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Is my GI throwing me away?

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Crohn's Disease
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Posted 6/10/2009 12:14 AM (GMT 0)
Hi All-

I haven't been on here in a long time. I have been reading, but not posting. I don't know what to do. I had a baby two years ago. I have been in a constant flare for most of the two years. My dr has tried prednisone, entocort, pentasa, and Remicaide. I gained 70 lbs on the prednisone in three months. My disease only progressed. I have been on the remicaide for 13 months and now it is no longer working for me. I refuse to settle with sleeping my life away. I have two small children and I want to be active in their lives.

I asked my dr about other options such as Humira. He won't listen to me. I called yesterday to tell him that I am super tired, horrible joint pain and I wanted to talk about other options for medication. The nurse called me back today and said the dr can do nothing more for me and I can contact a research company and try and get into a study for crohns. I'm shocked. I feel like they want me to settle and be sick forever.

I have worked hard to lose 60 lbs since last July. I felt great on Remicaide for about 6 months, so I know what life I can have with the right meds. I am sooo tired and I want relief. I wanted to find a new dr, but my mother is weary. She doesn't want me to over react. I am ready to pull off all of my medications and treat myself with diet, exercise, and rest. The problem is I don't feel that that is the answer.

My dr won't even see me to discuss any studies or other medications. I do not want a study because my husband and I don't know if we want more children and experimental drugs worry me for my future children.

What do I do? Do I find a new dr or settle for being this sick forever? I know this sounds extreme, but I feel dumped. I feel like my dr should talk to me. My friend says I should confront him, but I am soo tired of fighting a losing battle.

Any advice is welcome. If I am wrong then I will be ok with that, I just need some advice.

Thanks a bunch!!!

Kgirlie

Posted 6/10/2009 12:17 AM (GMT 0)
Your doctor SHOULD talk to you, and I think that's what you should tell them. A patient walking is not good for them. You deserve better treatment, and I think it is absolutely vital to have open communication with your doctors. If they don't listen then they aren't worth it. Your health and time are worth much more than that.
Posted 6/10/2009 12:17 AM (GMT 0)
new DR...you don't pay to be treated that way. Good luck.
Posted 6/10/2009 12:48 AM (GMT 0)
<disclaimer: just my opinion!>
Unless you live in a teeny town with no access to another GI, you should run and not walk from this doc. It's simple. You're not getting helped. Why try to win him over or play out another round? It sounds like he's been doing a poor job of providing you options and his success has not been great. You want to confront him? Cool. Do whatever causes you the stress relief you need and move on. Send him a bag of poo, or make a voodoo doll! whatever. You're not in a relationship, he's a doc. Move on and discharge all the stress however makes your happy and laugh.

The best use of your energy is to immediatly stop thinking about this person and spend your energy finding the absolute best doc you can for YOU. It sounds like you're a real go-getter in terms of your life -- a weight loss of 60lbs is amazing. Use that same focus and disipline and find the best practitioner you can. If you have insurance, the worst doc and the best doc basically cost the same. Find the best doc. I think you've already covered the other end of the spectrum!

Sometimes it takes me 5 or 6 docs to find a specialist i like. This is about what works for you, not what works for them. You go girl.
Posted 6/10/2009 12:56 AM (GMT 0)
ps: if it makes you feel any better, I think I got fired by my GI at my last appt. What she'd given me (pentasa etc) made me worse, not better. I switched to LDN. Got better. She said it was a placebo effect. Then she said she would not schedule another follow up appt with me until I scheduled an EXPLORTORY SURGERY.

er, right. In the words of the immortal Soup **** (oops i got bleeped! Naaazzi)

