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    Old 11-19-2004, 08:11 AM   #1
    twisten
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    question for Quincy

    Quincy you seem to know quite a bit about bowel disorders so I thought I'd ask you this question. Does inflammatory bowel disease involve any other diseases other than crohns and uc? Why I'm asking is I've recently moved and am seeing a new doc and he thinks because of 1 biopsy that didn't state absolutely crohns that its not crohns I have but inflammatory bowel disease?? Keeping in mind all my lesions are from the left side splenic flexure to the terminal ileum but patchy not continuous. What is your take on this? Thanks a bunch.
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    Old 11-21-2004, 04:09 PM   #2
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    Re: question for Quincy

    Hi twisten, my apologies for not getting back to you sooner.

    There are other inflammatory diseases, but not chronic as are UC and CD. They are caused by bacteria like shiagella, salmonella, campylobachter, E coli, c-diff (but that could be caused by imbalance from taking antibiotics) ..etc. There is also celiac disease, but that's more of a complete intolerance, for when the offending foods are eliminated, the inflammation stops.

    There are also viral infections that can cause bowel inflammation as well as antibiotics and parasites.

    I believe most of the above would be easier to conclude because of the process of elimination during diagnosis.

    So, what's left would be CD or UC. Both of these diseases cause damage. UC affects the mucosal layer of the colon starting at the anus and 99% in a non-skip pattern. It can skip most of the colon and affect the cecum, but there's a definite pattern with that, and it seems the only exception from what I've read. CD happens anywhere in the digestive tract (mouth to anus) and affects the entire digestive wall.

    That's why they're in a class all their own. They are also considered autoimmune disorders, with secondary disorders separate from the IBD (requiring different meds and treatments).

    It's possible your CD is still in the mucosal layer of the colon and the doc isn't ready to say it's for specific. But, if your anus/rectum isn't involved...then it would seem more clear to me. I believe there are tests that can be done to help determine if it's CD or UC, but I don't think they are conclusive. UC doesn't usually have "lesions" as CD does.

    What does the doctor suspect? did he say you still have IBD? Did he use the term colitis? Do you have a copy of your test results?

    You have a lot to deal with even if you don't have CD.....but I think there are some blood tests that can at least determine if your sacroillitis is IBD related...but you can probably check into that.

    It's possible your doc wants to put you through more testing, and maybe there's a personal reason on his part as to not take the word of another doctor...I'm just guessing, but doctors aren't free from self-centred qualities.

    Are you on any meds for your CD? When were you first diagnosed and how did that come about?

    I don't really know a lot about CD nor have specifically done major research because I don't have it, but I definitely pick up a lot of info from the posts, sites and books I've read as comparison to UC.

    My UC follows the classic pattern and reacts well to 5ASA treatment. I've never been on pred and will hopefully never have to be.

    But, my father had Ankylosing Spondylitis, and I have had body pain (myofacial, joint, muscle..etc) since I was a kid, and it was a relief to at least have a clear diagnosis after the elimination process.

    Have you had a small bowel series done to clarify you don't have any lesions there?

    I hope you get it clarified soon. Just out of curiosity, which province do you reside?

    Well, enough questions......

    Talk soon,
    quincy
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    Old 11-21-2004, 10:14 PM   #3
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    Re: question for Quincy

    I don't have time to respond to this tonight. I wanted to let you know that I will try to respond by tomorrow nightthough. I didn't wait to long for you to answer so no problem there. Thanks a bunch.
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    Old 11-23-2004, 08:24 PM   #4
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    Re: question for Quincy

