Hematologist visit

Well that was a tiring visit! The doc was a young sarcastic snotnose, in my opinion. I feel sorry for patients who have cancer and have to deal with him as an oncologist. I wouldn't have cared that much about his personality, but I'm not sure he will be especially helpful either. He took my history and then left me sitting in the exam room for over 30 minutes while he went to review all my previous blood work. He came back with these fancy charts demonstrating that when I'm anemic my sed rate also elevates and when I'm not anemic, then my sed rate is practically zero. Therefore, he said, he believes I am in a Crohn's flare (newsflash there) and that my anemia is probably a combo of both blood loss and lack of absorption. He ordered some more tests that will look at bone marrow issues, and B-12 and folate, and iron absorption, and I will follow up in a couple of weeks. He highly doubts I have problems with my thyroid, celiac or that I have cancer, and he didn't think repeating the celiac blood test, or taking more thyroid panels were necessary.
So, I guess it's either back to my GI to get him to do something besides Pentasa, or getting a second opinion in Chicago, or both. I don't have another appointment with my GI until Sept 12, so I called his office and said I need an office visit to sit down and discuss my options before then. So the current plan is for me to get the SBFT on Monday, and then I have an appointment with the GI on Aug. 25. (earliest available) I really want to try a round of Prednisone for a month or so to see if that clears things up and gets me back in remission, and if that doesn't work, then consider biologics. I can't take immunosuppressives like 6MP because it caused elevated liver enzymes in the past. NCOT, I know you don't agree with the Prednisone, but it did seem to work once before. Currently, My GI doesn't want to do anything because I can't prove I'm having a Crohn's flare. I'm thinking that if he stays with that opinion, I'll ask him to refer me to U of Chicago, because I think I can get in faster if he refers. I'm tired and angry that this stupid anemia is ruining my summer and the docs move like snails.....so frustrated!!

NCOT, I know you don't agree with the Prednisone

Correct >_>

Nah, but seriously. Pred for a month or two won't do any harm. The danger with Pred is the symptoms returning before you are fully off it and then ending up being stuck on it. But Pred-dependency doesn't happen overnight; it takes a while. Also, some people get a more sustained response than others. Hopefully you'll be in the group which has a prolonged response to it. So... give it a go. But don't linger on it >.>

As for 'young sarcastic snotnoses', I'm afraid I've come across a few of those in my time. I'm sorry he wasn't more helpful; surely you must have had most of those tests (eg B12, iron absorption) by now anyway? :-/

I think at this rate I'd go for the second opinion in Chicago. Your GI seems to have either given up or is just not interested: precise opposite of what you want from a doctor. By all means see him on the 25th August, but it's definitely time for a second opinion now.

Thanks you guys! I'm fussing around in my head...lets see if I can put it into words. I'm wondering if I'm not really accepting that I have a chronic illness...maybe this is my new reality. I'm not terribly ill...anemia, more that the GI symptoms are more of an issue, and lots of folks here with Crohn's have anemia. I was just spoiled by many years of remission with perfect blood work (except for my adventures with c. diff and salmonella), so I keep trying to fight my way back to remission, and I suspect my docs think I'm nuts. If my Crohn's is mild, then maybe biologics is a ridiculous idea, and like NCOT says, Pred is evil. I just worry that if I don't change anything, I'm at high risk of getting worse.

Huckleberry, I'd be reassured that he doesn't think it's cancer, but his reason for it was that small bowel cancer is really rare...not your bloodwork doesn't indicate it, or something more re-assurring. Crohn's is rare...so I don't know that he really made me feel better. But, except for when I'm in a paranoid state, my logical self doesn't really think it's cancer either.

And I was irritated that he wouldn't re-test for celiac or do more thyroid, but I guess I have to trust that he knows what he's doing there. I think Kazbern is right and it's time to try gluten free again, but I don't seem to be emotionally ready to do that quite yet.

Thanks for listening....I need to re-group and think about all of this!

