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Posted 9/10/2011 2:24 PM (GMT 0)

Hi everyone.  I was diagnosed with colitis when I was 20 - one flare.  Throughout the years showed ulcers/inflammation small intestine.  Few and mild flares. diagnosed with Crohn's.    8/2011 got hit with severe pancolitis.  No warnings.  Ended up in ER, sickest I've ever been.  In bed three weeks.   Had a colonoscopy three years ago - doctor said it was the best I'd had.  I quit smoking two years ago.  The doctor (off the record) and I many times talked about how my smoking was keeping everything in remission, but I decided to quit.  He (off the record) said that he thinks the pancolitis has been spreading for the past two years since I quit smoking.  

I'm in remission now.  Trying desperately to get off prednisone.  I am having every side effect there is.  I'm confused about pancolitis.  Is my intestine now irreversibly damaged?  Is it "normal" when I'm in remission and will only be ulcerated and inflammed when I have a flare?"  My doctor said that my life has now changed forever, I will need yearly colonoscopies and will be on some form of steroid the rest of my life.  I refuse to be on steroids.  They are like a poison to me.  I'm on colostrum, kefir, rooibus tea, vitamins, etc.  I'm down to 10 mg of the steroids and am not having signs of a flare.  Thank you for any info you can give.

Posted 9/10/2011 2:34 PM (GMT 0)
Why does your DR think you'll be on steroids forever? Has your adrenal gland quit in protest? Aside from the pred, are you taking any other med to keep the IBD at bay?

Inflammation should not be present if you are in remission. A flare would be when there is inflammation, and the symptoms that go along with it. Remember that a colonoscopy cannot see most of the small bowel, so while your colon might be clear, your small intestine might not be. Please talk to your DR about a medical plan that doesn't include steroids. You might consider entocort, a steroid that targets the terminal ileum and does not have systemic effects like oral prednisone, at least as a bridge to a more reasonable medicine.
Posted 9/10/2011 2:48 PM (GMT 0)
I don't know why. I saw him after the colonoscopy which diagnosed me with pancolitis two weeks ago. He made that statement, said that I was already having side effects from Prednisone but the pancolitis was so bad he didn't want me to go off for 4-6 weeks. He wants to see me at the end of September to discuss my future treatment. He mentioned Humira and other drugs in passing. I've only been on steroids three weeks today. My adrenal glad hasn't quit yet. This is why I'm confused. Is my large intestine permanently damaged and just waiting to flare thus steroids forever??

He said that he could see part of my illeum where my crohn's ulcers used to be.  Said they weren't there, that everything appeared to be contained in my large intestine this time.  I'm only on Prednisone right now.

Post Edited (stubborncarol) : 9/10/2011 8:55:43 AM (GMT-6)

Posted 9/10/2011 3:37 PM (GMT 0)
No, just because you have pancolits doesn't mean tht your colon is permanently damaged. My entire colon was affected with I was diagnosed with UC (so pancolitis) and I've been in remission for over two years now. And just because I was diagnosed with pancolitis doesn't mean that future flares will affect my entire colon.

I don't think it would make too much difference if you have CD vs UC, in terms of having to be on steroids the rest of your life.

I think it's crazy/irresponsible of your doc that you're only on pred. You should be on some sort of mesalamine as well. Were you not on any maintenance meds in the past few years?

Honestly, I'd find a new GI.
Posted 9/10/2011 3:47 PM (GMT 0)
My doctor had me on asacol when I had a Crohn's flare over 3 years ago.  Then I had a good colonoscopy.  He mentioned that Asacol must have helped, but he never told me that I needed to continually take it forever to keep it under control.  I don't take medications unless I'm sick.  I stopped when the flare stopped.  I haven't taken anything for 3 years.  Because I was symptom free I thought I didn't need meds.  I only see him for my colonoscopies every 3 years.  I've been going to him for 12+ years but now that I'm going through this I realize that he's never been very informative and hasn't directed my care very well.  He's hard to get ahold of and doesn't return my calls because he has so many patients.  You're right, it's time for a new GI.

Do you have suggestions for questions I should be asking?

Thank you.

Posted 9/10/2011 4:07 PM (GMT 0)
i have severe pancolitis as well, but my doctor said i wouldn't be on steroids forever. he said it's just to get me in remission and then he wants me off them. why would your doctor want you to be steroid dependent?? that doesn't make any sense. i started 6mp and immediately noticed positive changes. steroids have given me nothing but bad results and i can't wait to be off of mine!! i take 20 mg right now (i'm tapering against my doc's orders cuz he thinks i'm taking 35mg).
Posted 9/10/2011 4:28 PM (GMT 0)
I started at 60 mg prednisone, down to 40. I've gone from 40 to 10 this week (my blood pressure is through the roof, and I feel like my bones are screaming in pain, along with all the other effects). I know it's dangerous, but I can't take them. My doctor wants me on them another few weeks but I refuse. I did leave a message at his office that I'm tapering and asked if there was anything else to do, but I haven't heard back from him. 6mp? is that asacol or something like that? I don't know about any of the long-term medications for pancolitis. The withdrawal symptoms from prednisone are as bad as the side effects!!
Posted 9/10/2011 4:52 PM (GMT 0)
So he told you to take your steroids for 4-6 weeks. When did he tell you you'd be on them forever?