    I had a long reply typed out and somehow I lost it!! I had 2 colonoscopies that showed "multiple lesions throughout with skip pattern". I had a fistula about 5 years ago. I had recently had a hysterectomy so they thought that had caused it. Two years after that I had a lot of abdominal pain and irregular bm's so a colonoscopy was ordered. The GI I was seeing said definitely crohns even though the biopsy said inflammatory bowel disease or self-limiting colitis. He also said the crohns caused the fistula. I get sores in my mouth when I'm in a flare. I've had bowel probs my whole life but was told it was IBS with absolutely no testing. The doctor told me that if my sacroiliitis is crohns related it won't show up in any tests and it doesn't. I had another colonoscopy this summer that was good so that GI took me off of my meds. At that time I was on imuran and asacol. I have been on and off high doses of pred also. I am back on asacol again because I'm in a bit of a flare. Yes, they do say I still have IBD although they're unsure if its crohns because of what the biopsy said. I talked to the GI that diagnosed me and he said "he doesn't care what they think, he knows what he saw and to take me off my meds is a big, big mistake." I was tested for viral infection and for parasites all of which were normal. I think this answers most of your questions. Just a big mass confusion!! Oh, also I'm in Alberta, how about you? Hope you didn't fall asleep reading all this!!
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    Old 11-23-2004, 10:12 PM   #5
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    Re: question for Quincy

    Hey everyone....Quincy, I hope you don't mind if I add a little bit to your answer. By the way, do you have anal involvement with your UC? If you do, you should be written up in a case report, because UC almost always spares the anus and begins at the rectum! Just out of curiosity, how far proximally does your UC go in your bowel?

    As for twisten: So it does sound like you have Crohn's disease. As Quincy quite correctly put, Crohn's can involve anywhere in the GI tract from gum to bum as is often said! Not only are the lesions in CD skip lesions, they involve the entire thickness of the bowel wall while UC usually only involves the surface. It's a bit of a tradeoff because bad Crohn's disease is usually much worse than bad UC, but the risk for bowel cancer in UC is MUCH higher than in CD.

    A couple of other things. Quincy gave a nice list of all the different forms of colitis, and he did differentiate UC and CD as being autoimmune. You were right to conclude that Inflammatory bowel disease only contains TWO entities...CD and UC which are both thought to be autoimmune conditions.

    Both conditions can be associated with symptoms outside the bowel. The most common symptoms are: inflammatory arthritis (usually the larger joints, and can also be associated with sacroiliitis or ankylosing spondylitis), rashes (erythema nodosium on the shins, and also weird rashes called: pyoderma ganrenosum, keratodermia blenorrhagicum and circinate balanitis.....basically bad rashes involving the shins, feet and penile head respectively) and eye inflammation (iritis, uveitis, episcleritis). Additionally, UC can be associated with bowel cancer and a disease which destroys the bile ducts in the liver known as Primary Sclerosing Cholangitis.

    Now, on to your drug therapy. Depending on how bad your Crohn's is, taking you off drugs actually might be a GOOD thing! In mild to moderate cases of Crohn's, usually you can put people in to remission with prednisone and SOMETIMES asacol, but there is no place for keeping someone on a drug long-term. HOWEVER, if the disease is more severe, or frequently relapses, then you can add in either imuran (azathioprine) or methotrexate to be taken even while in remission as a maintenance agent. Putting on a maintenance regimen is usually only done if a person has more than one relapse in a year, or the disease is quite severe. Additionally, there is very little role for maintenance therapy with a 5-ASA agent....those are much more useful in UC.

     
    Old 11-23-2004, 10:17 PM   #6
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    Re: question for Quincy

    Please note in my above post that I was saying that maintenance therapy in CD is not warranted in MILD to moderate Crohn's cases The evidence shows that these can be put in to remission and kept in this state withOUT drug therapy.

    Another thing...other than induction of remission in certain relatively mild cases of CD or colonic Crohn's, 5-ASA agents have no place in the treatment of Crohn's.

     
    Old 11-25-2004, 12:54 AM   #7
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    Re: question for Quincy

    Hi twisten,

    Oh, a fistula.....definitely leaning more to CD. Where was your fistula?So, now you're between the diagnosis of two doctors -- talking of being between a rock and a hard place.

    Your CD is limited to the colon then? Which areas of the colon are affected (ascending, transverse, descending...etc)? If you're on Asacol it should help with the inflammation if it's not severe. There's also Pentasa or Colazal depending on where in the colon your CD is.

