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Pan-Colitis, now what..........?

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Ulcerative Colitis
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Posted 7/4/2008 5:40 PM (GMT 0)
Yesterday I had my first visit at the doc's since my colonoscopy.  He informed me that he could only get thru to the top of the tran's colon during the scope......because I was way to swollen at the time.  He took many samples for testing to make sure no cancer was anywhere(good thing nothing shows).  He also told me that he is calling my colitis PAN-COLITIS since everything he saw was so involved he could only assume that the rest was too.  He is now lowering my Prednisone from 20mg.  to 15mg. for the next 2 weeks and then to 10mg, then 5mg.  What happens after you are taken off med's?  Is there anything you can do to assist yourself in not flaming up again?  or is it just a hit and miss game?  I am just going to drive myself nuts thinking what if I do something wrong and flare again.  Also, what is the precentage of people with Pan-Colitis? 
Posted 7/5/2008 1:14 AM (GMT 0)
Hi,
I too have been privileged to have pancolitis ever since I was diagnosed almost 5 years ago. It's good that your doctor is reducing your Prednisone dose, it's so you don't get stuck on it. I have been on it for a year and a half because it's the only thing that even sort of controls my symptoms. What other meds are you on besides Pred? Once the Pred gets your symptoms under control, they usually tray to maintain remission with other drugs. Some people can reduce flares by watching their diet and figuring out what foods make their symptoms worse...(I haven't really ever noticed much with this...either my disease is active, or it's REALLY active) I think I remember reading 15-20% of UC patients have pancolitis, but I'm not positive. It doesn't sound like you've had UC for that long...and (I know it's easier said than done) try not to worry too much, because that can make things worse for some people. Hope you continue to feel better.
-Pat
Posted 7/5/2008 3:33 AM (GMT 0)
I'm surprised he is lowering your Prednisone with your inflammation that bad right now. Has he added any new meds to the mix? Bless your heart - I hope you feel better soon.
Posted 7/5/2008 3:44 AM (GMT 0)
If he's taking you off the Pred, what will your medication regimen be? You definitely need to be on medication. Usually they start a maintenance medication such as Asacol, Lialda or Colazal, then wait until the flare is under control and gradually taper the Prednisone. Tapering off of it while you're still in flare will undoubtedly make your symptoms worse.

I hope you have a follow-up appointment set up soon. You need to talk about what treatment plan he is proposing, and why he is recommending that particular course. If he doesn't have a plan, I'd suggest you get a second opinion very soon.

In the meantime, review the UC Resources thread on this page. There is a lot of good general information to be found there, to educate yourself about UC.
Posted 7/5/2008 2:55 PM (GMT 0)
I have PanColitis and am only on 3 400mg Asacol per day. My second scope is in 5 days.. from there we will see if it has gotten any worse since my first scope in 2004. Then, she will re-adjust my meds. I have only had one flare since my first in 2004 so that's not too bad ... so far. To many questions.... all is not lost.. keep a positive attitude !!
Posted 7/5/2008 4:21 PM (GMT 0)
Thanks so much for all the good support.

My doc is lowering the prednisone so I hopefully don't have to be stuck on it for to long. As for a med regimen, I am not sure right now. I am allergic to the 5-ASA's so we will be talking about what is best for that. I have noticed now that since I have started to lower the Pred. 3 days ago. I can feel things changing(not sure tho'). I have a log that I keep all my notes in so I don't get confused when I see the doc. My next appointment is on the 14th of august. If things change tho' I will be calling.
Judy, Thanks, I will go check out the threads and start reading.
Posted 7/6/2008 4:48 PM (GMT 0)
I have had pancolitis for at least 15 of my 32 years with UC. My symptoms are so mild I am not even on any meds. (althought my GI says I should be on SOMETHING. It sounds like just for the principle of it. But I can't afford it) I have once in a while urgency after a way too big restaurant meal, some barely discernable mild cramping I can barely feel if I stop everything I am doing and concentrate on it, otherwise I don't notice anything. I also have once-in-a-blue-moon small streaks of blood.

The above is my usual state. occasionally things get a little worse but not often.
Posted 7/6/2008 5:40 PM (GMT 0)
Pancolitis doesn't describe the severity of the condition, only the location. Severe proctitis can be much more debilitating and harder to control than mild pancolitis. A minority of people will have one flare in their lives and never be bothered with the disease again. Most will take medication and have only occasional problems. Another minority will have continued problems no matter what treatment they use, and many of these will eventually have surgery.