What you have right now is pancolitis. The underlying cause of that is Crohn's disease. You need to take a maintenance medication if you have Crohn's disease. Which medicine you take might be partly determine by where you are flaring - if you are having a flare that's limited to the colon, then Asacol is a great choice - especially because it was effective for you in the past. HAVE YOU TOLD YOUR DR YOU ARE NOT TAKING THE ASACOL??????

Just because he did not see any inflammation in the TI does not mean there is no inflammation elsewhere in your small bowel. Have you had an upper endoscopy?
Posted 9/10/2011 4:59 PM (GMT 0)
Wait, did you drop from 40 to 10 on your own? That was VERY dangerous to drop that much at once. VERY dangerous.

My best advice is to read through threads on here and the Crohn's forum, and go to the CCFA website and read all of their information about the drugs used to treat UC/CD. You have to educate yourself.

And yes, if you have CD/UC, you should be on maintenance meds, even if you're not flaring.
Posted 9/10/2011 5:43 PM (GMT 0)
Yes I did cut back on my own. My doctor tends to be busy and not return calls. He wants me on prednisone for several weeks then I have an appt at the end of sept when were supposed to discuss humira or other drugs-which ones I dont know but he said I will be on something the rest of my life. I've been living on line researching for weeks trying to educate myself. The side effects of prednisone were so bad I had to do something. Dumb I know. Thank you for your input. I obviously need it

Haven't been on meds - asacol or otherwise-in 3 years. Wasn't told to continuously take them

Post Edited (stubborncarol) : 9/10/2011 11:50:35 AM (GMT-6)

Posted 9/10/2011 5:46 PM (GMT 0)
Are you sure, then, that he said you needed to be on a steroid the rest of your life, or just on medication to control your UC/CD the rest of your life? There's a HUGE difference between those two statements.
Posted 9/10/2011 5:56 PM (GMT 0)
I was still pretty sick at my last appt. I thought he said steroids and humira or maybe I thought humira was a steroid. Ugh. This is so frustrating. Im wondering why he wouldn't just put me back on asacol. I guess ill find out in a few weeks
Posted 9/10/2011 6:17 PM (GMT 0)
ahh i can't imagine dropping from 40mg to 10mg in one week! no wonder your side effects suck so bad! i'd definitely taper more slowly, maybe go back up to 30mg or something. i mean, i'm no doctor, but your adrenal glands need time to adjust as you taper down and if you go down so quickly, they might not work as efficiently.

6mp is an immunosuppressant. it heals the inflammation in your colon. it's helped me a lot in combination with the remicade. and who knows, you might have to be on medication forever, but isn't that better than suffering all the time? that's kind of how i feel at this point. i couldn't leave my house or do anything because i was so sick and weak. now i can go places and exercise again and see my friends. i'll take that with some medication any day!
Posted 9/10/2011 8:04 PM (GMT 0)
It is soo important for patients like us with IBD to have a good, open relationship with your GI doc in which you can ask questions and get answers. It sounds as if you have been kind of self medicating/monitoring because your doc isn't available when you need him..please, please find another doc that is more communicative. This is not a disease you can just start and stop meds without consequences to your health.

I also was shocked when I saw your post about the very fast prednisone taper. I mean, I get it, pred is awful, it really can be, but it IS doing something and if you currently have pancolitis and are flaring, then that is the best way to go for awhile.

kazbern, I have a question for you. You said that "What you have right now is pancolitis. The underlying cause of that is Crohn's disease" What do you mean by that? I have pan colitis, and I do not have Crohn's, I have Ulcerative Colitis, pretty sure on that too from my two colonoscopies this year that showed no small intestine disease. Just curious.
Posted 9/10/2011 8:54 PM (GMT 0)
Im glad I found this website and thank you all for your input.  Because it's my first day I didn't want to bore everyone with too many details, but I feel I've left you all thinking I'm some crazy person self-medicating and not researching this disease. 

I flared August 18, 2011 (Thursday) and called my doctor.  Was having diarrhea with blood every 15 minutes.  By Saturday was so dehydrated called a doctor on call service who came and gave me IVs and 60 mg of steroids and asacol.  Still hadn't heard from my doctor on Tuesday the following week and his office told me to go to ER.  ER did a cat scan and called my doctor.  Saw my doctor next day - gave me Prilosec, Flagyl, told me to take 40 mg prednisone and gave me a taper schedule and said to discontinue Asacol.  Had colonoscopy next day, Thurs Aug 25.  Did not see him after procedure.  He scheduled appt with me the following Tues August 30. 

