nowhere near as bad as I remember the last.

I also realise that I may have been putting myself of Cancer the last few years,as a C-Scope would catch it early.I'm going to make sure I'm examined regularly now,if just for that reason alone.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 2/29/2008 5:55 PM (GMT -6)   
I'm astounded that your GP would keep giving you steroids for ten years, as the sole treatment and with no follow-up. You probably need to be checked out for steroid side effects - bone density, vision and so on. Steroids alleviate the symptoms, but don't do anything to improve the underlying disease. And they're not recommended for long-term use.

Keep up with your care and meds, and check out with your doctors about the bone density.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 2/29/2008 6:26 PM (GMT -6)   
Judilyn,I probably made my doc look bad by omission.I was followed up with flex sigs in the earlier days,then was on Azathioprine a couple of times.I've taken a fare few steroids over the years,but not constantly for the whole ten.Admittedly the GI should have been chased up the last few years and I don't think I've even had a flex sig for 8 or 9 years.

However,I'm as much to blame for not pursuing things.As for the bone density thing,I had it checked about three years ago and it was fine.I've been given calcium/vit d combo supplements with this course of Pred.

I also need to be more compliant with meds.Because I thought it was still distal and Asacol was making me feel sick,I stopped taking it.Now I know I have a lot of Colon that needs oral meds,I'll definitely be more vigilant about taking them.Hopefully the Pentasa won't have the adverse effects of the Asacol.If so,I'll have to try Colazol(Colazide here in the UK).

Thanks for everyone's input.I do still wonder how concerned I should now be about Colon Cancer?

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 2/29/2008 8:07 PM (GMT -6)   
Silent Lucidity-- you have to get on the right course of meds & hopefully achieve remission before too long. Then a gastroenterologist familiar with IBD should figure out what meds you need to take to maintain remission. The latest medical thinking RE colorectal cancer is that taking mesalamine reduces the risk of developing it. You can read a post about that on ccfa.org --- look for headlines listed toward bottom of main page. Take good care of yourself; very few IBD patients can go without meds for long periods of time. My gastro warned me early on that I risked getting inflammation in the transverse colon if I failed to medicate the left side, advice I did take seriously. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 2/29/2008 8:30 PM (GMT -6)   
Old Hat,that's sound advice.It's nearly 13 years since my original dx and despite all that time,it's taken this to "wake me up".I don't think I ever truly treated it seriously,especially regarding maintenance.I went through lots of periods without meds,thinking "it's distal,they don't work,I'll just use steroids and enemas if I flare".

Well,now I really do have to take maintenance seriously.The possibility my blase attitude got me here is possible,but what's done is done I guess.

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5182
   Posted 2/29/2008 8:48 PM (GMT -6)   
Right-- you're older & wiser so you have to get with adequate treatment & move forward. As members often write to this Website, it does no good to dwell on or bemoan the past. It just wastes our time & energy that we need to focus on the present! / Old Hat

Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 3/1/2008 5:16 AM (GMT -6)   
Trust me Old Hat,I've really learned my lesson this time.The procedure went so smoothly this time,that when the Gastro said he was all the way to the end,I couldn't believe it!Then he said,so's the inflammation and it was like being struck by lightning!

I've always had a weird phobia towards Azathioprine,but have done well on it in the past,so I'm going to speak to my GI about it at follow up in six weeks time.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30601
   Posted 3/1/2008 11:40 AM (GMT -6)   
Hi SL....it's good you finally made the decision to follow though with the c-scopes. I always remind my doc that the time is near for my next one (every 3 years).


Were you never on any other 5ASA meds? What has your doc given you at this time?

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/1/2008 11:49 AM (GMT -6)   
Sorry to hear of the advancement of your disease. Regarding colon cancer - while we do have a higher risk of getting colon cancer, the percentages aren't that high really. I can't remember the exact percentages. But as long as you take your meds, do your scopes then even if in the event you were to get cancer, at least it can be caught early. But no need to fret over it - just file it away in the gray matter as a rare possibility, not a probability.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~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
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 3/1/2008 3:35 PM (GMT -6)   
Quincy,I will establish how often I should C-Scope with my GI at follow up..........and stick to it!I had been on Asacol since dx in 1995,I've now been on Pentasa for two days.I don't want to speak too soon,but so far I haven't been nauseous and I'm feeling much better than the Pred and Asacol combo taken in the past(back on 40mg Pred for a week,start of tapered dose).I'm now hoping that a change of 5-ASA will be the break I need and maybe avoid the return to Azathioprine,but we'll see.Sometimes we get a good day or two,only for disappointment to follow,I'm sure most here have had that experience.

