Sick and no real diagnosis

i am so tired of being sick. I am currently on Asacol 400mg 8 a day and entocort 9 mg day. Plus other stuff for other issues. The best thing that helps is Prednisone. Doc does not want me on it but I called and said I am real sick abein x 2 days and need to do something. I had Exogen lad test csme up neg. Had high sed rate last spring so doc knows its Inflamitory desease. I missed a dose of Asacol Tuesday and now am paying for it. Cant keep doing this and being sick off and on. Cant handle it, cant function or work. No life. SSA does not recognize this as severe. Have a lawyer and SAA said I was sick in 2008 and 9 but no more..no on going "exidence". They wont take my word for it and everything keeps coming back "normal" I wrote in to this forum before and am trying to get Pilcam vs scope. Doctor still wont, as he thinks insuracne wont pay. Wants to do a scope which I keep refusing, as this is how I got this way with a perf. in 2008. I see GI doc on the 1st again. SSOOOOOOOOO Frustrated. No fun to lay around sick and on pain meds, especially since tomorrow is Thanksgiving and I want to cook and spend time with my family. I am back to eating rice and tea today. Did small bowel series last week too...Nothin! I am so far in debt with medical bills. Thanks God my husband works but we have so many bills to pay and insurance only pays part. The asacol and entocort are epensive as is many of the other drugs I take. No one will help cuz we fall through the cracks and he makes just enough to be too much. Sorry...just needed to vent. I am so sick of how long this is taking and and am so afraid. The regular tests arent telling anything. I spent 84 days in the hospital in 08 amd 09 due to the perf that the doc caused while doing ercp. Cant do the scope again....Cant handle the thought. I gotta have the PIllcam and see what that shows. If I can get a diagnosis maybe SSA will reconsider. Thoughts??? Support???? Thanks. Happy Thanksgiving all!

I left a message for the doc and said to please send in a auth for the pillcam.... Happy thanksgiving. Hope i can tomorrow. The orionginal was done to place a stint in my common bile duct before we thought I had IBD. It was sphynctor of Odi dysfunction. But since I continued to have inflamed bowels. Maybe due to all the surgeries ive had or ileostomy, or abcesses and fistulas and peritonitis. But t I have inflamation in my bher parts of body too which seems typical for crohns too. i.e hand, elbow, knee etc that are usually revlieved by the asacol and entocort but not right now. Its all not working the last couple days.

Although I was not as sick as you are and didn't have the complications you have suffered I didn't have a diagnosis either. My chief complaint was the shards of glass pain in my gut, no major diarrhea or anything like that.  Colonoscopy, gi series with small bowel followthrough, CT Scan showed nothing.  My doctor felt that a trial of medication was a better test for me than a pillcam which is useless if you have disease at the microscopic level.  So he prescribed asacol and that only helped some.  It was when he put me on pentasa that I got major relief so maybe you need to try that instead of the ones you are on. If the disease is in your small bowel I don't think asacol and entocort is going to help a lot.  He told me that asacol helped me because even though it targets the colon there is some "backwash" into the small intestine.

I'm wondering how you can get a biopsy to qualify for SSDI if your disease is in the small bowel, other than surgery.

I know it is so depressing in the position you are in. It took me 3 gi docs to find the one who was willing to experiment. I now have an official diagnosis of crohn's spondyloarthropathy with nothing other than response to medication to back it up.  My response was dramatic which definitely helped prove I had a problem. Pentasa only helped with the gut though so had to go on to bigger things for the rest. 

Hello again. I went to the GI doc today. He is kinda hard to wor with but decided to go ahead with the Pillcam...Yahhhh!!!! So ios now senidng in the pre auth for approval and should be able to do in the next few days or week. I need some "evidence" to send in for reconsideration withing the 60 days. I will not let him do any more thou. He keeps saying that since he cant find anything that it is NOT cronhns or IBD even though my Reg doc says it is IBD due to the symptoms and the high SED rate. He says the tests so far should have shown if I had either CD or UC and he doubts I do and it just IBS. Hummmmm!!!!! Maybe but i am so darn sick so often and cant work becasue of it...Cant do much at all actually. I asked him if we could do pred since I only did it for a few weeks one time and he said too risky....That gave me such releif. He is recommending I go to Mayo in AZ for a second opinion. Maybe they can do the scopes there. I dont really trust and of the GIs here. There is only a few and two offices and they all work together and when I tell them of things I see on TV or read about they have no clue....I cant really afford any of this but my husband says "whatever it takes".  The GI wants me to see the rhemitologist too. So that will be next step after pillcam. I am not sure that I can get a diagnosis in the next 45 days that I have left. In the town I live in it is small and has only a few of each kind of doctor. The Psyc docs are a joke here and it cost 50% of the fee which is around 150 an hour. So that's out for now. I hoped I could get help if I got SSDI or medicare and then could better afford it. So we will see how the next couple weeks go. Maybe I should make an appt with the rhumitologist to make sure I can get in in the next couple weeks and I can cancel if need be. Some times it takes weeks. Also my lawyer said to get a letter from my promary doc saying I contunue to come in for medical issues and similar problems all along and still unable to work and dwe can send that in too with the other info we can hopefully get soon.

so glad you're feeling better!

I could qualify for ssdi if we did not have so mush too. But SSA says I can get the back pay for the first year+. they sent me some of it. I am waiting to see if they send the rest. I sent a letter to my GP to ask that he write a letter stating I have been sick all this time not just the first 13-14 months after 2008. So hoping between him and the GI doc they can submit this to them for reconsideration..soon. Gotta be within 60 days and it has been about 30 days. here is hoping they see something on the pillcam. Thanks for all the support guys. I need it. Also thank God the asacol and entocort finally started helping...wow its expensive. I was found oringinally disababled for july of 2008. So we'll see...

I am glad for you that you are getting the pill cam. I hav vitually eveery test and it wa snot until the pill cam that I was diagnosed.
Also, if it is small bowel you might find entrocort and pentassa works even better for you.
Take care
Dave

I did the promethuis a couple months ago and it showed nothing. I did the Pillcam yesterday and glad that is done, but I am having bad stomach pain off and on last night. I hope tha pillcam passes. Kinda concerned right now. But I am sure it will be fine. I have a lot of PTSD symptoms also. I have a hard time advocating for my self cause I get freaked out or cry or get so frustrated that I cannot communicate effectively. I cannot afford counciling right now. I hooe the GI doc will call me today and not make me wait for days or go on vacation for the hoiday before telling me. I really need to know what is going on and why I am so sick. I wonder if AFLAC will pay for the trip and extra expenses if I go to Az. I had not thought of that. The ncie thing is we are slowly catching up on some of the med bills. Just wish we could stop making more...LOL. I will let everyoner know later what the doc says. I will call him tomorrow if he does not call me.