I think my GI has gone off the rails!!

Hi gang,
I'm soo tired and frustrated! I went to get my pill cam results. They came out completely normal, but I still don't feel well and the last fecal occult test was positive for blood, I'm anemic (although not severely) and I told my GI that this morning my poop looks black and tarry, so I suspect I'm still bleeding. So he suggests that he send me to Mayo Clinic, because he doesn't know what is wrong with me, and there, I can see a bunch of specialists to try to understand why I feel so tired. He seemed to imply that my problems are not Crohn's-related. I was more than a bit shocked, and asked if it didn't make a whole lot more sense to do a colonoscopy, since I haven't had one since October 2011. His response was that the last one looked good, but he was willing to do that if that is what I wanted. He is also ordering more blood work in a week and I requested that he repeat the stool tests. So here's my questions for all of you brainiacs out there:

1. Can your colonoscopy change significantly in a year's time? I would think that if I was not in a flare last time, and now I am, that it may look markedly different?

2. Do you think I need to see other medical specialists? The only abnormality on my bloodwork is anemia related, a slightly elevated sed rate and normal CRP. It seems like Crohn's...I don't understand why I would need Mayo clinic??

3. If I get a second opinion, I'm thinking of going to a Crohn's specialist, like Dr. Hanauer from U of Chicago, but not Mayo to look for mysterious other illnesses.

I was fine until a month ago, and besides all of my GI complaints, I don't have symptoms of anything else, besides exhaustion.

Please help...I feel like I'm losing my mind!!!@!

Hi Kazbern,
My Crohn's is in my terminal ileum...so it is unclear to me if that would be seen better on a pill cam or colonoscopy?? He seemed to say that maybe I'm just bleeding from internal hemmies, but I see no bright red blood, and I've never had bleeding hemmies ever, so that makes no sense. I think he doesn't think mild anemia should make me this tired....I don't know, I'm lost and confused. I do have a colonoscopy scheduled for June 3. I just wanted HIM to figure this out instead of me. Mayo really seems insane to me prior to at least a repeat colonoscopy. I don't know if I want biologics, but I do want to figure out what is going on.

I definitely would go to a chrons specialist. I had a GI doctor that knew close to nothing about chrons. He actually told me he had to hit the books again to help me with my case. So we were both on a trial an error basis. But that also taught me that I had be on top of my own condition. I think a lot can change in a year!! So it's good you're getting your colonoscopy! I had colonoscopy done wit minor crohns scarring 3 months later I had a full blockage!! So yeah!! Now I am with a chrons specialist with one of the best crohns hospital in NY.
Mt. Sinai and my treatment is going much better !!!

Thanks everyone for your responses. Ides, in answer to your question, I'm posting my labs from 11/2012, when I felt fine, compared to my most recent labs from 4/13:

11/12: 4/13:
HGB: 13.1 HGB: 11.4
HCT: 39.6 HCT: 36
MCV: 90 MCV: 77
MCHC:33.3 MCHC: 31.7
IBC Saturation: 24 IBC Saturation: 9

So I know these labs aren't terrible, but there is clearly a downward trend. And I don't think this is hemmies that I don't feel and don't seem to be bleeding. Any advice is appreciated

Didn't have time to reply to this earlier; had to rush off.

Just wanted to wish you good luck, gumby. Can't really add much else to what has already been said, tbh. But I do want to say that having a clean colonoscopy two years ago is meaningless: the picture can change within a month, let alone two years. Also, have you had a faecal calprotectin test?

I had a scope in march 2007 everything was perfect this was before my crohns dx, skip forward one year and I am down to 108 lbs and in full on Crohns flare and my GI did not want to do a scope because I just had one year ago. Well in the end he did one and I was dx with Crohns

