Doc is denying I have active disease

Hi All,

I don't know if I have ever been so frustrated in my life. I have been struggling since Thanksgiving with symptoms similar to Crohn's. Super loose stools, pain, nausea, extreme dehydration (I already get 3x weekly of 2 liters of fluids and still am getting dehydrated), and even blood this past weekend in every stool that thankfully cleared up. Though now add bad breath and severe reflux up to my throat to the mix again, which only happens when I am flared up.

They did some stool samples. All came back negative for anything. They did blood work on me, and only one inflammation marker was elevated... my CRP was at 1.7 (I think normal is up to 0.5). White blood counts were normal range as was my SED rate. I have been to the ER 3 times for the pain, and each time was sent home without a CT scan because they are worried about doing that too much on me.

Well, today after reporting that my symptoms are getting worse and pleading for help, he says that my blood markers AND CT scans (my last CT scan was 2 months ago) say that my Crohn's isn't active, thus he doesn't think any Crohn's medicine would help and he wants to see me (though he gets booked out like 2-3 weeks at least, if not a month or two). I have never been so frustrated in my life. I have had this disease for 20 years, and know how it feels. Now my GI is refusing to help me because my blood work is overall good outside of the elevated CRP, and my CT scans aren't showing anything (DUH... I just started having issues 3 weeks ago, not 2 months ago when I last had a CT scan).

I am so frustrated, and beside myself. I don't know what to do. I am trying to get into another GI doctor, but supposedly the one I have right now is "one of the best in the area" and I have been with that clinic for 8 years, and through two surgeries, and a cancer diagnosis. Now they are ignoring my own body and how I am feeling, saying it isn't Crohn's.

Does anyone have any ideas on what I can do? I am on no medicine right now, because of the chemo that finished in August. And they won't put me on anything, nor think I need anything because they "don't think this is crohn's", yet they won't CT scan me or do an endoscopy or colonoscopy. I am so beyond frustrated.

Please let me know if you have any ideas. I would love some right now. I don't think I have ever been this upset.

Thank you,

Jacob

It is a pretty poor show, denying you tests. Have your blood test results been worse in the past? Because that's the only reason I can think of why your doctor is so adamant you don't have Crohn's. Some GIs do seem to give blood tests disproportionate significance - if the results are normal, they assume there's no way your Crohn's can be active. But that's not true. Blood tests simply aren't that reliable - a lot of people have normal results whilst flaring. Blood tests are the beginning, not the end of, diagnosis.

As for the CT scan business, ask for an MRI scan instead. It's just as good and there's no radiation risk involved.

If they still keep denying you tests, I don't think you have much choice left except to change hospital/doctor.

It doesn't sound like they did the faecal calprotectin test. I'm in two minds about that. It is good for detecting intestinal inflammation, but on the other hand it doesn't replace the need for imaging tests like colonoscopies. Also if you've never had it done before, then there's no baseline to refer to. There's also a 2 week turnaround time, so it's not that quick either.

It sounds like your CRP never rises very much for example. Which means your GI shouldn't be setting massive store by your CRP result right now. The SED rate doesn't respond as quickly as CRP to inflammation, so that tends to make it an even less reliable test than CRP.

Choose the MRI if you can. With your history of cancer, I would not want to be exposed to any more ionising radiation than I had to! Also, the risk is cumulative, so the more CT scans you have the more the future risk of cancer rises. I'm 43 and my hospital never gives me CT scans. Only MRI scans. Frankly I'm surprised you're still being given CT scans, but I dunno what the protocol is with cancer survivors and CT scans.

I wish I could hurry up your hospital for you, but I can't. Maybe a course of steroids or a stict elemental diet might tide you over for the next two to three months? An elemental diet certainly won't be fun over Christmas time but it would be worth it if it worked.