When I saw him was still having diarrhea.  He said to stop Flagyl because it wasn't helping, and that the Prilosec was causing the diarrhea.  This is when he made the comment that my life has now changed forever, yearly colonoscopies, and when I thought he said low dose steroids and Humira.  My blood pressure was high and I told him that I was dizzy, had a sodium taste in my mouth, swelling, extreme thirst, my back hurt really bad, I was exhausted, not sleeping, headache, etc.  He said that I was having side effects to the Prednisone but he wanted me to stay on pred because the pancolitis was so bad.  He ordered a blood test for me to get a week later to check to see how the steroids were affecting me and told me to check my blood pressure daily (had the blood test Tuesday, Sept 6 and have not heard from his office). 

By Friday of that week (Sept 2) all of my colitis symptoms were gone.  No diarrhea(actually only having 1 bm per day), no pain, I had been eating like a pig all week (high protein complex carbs) but still had all the severe side effects from the steroids and had lost 7 pounds that week even without diarrhea and eating so much.  I was unable to work or function.  So at this point I had been on steroids for two weeks.   I decided to taper.  I went from 40 to 25 to 20 to 10 from Saturday Sept 3 to Wed Sept 7.  Tapering from 10 to 5 today.  I called my doctor on Tuesday, the day I had the blood test, and said that I know I'm supposed to let my doctor know if I'm changing meds so I wanted him to know that I'm going off steroids and is there anything I need to know or anything I can do to help get off them.  I have not heard from my doctor.  My appointment with him is Sept 28 and I don't expect I'll hear from him before then.  We have a shortage of GI doctors in New Mexico and it takes months to get in to see one, but it has become apparent to me that I need to find another one.  I've been trying to get copies of the cat scan and colonoscopy photos from the hospital to have when I find another doctor. 

Thank you again for your input.  It's amazing how a diagnosis like this can hit you so hard and change your life immediately.

Posted 9/10/2011 9:14 PM (GMT 0)
Hi stubborncarol,

My understanding of the term "pancolitis" (and I'm sure someone here can correct me if I'm wrong) means that the entire colon is affected by UC. It's no more ominous a term than "UC"; it's just an indicator of how much of the colon is affected. When I was diagnosed at age 20 (21 years ago), I had mild proctitis; now it's pancolitis, but still an overall mild case of UC compared to many people. Pancolitis can go into remission just as any case of UC can.

I have also played Russian roulette with being med-free during remissions, but a really bad flare this past spring has humbled me into staying on a maintenance dose of Asacol and mesalamine enemas. I was on the prednisone as well for the first time in my life but tapered off under my doctor's direction. I absolutely loathe being on the meds but at this point, at my age and my number of years with the disease, I feel like I need to be responsible and keep the inflammation under control. My GI pointed out that even when you're symptom-free, there many be microscopic inflammation that is only detectable via biopsy.

Even if you are not able to speak to your GI regularly, his/her nursing staff should be getting back to you the day you call, and checking in with the doc before calling you back. Anything less is not acceptable treatment IMHO.

I would echo the need to be super careful about the pred taper and doing so under a doctor's direction.

Hang in there!
Posted 9/10/2011 9:23 PM (GMT 0)
Hi fadoozle,

If my doctor looks at me and says, now that you have severe pancolitis you need to be on asacol for the rest of your life, i am more than willing. This scared me straight. I didn't have side effects when I was on it years ago. Also didn't know that I was supposed to be taking it for the past 3 years. I would leave his office after my colonoscopy and he'd say, call to get a colonoscopy in three years. that was it. The more heavy hitting drugs (Humira) are the ones that worry me because of the noted possible side effects. I'd rather start small and work my way up.
Posted 9/10/2011 10:01 PM (GMT 0)
StubbornCarol, Aquafly and Fadoozle, assuming the first diagnosis you got 20 years ago (Crohn's) was correct, then what you have is Crohn's disease. And yes, "pancolitis" is simply a descriptive term to tell how much of the colon is involved in your current flare. StubbornCarol, you might want to check out the Crohn's forum on healingwell as well as coming here.

StubbornCarol, it's reasonable to expect a scope every few years with a Crohn's diagnosis, especially if you haven't had ongoing issues. I haven't had a scope in a couple of years and I don't expect to have them annually. I have taken my meds regularly for years, although I did reduce my Pentasa dose a few years ago and that turned out to be a bad plan.