    That was good news that your colonoscopy was ....but I hope the doc didn't abruptly have you stop your meds without tapering.

    I'm sure that if you are not improving or have worsening symptoms you'll get back to the doctor. CD of the colon seems to be difficult in diagnosing.

    How's the weather in AB? I'm in MB, and just had our first snowfall 2 days ago. I guess winter is here to stay..

    I hope you get all this sorted out. At least the doc put you on meds!

    What exactly are your flare symptoms at this time?

    Keep us posted as to how you're doing.

    Hope you have a feeling good day!!

    btw....your post isn't anywhere near llllllloooooooonnnnng!

    quincy
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    Last edited by quincy; 11-25-2004 at 12:58 AM.

     
    Old 11-25-2004, 01:16 AM   #8
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    Re: question for Quincy

    Hi butterflytrans,

    Just for the record, I'm a she.

    I don't have anal involvement perse with my UC....but when flaring my anus gets "touchy" and somewhat reactive. UC starts at the anal/rectum "connection"....and those who have had their colons removed but not the anus can have anusitis...a continuing of UC symptoms there. So, it's not spared really, just when it's not "alone" I guess.

    My UC is rectum/sigmoid, and quite nicely treated and maintained with Asacol and Salofalk retention enemas. I was diagnosed just shy of 16 years ago, but had definite symptoms except bleeding almost three years before that.

    It was suspect that I might be on the way to PSC because of increasing liver enzymes....I refused the ERCP and so far so good as to the enzyme levels. Still elevated, but not changing. Could be the meds, plus estrogen patch I'm using after my hysterectomy. It's a closed matter for now and the doc agreed with my refusal.

    So far so good and both my doc and I are happy that my last c.scope in June came back with no cancer.

    I just wanted to add that 5ASA is still one of the best meds of choice for CD, but it would definitely depend on the severity and how deep throughout the digestive tract wall has been affected.

    I've never read nor heard that 5ASA has no place in treatment for CD. According to patients, it's successful in treatment plus maintenance. It just doesn't do well with pred (from what I've read).

    Do you have CD or UC? If so, how long, which meds, symptoms....you know all the pertinent info required for sharing!! ;-)
    I don't have the energy to go through all your posts to find out.

    Hope you're doing well.

    Best to you,
    quincy
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    Old 11-25-2004, 04:56 AM   #9
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    Re: question for Quincy

    Hey quincy! How are ya...sorry...I didn't realize you were a she.

    Yeah, it is surprising to hear that 5-ASA isn't meant for use in CD in most cases. Like I said, there is an exception. #1. In colonic Crohn's, you can often use sulfsalazine or another 5-ASA agent to induce remission. You're right that many people are on maintenance therapy for CD with 5-ASA agents, but the thing is, this is a placebo effect. Numerous trials have been done on this subject in the past 10 years to show that, once in remission, the people who took the placebo pill did just as well as those who took the 5-ASA tablet. In other words, Crohn's in the mild and moderate forms is very managable without any medication whatsoever to maintain remission. In more serious cases, the two drugs that have evidence to actually work are MTX and azathioprine. Now I know that you probably have lots of friends on 5-ASA, and that's because they're probably being treated by their family doctors, many of whom were taught to do this in med school. If you are in contact with a tertiary care center, you will see that none of the gastroenterologists use 5-ASA agents in CD except in certain special cases.

    No, I don't have UC or CD, which I am thankful for, but let's just say I have the opportunity to be exposed to it.

    Anyway, I know this board isn't to discuss medical management of stuff--I just wanted to put out "did you know" type of statement 'cause it is evident that a lot of people use 5ASA agents in CD when they're really not that helpful in the vast majority of cases.

