New GI is more competent but Crohns is worsening it seems (and a Q!)

So, the assumption of mild Crohns may have been short lived. I've been on the Apriso for about 5 weeks and seen only a slight decrease in symptoms. The turmeric seems to be working for the joint pain though so thank goodness for small amounts of relief.

My blood work from my last visit showed an ESR of 60. In Sept it was 24 and Nov it was 18 so this is a huge jump for me and he's concerned. He wants me to stay on the Apriso because it can still take several weeks to work but he's going to get another colonoscopy and biopsies to really see what's going on and then we'll change meds from there. My old doc finally faxed over my medical records but he's eager to get a look (literally) for himself.

Question for anyone who has been on Entocort before: did you experience skin discoloration when healing from minor scrapes and such? Say I scraped the side of my ankle on the plastic thing my husband keeps financial documents in...before Entocort, it would heal and go away in a few days. Post Entocort, (I was still on it at the time) it healed and isn't scarred - skin is flat - but there's discoloration. Same with a few other similar scrapes, and a tiny burn from the tip of the iron. Then recently, this is 2 months post Entocort, I had a small patch of poison ivy on my knee. I used cortisone cream once or twice but mostly calamine lotion & put one of those water seal type bandaids over it to avoid it running on jeans. Now the spot where the adhesive from that bandaid was AND the spot where the poison ivy was, are both discolored. He said it's a hallmark of steroids but I forgot to ask why it might still be happening and if it'll ever go away because we moved into another topics.

Colonoscopy is probably week of Aug 9 and then we'll see what meds he does from there.

New doc put me on Apriso because my diagnosis was mild Crohns and he said that while it doesn't work for most Crohns patients, he wanted to try it before getting more aggressive.

I suppose I'm lucky but the $30/mo price tag, while annoying, is not debilitating for me right now, even with the low chance it would work. He's not going to shy away from more aggressive treatment but because when I first say him my old doc hadn't yet sent my medical records, he needed to get his own tests.

My ESR had previously not been that elevated (24 and 18 as I mentioned above) but MRE was consistent with active Crohns. He finally saw the results of the 1st scope yesterday because they finally sent them - only took four weeks to go across town apparently. But this ESR of 60 concerned him.

Now we'll do a second scope - if I wasn't on the Apriso, I'd be on nothing because he doesn't know what he's dealing with yet. Cost benefit analysis (from my perspective) says that with no side effects and fairly low cost, it couldn't hurt to try in case it might work. And because he hadn't yet seen my scope, and I'd been told alternatively that I did and did not have Crohns (never got to talk to old GI after MRE and GI that did the colonoscopy said my inflammation on biopsy could be anything and my Crohns serology being negative + visibly my colon was healthy) so he thought maybe it would work I guess.

I understand everyone here is really against trying different medical approaches but I trust this doctor (he's the associate director of the inflammatory bowel disease center at Columbia University/NY Presbyterian) so I feel comfortable with his approach. Unlike my previous two docs, he hasn't been dismissive of ANYTHING, and has been open to everything. He's not against more aggressive meds but I don't have a medical degree and since he's been honest about treatment with me, I'm willing to try. Especially since he hadn't had the chance to run any of his own tests and only saw MRE results on my phone & limited info from previous blood work.

Also, because I now have terrible health insurance I am really limited and I waited 2 months to see him, so I can't just switch doctors now unless I want to try to get treatment in 2017.

Every single time I post, the only thing people seem to care about is that I'm on Apriso (or before that, that I was on Entocort).

:( I feel pretty crapty, if I'm being honest, and I told the doc that, and he's doing another scope so HE is informed about ME specifically so he knows how to treat me. I don't need more lectures on why I shouldn't be on Apriso. I get it. I'm wasting my time and money and it's a crap drug and won't help me. Everyone else gets kind supportive responses and I get "Why are you on Apriso?"

I think I'll think twice before posting again but hey thanks.

