grr… so frustrated. I sent my GI information on the Simponi, and his response was you have failed two already (even though it is actually 3), and I don't think it will work would you be interested in Stellar? It took all I had not to lose my temper with the poor nurse. I said yes I would be willing, but since it is not approved for UC/ Crohn's my insurance will not pay for it, and Dr. Schwartz is aware as we just discussed it, and he has already appealed to my insurance 3 times already all denied. What part of they will not pay for it does he not understand. I really think it is time to find a new Dr. who is willing to roll up their sleeve and be an advocate for me, and not just a patient number on a chart. I still don't have the full results of my scope on Friday as his office was supposed to call me today, and after I finally got ahold of them this afternoon they were like well we've not looked at the results yet so it will be sometime this week. I know the office is busy, but when his Dr who performed the scope said your are in bad shape and need to hear from Schwartz on Monday or you better call then I think this is important enough to make time to see what needs to be done to help your patients!!!!
sorry for the vent!!!
Very frustrating, Chris, I know...
Simponi has been FDA approved for UC for about 6 months now. Makes sense to try that before beating your head against the wall for unapproved meds. Sure, you could fail that one too, but nothing offers a guarantee.
http://www.ccfa.org/news/simponi.html
Jan
Simponi has been FDA approved for UC for about 6 months now. Makes sense to try that before beating your head against the wall for unapproved meds. Sure, you could fail that one too, but nothing offers a guarantee.
http://www.ccfa.org/news/simponi.html
Jan
Call back Chris and ask to talk to the doctor. You are ill, the doctor told you last week that you would be talking to your doctor Monday. It is understandable that your doctor did not get back to you yesterday as Monday's are very busy days for everyone. But, he has now had time to receive the test results and you need his attention. You are bleeding from who knows how much of your GI tract - at least as far as the other GI looked for heavens sakes! I'd be wondering if my blood needed testing to see if I was getting anemic or worse etc. Also, are you needing pain medication? Do you need further testing, like a pill cam? Should you be in the hospital etc? I'm just making up questions. I'm sure you have many legitimate ones. BE the squeaky wheel! You do not have time to change doctor's at this moment. You can be looking now for a new doctor but you need help in the meantime. I don't know where you live or who you are going to but please find a GI specialist someplace like at Mayo or the Cleveland Clinic. I got to Mayo at Rochester and there's another guy on here that goes to Florida. There are people that go to the Cleveland Clinic in Ohio as well as other fine doctors in CA and in the East. If you need ideas, ask. AS my local GI told me, he treats people for the entire GI system from the mouth all the way down. When he couldn't get my chronic cuffitis to go away he sent me to an IBD specialist that knew all about j-pouches at the Mayo clinic, which is 3-4 hours away from here.
Jan I totally agree might as well try something rather than nothing at all, but he is hellbent on not trying it as I personally talked to him today.
TE- I agree, and no I don't need to be changing GI's but I will be looking for a new one.
I do have an update though. My GI personally called me today which is very surprising. My first words out of my mouth when he said hello this is Dr… was oh crap this isn't good if your calling me (in hindsight I guess it may have sounded rude, but he never calls its always a nurse).. His response though was no I actually have good news as your biopsy tests came back today. I have a viral infection (CMV), and he thinks that once I start taking the meds he is prescribing I will be feeling better quickly. After looking it up I'm not to sure I am better of but at least I know what is going on, and all of the symptoms that I have read about I have (ulcers, fever, chills, headaches, bleeding). Not sure where this will take me, but we shall see. Now my question is for the past two years I've been battling most of the symptoms I have now, and my Crohn's tests always came back negative or inconclusive so could this be what I've had all along or is it in addition to the other issues…
Jan I saw a few posts from you on the subject when I did a search, but do you have any new info on it??
TE- I agree, and no I don't need to be changing GI's but I will be looking for a new one.
I do have an update though. My GI personally called me today which is very surprising. My first words out of my mouth when he said hello this is Dr… was oh crap this isn't good if your calling me (in hindsight I guess it may have sounded rude, but he never calls its always a nurse).. His response though was no I actually have good news as your biopsy tests came back today. I have a viral infection (CMV), and he thinks that once I start taking the meds he is prescribing I will be feeling better quickly. After looking it up I'm not to sure I am better of but at least I know what is going on, and all of the symptoms that I have read about I have (ulcers, fever, chills, headaches, bleeding). Not sure where this will take me, but we shall see. Now my question is for the past two years I've been battling most of the symptoms I have now, and my Crohn's tests always came back negative or inconclusive so could this be what I've had all along or is it in addition to the other issues…
Jan I saw a few posts from you on the subject when I did a search, but do you have any new info on it??
Well, if you have CMV (cytomegalovirus) infection, you absolutely do NOT want to start ANY biologics, Simponi or experimental. It could make the infection run amok.
http://link.springer.com/article/10.1007%2FBF02235196
Jan
http://link.springer.com/article/10.1007%2FBF02235196
Jan
Hmm.. thanks for the link, and yes cytomegalovirus is what it is. I guess I know why nothing would help my pouchitis now.. as talked about earlier I was pretty ulcerated which is a side effect of CMV, so now I am wondering how long I've had it simmering, and if this has been the root cause of the problems I've been having for quite some time now, or if I still have underlying issues, and this is on top of them masking them at the moment...
Wow, this is a pretty old article but they used some pretty sever IV meds. I hope whatever they are threating you with is strong enough and acts fast Chris! It looks like it's pretty hard to detect as well, at least in these 2 cases. I wonder how many times your doctor testes you for this before? Maybe he's not so bad....
TE- he is using he pill form of the IV meds. From what I've read their is only two medications for it, and they come in pill and Iv form. I go back for blood work next Thursday and if it isn't gone we are moving to the IV medication to help get rid of it. My normal GI has never tested for it, but the one who did my scope did for whatever reason. not sure if this is a common diagnoses or not. From lack of search results on here it doesn't appear to be, but IDK. I did get some good news today though. My insurance finally approved Stellar so as soon as this is cleared up I will be able to start it. Hopefully it will work, but if it doesn't the new drug is right around the corner. I am trying to be as optimistic as possible,and keep my head up. As long as I start seeing some relief soon it will make it all the more easier to keep chugging along and pushing through these problems….
Wow, sounds like you were lucky to have a different GI scope you! It is good to have a different doctor evaluate you when things get bad, even if he is in your doctor's office. The people in this example Jan looked up had been tested for it before and it hadn't been found until after surgery so I hope the medication starts working for you. Fingers crossed
yes I was lucky that she tested for sure. So far I am feeling better. I am starting to get my energy back, and haven't had a fever, chills, or shivers since the middle of last week. Looks like things are starting to come around...
That is fantastic news! So maybe she's going to be your new GI 
yes, it is wonderful news for sure… and maybe she will be time will tell…..