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Will I ever get control of the crohn's? and a ramble.

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Crohn's Disease
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Posted 7/26/2010 2:09 PM (GMT 0)
I try and be positive.. I feel like every day has been a fight since January. I have accepted that I have crohn's...I can live with that. But seriously would like to find a treatment that works...I want some semblance of my life back.

so currently I was put back on prednisone 30mg but its not working.. my joints still hurt really bad.. and I am having bad D and mucus up to 10-15x a day..I am still on the colestipol but not really working. My gi is on vacation again until wed... I spoke to the nurse on friday and she was discussing that he is mulling over the methotrexate. The nurse is trying to get this covered under home health care with my insurance because it would be an hour drive to get the injection once a week and she thinks thats too much for me. I am concerned though that it takes time for that to work and the prednisone isn't controlling me. And to add to that, we don't even know if my dr will approve the injection yet. I did speak to my internal dr and he doesn't want to step on toes..so thats not an option.

My nexium was stopped because the insurance is reviewing me and won't allow me to take it. I ran out this weekend... I am really not happy with drs and insurance companies. I have tried all the other ones but my stomach reacts strongly to the other ones.

and my long term disability has not been approved yet. I lost my job back in april...because I was tethered to a phone and couldn't hang up on people to go to the bathroom. =) though I would have liked to . Anyway, they let me go , put it on short term disability than let me go completely but I still fell under the benefit of long term. But they don't think that Crohn's is a disability so that looks like it will be denied.

And the diet.. well there is barely anything I can eat anymore...they restricted most foods because of the crohn's, I am already gluten free and now I am on a special diet for pancreatitis because I still have pain.

I just feel like its been an incredibly sucky year...in 7 months I have gone through alot of medications, doctors, hospital stays... and I am not making progress..and today I am crying.. because I am tired. I apologize for this long rant and ramble..I am just so frustrated with everything... thanks for listening.
Posted 7/26/2010 4:05 PM (GMT 0)
I'm so sorry you're going through such a rough patch. It's really awful when you feel like you're doing everything you can and nothing is working. Hang in there. It can take a little bit to figure out which meds your body is going to respond to. As far as the nexium goes - can you try prilosec OTC or the generic form (omeprazole)? My insurance dropped and I had to quit the nexium too. So, I found generic Omeprazole at Walmart and have been taking that for the last year. It really helps. Maybe that wouldn't upset your stomach?

As for your disability - you are going to have to dig down deep and fight for yourself. It's their job to make sure you DON'T get the LTD. You have to show how you cannot work. Any time you have to answer a question or explain something you need to put it in terms of what you CANNOT do. For example: "I cannot take phone calls because I have explosive diarrhea and run to the bathroom every 5 minutes." "I cannot stand for more than 1 minute at a time because I am too weak from the pain, being unable to eat, etc." or "I am unable to hold a pen or drive a car because the medication I take gives me the shakes." I had the same problem- I had to leave my job because of the crohn's and they did not want to pay for LTD. Is your doctor on board? Will he write a letter for you stating that you are unable to work because of x,y,z? That will help immensely, not to mention all of the medical records - they need tons of documentation. It'll be a pain in the you-know-what, but if you fight for it, you'll get it.


Hang in there. I know it's hard. I know it sucks. You'll get through it and they'll figure out what works.

Stef
Posted 7/26/2010 4:38 PM (GMT 0)
They have tried 4 different otc's for the nexium but for some reason I only tolerate the nexium... haven't figured that out yet.

thanks for the insight on the ltd... and thanks for the shoulder...
Posted 7/26/2010 4:48 PM (GMT 0)
I know its tough and seems like you will never get your life back, but you will. Part of it is the prednisone. Always remember that it plays terrible games with your emotions. I spent 10 years trying to undue the damage that was done by being undiagnosed for 10 years. Not all of those 10 years was miserable, but I had some pretty bad times during them. But once the damage was taken care of, I have had over 12 years of relative calm with no real trouble and no signs of end to that in sight (knock wood). So there is hope. You just need to hang in there, find the strength to fight for the LTD (or borrow some from us) and let the doctors find the right medications for you. The Crohn's was in there for lord knows how long doing damage, it will take time to fix it and get you back to square one, but you WILL get there.

((((HUGS))))
Posted 7/26/2010 4:55 PM (GMT 0)
June, I think you will find a way to control the CD. One thing I would ask your DR today is why only 30 mg of pred? When I had the worst joint pain of my 10 years w/CD (all over aching, including my jaw, for goodness sakes), I started at 60 mg, if I recall, tapered down to 40 over a month and then held there for a few weeks until the joint pain was resolved. I tapered from 40. I think my total time on pred was about 3 months.

Sometimes I wish our DRs could feel our pain. If they could, there's no way they'd be "mulling." They'd be calling the pharmacy ASAP because they'd suddenly understand our misery in a whole new way. Once I called a DR at 1 am, and insisted I get a call back, because I ruptured an ovarian cyst and it hurt like a MF and I thought he really needed to know, LOL.

{{{{HUGS}}}}
Posted 7/26/2010 5:03 PM (GMT 0)
I guess I forget that I probably had this long before january...thats just when the symptoms got out of control...

My dr is on vacation again... seems to do that too much. But he told me to go back to 30, I had been tapered down to 20 when I started the Entocort and than got way worse. So he stopped the Entocort and raised me back up to 30. But its not enough. I have been on Prednisone for 4 months now, doing this taper dance , adding other medications in, getting reactions to the new and than back on Prednisone alone. I hate being on this drug. It was working somewhat but now its like my body is laughing at it. My PCP thinks that I am used to the Pred and maybe thats why its not working anymore.

And yes..I wish the drs could feel our pain as well...and I wish my dr would quit telling me I have a mild case of crohn's and making me feel bad that the meds aren't working...and I wish he would take less vacations..LOL.
Posted 7/27/2010 2:56 AM (GMT 0)
june:  hi, sorry you aren't feeling well yet.  Gosh, its hard to be a parent, wife, wage earner and member of society when one feels so awlful!  As far as your GI, does he have any partners he can see or other GI doc's close by that can cover for him when he is out of town?  Sure hope things turn around for you - barb
Posted 7/27/2010 12:38 PM (GMT 0)
June,
I am sorry, but I have to admit I not been completely out of a flare since being dx 5 years ago, but it did eventually ease up a bit. But I have to be very gentle with myself, and learn what I can and cannot do, there is an adaptive process with this disease.
Navy
Posted 7/29/2010 4:54 AM (GMT 0)
Hi,

Sorry to hear what your going through. Iv'e had this disease for about 5 years now and still there is no treatment that has worked. I have no insurance or job so I get my meds, if their available, through patient assistance programs. Go to www.needymeds.com and www.RXhope.com and see if your meds are available through patient assistance programs. Hope you start feeling better.
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