Because UC is a disease of flare and remission, it is very difficult to tell from anecdotal information what helps. The only reliable way to predict what will help someone is from data gained by treating thousands of people over time. That said, many people swear by one or another unproven treatment. I say if it you think something helps you, keep doing it. Just don't assume it will automatically help others. And if you hear that an approach has helped one or two or five people, don't assume it will help anyone else.

We just have to inform ourselves, weigh risks and benefits and make our own choices. Generally, though, it's a good idea to stay away from products or practitioners who claim to cure IBD without surgery.
Posted 7/6/2008 10:47 PM (GMT 0)
Pan-colitis here too, for almost 8 years now, and there are other options out there.

Hate to say, but if you are in such a bad flair, I wouldn't be suprised if he puts you back up on the Pred. As much as it sucks with the side effects (mine were so bad, that no matter WHAT, I refuse to go back on it!) it does help in the long run...
Posted 7/7/2008 3:07 AM (GMT 0)

Judilyn said...
Pancolitis doesn't describe the severity of the condition, only the location. Severe proctitis can be much more debilitating and harder to control than mild pancolitis. A minority of people will have one flare in their lives and never be bothered with the disease again. Most will take medication and have only occasional problems. Another minority will have continued problems no matter what treatment they use, and many of these will eventually have surgery.

Because UC is a disease of flare and remission, it is very difficult to tell from anecdotal information what helps. The only reliable way to predict what will help someone is from data gained by treating thousands of people over time. That said, many people swear by one or another unproven treatment. I say if it you think something helps you, keep doing it. Just don't assume it will automatically help others. And if you hear that an approach has helped one or two or five people, don't assume it will help anyone else.

We just have to inform ourselves, weigh risks and benefits and make our own choices. Generally, though, it's a good idea to stay away from products or practitioners who claim to cure IBD without surgery.

+1
Posted 7/7/2008 1:24 PM (GMT 0)
My doctors have always called what I have "extensive colitis" rather than pancolitis. It extends into my ascending colon. It seems like the rule of thumb is 20% of people with uc have "pancolitis."
Posted 8/15/2008 3:36 PM (GMT 0)
I just had my first colonoscopy yesterday, and the dr said I have pancolitis, with more left-sided disease. She didn't explain anything more than that, so I've been doing my own research. From what I can tell, I think I have a pretty mild form of UC. It started exactly 2 months ago with diarreah with bright red blood. Blood tests by my family dr came back fine. Since then, I've had softer stools, but pretty formed (though still with some blood), and I only go once a day. There are some days I don't go at all. I have no pain, have an appetite, haven't lost any weight, don't have a fever. I read something about pancolitis being a very severe form of UC, but that doesn't seem to fit with my symptoms.....yet that's what the GI specialist said I have. I'm very confused. Is it possible to have pancolitis, yet have a mild form of it??? HELP!!!!!

Posted 8/15/2008 4:00 PM (GMT 0)
I have mild pan-colitis; I would hate to have severe pan-colitis, b/c two flareups ago it was horrid.

See Judy's post above, you can have mild pan-colitis, it just mean it affects your whole colon rather than a smaller portion of it. Lucky us!

what meds are you on?
Posted 8/15/2008 4:27 PM (GMT 0)

Ahhhh......well, that makes sense. I wish the dr had explained things better! She really had NO bedside manner at all. Just because she does 30 colonoscopies a  day doesn't mean the patients know what's going on!

Anyway, I just picked up the meds last night, but I'm going camping this weekend, so I'm actually going to start taking the meds on Monday (I'm assuming an extra two days isn't going to hurt). The meds are Salofalk - 500 mgs 4x per day (2 pills at a time), for 1 month, as well as Salofalk - suppository 1 capsule 3x per day for 1 month. Apparently Salofalk is a 5-Aminosalicylic acid. That's all I have at this point. Hopefully it'll work!

Thanks for the info!

Posted 8/15/2008 5:11 PM (GMT 0)
Yes, as mentioned pancolitis just states that your whole colon is involved but it can be mild... I have pancolitis and at one point it was severe, one point it was mild. It also doesn't mean that your whole colon will ALWAYS be inflamed if one part is... My scope last week showed that I have moderate/severe inflammation but only up to the sigmoid colon right now. I still am considered to have pancolitis I guess, it's just not completely active at the moment.
Posted 9/5/2008 2:47 PM (GMT 0)

