Getting my GI doc to take me seriously

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Amberaut

Joined
May 16, 2011
Messages
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For about 6 years I have managed my Cronhs on my own. Partly because I had really bad insurance and didn't make much money. Last Sunday night I had a bad flare, and still am. I went back to the doc last Tuesday. He put me on Asacol and an anti-spasm med. But I am still having in a lot of pain, still having diaherria, and I can't eat. I called the doc yesterday morning, and they said Rey would call me back. But at the end of the day they still hadn't. I called back and got to talk to Crohns nurse, she took a very detailed message and said she would call me back after talking to the doc. Never heard anything back.
I had a really bad night last night. I have lost 9 pounds in ten days, and have had an increase in blood in my stool. I also think I am dehydrated. I have to work, but it's taking everything just move this morning.
I feel like they aren't taking me seriously. How can I explain to them so they will listen to me. I get the feeling that the nurse thinks I am trying to get out of work. I have worked since I was 16, full time since I was 18. I want them to make me better.
How do you get your doc to understand?
 
Maybe they are just terribly unorganized or really bad at returning calls? It seems really strange that they would think you were trying to get out of work. Any doctor or nurse who works with crohns patients should know better. If it were me, I would call up and really give it to them. Explain in a very firm, but not angry, way that you have been told twice that you would get a call back and they haven't and that you are really having a hard time (tell them specifically about the blood, dehydrated, etc.) and want to speak to someone right away. Maybe it is time to switch doctors? I have only gone to two GIs since my Crohns diagnosis, but they always took my concerns, calls and questions seriously. Good luck - let them have it!

Beth
 
I don't know where you live but I was having a hard time with my GI returning phone calls as well and wanted to see someone else (he wasn't refilling my medication). After seeing my GP about it to see if they would prescribe my meds (which they could not) I got to contacting the referrals office to see how the new doc hunt had been going so I could get my meds. The lady who does referrals called me back and asked why I wanted to see a new doctor and I started crying over the phone about what a quack he is and how he's killing me by not giving me my meds. She said to calm down and that if I don't get what I need in an hour, to give her a call back personally (she gave me her direct line). About 5-10min later the pharmacy calls saying my prescription will be ready in a half hour. Groovy. Apparently the woman from referrals verbally beat the crap out of the nurses at the GI office and my GI doc. I got a 2 month supply instead of just one this time too.

Moral of the story, don't let people walk all over you. Keep calling, tell them you're bleeding and cry your head off if you can over the phone. And if you're in the same location as me then you can do what I did and go through your GP to get in touch with the referrals office or maybe just try calling the referrals office anyway. In the meantime, shop for another GI doc cause this one sounds awful. I've been through many different ones and only one was worth a damn.

Also, do not hesitate to go to the ER with or without insurance (I've always gone to the ER if I was bleeding). They should give you paperwork on how you can pay in small payments or what insurances you can apply for if you're uninsured (where I am you could apply for CMSP right away and they would pay for that ER visit with you having a very small share of cost).
 
must be very frustrating think i would do as said above perhaps try and source another Er evan if its just for a second opinion... the right doctor with this ilness acts very fast and makes sure your very well looked after
 
Hi Amberaut!
Find a new doctor! I know thats easier said than done. But it's so important to have doctor that takes you seriously and genuinely cares about your well-being. It makes me mad to read about stuff like this. Having Crohn's is hard enough without having to deal with a doctor that tells you you're just trying to get out of work (Ridiculous!!) or that "It's in your head" ect. I used to have a GP like this. Thankfully my GI is a very good one. Good Luck ~Niki
 
Thanks everyone. They did call yesterday and set me up for a colonoscopy Monday. I told the nurse about how bad I hurt Tuesday night, and she said that the doctor wants to see what's going on before he puts me on any more meds. So I get to suffer until then.
He had told me to start taking Philips colon health, along with my meds. But the night this flare started I had taken Align for the first and he thought it could have had some hand in the flare. So today I am not taking the Philips and see how I do.
As of today I have lost 10 pounds since the Sunday before last. And everytime I eat I hurt for about 2 hours after, and run to the bathroom the whole time. My whole body has tenses up. I'm exhausted and really don't feel like even having to deal with this right now.
I got to work today, so I am going to try for a little nap before I go.
 
