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Aiden0127
New Member


Date Joined Apr 2010
Total Posts : 1
   Posted 4/16/2010 1:02 PM (GMT -7)   
  Hello Everyone!!  My name is Aiden I live in IL and was told by telephone 2 days ago that I have crohn's deases.  I know nothing about this and just know that the doctor called me in entocort to start taking but after going to pick it up I couldn't get it my insurance doesn't pay but %60 of the cost with left me with needing to pay $400 so I called him and ask if there was something else and was told by him to just suffer until my next appt. when he can talk to me I have been really sick since January and was in the hospital for eight days and on the 4th day they did a Hida scan on my gallblatter and it was not functioning at all so they remover that on the 5th day and by the 7th day was still really sick and not able to eat and the surgen came in and told me that he thought that I had crohn's because of what he seen while he was in there and said that there hospital was not able to handle that so they sent me to a bigger hospital were I was told by the hospitalist and the GI doctor that it wasn't crohn's and I would be fine and sent me home the next day now almost 3 months later I am still sick and tired all the time can't eat without getting sick and the biggest thing I am worried about is that I have been haveing alot of blood mixed in with my stools and the GI doctor tells me that is from hemoroids I just don't know weather to belive that or not because it is clotty slimmy blood not just some when I wipe I am not sure what all I should say here just tring to let everyone know whats going on with me If anyone knows of a good GI doctor in IL or IN would enjoy getting the name also if anyone knows of any place that helps with medication cost would really like to get that information.  I look forward to haering form you all and wish each and everyone of you the best of luck and god bless you all
 
 
Thanks for takeing the time to read
 
Aiden

Becoming undone
Veteran Member


Date Joined Jul 2007
Total Posts : 927
   Posted 4/16/2010 1:45 PM (GMT -7)   
Welcome Aiden...
I am wish you didn't have this disease, and join our ranks...
I do not live in IL, nor can I give any direct medical advice, just give my opinion since I have dealt with this disease for over a decade and have been in a serious flare for awhile.

I too have hemorrhoids, but higher up, in the rectum itself, and yes, they do tend to be what you describe...many people think they are just near the anus and are visual to the naked eye, but esp with crohn's, they can be quite a bit higher than the typical population...Also, if you are concerned about the bleeding...take a picture with your cell phone...that way the doctor knows how much blood there is and there is no miscommunication. (I've done this, and it helps the doc out a lot, even though it may seem kinda gross...)

As to the medication and cost, ask if there are alternatives...and also make sure you know the alternative's side effects...I take prednisone, not the enterocort, so I have more of the cortosteroid's side effects.

The fatigue is standard with this disease...so don't be alarmed...but do mention this to your doc too...
Anyhoo...welcome, and ((((((((((((hugs))))))))))))))))))...we're here to listen whenever you need it, cuz we've almost all been in similar situation...
"The earth laughs in flowers"


grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 4/16/2010 3:34 PM (GMT -7)   

(((Welcome Aiden)))

So sorry you are going thru this. I have't lived in Illinois in over 20 years so I can't help you there.

 The alternative to Entocort is prednisone. It is VERY cheap, but there are alot of side effects that go along with it. The upside is that you start feeling better pretty quickly. How long til your next appointment? I know it's hard when you are suffering, but try eating a low residue diet til then, it's usually easier on the stomach and intestines. Also, if you aren't taking a multi vitamin, get some. Most people have absorption problems so any extra vitamins you can get in can only help. Try to drink gatorade or pedialyte. I'm not crazy about them, but through the years, I can tell when my body is needing those electrolytes. Rest as much as you can.

Everyone is different, and responds differently. I can only tell you what I find helps me when I'm getting really sick. Hang in there. Hope you get to feeling better soon!


Dx'd w/ Crohn's in 1979 at age 14. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal. 
Dr. wants to try Humira...STILL waiting on that! Not sure what is taking so long...
Currently just take a probiotic, a multivitamin, calcium, magnesium, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.
 
Life may not be the party we hoped for, but while we are here we might as well dance!


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 4/16/2010 4:27 PM (GMT -7)   
Sorry to hear you have to join our lousy club, but glad you found us!
Your GI seems to lack sympathy, there are other things to try besides Endocort. Prednisone for instance. We ALL hate it, but it doews work. And its cheap. I would not let the remark "just suffer with it.." endure. I'd be raising a hurricane of protest. Where is this Doctor's Oath???
Unfortunately, Gastroenterology seems to have an inordinate number of A-holes. Must be the nature of what they deal with. I sincerely hope you call him back & say your response "don't cut it"!
Sorry, I need to rant today!

Sincerely,
Matthew

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 4/16/2010 4:58 PM (GMT -7)   
I agree that you probably want to start looking for a more sympathetic doctor, cause this one is not cutting it. Prednisone is pretty much cheaper than dirt. Entocort was the new great replacement for it to cut down on the side effects. It is absorbed differently so you don't get so many of the unwanted side effects but they have to pay for those big advancements in medicine by upping the price. You have 2 choices. Get your doctor to petition your insurance company to pay for it as a medically necessary drug or ask for prednisone and suffer the side effects. The side effects aren't great, but they are a heck of a lot better than just living with the disease. Actually you have another choice, there are other medications that you could try, but entocort and prednisone are the quickest to show results.

If you do a search in the upper right hand search box under medication and crohn's you should come up with some good links to get you started in your education on what you might want to ask about. Personally prednisone has always been the thing to knock a flare on its A*& for me, and when the side effects hit full force, I ask my doctor to script me other meds to deal with those (sleeping pills and ativan for the jitters).

I'm sorry you have to be here, but you will find lots of helpful people and we have all been there before, so feel free to ask anything, or just vent if you need to.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 4/16/2010 6:23 PM (GMT -7)   
Hi Aiden, I live in Il, but close St. Louis. I go to St. Louis University hospital. I see a Dr. Omran who specializes in
crohns. He's a super nice guy, with lots of empathy for his patients.
I don't know if this is helpful to you, but if it is and you need more info, just let me know.
I'm sorry you've had to join us, but pleased you did. Welcome!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 4/17/2010 8:23 AM (GMT -7)   
Hi Aiden and welcome to HW. Sorry though that you had to join our club. Prednisone is a much cheaper steroid, and actually works faster than Entocort. Yes there are some side effects, but its one of those meds we love to hate. It helps to quiet down a flare pretty quickly and helps until a maintainence med kicks in. I hope you can find another GI who is a little more sympathic. Big hugs to you!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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