NEXT!
Posted 6/10/2009 1:02 AM (GMT 0)
I agree different GI you have more meds you can still try...
Posted 6/10/2009 2:54 AM (GMT 0)
Since joint pain is a big issue for you, I wonder if you might benefit from methotrexate. It could be worth a try. Another possibility is enteral nutrition, if you are willing to stick with a liquid diet for several weeks to try and induce remission, and then use it as a supplement to maintain remission.
Posted 6/10/2009 3:01 AM (GMT 0)
I would not put up with that-the doc should have called you himself not just had the nurse call and he should have been willing to talk to you about treatment options even if only to tell you why he did not think they were your best option.
Posted 6/10/2009 4:02 AM (GMT 0)
Dump the jerk. You could probably do better w/no gastro at all than this guy. There ARE other meds besides Remicade! Methotrexate as mentioned, Humira came to my mind first. Enbrel? My gastro is good but she is so difficult to get an appointment with I often bypass her and just work thru and/or with my family doctor unless I really need something only a gastro can provide.
Posted 6/10/2009 5:04 AM (GMT 0)
I have seen at least 5 Drs about my Colitis/Crohn's. Initial diagnosis, two others for 2nd and 3rd opinions. Both had the exact same info as Dr. #1. Dr. #1 was okay and we had minimal results with treatment, but then I saw our medical clinic expanded with a GI specialist and I requested to be seen by him (Dr. #4). He founded the GI / Colon / Colitis / Crohn's Society of Georgia, so I figured he would be *up* on the latest and greatest of meds and treatments.
But we just didn't hit it off.
(though he is now my husband's GI specialist for yearly upper/lower endoscopies and we get along fine)
I was unresponsive to the meds HE felt comfortable trying with his patients and in order for me to be treated more aggressively he referred me to the Head of the Department at Emory Univ. Hosp. in Atlanta. I *love* this Dr (#5).

She has given me the best treatment, she *listens* to me, we discuss treatment options and I feel like I am an active part in our treatment of my disease. It all boils down to: I trust her. I do not think I could have a better Dr than her. We tried the less dangerous drugs, tried massive doses of steroids, tried oral chemo and I had a bad reaction (jaundice), switched to Remicade and I finally had surgery (Surgeon I guess I would count as Dr. #6?) last year to remove a portion of my colon. I'm feeling very good, now, but we also changed my treatment meds last fall to MTX (methotrexate) and I've had the BEST results with MTX.
My husband also suggested a probiotic he saw at WalMart, called Align, but I thought $30 was too much money to spend and we bought a $12 bottle called "Colon Health". I've found I do best taking those capsule 12hrs apart, so I'm spending $25 a month anyways...perhaps when I next need to purchase another bottle, I'll get the align. I'd like to be able to take less pills and not have to remember every 12hrs.
The benefit of taking the probiotic in addition to giving myself MTX injections once weekly, is my stools have firmed up and I rarely have "burned butt" (like diaper rash) from the more liquid excretions scouring my tender skin back there.
Can you do some research about GI Drs in your area, find one you wish to be seen by and request a referral from your current Dr? If HE isn't going to actively treat you, the least he can do is refer you to one who *will*.
I wish you the best of luck locating a Dr who would be good for you.
heidi
Posted 6/10/2009 11:34 AM (GMT 0)
Get a new GI, you should not be treated like this. Rememeber that they work for you!
Posted 6/10/2009 3:41 PM (GMT 0)
My personal experience is you need a NEW gi asap! A few years ago my gi said I reached the limit of his expertise and I need to either go to Pittsburgh or Cleveland Clinic. I chose UPMC Digestive Disorders Center and have no regrets!
Posted 6/10/2009 4:14 PM (GMT 0)
Absolutely agreed w/everyone else. I've been through a few myself, and you just have to be patient and find the right fit for you. Fortunately the doc I have now is VERY modern... he's even the one heading up most of the clinical studies at the University. I feel confident knowing he has a trick up his sleeve when it seems all else has failed. Thank God. Don't give up hope... I once "quit" my GI, made an appointment w/another that was recommended by someone, and found out she doesn't take Crohn's patients! What gastrointerologist doesn't take someone with Crohn's Disease??? Anyway, it ended up all for the best, because she referred me to my current specialist. Find someone else and make sure they are willing to try anything and everything for you.
Posted 6/10/2009 5:01 PM (GMT 0)

Fire that doctor.  don't just stop seeing him, pick up the phone and tell his office that you are going to see a doctor that has the expertise to treat me and get me well.

Then, go find yourself another doc.  You owe it to yourself to take care of your health.  If a healthcare provider isn't doing it and you know it, run don't walk to the next one.  There is a difference in doctors.

Also, your mom is acting way too passive.  Of course you don't look sick, right?  So you can't possibly be as sick as you say you are.  That infuriates me to no end.

Give us an update when you find the right doc and I wish you the best.

Posted 6/11/2009 3:48 AM (GMT 0)

Seems you could try Imuran, too. Sometimes you have to go through a few frogs before you get the right GI;) 

Posted 6/11/2009 5:49 AM (GMT 0)

Bluize said...

Of course you don't look sick, right?  So you can't possibly be as sick as you say you are.  That infuriates me to no end.

OH!  That annoys me to no end!  Makes me want to sit in their lap (no protective barrier) all day, so they can see *just* how 'not sick' I look. 

heidi

Go on.  Tickle me.  I *dare* you.... devil

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