     
    Old 11-25-2004, 11:27 PM   #10
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    Re: question for Quincy

    Actually I didn't know either that 5-ASA's aren't for cd maintenance. I've seen 3 GI's, 3 internal medicine specialists and numerous GP's and have never been told that. It makes sense though. When I was first diagnosed the asacol is all I was put on and it did nothing. It took close to 2 years of heavy prednisone and imuran doses to bring it into "remission". The symptoms I have now are extreme abdominal cramps above the belly button and curves down towards the right side towards the appendix (it's not my appendix causing it), burning in a couple spots, nausea and vomitting, achy joints, had diarrehea up until yesterday now nothing is moving which is what happens with me. I had the lesions previously from the left splenic flexure in a skip pattern right down to the terminal ileum. It's cold here Quincy, but I guess I shouldn't complain because its going to get a lot colder!! Things were really icy this morning because we had a freezing rain last night. We had lots of snow back in October but its pretty much gone now. I think I've answered most of the questions but if not just let me know.
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    Old 11-26-2004, 11:39 AM   #11
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    Re: question for Quincy

    Hi butterflytrans......so, are you M or F?

    No problem about the assumption....just curious as to why you chose M?

    5ASA definitely has benefit in treatment of CD. You even say so yourself. Actually, I don't think the actual benefit is fully known or understood yet. I believe it might even act as a preventative by keeping the mucosal layer of CD patients (and of course UC, but we're not discussing that) from being damaged further.

    If Asacol is given to a patient with CD that has it in the small bowel or higher in the colon....it would probably not help as much as compared to the granules or Pentasa.

    If one's CD has already presented when damage has taken place and the immune system is in high gear, I don't think that 5ASA as the lone treatment will do any good.

    CD and UC are definitely treated differently because they're different diseases, but Crohn's Colitis or Ileitis in early stages would more than likely be helped with certain symptoms such as diarrhea and help keep inflammation down. Maybe if kept in the early stages, it will prevent further penetration into the bowel wall. I don't think that's even considered.

    I think the term remission is overused....maybe the words treatment and maintenance would be better served. Many patients (AND MOST DOCTORS) are in such a hurry to be in remission, that the quick acting meds such as pred are definitely overused.

    But, in saying that, patients present differently, CD is much more complex in activity and affect. Pred is so widely distributed by doctors that I believe unless it's used with a quick taper process the patient actually will worsen and be very resistent to other meds.

    The vast majority of cases as you state....would they be more advanced?

    Treatment of 5ASA as I said is probably more misunderstood, underprescribed and not used for its full effectiveness by not prescribing the right product for the affected area.

    So, your perspective might be as such, but 5ASA hasn't yet been fully explored in it's "release" potential.

    My 2 based on "gut" instinct and observation through various boards and postings.

    What's your take on that?

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    Last edited by quincy; 11-26-2004 at 11:40 AM.

     
    Old 11-26-2004, 04:21 PM   #12
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    Re: question for Quincy

    Hi quincy! I am M! I don't know why I thought of you as M..probably because I think of Quincy Jones when I hear the name and he's M

    Anyway, yeah, sorry, I didn't mean to say that 5-ASA drugs have NO role in CD...just very little. Yes...I also agree with you that UC and CD are very different diseases.

    Again....my statement was that 5-ASA was best for COLONIC Crohn's, because the was the drug is released, most of it is active in the colon. Considering 40% of Crohn's is small bowel only, you can see why 5-ASA can't always be used.

    Secondly, if we use the terms by strict definition, the 5-ASA drugs are usually only effective for INDUCING remission of mild to mild-moderate disease. Once these patients are no longer flaring, you don't need ANYTHING to keep them in remission. By remission, I mean the disease isn't active either pathologically and most importantly, symptomatically. I disagree somewhat with you that this hasn't been looked at because there have been a LOT of studying on this subject. In fact, one of the lead researchers in pharmacological therapy for Inflammatory Bowel disease in the WORLD comes from where I work.

    I do agree that 5-ASA treatment alone would not do any good in maintenance of remission....why? Because 5-ASA has been shown to be a poor maintenance agent. The evidence lies in Methotrexate and Azathioprine (Imuran) as maintenance agents. When I say "evidence", I'm talking about evidence seen in large scale, multicenter clinical studies.

