Margie

[margie]

Hi Everyone,
I am new to this, so please bare with me. I have Crohns Disease and am very frustrated right now with not only the insurance that I have but also the fact that I can't find a good GI doctor that accepts my insurance and understands CD. I was hospitalized last week for 3 days with no food or liquids only an IV and pain meds. I am bleeding internally with an extremely distended abdomen and pain in the muscles, abdomen, headaches, and sores on my lips, diarhhea and vomiting. Seems like no matter which doctor that I go to they are all treating this like there is nothing they can do or know what to do or that it is all in my head. Sorry but so upset with the medical docs right now. I know my body and yet they are all just not doing anything or putting me on any meds at all to help this instead they are treating this like nothing is going on....Don't know what to do here.

 

[Dexky]

Welcome Margie! Are you on any crohn's meds? Sorry for the trouble you are having and I know it's an understatement but I hope you can find a good GI. Everyone needs a good GI!!!

 

[margie]

Dexky,
I am not on any meds. They didn't give me anything in the hospital with the exception of Morphine for 3 days and nausea meds. Sent me home with nothing for pain, nausea, or Crohns meds. This is so frustrating and I am tired of even going to bed or waking up in the morning crying in so much pain. Still bleeding and vomiting every day too. As far as a good GI, I don't think any of the GI docs in MI know or care about patients with Crohns, they don't understand or listen to what I am telling them. I had been through several of them before even being diagnosed and when the insurance ran out from the divorce, the one good one that diagnosed me said that he wouldn't see me anymore unless I got some insurance. Now I have insurance and still can't get help because the hospital may accept it but the docs don't. I am so tired living with this every day, it is really getting hard. I am so glad that I have found this site, to talk to all of you about this. Sorry just needed to vent a little this morning

 

[CrohnsNYC]

Margie - I am so sorry to hear of your troubles. That sounds just terrible. Does your insurance have a website where you can look up doctors by specialty? This is actually how I found my GI. If you are still having so much trouble (bleeding, vomiting, etc.), maybe going back to the ER would be a good idea. That way you can at least manage your pain. I had to go to the ER several times and requested to see the GI on call. That way I was being seen by a specialist and they were able to give me the proper medication.

Always feel free to vent. Sometimes that helps a little. Good luck and feel better soon

Beth

 

[margie]

ChronsNYC
I called my insurance company...they gave me a couple of names of GI docs that said they accepted the insurance and when calling for an appointment they said they don't accept the insurance anymore and the one that I saw in the hospital said that I was normal sent me home with nothing and doesn't really accept...his associate said she would only accept as a courtesy so the care sucks....don't know what to do or where to go because I sure can't afford all of the docs appointments or hospital bills. In debt with medical up the you know what as it is. Frustrating to get any kind of help for this and without being on any meds it is just getting worse. Not losing weight yet but think that is because of all the other meds that I am on for the depression, etc. The side affects of those are weight gain, but appetite is really down now...just don't even care to eat anymore because of all the vomiting and diarhea I get if I do.

 

[margie]

Just me venting again. I had another bad night so far with vomiting 4 times after only eating one meal this afternoon. Just have no appetite anymore. With no meds this isn't good and no appointment with GI doc until mid March. This is so frustrating, I hate this disease and what it is doing to my life. I swore that I would never let it rule my life and it seems now that it is really getting to me. Sorry, I am just very down and frustrated with all of this.

 

[Dexky]

Margie, is there a chance you could have a blockage? We have never experienced anything like that but I've seen it discussed on here several times. Vomiting seems to be very common with blockages and they can lead to very serious situations. Maybe you should go to ER like Beth suggested.

 

[vickyhunter]

Dexky,
I am not on any meds. They didn't give me anything in the hospital with the exception of Morphine for 3 days and nausea meds. Sent me home with nothing for pain, nausea, or Crohns meds.

I can't believe that! Do you live in the US? I live in England, it's so terrible to hear how you've been treated! I don't know what I'd do without my medicine. I pay £7.20 a month for my medicine and I thought that was bad, I feel very fortunate now! Is Crohn's covered by your insurance?
I really hope something gets sorted for you
xxxxxxxxxxxxxxxxxxxx

 

[Astra]

Hi Margie
and welcome

All I can suggest, not knowing your system there, is to get to A&E (ER) asap, vomiting is a sure sign something is defo wrong, blockage or obstruction.
Once you're there, explain about the difficulties you're having with insurance, and that you need appropriate meds, and a referral to an IBD specialist, not just gastro docs.
You shouldn't have to suffer like this, there are lots of meds out there, hopefully someone will listen, insist and persist, scream if you have to!
good luck, let us know how you are
lotsa luv
Joan xxx

 

[margie]