I don't mean stay on an elemental diet for the rest of your life. That would be grim and inhumane. But in the meantime, you've gotta to schedule a test, wait for the test results, schedule an appointment with your doctor, agree on a treatment, wait for treament to kick in. That all takes time. Most biologics take 6-8 weeks to start working. I was being pretty optimistic with 2-3 months to be honest.

It does sound like the elemental diet works for you while you're on it but stops working when you stop it - which is pretty typical for Crohn's and diets. At any rate, it's just a suggestion for avoiding, or delaying, permanent damage to your intestines whilst waiting for treatment.

Jacob, I remember some of your previous threads about your cancer treatment. Did you do any radiation? If you had radiation generally they will not do colonoscopies until about 6 months out from the last radiation treatment. When someone has radiation it takes a good while for things to heal inside.

I am with NCOT about having an MRI done instead of a CT. An MRI is far more definitive than a CT, plus you really do not want more exposure to radiation given your history. I totally get wanting something done now, but at the same time when it comes to testing you want to get the best available.

Take care.

This must be terribly frustrating for you. Obviously, we know our bodies best, and that’s frustrating when the doctors who don’t have to deal with the pain and other symptoms tell us things are fine. I’ve had difficult to diagnose disease my entire life. Every few years it’s gone the same way: I get symptoms, they order all the same tests that don’t show a thing, give me Entocort, and it gets better. My disease is in the small bowel, and it doesn’t show with colonoscopy, EGD, CT or MRI. Never. Blood tests either. The only way they’ve seen it is with a double balloon endoscopy as well as a tagged white blood cell scan. Perhaps these would help you?

I also think if you cannot get into your doctor or if he/she will not listen to you, it’s tine to move on. It’s frustrating, and then you’ll have to go through the whole learning curve of a new doc again, but it could be worth it if you get someone who will listen. Best of luck to you.

Hey All...

An update of sorts. They finally agreed last week to allow me to have a CT scan. I had it last night, and was called by my Doc's PA who I usually deal with who told me that I have active Crohn's in my entire remaining small intestine (not any specific spot, but the entire thing is inflammed). They also said I had some enlarged lymph nodes surrounding my intestine, but aren't worried about cancer yet until they can get my Crohn's under control. With me just dealing with small bowel cancer this past spring, it is a concern in the back of my mind.

The funny thing is... they have finally agreed to let me on prednisone after requesting it since a week ago.

I get that they are people and probably just swamped... knowing my GI, he is the most requested in the state for a reason. I just get upset when I am not being believed that there is active disease, and now I feel vindicated because I now know I wasn't crazy. For a bit there, I thought I may be.

Thank you all for your support... going back down this path again after months of remission since stopping chemo August 1st. I am sure I will be back on a biologic soon, as well. I really hope we can get control of things, though.... and fast....

I had a similar experience when my PCP refused to believe that a perianal lump was an abscess (he kept insisting swollen gland). I went to the ER the next day and was rushed into surgery, but I was already septic and almost died.

JakeB: I hope that your docs would all sit in the same room to chat. It may help. And I’m sorry you are struggling with the fear of cancer returning as well as Crohns. It must be so difficult to just go about daily things. Hang in there, and I hope the prednisone gets you some relief.

Hey all... just a quick update....

The big battle has been trying to regulate my large intestine. I have been trying the miralax, dulcolax, and now senna... and the issue is while they have helped with getting things cleared out initially, after I start eating food again things get backed up and don't move properly. I start to feel uncomfortable, a bit bloated, and pain sets in. Today, for example, I had to dig into my small bit of oxycodone I have left at home to settle down the pain... which of course isn't great either because that slows things down.

I am left with a big question mark of how to resolve this. I messenged my docs again tonight regarding this. Do I have to resolve to taking senna with every meal? That can't be good for my system. The best my docs can tell me is "trial and error" for me with this... but I either end up with too loose stools or not enough moving through.