Some DRs take a top down approach to meds and will recommend biologics or immune modulators. A recent paper comparing treatment modalities found that the evidence for inducing remission is strongest for the biologics, especially for Crohn's patients. For maintaining remission, there were no modalities that had very strong evidence behind them, some evidence that the biologics were better than others. Many use the 5-ASAs because they are relatively safe and appear to be effective. My DR and I have agreed to stick to the 5-ASAs. I used prednisone for 3 months about 8 years ago, and haven't had the need to do that again. My illness is not in remission, but I generally don't have significant problems either. I haven't had diarrhea or seen blood or mucous in a very long time. My issues have more to do with joint pain, fatigue and bowel urgency.

I'm glad you found this site. There is a treasure trove of information here, and many many people who've travelled this road before you and are happy to help answer your questions.
Posted 9/10/2011 11:18 PM (GMT 0)
I too was diagnosed with severe pancolitis, but have been in remission for the last five and one-half years. At my last three colonoscopies (2011, 2009, 2008), there was absolutely no evidence that I had ever suffered from UC, and I fought it for more than 20 years. My doctor has told me that if he hadn't diagnosed me himself and worked with me for more than 20 years, he would never suspect that I had ulcerative colitis. So don't give up or start thinking about the worst possible outcomes. Things can get better.
Posted 9/10/2011 11:23 PM (GMT 0)
My prednisone courses typically started at 60 mg and then I would decrease my 2.5 mg each week. It's essential that you taper off prednisone slowly and that you keep your GI informed (no matter how busy he or she is) of what's happening as you taper. For years I used 6mp along with prednisone and prednisone enemas. I couldn't use any of the drugs like Asacol, Sulfasalazine, or Mesalamine since they gave me severe leukopenia. As I said, I've been in full remission for over five years and take absolutely no drugs at all now. I went off the 6mp four years ago even though my GI did not want me too. I do stay in regular contact with him though and have yearly colonoscopies. Please rethink your decision to cut your prednisone dosage on your own and contact your GI.
Posted 9/10/2011 11:24 PM (GMT 0)
Your doctor sounds pretty incompetent. Sorry you are having to deal with him. I would get a new one ASAP.
Posted 9/10/2011 11:30 PM (GMT 0)
I just noticed that you said you are eating lots of high-protein complex carbs. You might want to rethink this--especially if they are processed foods. Some of the foods that caused severe problems for me in the past were soy products, cereal grains, and anything that had carrageenan in it as an additive. I am not terribly rigorous about my diet although I followed the Specific Carbohydrate Diet rigorously for two years from 2001-2003. I've done a lot of research in this area though and many of us have trouble with complex carbs. After all our evolutionary history didn't really prepare us to eat these. I eat a diet of lots of veggies, fruits, and meats and a little bit of grain, potatoes and other complex carbs. I absolutely avoid soy in all forms except for fermented soy products.

Please read labels carefully for carrageenan. Researchers use this to create inflammatory bowel disease in lab animals so that they can study Crohn's and Ulcerative Colitis. Most people aren't sensitive to carrageenan, but if you are eating even little bits of this additive can be disastrous.
Posted 9/11/2011 3:52 AM (GMT 0)
natty, it is so great you've been able to get off of meds. i feel pretty good now and don't want to be on medication my whole life! my doctors say i will be, but i think once i get another colonoscopy sometime next year, and if results are good, then i am going off meds. i'd like to see if i still feel fine and if i don't, i'll just start back up on them.
Posted 9/11/2011 7:35 PM (GMT 0)
Oh my gosh, you are lucky you have not ended up in the hospital with adrenal shock. please do some research about the dangers of decreasing prednisone. I know the side effects are terrible but cutting back from 40 to 25, etc. Is taking your life in your hands. You are not going to make yourself feel better by cutting back so quickly...you will end up suffering more side effects and doing more damage to your health.
Asacol is a maintenance drug, not something you take when you "feel sick" it is not like taking Tylenol for a headache...you need to take it every single day, possibly for the rest of your life. No one likes taking medication, but that is the reality of this horrible disease. If I were you, I would call the dr every hour on the hour until he responds to you. He is being extremely negligent and you do not need to put up with that. And then I would find a new dr. Being your advocate is the only way to make it through an illness...ANY illness, not just UC.
Please be careful with the prednisone. I am really worried for you!!!
Posted 2/18/2016 6:25 PM (GMT 0)
One thing my new GI Doc did was give me a big BOOK about IBD, for education. It explains the condition, drugs and surgeries. It explains the process of the disease and also the complications.

It's sad to see Docs who are not doing good patient education!

Prednisone just 'takes down inflammation', it does NOT actually medicate/treat the source of this bowel disease.

That is what the meds like Mesalamine (5-ASA aka Pentasa, etc) do....

It's all about (a) detection/surveillance (by regular Colonoscopy and Flexible Sig) and (b) also about keeping on the meds that can work on the parts of your colon that are affected, in order to prevent this disease from spreading.

Management is the KEY WORD.

This disease, spreads from the 'bottom up', my new GI doc says.
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