Thatgirlmarie, Hang in there. When I was first diagnosed I too had some of the thoughts you. There seemed to be so many options I could choose from. I thought I had lots of time.

What I didn't realize was every second counts. These people had walked down dark scarey places where I hadn't had to go yet. They were trying to keep me from making some of their mistakes. They were trying to help. Sometimes their wording wasn't the same as what I would have used BUT they took the time to reach out...even while they too are walking in dark scarey places they took a moment to share their knowledge with me. Trying to help and keep me from going down a road that might be worse than the one I was on, or trying to get me off the road I was on.

Hang in there, do your research and keep searching for the best health possible for you.

beave: Our ideas of "helping" are very different.

I don't think me saying my disease is mild, is wishful thinking, but a fact according to the tests I've already had. Either it's not Crohns, it's been mild for 6 years and is progressing slowly, or this is just how it'll always be. There were no visible signs of Crohns during my first scope. MRE showed slight wall thickening at the TI but otherwise, nothing. I have no bleeding, no abdominal pain, no weight loss (in fact, I am gaining weight - I moved to NYC 9 years ago and have gained quite literally, 100lbs since then despite being active and eating fairly healthy) so two doctors already dismissed me with no answers. A doctor willing to TRY a medication (when I am lucky enough for the cost to not be prohibitive and I'd otherwise be on nothing) while waiting for other tests results is great so far. He's also talked to me about a clinical trial, he hasn't dismissed my joint pain or fatigue.

I think I made an educated decision about the Apriso - especially since my doctor said "This doesn't usually work for Crohns patients but I want to try it" and after talking about it, I agreed. If it doesn't work, I haven't taken a risk or lost anything, because I wouldn't otherwise be ON anything, right? I lose nothing. He wouldn't have put me on anything until seeing my bloodwork and seeing me again anyway.

And if there were no visible signs of Crohns (doc told me after my scope that I was 100% healthy and maybe my blood work was a fluke or a mild infection and was fairly confident in saying I did *not* have Crohns) in October, after 6 years of symptoms, then although I know it's possible, I don't think this next scope is going to suddenly discover significant scar tissue or damage - of course, I could be wrong, but I assume if that was the case, my symptoms would also be getting worse, and they're not. They're just not getting better. Well, except the joint pain and being tired all the time.

Since coming off the Entocort which I was on from November - April, my symptoms have come back but not as bad as they were before the Entocort. I just think not even the doctor knows for sure what's going on here so if he had jumped immediately to biologics, I'd probably be more worried that he was treating something he wasn't aware of. I am a well educated 27 year old, not a teenager. I come here for experience & support, not to be patronized.

@gumby44 @clo2014 - both of your posts were helpful & much appreciated. When I see my doctor for the scope, I am going to ask him the What Ifs & more questions - what if the biopsies show MORE inflammation? What if there is visible damage this time? What if there isn't? What if the biopsies are no different? What if this scope is identical to the last? And get solid answers for his plan - sure I trust him but it'll help to know what he's thinking and I should have already pushed for more specifics but didn't feel dismissed so didn't think it was entirely necessary.

I've read the research. I hear everyone re: mesalamines. My decision was not uninformed. I have a documented diagnosis now and a doctor who thinks I'm worth the time. If it's the same as doing nothing and I'd otherwise be doing nothing, but I have a doctor who wants to do more tests, then I seriously ask, what's the harm? Try not to fall off your high horse there.