Gumby, sorry it did not go as well as expected. however, I did "hear" some similar things from the "snotnose" hematologist that I heard from my hemo this first time I saw her. No cancer, no need to retest for celiac or thyroid. the absorbtion is the issue that we have. sounds like you have same issue.

as far as doctors, I left my GI of many years-in fact went through resection surgery with him-because he did not believe I was sick after 6 weeks of surgery. I needed someone to listen to me and talk at my level. I had to do the same with my cardiologist, going through 2 different one until I found the ONE. this guys even came to see me everyday I was in hospital with pneumonia even though I was not admitted by him!

what makes all of this possible is I have the best primary care doctor. She has been selected by her peers as one of the top 100 doctors in NC and has been for 7 straight years! she helps me with all decisions and selections of doctors and she follows up with each and everyone of my visits to them. I have been with her for over 14 years. I could not have gotten to this point and still be able to work without her guidance. Get this, she still finds time to work one weekend a month at the free clinic which she says helps her be sharp at quickly identifying sickness and injury.

All of this says, find a new doctor or group of doctors that will work best for you. this is the most important thing you can do to improve your health.

I'm wondering if I'm not really accepting that I have a chronic illness...maybe this is my new reality. I'm not terribly ill...anemia, more that the GI symptoms are more of an issue, and lots of folks here with Crohn's have anemia. I was just spoiled by many years of remission with perfect blood work (except for my adventures with c. diff and salmonella), so I keep trying to fight my way back to remission, and I suspect my docs think I'm nuts. If my Crohn's is mild, then maybe biologics is a ridiculous idea, and like NCOT says, Pred is evil. I just worry that if I don't change anything, I'm at high risk of getting worse.

I really wish I could give you some definite answers to reassure you, but one thing I don't think you are for a second is nuts. Or 'wrong' for wanting to feel better! Truth is, I felt rather similar to you for a long time. I knew I didn't feel very well, but it was hard to put my finger on it a lot of the time. Fevers were the most blatant sign, but I didn't always have those. Meanwhile, I didn't have bloody diarrhoea or diarrhoea so bad it kept me housebound; wasn't in bad pain; no fistulas or (at the time) strictures.

Doctors weren't exactly overly concerned either. And that dented my confidence. I felt like if they didn't take it seriously, why should I. But truth is, doctors get jaded. Unless it's something which really stands out for them, they will just blip right over it. What ruins your quality of life for you is nothing to them: too many patients, not enough time.

In my experience, the people who do the scopes have been more concerned about my case than the doctors (present one excluded). Okay, just thought of a silly, non-Crohn's, example. Years ago, my mum developed what at first she thought was a summer cold, but which went on and on. This lasts for months. She goes to the GP who brushes it aside as a virus. Eventually, by sheer luck, she spoke to a nurse about her symptoms, who instantly said it sounded like an allergy and recommended Benadryl - and that, of course, was the answer.

It's not going to be that simple for you, unfortunately. But I do think with a doctor that isn't complacent a lot more could be done. I'd actually recommend my current doc if I could; he still seems to actually rememer that the point of being in medicine is to help people (on top of earning a huge salary).

My GP has also been pretty good. Doesn't have quite a glorious halo as mirowpl's PCP, but he's good all the same. He's helped me out more than once. I don't really know how PCPs work in America, but GPs are rather important here, in that they are your stepping stone to everything apart from A&E. Anyway, the more docs you have on your side the better.

Sorry, this was probably rather a useless post on the whole... :-/ But I'm on your side and willing you to get better.

Thanks you guys!
NCOT I so appreciate all your input and support. I am still getting the occasional low grade fevers (99F) or so, but again, the docs just shrug when I mention it. So I have low grade inflammation markers, low grade fevers, fatigue and very low iron stores and anemia...something is going on. You are right that I need to quit doubting myself...I'm not making this stuff up. It just feels that way sometimes when I lose my confidence.

Crohnie Too-I've left messages a couple of times over the past few months at U of C and they aren't even returning my calls. I can get more assertive, of course. I think I'll just wait a couple more weeks and do the SBFT and blood tests the hematologist ordered. I'd hate to pay out of network insurance if I can avoid it. I need to check, but I think if my GI orders the second opinion, I may get better coverage too. Thanks for your help!