I had gone to the ER last Tuesday for vomiting, abdominal distention that made me look like I was ready to pop a baby out, and bleeding internally because it was in my stool that was black and tarry. I got the run around. They did an x-ray of the abdomen, but nothing showed up so they decided to admit me. I had an IV and gave me Morphine for the pain. I couldn't have any clear liquid diet or any food of any kind, not even water for 3 days. On the third day, the GI doc did a Colonoscopy and Endoscopy and with everything being normal he just said I was normal and sent me home with nothing. Last night once again was vomiting 4 times and wake up every morning crying from pain. I will tell you, I really can't handle these doctors here in Michigan, took me 6 docs just to diagnose me and now the last 2 docs that have done the test said I don't have Crohns...How can that be true? I was diagnosed and now I don't have it? I don't know what to think. All I know is that something is wrong and they treat me like I am nuts. There are only a few docs that will accept the insurance in the 3 counties close by that the insurance company had given me, and I called and they no longer accept. What in the world am I suppose to do? So frustrated and tired of vomiting and being in pain alll of the time and now lightheadednes. I still have black stool and they told me that my stomach is inflamed and still nothing from the doctors.

 

[margie]

Back,
I have an appointment on Monday morning with my reg Dr. Hopefully she does something for me or atleast gives me something for the pain. Guess I will see. Don't see the GI doc till mid month.

 

[Jennjenn]

Hi

What hospital are you going to that would send you home with no meds. You cannot live on pain meds, you need some crohns meds. I know you are aware of that but pushing for someone to listen to you is necessary. I know the Henry Ford Hospital is near you in Detroit, maybe you can try that area of doctors. There are IBD specialists over there who deal specifically with crohns.

I hope it all works out for you so that you can feel well soon.

 

[margie]

Thanks JenJenn
I had gone to William Beaumont Hospital, one of the major ones. I would have thought that not only would the care be better but also that the GI doc wouldn't be so condescending with me. Unfortunately, I have to go to a hospital that accepts the insurance along with doctors that accept. The only reason that this doctor is accepting is out of courtesty to my family doctor otherwise he wouldn't be accepting the insurance either. Most of the hospitals here accept, but I can find very few doctors that will accept it. I am now having pains in my lower back and my legs. I am getting sores on my mouth and have lost about 3 lbs now in the last 2 days. So I know that I have a flare up going on since that doctor when I was in the hospital said that the endoscopy/colonoscopy showed that there was a thickening on the small intestine and my stomach was inflamed and yet they sent me home with nothing. To go back to that doctor or hospital in my opinion will do me no good, but then I don't have to many choices either. So it feels like I am in a situation now where I just don't know what to do or where to turn to for help with my Crohns.

 

[margie]

Mistake

Hospital this time was Botsford Hospital, the one before was William Beaumont Hospital. So confused these days can't even remember things like that. Can anyone tell me if they too have pain in the lower back and legs caused by the Crohns because I have fibromyalgia on top of the Crohns, so it is very hard for me to figure out which the pain is coming from anymore.

 

[ameslouise]

Hi Margie -

If you are vomiting excessively, and you have internal bleeding, you really need to be in the hospital! I can't believe a doctor would send you home with internal bleeding!

I highly recommend that you go to the ER if you continue to vomit. If you say the hospitals take the insurance, then you should be in the hospital and demand treatment to take care of the internal bleeding.

While in the hospital, you should take to the patient advocate, every hospital has one. They can help you to make sure you get the care you need without being release prematurely. They can probably also help you find a GI that will take your insurance.

Do you have a family member or anyone that can come to the hospital or doctors appts with you? Sometimes it helps to have someone else to ask questions and push the doctors a little bit as we, as patients, can often get emotional.

Good luck. Please keep us posted. I am worried about you and your serious symptoms.

- Amy

 

[margie]

Hi ameslouise,
I am thinking about either taking my son or boyfriend that both live with me to both of these doctors. I am just so tired of fighting and I can barely walk in the mornings without being in so much pain. With the loss of weight, no appetite, still bleeding and still vomiting, I know that something is wrong, but seems that I can't get through to them. You are right, I probably am to emotional with them and with what I am going through I really can't take much more of this. I know something needs to be done to find out what is wrong, I just hope that they don't blow me off again.

Thank you everyone for all of the advice, and I will let you know what happens on Monday morning with the doctor.

 

[Pirate]

Margie, I also suffered from black tarry stools, vomiting and pain when I was diagnosed in 1986. I had bleeding ulcers to begin with but it took a while to find the Crohns. Wish you lived closer (Midland, Michigan) because my GI is a saint. She listens to everything you have to say. The GI I had before her was great also but he retired and I was lucky enough to get her.
Good luck with everything.