Gumby44,

I'm the same age as you and I've had Crohn's since I was 14.  I've been lucky to have only had three bowel resections, the most recent about 6 yrs ago.  I've been on just about every med available for Crohn's and I'm presently on Remicade and Methotrexate.  about two months ago I too started feeling bad, cramping, running low grade fever, tired, you know the feeling.  My GI did a CT which revealed some inflamation in my TI. (Where my Crohn's is).  But all blood test came back normal.  Fever got higher and a physical exam showed no tenderness.  I was sent to an infectious disease dr. who ran a boat load of blood test and others...everything normal.  Fever went away for about three days and then returned at 102.5.  My GI said lets scope and I was lucky enough to get scoped four days later (last tues.) BINGO... the last portion of my TI is an abosolute Mess, his words and the pictures he showed me were indeed bad. It's bad enough that surgery is on the table because the Bio's are not working. He wants to measure how many feet I have left before we cut.  Sorry for the long lead but I agree with others, you know your body better than any Doctor and if you feel something is wrong, then something is. Make them keep looking.  Make sure you have a GI who is in to Crohn's. As you've read above it's possible that everything looks normal when it's not and it took the scope to find mine. It would be better if they could scope you a little sooner. And I know it's hard not to get depressed with this Disease but prayers and the right Doctor will get you feeling better and it will happen.  Good luck and God Bless.

 

Calprotectin is a protein which can easily be measured in faeces. Levels of it increase in diseases like Crohn's and UC, but are normal in IBS. Definitely worth getting done, although preferably with a GI who is familiar with the faecal calprotectin test.

I can't really comment on your red blood cell labs, as I don't know what most of them means :-/ A useful measurement in assessing anaemia, though, is ferritin and I don't see that there. Ferritin is a protein which binds to iron and stores it, so the amount of ferritin you have reflects how much iron is stored in your body. It is possible to have low ferritin before haemoglobin drops, since the body will do what it can to keep haemoglobin levels normal. My ferritin was 5 at one point, which is well under the lowest normal value. It was 65-ish last time it was measured, so well within the normal range now.

So yeah, it would be useful to get your ferritin measured, not for Crohn's, but for anaemia.

Other than that, all I can say is hang in there and wait for the colonoscopy. Crohn's can be a very tricky disease.

Thanks....I know the GI ordered ferritin, but when I picked up my results it wasn't listed, so I don't know if the lab forgot to run it, or what happened. I'm on my second day after the (very short in my opinion) 8 day Pred taper and I just had massive D. I don't know what to make of that except my broken record of saying I'm in a Crohn's flare. I live in a really small town, so switching local GI's is not an option, but I might go get a second opinion at some point. Right now I'm just trying to get out of trouble. I'm depressed and exhausted!!

Thanks...I'm kind of in a holding pattern right now....I'm waiting to either get significantly better or worse. This is such a difficulty and confusing disease to manage.

Hi Habs,
Thanks for worrying about me:) I cancelled the colonoscopy because I got frustrated and wanted to wait for my symptoms to either get better, in which case I could just move on and forget about it, or worse, so that he would find something useful on the colonoscopy. So I have gotten a little better...after the iron infusion I am on the low end of normal for all the iron deficiency levels and I'm eating better. But I am still completely and utterly exhausted by the middle of every day, and my constipation/D IBS issues seem like more of a roller coaster than normal. I actually have a follow up appointment with my GI tomorrow morning. It will be the first time I'm seeing him since he wanted to send me to Mayo and I refused. I'm kind of dreading the appointment, but he's a very nice guy, so I'm sure we'll sort it out. So, I'm still in a holding pattern.....feeling kind of lousy, but nothing is terribly specific. I'm still working and doing what I need to do, but kind of dragging myself around. I'll let you know how the doc visit goes tomorrow. Thanks for asking!

Thanks for the support everyone! I had my GI appointment this morning, and it went much better than last time. We didn't even discuss the whole Mayo clinic conversation, which was fine with me. Our plan is to take blood tests every month for awhile and keep an eye on my anemia. We are also re-testing my thyroid, which hasn't been done in a year.(Hmm, I wonder where I got that idea from:) If my anemia levels drop again, then we will do another colonoscopy, otherwise we are just going to watch and wait. His reasoning is that I can't take 6MP because I immediately had elevated liver enzymes, and both of us are hesitant to start biologics if the Crohn's stays mild. He does think my worsening C and D are probably Crohn's inflammation related, but he still thinks I should wait this out to see if it will stabilize. I guess I'm happy with the plan, but I do wish there were more options. So, I'm not getting a second opinion yet, and I'm just waiting it out. I realize that comparatively I'm not that sick, but I sure wish being totally fine was one of my choices! Thanks for supporting me and listening to me vent over the past couple of months....it's so helpful to know you are out there:)