Glad you're getting a scope done and its not too far away. In the meantime if things get way too bad then please go to the ER for treatment. You don't want to have a blockage or any other nasty possibility. Be safe and keep us posted on your scope results and how you're doing.
 
Got my procedure bumped up to tomorrow. I started getting dizzy and my heart was racing. My legs have been feeling weird too. I called the office and it took them about 3 minutes after hearing that to schedule me for tomorrow. I am drinking the prep now. Little nervous cause I don't want to hurt.
I go in at 1 my time. So I will update once I can. Thank you all for the well wishes.
 
I do that too... It's not uncommon, especially if you have active inflammation. Give yourself a little more time between each glass of the prep.

Sounds like you are having a terrible time... Have you talked to your Dr. about doing a small bowel series? or a CT abdominal scan? Also, you should ask the GI to be sure to get into the cecum, as this is often where CD will present itself. Often a colonoscopy won't show anything with CD, unless it's pretty advanced. I have had 4 colonoscopies, and the 3rd showed a little ulceration at the cecum, and an ileocecal valve that was pretty trashed. The 4th scope, the GI could only get to the sigmoid colon, due to an obstruction.

Take it easy, and get some rest if you can... I know it's tough when you have to poop every ten minutes!

Good luck tomorrow! :)
 
If they don't find anything with the colonoscopy then chances are they'll do an endoscopy and a barium swallow with x-ray.

Do your best with the prep. You need to run clear. After that, its just torture for no reason. Do your best. I've thrown some of it up before too so you're not alone. The stuff just backs up so there's most likely some narrowing going on somewhere.
 
I ended up throwing up more of it last night. But it was already running clear last night. So far this morning the only thing I have passed has been water or blood. Drinking the second round now. I'm so thirsty and this stuff don't help at all. I just want this day over with.
 
I am home now! So happy to be able to drink water again. The procedure went well. I woke up fairly quickly. And drank 4 VIPs of water. Big mistake. I vomited it up in my driveway. But ob to the good stuff.
Before they said I had mild crohns colitis. Now I have been upgraded to moderate to severe. My pics look awful! The doc told my sister that I am too young to have to have my colon removed, so he is going to treat it agressively.
He is putting me back on steroids, strong ones. Also embrel. I guess I have to go in to the office for that one. There was another med, but the pharamacy they can no longer get that one. So I am gonna to get in touch with his office ASAP.
They also took some biopsy. So I am to take it easy this weekend. I just glad that now they know this wasn't in my head.
Thank you everyone!
 
So glad you were able to get in so quickly. Sounds like they are finally taking you seriously, as they should! Sorry that your results were a mess, but sounds like they are treating you well. Was it Methotrexate that the pharmacy didn't have? There is currently a shortage of the drug. It has actually been making big news because it is also used to treat a form of pediatric cancer. I'm also on it, and had trouble getting my refill. Feel well :)

Beth
 
CrohnsNYC said:
So glad you were able to get in so quickly. Sounds like they are finally taking you seriously, as they should! Sorry that your results were a mess, but sounds like they are treating you well. Was it Methotrexate that the pharmacy didn't have? There is currently a shortage of the drug. It has actually been making big news because it is also used to treat a form of pediatric cancer. I'm also on it, and had trouble getting my refill. Feel well :)

Beth
Click to expand...


It did start with an M. But I could read it of course. And I don't remember talking to the doctor at all. The pharamacy did say it was mercury based drug. Apparently I did ask him if I could bring back the samples of Asacol since it doesn't work for me and he said yes. That stuff is expensive.
 

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