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Feeling Hopeless

Hello out there! Feeling a bit hopeless & defeated with this "Crohn"s Disease. Was diagnosed aprox. 8yrs. ago with a terrible flare. Specialist @ that time told me it was a "Moderate case". After a long hospital stay, changing jobs, I remained in remission until this past Oct. I have been horrid every since, with several hospital stays, good days / bad days, eventually, just recently, loosing my job, I am still fighting my way through feeling as though, just tonight, like I can't take this anymore. I am currently on Asacol. After going through my colonoscopy, ended up back in hospital, last week doing an upper GI, I am now back down for the count & feeling like I can't make it until Monday when I revisit a new GI doctor. I had applied for S.S.D., twice now, to be denied. Not sure what to do next. I don't want to go back to E.R., always end up with getting admitted, to end up feeling like I'm right back where I started. Feeling a bit hopeless right now. Any ideas or suggestions?
 
Hello songbird and a warm welcome to the forum :)

I'm so sorry you're feeling so overwhelmed by everything, it's such a complex disease it's no wonder we can feel a bit suffocated by it all, I know I do. My suggestion right now would be to take it one day at a time and try to find some good in each day, could be it's not raining or the dog wagged it's tail at you........I know this probably sounds daft, I just use it to try and distract myself from crohns ruling my life, bit like me trying to get control back.

I really do hope this things improve very soon for you, take care and good luck.:ghug:
 
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Hi SONGBIRD. Welcome to the Forum. I hope your visit to the GI gives you hope, and that he prescribe meds to get you in remission again. Social Security is very hard to work with. I suggest you find a lawyer to fight for you. I heard is the only way to go. Don't give up. You stayed in remission for 8 years, so you can do it again. Hope you feel better soon.
 
Thank-you Lynda,
Had a horrible night, not a better start of the day. Just trying, or should I say hoping, to drink something, anything without an immediate dash to the toilet. Concerned because it always seems to go this way until medical intervention of IVs, steroids, NBM & weeks of a hospital stay. When it gets this bad, it's an hour at a time for me. It seems to help if I have Nothing By Mouth, lol, but I know what that will lead me to. The pain, at times, just seems unbearable. I can only relate it to natural child birth, I gave birth to two, however there is no end in sight.
The worst for me is I constantly feel like there's so much I need to be doing, but can't. My thoughts are always anxious on the "normal" functions that I can't seem to get done. I have never been a leisure person, have always been hard working in the home & out. Very active sports enthuses, this with my age, 52, are taking a toll. I have never had a weight or muscle problem, never needed to exercise, due to extra curricular activities, however, that is changing.
I still find the beauty of life, I just want to be a part of it :( I do better at taking care of other people, animals, better than taking care of me, lol. Much easier to do. I have seen a lot of good advise in this forum, I am now anxious to share, like the vitamins, with the GI Dr. on Monday. I just want to keep something, anything down for now.
Any advise when in a bad flare, how to calm it? I have, since yesterday, not been able to tolerate anything. Just on water for now. Thanks again.
 
Hi Songbird. I'm sorry you're going through all of this right now. With social security, sometimes you have to apply several times before you are approved. I hope your GI visit on Monday is helpful. I would imagine she/he will prescribe some type of biologic at this point. The only "quick fix" that I've found is steroids, but biologics work for many people to get them into and maintain remission.
 
Hi songbird, Keep singing! I love your name. I have been up and down lately with a flare up. Today I went 7 times before 2pm. I take cholestyramine my GI prescribed and it does form a stool for me ,but I still have to go alot and it burns my bum. I have to wear cream all the time. The best things for me are to eat bland yet healthy foods. Rice alone when you are bad might stay in you.
See if your GI will prescribe the Questran or Cholestyramine (generic name.) It
couldn't hurt to try it.I also take B12 shots once a month and now I also buy the gels that melt in your mouth. Any way to get more energy!!!They also have folic acid, vit. c and B6 and biotin. So they are pretty good .I also take fishoil everyday and D3 twice a day and ginger caps twice a day. I go see my Dr. tmro and can't wait to see what he suggests. I can't take biologics because of cancer risk(had it already). So the drugs I already had that worked was entocort. Hope this helped some and hope you are feeling better soon!:ghug:
 
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Thank-you all:
Already feel so much more informed by posts. Notice one common is the vitamins.., will speak with my GI about them Monday.
After crying, heating pad & trying the rice.., so far so good.., Thanks 723Crossroads.
Right now I have been on 4800mg Asacol & 40mg of Prilosec daily, since December.
I really hate taking all this med.., if it works.., fine.
I was drug free since the first bout around 8yrs. ago, I really thought I was wrongly diag. with Crohn's until Oct., when I got close to deaths door with this rampant Disease.
As for the name "Songbird", lol, thanks.., really couldn't think of a name last night when I joined.., recently took over a nest of birds that were abandoned a few days after hatching.., hand fed them until they took flight, sang with them every day, as they were really loud during feeding times. Got to video them, was too funny. Never to do that one again, a lot of work! But thank-you for appreciating the name. As for "crossroads", have felt like I've been there a "few" times ;) Good luck with your Dr. tmro.
Going to read LindaS blog now. Thanks again.
 
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