Tired of fighting

[Brocktyler]

I have had crohn's for the past five years. I went undiagnosed for quiet some time before I finally found out. This year has been extremely tough for me. I have been in and out of the ER about 17 times since February. I have been hospitalized for partial bowl obstructions 4 of those times. I have been on budesonide(didn't work) so I started a high dose pred treatment which I have tapered up and down since February surprisingly no relief as well. I have been on remicade for a little while now but still nothing. I'm just so sick of this I have gained a ton of weight from the pred terrible mood swings and now I have gotten really bad acne from the remi. All this and I have still been having a terrible flare-up. And that's just the dang side effects don't get me started with my crohn's pain and problems. It's so tough right now just to stay positive. My family have been very supportive which helps a lot but I still feel so isolated trying to deal with this. I find a lot of comfort in the forums that have come to be my best friends haha. It makes it a lot easier when you can relate to your fellow crohnies. So I have been doing extremely terrble that past couple weeks I have go to the ER in so much pain every fews day. I am there so much that they Dr's come in and ask me what the game plan is and what meds I recommend( in all seriousness that has happened twice now). My GI Dr is out of the country doing the whole Dr's without borders thing which I commend but damn I need some help here. I'm trapped in a vicious cycle i have found myself to a point where I'm ready for surgery I have talked with a surgeon already he came to see me when I was hospitalized and wanted to see where my head was at so I let him know I'm tired and ready to move forward. So now guess what I still have to wait for my GI dr to get back which is still a months away so he can give the surgeon the green light. So here I am stuck in the middle of a really bad flare up in and out of the hospital when I can manage it myself. I'm just so tired of having to run up there every week missing work have my family take me or missing something important or just basic crap like mowing the freaking lawn. I am so ready for this surgery I can wait anymore. Thank you for letting me get this off my chest ugg it's so frustrating to feel like I keep getting the runaround when all I want at this point is some results even if I'm only better off for a little bit at least it's something. Anyone have a similar story?

 

[ronroush7]

Does your gi have an associate you can talk to? I don't know but you might need another biologic. I hope you can get relief soon.

 

[Justanothercp]

someone has to be covering for your Doctor, see him, get green light for surgery and move forward!
Good luck

 

[Brocktyler]

Yeah there is 2 other Dr's in his office but the nurse is like a damn brick wall. Now when I go to the ER I make the Dr call the office and there like yeah have him set up an appointment then I call quick and of course they don't have any openings soon enough. I'm like look I don't care what Dr it is and I know you should have openings for people like me who are having emergencies but still nothing it's so frustrating. I see my primary today which thank god because at least that's something but I'm gonna make him contact the GI Dr so he get the surgery thing moving im so ready at this point. I just can't believe the level of running around im getting I can say one thing for sure now I don't take no **** from the Dr's anymore I'm very brash and blunt with what I want done nowadays haha.

 

[ronroush7]

I am sorry. You would expect better.