Could this also be something I read called "pseudo-obstruction" that is happening, due to damaged intestine from my surgeries? A lot of those symptoms, including having nausea pretty much consistently since my surgery, as well as this backup issue... are major ones. The did ask them about that, but I am sure their answer is "unlikely" to me. Just seems like something that could answer why I am constantly having issues and motility in my large intestine is just anemic (that is where the food is just sitting and not getting jolted out... doc things it is backing up into my small and causing some distension).

Anyone have any ideas?

Jacob

cyclinglady: I am actually in the hospital as we speak trying to figure out my issues. It looks like it is a nasty flare afterall. I went to a different ER and health system due to my frustration. They have thus far set me up with a new GI, surgeon, oncologist, and pain management doctor while I have been here the last week. We are waiting for me to be able to get a small intestine lymph node biopsy to check to see if there is any cancer in them, prior to starting me back on a biologic.

All this took was me switching, but this switch has made for some great care outcomes. I have been super impressed with all the staff and how they all take so much interest in my well being. This is such a relief and so rare these days.

I will keep checking back, but overall know I am in the right place. Thank goodness.

An update: This is a Crohn's flare, and have been admitted since the 29th. Just did an MRI today to see if my lymph nodes shrunk at all or are remaining the same. If they haven't progressed or done anything, they are going to start me on Entyvio again. I was on it for 2 months after Tysabri stopped working, but that was also around the same time that the cancer started acting up. I also don't think Entyvio had enough time to work. They are doing a dual therapy with Entyvio and 6MP. They wanted to do a biopsy of the lymph nodes around my small intestine, but are very scared that they are going to cause more harm than good... so my new GI doc is comfortable putting me on Entyvio verses doing another surgery at this point. However, they will monitor me closely to make sure cancer doesn't come back.

I was also assigned a pain management doc while here... first time that every happened... and I am so happy about it too. The ironic part of it all is that my mother in law told me about her last October when I was having issues... and suddenly she was assigned to me while here in January. I guess it was meant to happen. They have me on Nucynta for pain, ever 4 hours. Amazing that it is a narcotic, because it does feel totally different. Less stomach issues, less euphoric issues, and supposedly less chance of getting addicted. They also started me on gabapentin, and have been titrating me up almost daily... at 300 mg now. Another med she has me on is savella, every morning. I guess it is a trifecta of things to help with my body pains. She thinks these will be better to manage my migraines as well, than the nortryptiline that I am currently on for my migraines. Overall, I think letting her manage all my pain based ailments may be wise so she can adjust each medication accordingly. I see a neurologist for the migraines, but he is at the health system I am leaving and I think it would be better to have one person manage this stuff than two intertwining with similar meds.

I am unsure what this pain is still about. It is better than when I arrived, but it lingers. I wonder if I just have scar tissue in there from all my surgeries that is causing this pain, and I may indeed need help managing it moving forward. The constipation issues seemed to resolve, however, with the IV steroids helping calm my disease... so my new GI is right on.

At the recommendation of the new GI, I am also seeing a doctor in Chicago who is supposedly one of the best in the country for care of Crohn's, so I can get some good second opinions and have a second set of eyes watch me. I love the fact that they are now treating me as a person, wanting me to feel better... whatever it takes to get me there. This is the way a doctor should be, and I have missed it for so many years.

Straydog... the funny thing about this doctor group... is I found out that they send patients who they can't help, to the doctor I am leaving. One of their PAs who saw me kept trying to talk him up, saying he is the best. I just said "well not for me". She didn't know what to say to that. I have a feeling the doc I am leaving is stretched way too thin, so the personal touch is gone, as well as the thoroughness. They have been relying way too much on the blood work and even CT... gotta be thorough with my difficult case!

The great news is that the lymph nodes shrank in the MRI I had last night, and disease activity is also down. IV steroids was the right course of action to get things somewhat under control, until they can get me back on Entyvio. They started me on 6MP a couple days ago already. I should be able to go home tomorrow.

I sent a glowing letter to the new medical system I am going to moving forward, complimenting the team that has been on my case. They deserve to be recognized for such great personal care. With healthcare the way it is right now, I am very lucky.