Is my doctor wrong?

I recently went to my first appointment with my new gastro, and I find myself strongly questioning some things that she has said. The most important being her medication choice for me.

A little bit of background on my crohns: I have always had stomach issues, however I've had what I think of as two definite flares so far. One in 2010, with a ct scan showing inflammation in my illeum, but no further investigation into what was wrong, which was quickly taken care of with a long dose of flagyl, and the most recent and worst one beginning in february 2013 and ending february 2014. I still don't have an "official" diagnosis, but after a clean colonoscopy & endoscopy, normal HIDA scan, normal blood work with the exception of a crohns marker, and a possibly unrelated/possible related iron deficient anemia, another clean ct scan (with the exception of the discovery of superior mesenteric artery syndrome) and months of symptoms pointing to crohns, my doctor decided to just give me a dose of prednisone to get me out of my misery, since I couldn't do the pillcam because of the blockage (SMAS), he was going with the guess and treat approach. If the prednisone worked wonders on my symptoms, we unofficially had our answer. It did work wonders, and three or four months later, I was in remission.

I just switched health insurance to Kaiser Permanente. (Amazing program, amazing doctors, no surprising costs, perfect program for us that need several doctors to work together!) So, I saw my new GI for the first time. She immediately ordered blood work (which came back completely normal, not even the crohns marker - whats up with that?) She also ordered an MRA to check on the SMAS and an MRE to look for scarring from previous flares to make a final diagnosis.

We briefly discussed medicines that she would put me on pending test results, and she mentioned mesalamines, specifically pentasa, because I have a relatively mild case, and I am in remission. My previous doctor speculated that my crohns was hiding in my small intestine above the ileum. The endoscopy and colonoscopy weren't able to find anything, plus the location of my pain. He informed me that the mesalamines that he would like me to be on would not work on crohns in the small intestine because they are designed to break down in the illeum and colon. All of my research online points to that answer. I questioned my doctor further to ask if the MRE does in fact show that my crohns is higher than the ileum, would I need to be put on a different medication? She answered that pentasa does work on the small intestine.

I am at a loss. I also seem to have IBD related rheumatoid arthritis, and it is really taking a toll on me. It's been getting progressively worse since January, with this month being the worst. I am eager to try the pentasa on the offchance that it will help the arthritis (if it's flaring due to the crohns), but I am reluctant because if the pentasa won't be doing anything for my crohns, I could go into another flare. I would rather be on something that will help me remain in remission and help with the arthritis.

Opinions?

I agree. I know that with small intestinal crohns, I am limited in medications that will work. My rheumatologist was looking into methotrexate. Which I'm not thrilled about, but I know that I will most likely be looking into biologics, chemos, and immunosuppressants.

I'm thinking of telling it to her straight, "I'm one of those patients, like most crohns patients, that does their research, and I haven't found a single thing saying that pentasa is any better than treating the small intestine with a placebo." Maybe she has an explanation that I haven't come across.

I would much rather have the pillcam, but unfortunately with the SMAS which is essentially a blockage caused by the aortic valves pressing on the intestine, I can't do the pillcam safely. (That's my understanding at least)

Actually, Pentasa releases continuously throughout the digestive tract, so it might be the right med for you. In any case, there aren't many downsides to Pentasa so it's worth a shot. If it doesn't help then you can move on to the more serious meds.

You wrote that you have IBD related rheumatoid arthritis. Let's be clear here - rheumatoid arthritis is a serious autoimmune disease that causes irreversible damage to joints and is not caused by IBD. There is a kind of arthritis related to IBD - it's called enteritis arthritis and is not damaging to joints. An effective treatment method is sulfasalazine, which I've been taking with success for about 7 years now.

Welcome to the forum!

Kazbern - thank you! The arthritis side of this is very confusing to me still. I saw the rheumatologist for the first time as recommended by my gastro and primary. He did xrays of the joints in question and they came back normal. He also did blood work with came back with a slightly high rheumatoid factor. Like two points over normal. Neither the rheumatologist nor the gi had a lot of helpful information for me. I'm still not diagnosed in that area either.

It's hard to know the future, but one thing my GI told me that has stuck with me is that the nature of this disease is consistent over its history, usually. Aggressive disease starts out that way.

If a GI told me that, I'd tell him flat out I didn't agree. It's a bit like the idea that your first flare one is usually the worst one: for some people that may be true, but overall that's a complete myth as well.

Mild disease can stay mild forever, sure, but only for a small minority (about 10%). Most people will see complications eventually, no matter how "mild" their Crohn's is. That's 'cos of the progressive, destructive nature of this disease.

Edit: If I sound irked, it most certainly is because I am. I just may have lost a colon because of early docs not taking my "mild" disease seriously. (Of course it may have happened anyway; but I'll never know otherwise.)

Post Edited (NiceCupOfTea) : 6/25/2014 4:31:01 PM (GMT-6)

Meds have a high failure rate, kazbern. It's extremely debatable whether the mildest tier of meds - 5-ASAs - even work at all for Crohn's. Yet these 5-ASAs are what people with so-called "mild" disease continue to be put on.

Utter waste of time if your disease is genetically programmed to progress. And most people with Crohn's will have disease which progressively deteriorates; that's why 70-80% are estimated to need surgery at some point.

Better to be real about these things. Most people will live a normal life with Crohn's, but it's not a benign disease.