Hi Thatgirlmarie,
I agree with Gumby, no one is against different medical approaches but a lot of us see those meds and think of what we went through and want to do the best to prevent someone else from suffering as well. Also keep in mind that despite all the reading you could do you have a very different perspective starting out with the disease than you do many years into it. That said, I think you've made the right decision considering your circumstances. I used mesalazines for quite a few years as well as on and off prednisone tapers despite having moderate to severe crohns to begin with. (And as NCOT said, I'm pretty sure we all start out as mild since I had issues for many years before diagnosis) Was it the best choice? I think it was despite the negative effects the disease had on my life. I felt in the beginning the medicine worked to some degree. There are a lot of reasons it was right for me but would have been wrong for others, including finding a good team of doctors that if I had a problem while on the stronger meds, I would have confidence they would take me seriously, know what to do and how to solve it especially since my body tends to react negatively to most meds. In your case dealing with the joint issues I can relate to. I have issues with body aches and joint pains. it used to happen when the disease was flaring but is now happening despite the crohns being under control and being on biologics. Being on these meds makes it a whole lot more difficult to get to the bottom of what's causing that type of pain so it was wise of your doctor to say to wait until you have a better picture of what's going on. I would suggest asking your GI for a referral to a rheumatologist if he has not given you one yet. Joint pain can be a part of Crohn's disease but it can also be a sign of RA or other autoimmune diseases. The later causes actual joint damage while the former do not, so they can order scans to see what's going on in the joints. I'm curious how it goes with the new GI. I thought about switching there several years ago when I used to go to one associated with Mount Sinai and was not pleased with my experiences, though I'm happy with where I ended up.

Post Edited (Labradorite) : 7/31/2016 2:41:11 PM (GMT-6)

@marie, I was once in your shoes - I was diagnosed with UC originally and thought that I was doing pretty okay on the mesalamines because it wasn't as bad as it usually was before. I think that's everyone has been concerned. I also think you're misinterpreting what a lot of people are saying; it's so hard to convey tone of voice via the internet. I don't think anyone is trying to sound condescending, but they are trying to provide the experience that you said you're here to get.

I do resent a bit that you're saying people here are against trying other medical approaches. The majority of us HAVE tried other ones. That's why we're saying what we're saying. We're not basing it off of what our own doctors told us, necessarily. We're basing it off of our personal experiences. If I had been put on biologics in the first place instead of mesalamine and imuran, I would have saved myself over 30 hospitalizations and multiple surgeries in a 4 year period - and I'm only 29.

You also seem to be jumping around a lot in how you describe how you're doing. In one post you're talking about how crappy you're feeling, but in another you say you're not doing that bad. I think that's why there have been some misunderstandings as to what you're asking for in your posts. Again, we are sharing our own experiences, which is what you say you're asking for.

I do think you're going into things informed, but we've also run across doctors who aren't up to speed on the best, newest, most effective methods for treating Crohn's disease. Many people have really suffered for it, and we don't want to see that. So I apologize if we're coming across as being down on you being on mesalamines - but like @NCOT said, we see that you've had your diagnosis for less than a year and we see you're feeling crappy and you're on a medication that studies prove is no more effective than a placebo. Can you see where we're coming from? It's genuine concern that you aren't informed. Your age has nothing to do with it - we would say the same thing to someone in their 50s or 80s or whatever! We just want to make sure that you don't live (or honestly, not live) to regret the decisions you are making now. So please understand, this is coming from our own experiences (mostly negative) and we just don't want you to be in the same awful places we've had to be in.

Symptoms are genuinely a piss-poor guide to Crohn's disease activity most of the time. Before my diagnosis and for about 5 years after it, I had milder symptoms than you - literally diarrhoea 2-3x a day, that was it: no bleeding, no pain, no fevers, no joint pain, etc. I didn't forsee it ever getting any worse and I also doubted my Crohn's: it didn't seem nearly severe enough for that.

Then in 2005 I had a weird relapse, which primarily took the form of severe fevers. The diarrhoea got worse, but not drastically so, and I still had no pain, bleeding, etc. However, the fevers made me feel incredibly ill and for the winter of 2005/6 I would frequently lie in front of a heater at full blast, shivering. Like an absolute idiot, I never told my doctor/IBD nurse about them: I don't know why, I think I just assumed if it was anything serious, they would somehow know about it and tell me. But they never did.

I partially recovered, but not fully. After every exacerbation my new 'baseline' of disease activity was always that bit worse than it was before. In 2011 I was hospitalised for the first time and thereafter needed to be hospitalised regularly; only steroids kept me out of the hospital for any length of time. By 2013 I was hopelessly steroid dependent; I booked surgery in Feb 2013.