    I also agree with you about doctors being in a rush to put patients in to remission; however, if things are done right by a gastroenterologist, this usually isn't a concern. Secondly, I don't think prednisone is overused at all. It is generally saved for people with high score on the "crohn's disease activity index" and especially those patients whose flares are so bad they require hospitalization. Plus, if the flare is really bad, a lot of gastros are turning towards early use of Infliximab (Remicade) anyway--especially in children.

    Bottom line...I respect your views, and I totally can see where you're coming from; I guess I have just been exposed to different trends.

    Question...why don't you undergo the ERCP to see if you have PSC? Don't you think it would be helpful? Have you ever had a p-ANCA drawn?

    Last edited by butterflytrans; 11-26-2004 at 04:22 PM.

     
    Old 11-27-2004, 01:31 AM   #13
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    Re: question for Quincy

    Hi there.....I did assume M for you. Interesting.

    Regarding your question:
    Since an ERCP can cause pancreatitis plus trigger PSC into "action" even if it might happen 20 years down the road.....I'll take my chances when I have more definite symptoms.

    p-ANCA drawn? sorry....don't even know what it is. Without me doing a search first.....would you mind explaining what it is and what it would show?

    My liver enzymes are consistently elevated (not through the "roof") ....it's been almost 8 years......but not spiking up or down.....consistent. When changes happen there, then it's possible I might consider. BUT, I'd do an MRI first.

    There are no appropriate safe tests for PSC. I view it to parallel the witch hunts of Salem......throw them in water and if they drown they weren't witches. BUT....if they don't drown, they must be witches, so they get stoned until they do.



    It's understandable about being from different "trends" regarding treatment of CD. I don't have it....so really don't know that much about it. I don't have personal experience with it, and my friends who have it are affected in entirely different ways with different treatments. My interest is obviously UC and so far the maintenance through 5ASA has been more than satisfactory. As long as I'm cancer-free, my UC hasn't spread, and a state of "remission" is accomplished for long periods....I'm doing awesome from my and my doctor's perspective. I can possibly consider lowering my maintenance dosage once again.

    Regarding the overuse of Pred......no patient....NO PATIENT....should be on it for years and years and years and end up suffering irreversible side effects!!! That's overuse from my perspective.

    Again, my perspective is UC with use of 5ASA.....and it's definitely not a placebo.

    Hope you have a great weekend!
    quincy
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    Old 11-27-2004, 07:41 PM   #14
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    Re: question for Quincy

    Totally agree with you on the pred issue Quincy. I've been on and off of it since my crohns diagnosis and now have osteopenia and osteoporosis. Maybe I would have ended up with it anyway, who knows!! It sure didn't help being on the pred though but I guess at that time I didn't have a choice. My mother-in-law has rheumatoid arthritis and has been on pred for so long that she can't ever come off of it. She also has osteoporosis. It does have its benefits but I think it is over prescribed too.
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    Old 11-27-2004, 09:20 PM   #15
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    Re: question for Quincy

    It's not that prednisone is over-prescribed, because it IS a good drug. It's just that, a lot of the time that's the only drug that works in certain conditions and that's why it's used. The side-effects of prednisone are well-known, and because patients suffer side-effects from the medication doesn't mean that it's overprescribed. Additionally, doctors should take all the precautions possible to help minimize the side-effects, including increasing steroid-free intervals and starting any patient on steroids with calcium and vitamin D to help minimize the osteopenic action of the drug.

    Quincy, I see what you mean. You're right, ERCPs can cause pancreatitis, but just like with any other procedure, there are risks. There is a risk of perfing when doing a colonoscopy, but obviously the benefits outweigh the risks in the proper clinical situation so that's why it's done.

    Of your liver enzymes, are the cellular enzymes raised (i.e. AST and ALT) or the obstructive enzymes (ALP, GGT)?

    p-ANCA is a nuclear antibody (shoot, I forget what it stands for) and it can often be associated with primary sclerosing cholangitis. Not always though. It's just a nice thing that the doctor might want to send off because it's obviously minimally invasive.

     
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