Why doesn't my GI believe me?

Since June, I have had softer BMs once or twice a day, some cramping, and weight loss. I felt I was starting a mild flare.  My GI disagreed and thought I was doing great. 

I have continued to lose weight and some days the pain is stronger.  BMs have not increased but have some mucous, what looks like small pieces of skin and occassionally a small amount of bright red blood.

I called my GI last week and he again does not think it is a flare and suggested I take immodium. I took 2 immodium for 2 days but started to get constipated so stopped (I have D as a rule)  

I'm going to call the GI today to make an appointment to see him.  How do I convince him I am not fine.  I don't want to have a full blown flare because we did nothing. Would a short dose of pred nip this flare?  Is there anything I can do to help myself?

My GI is part of a large GI practice (12 doctors) and there aren't any other GIs nearby.  The practice does not allow patients to change to another doctor within the practice.

I take 4 Apriso, transdermal LDN, l'glutamine, florastor, Metamucil (6 caps after supper) and various vitamins each day.  For cramping I take generic Hyociamine (sp?). 

Anything you can suggest?  I am really getting anxious over the whole situation.  I have no family nearby to talk to and my spouse is dealing with his own health issues.  I am starting to withdraw from everyone and everything because of how I feel physically and because of how I feel emotionally.  This disease robs us of so much.  I'm sorry to be so whiney when I know so many of you have it so much worse than I do.  Sorry  to be so wordy.  Thanks for reading this and taking the time to respond to it.  God bless.

After having many different GIs (wow I feel so lucky to live in an area with a wide choice of GIs), I can say that they all have very different approaches to care. I have had the aggressive doc (wanted me on serious meds despite my lack of symptoms or spread of disease) to the one who seemed to forget about me because I needed so little attention. I finally found someone in between who treats my symptoms as they come and to the level of get me to daily life success (Goldilocks comes to mind!).

I knwo that the practice says you can not change docs, but you are the customer. They need to know this. First...get in to see your doc as phone calls don't seem to convey your concerns (the weight loss should be a big note). Explain that you need more maintenance to get stable. Then if that does not seem to meet your care, advise him that you would like to see someone else in the practice for another opinion.

I wish I could give you more...but thanks for making me appreciate my choices more!

Sorry to hear you are having such stress. I can understand why you would though. The first doctor I went to was absolutely awful, didn't listen to me at all and the second wasn't much better. In my opinion finding a doctor who you feel is knowledgeable and listens to you and talks to you (not at you) is a top priority for anyone with a chronic disease. Having stress over the doctor in addition to the stress of having the disease isn't helpful.

How far away are other GI doctors? Maybe you could contact the office manager in the practice you are going to now and tell them the situation and explain that they will be losing you as a client if they are unwilling to help you find a doctor you are happy with.

You know your body and the way you feel better than anyone else - be an advocate for you health. Good luck, I hope it works out for you.

Hello there. Sounds like what I started going through a few months ago. He thought it was my IBS and not my Crohns so he added yet another medication to help me. I got worse. So I called and spoke to his nurse she said I needed to come back in. They repeated bloodwork and compared it to the bloodwork I had gotten done just a month or two before and it showed inflammation so he then told me it was my Crohns flaring. I too tried the immodium and it stopped me up and caused pain and bloating. I also had alot of that stringy mucous stuff and occasional blood. That being said, mine is in flare and I would be surprised if yours wasn't. I don't know why your dr. doesn't listen to you. I think we know our bodies and symptoms and are pretty good in figuring out what is going on. Granted sometimes my issues are IBS but the inceased problems and symptoms usually always point to the Crohns. He has increased my Humira from once every other week to every week. Still having some issues but things slowly getting a little better. Good luck hope you get the answers you need and feel better soon!!!

I agree with previous posts, lots of good advice.

Hi laurie, welcome the forums. You can set up a signature by going to My Profile/Edit Profile and at the bottom you'll see the option to set up a signature. Add what you'd like to there, then click on submit.

Have you given any thought to adding Imuran or 6MP to your drug regimen?

You are on some fairly mild Crohn's meds and seem to be doing relatively well w/them and maybe they could just be given a little more "lift" w/Imuran or 6MP. But that is for long-term.

For now, much as I hate steroids, it might be worth asking for a short term taper w/Entocort EC. Something like 3 3x a day for a week, 2 3x a day for a week, 1 3x a day for a week and 1 every other day for a week.

Good luck and God bless.

I think that empathy with your doc is absolutely essential. In the city I live there are about 8 docs who deal with IBD confortably. Most GIs are not Ok with it. We are demanding patients! and tricky. They simply don't know about it in the needed depth. It's just like that.
And they start stacking meds - remi, pred, pentasa, antibiotics, entocort - sometimes all at once! They are as lost as we are. It's simply NOT a plan. In my city there are good docs, but I'm still lacking the emphaty part...
That's why I take a plane. I'm thankful I can afford it, and I feel for those who can't.

But if you can travel to find a better doc, do it. If you lack indication, talk to a belly surgeon. He is likely to know. The magic word is a GI that is also a "IBD Specialist".

REMEMBER: MOST GIs DON'T LIKE TREATING IBD!!!
They just fret... because they are facing their own incompetence.

My two cents...