Red,you're right,I looked up the percentages after posting;2 percent at 10 years,8 percent at 20 years and 18 percent at 30 years.Truth is,I guess subconsciously I'm always looking for a reason/excuse/motivation(call it what you will)to get an elective Ileostomy.I'm well aware that such a procedure would bring it's own set of challenges.but still often think it's the "answer".

Good reason tells me that lack of compliance with med taking is the problem(that's me y'all!).Semi reason tells me it's a combo of the former,plus advancement of disease,due to years involved.Bad reason tells me it ain't my fault,didn't ask for it,but got it!

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 3/1/2008 4:43 PM (GMT -6)   
SL, I suspect all of us understand your trying to forget about this DD and ignore it. I might well have done that also, had my symptoms allowed. Now you're on the right track and I hope things keep going well for you. The whole colon cancer thing is a concern, but not a major one for most of us. My risk is raised much more by having a mother who died from colon cancer than by having UC. Lucky me, I have scopes every two years.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 
Co-Moderator UC Forum


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 3/1/2008 6:11 PM (GMT -6)   
Judy,I'm so sorry about your mom,I really wouldn't condescend to have empathy for that.I'm lucky to have both parents alive and dealing with me back at home(at 36!),but I realise I'm fortunate for their love and understanding,to allow me back.Right now,I think I'm on a Pred high,with a complimentary component of Pentasa.To elucidate;the Pred is making me a little "wacky",but the Pentasa is really "kicking in".

In fact,I'm really feeling better with the passing of each minute.I know this seems nutty,but I really do feel the Pentasa is "washing" over me(taken from a Pearl Jam song!).

Sorry if I seem to ramble,but the pred is spacing me out a little and the Pentasa really seems to be making a difference,after only two short days!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30601
   Posted 3/1/2008 6:20 PM (GMT -6)   
SL..you should also be using rectal meds. Please remember that the excuse that some docs and others have sometimes stated (doesn't go high enough to treat the whole colon) shouldn't be accepted. They're not used to treat the whole colon (that's why the use of both oral and rectal meds to cover both ends), and since UC starts at the rectum, it will always be inflamed (sometimes even more) if the whole colon is involved.

Ask your doc for both oral and rectal treatment (if you can tolerate the Rowasa..good thing to use)..you can taper the enemas to a maintenance dosage and hopefully that will work for a long while for you.

You'll eventually be able to treat flares earlier and earlier....and with the coverage of an oral 5ASA and using the rectal meds to treat flares (increase and taper process)...it just may be a good insurance to help wonky cells from increasing (as in colon cancer).

Many of us don't know if we'll get colon cancer, but the fact that we're tested regularly is a huge plus. I strongly believe that keeping the colon quiet for long periods of time helps lower the risk of it as well as use of the 5ASA meds.

Try not to worry too much about some of the things you don't have control over. I know your new diagnosis is a lot to take in (I felt the same way when I was diagnosed with Primary Sclerosing Cholangitis which now increases the risk of colon AND liver cancer..oh joy!), but eventually learning what works for you and maintaining that regimen goes a long way in how you'll feel emotionally as well as physically.

Happy to hear you've had a good few days.

quincy


*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

Post Edited (quincy) : 3/1/2008 5:23:51 PM (GMT-7)


Silent Lucidity
Veteran Member


Date Joined Nov 2007
Total Posts : 625
   Posted 3/2/2008 4:32 AM (GMT -6)   
Quincy,I've only just been thinking about using a steroid enema again.I fully agree with you about the benefits.Now I have full Colon involvement I'm going to have to have to get all bases covered,so to speak.I also don't agree with the excuse that rectal meds don't go high enough,there's a reason they're called RECTAL meds!

quincy
Elite Member


Date Joined May 2003
Total Posts : 30601
   Posted 3/2/2008 1:45 PM (GMT -6)   
Definitely the common sense part of it..lol!

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, June 22, 2018 6:26 PM (GMT -6)
There are a total of 2,974,401 posts in 326,173 threads.
View Active Threads


Who's Online
This forum has 161259 registered members. Please welcome our newest member, Renegade0311.
391 Guest(s), 7 Registered Member(s) are currently online.  Details
LifeCointosses, mattamx, Gretchen1, island time, The Dude Abides, joe99, straydog