By contrast I have a brother with Crohn's who has been in remission for nearly the whole time he's had it, never been on biologics, and never needed surgery.

You could be like me or you could be like my brother. I'd say if your mild symptoms for 8 years has been Crohn's all along, then you are looking more on course to resemble my brother. But as you weren't diagnosed, you don't know if it was Crohn's for that length of time; might have been IBS or something else.

On another note, the 'mild' symptoms of this disease can be almost as debilitating as the more severe ones. Fatigue is no barrel of laughs, nor is being housebound because of the fear of accidents or being scared to eat stuff because of the potential bad reaction.

My symptoms with active Crohn's were right sided pain from the stricture site and anemia. I have IBS even in remission, so I can't base a "Crohn's flare" on how much cramping or D I have, as bowel problems are unfortunately for me an ongoing struggle. So I base calling my Crohn's active or in remission on blood work, fecal calprotectin and screenings like colonoscopies. I do not have anemia in remission and all my other labs are normal. I hope that helps

That helps. I wish I had access to my most recent labs - need to ask about that tomorrow when I talk to the admin assistant about my colonoscopy date. I don't know what my CRP or calprotectin were - he only mentioned ESR but I am 100% sure there were other things tested for especially since he's the only one who has done a stool sample. But then others are saying you can't base it on labs alone. So is it symptoms + labs if either or can't be a clear indicator? It feels conflicting :/

So if you're in remission and symptoms aren't enough to go on, so you just have regular monitoring (every few months? Weeks? Since it seems everyone is saying it can go from remission to Bad in a matter of weeks, etc.) with labs & scopes?

Since it seems everyone is saying it can go from remission to Bad in a matter of weeks

That's usually in the very severe cases. In my case it appeared to go bad almost overnight, but I think it had actually been building up for a long time and something sent it over the edge (not sure what - chronic lack of sleep maybe). However there are cases where Crohn's does appear to come on very suddenly from a previous position of remission.

Re labs - they're more reliable for some people than others. Some people's CRP (a commonly used inflammatory marker) never rises, for example; for that population, measuring the CRP is obviously a waste of time. There's other markers (ESR, lactoferrin, ferritin, platelets, calprotectin, etc.), but nothing that is 100% reliable all of the time in everybody. If you can establish an initial baseline, then future measurements are more useful 'cos you can see how much you've deviated from the baseline.

Labs are also less helpful if you've got other conditions which might influence the results. There's no specific lab test for Crohn's as such; they're all general markers of inflammation or infection.

Re Entocort - Yeah, Entocort worked pretty well for me. Not perfect but far better than nothing. Wish it had lasted.

I hope your brother can remain sober and get proper treatment for his Crohn's.

Re: no specific test for Crohns - first doctor said there was! Like the celiac specific test there is one for Crohns but it has a high incidence of false negatives apparently. I was on the Entocort for 2 weeks when he called to declare to me that I did not have Crohns bc this ONE test said I didn't. I switched doctors that day. What an idiot! Glad I waited to google his name.

This test is called an IBD Sgi Diagnostic http://www.prometheuslabs.com/resources/ibddiagnostic/ibdsgi-productdetaildx13005-0113.pdf

But I found a lot that called into question its accuracy and said it could not alone be used to diagnose. http://evidencebasedibd.blogspot.com/2012/12/ibd-blood-tests-for-diagnosis.html?m=1

I didn't believe that one blood test could say I didn't have Crohns.

Oh definitely not. What surprised me was that I had positive biopsies from colonoscopy before he did that blood work. I felt like he was taking advantage of my admittedly stellar health insurance at the time. But it also felt like he was looking for an excuse to tell me I wasn't sick (also told me my joint pain was because I was fat) and that's why I switched.

Have you got the units of measurement for the CRP? That's either slightly high or really high - more likely the former, but if you've got the units I can tell you.