Post Edited (NiceCupOfTea) : 6/25/2014 6:28:31 PM (GMT-6)

I have to agree with NCOT, I really doubt that 5-asa's work at all. Out GI clinic won't prescribe 5-ASA"s to anyone.

I think the OP could look into the Imuran/6mp route before considering anti-TNF's. That could be quite successful for several or more years.

Kazbern,
If a patient does not go on biologics early in the disease, their risk of surgery is not going to be lower. Your statement of "Since the implementation of biologic meds, my GI told me, most Crohn's patients do NOT end up in surgery," can't possibly apply to someone who is NOT taking biologics, but taking Pentasa instead. Even with the biologics, I think the surgery rates have not gone down dramatically. ( I need to look up the exact statistics.)

The reason I needed resection surgery was because although my Crohn's was considered "mild," the scar tissue built up over several years time. There was too much damage done for biologics to be effective. Now if my Crohn's returns at my colonoscopy in six months, then going on biologics at that point might be logical.

So, it's a ridiculously hard decision to make. I doubt anyone would have been able to convince me to take biologics when I was first diagnosed with mild disease. I am now being told not to stay on the Pentasa, and at U of C, it was recommended for me to take nothing at all right now, but to monitor closely to see WHEN(probably not IF) the disease returns. The logic of this is that Pentasa doesn't seemed to have slowed the progression of the disease, and the risk of side effects and developing antibodies to the biologics would be better saved for when I actually have disease return.

jsicrohns3: I don't think you would be wrong to try the Pentasa. It is important though, that you understand the risk you are taking with it. My original logic was to take the Pentasa, and if my Crohn's got worse, then I would move to biologics, but it didn't work out that way for me. What I was interpreting as IBS was probably Crohn's all along, so it was all very confusing. Lousy disease, that's for sure!!

The cumulative probability of surgery goes up over time, so measuring the risk after just 5 years really isn't very helpful.

img.medscape.com/article/777/382/777382-fig2.jpg

From that, the surgery rates do seem to have gone somewhat down, although "major abdominal surgery" wouldn't cover all the Crohn's-related surgeries. The main point is, though, the risk never stops going up. Second main point is your GI has absolutely no idea of the effect of the biologics on the lifetime risk of surgery.

And the reason why he has absolutely no idea is because it's unknown. If he's claiming he knows, he's an arrogant fool, like so many doctors.

www.ioibd.org/wp-content/uploads/2012/09/Surgery-and-hsopitaliz-in-Crohn-Gut-2012.pdf

Post Edited (NiceCupOfTea) : 6/25/2014 8:11:53 PM (GMT-6)

gumby44 said...
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jsicrohns3: I don't think you would be wrong to try the Pentasa. It is important though, that you understand the risk you are taking with it. My original logic was to take the Pentasa, and if my Crohn's got worse, then I would move to biologics, but it didn't work out that way for me. What I was interpreting as IBS was probably Crohn's all along, so it was all very confusing. Lousy disease, that's for sure!!

This is exactly what I'm afraid of. (besides the size of those pentasa pills :P) I'm afraid that because I'm in remission, I won't know if they are actually helping or not, and if they don't work, it will be too late and my crohns will have gotten worse, and there's no going back. =/

I agree that 6mp would probably be a great choice for me. It seems to be the most mild of the higher up drugs. I will wait and see what all of my tests say, and see if the doctor changes what she thinks. I'm just unsure of if I want to take the pentasa in the meantime. It should take about a month for all of the tests to be done and results to be looked at. It will also take the pentasa about a month to work if it's going to, right?

I spoke with my doctor, the "marker" that I was talking about is actually an antibody. The ASCA IgA.

gumby44 said...
jsicrohns3...here is an article interviewing the doc I just got a second opinion with at U of Chicago...you might find it helpful: http://www.uchospitals.edu/news/2012/20120418-crohns.html

BTW, how old are you? It is relevant because the younger you are, the longer you will need to live with the disease. That is why the current thinking is to put younger patients on biologics right away.

I am currently 23. I've read that they are putting very young children on biologics because of this method of thinking. "Start with the big guns and it won't progress."

jsicrohns....I don't think taking Pentasa for only a month will help much, but if you already have it and are waiting anyway, it is worth a try, especially if you are having symptoms, At 23, I think 6MP may make more sense, but you do need a definitive diagnosis first. You sound very hesitant about the Pentasa....I think you can talk about this with your current GI, or seek a second opinion.

Kazbern, I see your point that the overall surgery rates may have lessened due to the intro of biologics, but what I was trying to say is that that statistic isn't all that helpful to the individual that is NOT taking biologics...his individual risk stays the same. The biologics seem to be the most helpful to people before a lot of damage occurs, not after.

Hi Kazbern,
I agree with everything you wrote in your above post. I was trying to help jsicrohns3 understand that while there are risks with biologics, there are also risks with taking Pentasa and having the disease possibly progressing. I don't think I would have done anything different upon diagnosis for myself, even knowing what I now know. But our poster is only 23....he has a lot longer to live with the disease than we do, which may change his decision making.

jsicrohns3: You might want to ask for the Serology 7 blood test from Prometheus labs and fecal calprotectin tests to see if you can gather more information to nail down a diagnosis. Sometimes you just have to wait for the Crohn's to present itself in such a way that they can biopsy and confirm. Many folks have taken a long time before they got a definitive diagnosis.