So, I was on Salofalk for just over a week (out of four weeks), and had to stop because I had horrible side effects - diarrheah, nausea, joint pain/stiffness, headaches....PLUS I got a urinary infection!! confused   So, a dr (not my dr - a dr at a walk-in clinic) told me to go off the Salofalk for a week, put me on other antibiotics for the urinary infection, and within a day, ALL my symptoms were gone - which confirmed that it really was the side effects and not something else. So now the good news.....went to my own dr earlier this week, and explained everything to him. He also had the lab results from my colonoscopy/gastroscopy (biopsies were taken during the procedures). As it turns out, I DON'T have pancolitis at all - or even UC for that matter. Looks like just the sigmoid part of my colon is slightly inflamed, but they don't know what caused it. It's not chronic, and they don't think it will come back again. So, it looks like it's just a one-time thing. Not sure why the so-called "specialist" who did my procedure said it was pancolitis - maybe she's new to the whole thing. But, the rest of my colon and stomach are completely clear, so now I just have to take the Salofalk again for two more weeks (lower dosage as per my dr.....still not great with the side effects, but seem to be better than before). I go to see the specialist again in 2 weeks, so hopefully I'll be in the clear then! All my colitis symptoms seem to be gone (normal bm's for the first time in 2 months, no pain, etc...), so I'm starting to see a light at the end of the tunnel.

Thank you all for your advice!   :-)

Posted 2/18/2009 6:03 AM (GMT 0)
I am 18 years old, and I was diagnosed with pan-ulcerative colitis a year and a half ago. It began as a mild condition, I responded immediately to only five days of a low dose of prednisone. I took Lialda for several months before my colon stopped responding so desirably. For the last seven or eight months I was taking twelve pills of Asacol every day, though I am unsure of the exact dosage, and about three months ago, my colon stopped responding to this maintenance medication as well. I have flare-ups every few weeks, often without any explanation. I have stopped drinking coffee, I avoid aspartame, citric acid, ibuprofen, raw leafy vegetables, etc. I have been on and off prednisone six or seven times, and in the last few months, I have had tremendous flareups, and I have developed a steroid dependency. Every time I taper my dose of prednisone to 35 milliigrams, I experience a violent flare up with painful cramping, and between 10 and 15 bowel movements (diarrhea) per day. I am currently taking Asacol and Imuran, though the Imuran needs to saturate in my system for another two months before it becomes effective. I am currently on 40 milligrams of prednisone per day, I have early symptoms of glaucoma, I've been gaining weight, and I am experience terrible gas and cramping all the while on the anti-inflammatory steroid. My GI and I know that my condition is worsening, surgery is, though however distant, on the table. I would like to know if anyone has recommendations for the gas and constipation. I have five bowel movements a day, I am afraid to go out in public because I always need to find a restroom, if only just to pass gas. I am extremely uncomfortable, and I would like to know if there is anything that I personally can do, in terms of diet or exercise or yoga... anything at all. Should I take vitamins? Vitamin C or calcium pills...? I have heard about Fish Oil... I have heard dozens of rumors, but I would just like to hear another patient's opinion. Thank you,
Posted 3/18/2012 2:59 AM (GMT 0)
Hi I am a 41 yr old male who was recently diagnosed with pan colitis. What is the best diet for my condition. Right noe I live on lactose free, bland food. I live on wonder bread chicken and rice krispies. Please advise.
Posted 3/18/2012 5:02 AM (GMT 0)
Monkeyz- That's great that you don't actually have UC! Hopefully whatever you're dealing with will be short-lived.

I also have pancolitis and am currently struggling to get it under control. My disease has always been very mild in the past (for 17 years) only affecting the bottom twelve inches, but suddenly last year it got out of control and spread everywhere, so now this is a WHOLE different ball game than I'm used to playing, and I'm having to learn a new set of rules.
Posted 7/28/2013 5:54 PM (GMT 0)
Hello I just found this forum while trying to find the difference between Ulcerative Colitis (I was Diagnosed about 30 years ago) and Pan colitis which I am now told I have.

I am amazed to hear the meds regime others are on but I do have one or two other irritating ailments including diabetes and hypertension etc. I have been taking Asacol for years and for the last couple of years steroids as well. The big problem with steroids is that they push the blood sugars up (I spent several weeks hovering in the 30s) so steroids are not a good option.

I was recently discovered that I am one of the one in five that is intolerant to Azathioprine. Lovely experience that was. I felt so ill!

Just about to start on 6mp I hear a sub set of the one in five can tolerate it and the rest get as ill as they do on Azathioprine.  

So. I will watch the forum and hope to give and get good information / support.

See you all soon.

Regards Nick

Posted 7/28/2013 6:01 PM (GMT 0)
pancolitis means your entire colon.

You can have ulcerative pancolitis...or Crohn's pancolitis.
Your doctor didn't say which one?

Do you have copies of your c-scope biopsies results? usually the results will be consistent with UC or CD...of course, there are other types of colitis such as microscopic or bacterial etc.

Since you've been taking asacol for years, I'm assuming you know whether you have UC or CD?

q
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