 

[margie]

Pirate,
Not sure where Midland is, but it wouldn't matter if they accept my insurance, I would go a long way to find a good GI doc. Around here they are a joke and very condescending telling me I am normal. Went to Arizona to the Mayo clinic to try and get diagnosed before was by one of the docs here in MI

Thanks Pirate

 

[Pirate]

Midland is up by Saginaw. I'll get a # for you if you would like. Maybe they would be able to help.

 

[margie]

Pirate,
I would like that, thank you. All I know is that I need to find a good GI and not ones that don't know how to help me or what to do.

 

[Pirate]

Margie, I sent you a PM

 

[margie]

Thanks again Greg for the information on your GI doctor. I will keep you updated tomorrow after I am home from my regular doc.

 

[margie]

I am so SCARED and FRUSTRATED here, just got back from my regular doctor after the hospitalization a week or so ago. She said that all tests came back normal, but that the tests the GI doctor did, were not the tests needed to check the small intestine. She still can't say for certainty that it is Crohns when I told her I was diagnosed with it over 5 years ago. I told her the symptoms and that you don't just have Crohns and that have it go away. She said that all of my symptoms either point to IBS or Crohns, but no definate diagnosis yet because they haven't checked the small intestine and that it may be affecting different areas. My stomach is very distended she said and that she doesn't like that at all. She said that tests show that it is inflamed and that I have gastritis. She is trying to get me in to the GI doctor this week so that I don't have to suffer with this until March 13th which is when my appointment is scheduled for. She, too, is very frustrated. She has now put me on a gentle laxative to take twice a day and Vicodin for the pain even though she doesn't want too. I showed her the sores in my mouth, told her that it might now be affecting my eyes again and that the distended abdomen is now causing severe pain in my back and that I had to sit up for a while last night, because of difficulty breathing and had a tightness. She said that she thinks that it is all part of the distention. She also said that now she is not totally ruling out ovarian cancer on top of the Crohns even though I have no ovaries, she said that I can still have the cancer there. That really scared me too because the reason the doctor took the ovaries out in the first place were because of precancerous cells. I just don't need anymore problems. First the Crohns, then the Bipolar, Depression, then the Fibromyalgia and now possibly Cancer. How much can a person take before they completely snap. I am so scared here. I don't know if I can take anymore.

 

[Jer's Girl]

I know how you feel sweetheart! I had one Dr last year who knew nothing about Crohns be so condescending to me one of the times I was in the hospital (I was there a lot), and it was so frustrating! He kept calling it Colitis, and when I would correct him he would just say, “same thing…”. He basically just acted like I was there to get pan meds! It was awful. You feel like, “I have to feel this bad and get treated this bad all at the same time?!@? I’m in real pain here!” Horrible.

I’m so sorry for what you are going through. I hope you get it all sorted soon, but in the mean time, you might need to consider going back to the ER. You don’t want to have an obstruction cause you to have emergency surgery! You just keep yelling, and eventually someone will here you. Sorry I can’t be more helpful.

 

[margie]

Everyone has been great on this site, and I appreciate all of you being my sounding board, I am just so scared right now. Talked to my doctor about the hospital stay and that he just sent me home with no meds or anything and she said that she is concerned and that on numerous ocassions she has had to send patients back to the hospital, but that she wants me to see this doctor. Unfortunately, this new doctor has no opening until the 13th, but that I could go in to her associate tomorrow morning, but that is the same doctor that was condescending and so I said that I would not go back to a doctor that doesn't understand or care about me, and that I will wait. Nothing else that I can do for now. Insurance companies, doctors or hospitals, not sure which one is worse, but in the long run we are the ones that suffer because we aren't padding their pocket books. Pretty sad that we are the ones that are paying the price, isn't it

 

[ameslouise]

Oh, Margie, I am so sorry you are going thru all of this! Your GP sounds like she is on your side and trying to get you the treatment you need. I think she is right about needing the small intesting tests to really get a good idea of what's going on. Be careful with the vicodin, it really can back you up, so it's good she gave you the laxative too.

The 13th is two weeks from today so I hope it goes by quickly for you.

If things get too bad or unbearable, go back to the ER!

Hang in there - Amy

 

[margie]

Amy,
Thank you for the support here on this site. To be honest, I would go crazy if I had no one to talk to about all of this. All of you have been great here. Thank you everyone. If it comes down to things getting bad, I will go back to the ER. I was offered a chance to be seen by the same GI doc tomorrow morning, but it was the same doc I had while in the hospital who really didn't want to listen or treat me and just sent me home, so I refused the appointment tomorrow and said that I will just wait till the 13th. Sure hope that I can make it 2 weeks though.

Thanks again everyone