Crohns torture

I havent been on this site in some time I need help and advice. I have had crohns disease for 34 years since age 8 and hospitalized constantly since then longest time in hosp 151 days till trans to cleveland clinic debilated at age 18 to have total colectomy for what they thought was uc. Young people are strong was 80 lbs all bone my 5 bros teased me calling me skelator and they were hanging me on door for halloween. Make it quick been on all meds for crohns 20 plus fistulas operated on then had pouch adv to make them stop or get better all pre surg testing showed all great healthy ready to go. Surgery 4 hrs hosp stay 4 5 days NOPE SURGERY 20 plus hours 150 units of blood and blood products surgery stopped so I could ooze no one at outpt surgery talked to family until 23 hr we opened center and famiky closed down and reopened next day then nurse finallu takjed to them. They told family I had poor chance of survival but im here many aweful years later. Lost jobs marriages x2 homes x2 cars u name it. Also lost job as nurse at cleveland clinic after 5 years pkus os terrible boss looked up my charts made comments about me being out sick saying u look fine ect.. And way worse co to hr NOTHING DONE GOT WORSE WENT TO HEAD OF HEART CENTER STIKL NOTHING DONE NEXT DAY SHE CHANGED MY SCGEDUKE COMPLETELY AND DIDNT KNOW TILL MY FRIEND NOTICED SE HAD ME NO CALL NO SHOWS!! Enough of that quick hx but for 3 years plus in so much pain I cant talk stand dress eat nothing and its none stop terrible bowel obstructions drim adhesions scarring ect when I can no longer take it go to hosp puking crying ect give me pain meds co about amounts needing going home write a script 4 8 pain pills and continue to say surgery only for emergency and I probably wouldnt make it. I dont want any surgery but witb 100 s of subsaquint visits they argue w me about pain meds saying its so bad I just want to end it and they do nothing. Got to point where np saud to me and my family crohns pts dont have pain like this and maybe we should just give u a bag again. That woukd b great if I had a slight chance to live. Of course this is ahort version but any advise or thoughts. All welcome

Post Edited By Moderator (Ides) : 2/15/2015 3:37:30 PM (GMT-7)

All drs say its chronic terminal crohns. They come in room and say to all of us u know we cant do anything im that patient now the one I thought I would NWVER BE!! I have been to university hosp too referred to top surgeon that I worked w at cleve clinic and hes messy sloppy in my eyes not good dr or surgeon and said if they cant help he cant. No surgery due to the fact that its so diseased in there and w bleeding issues its slim to none to come thru. Its so hard tovhear THERES NOTHING THEY CAN DO!! I have been on every med there is tpn remicade humira cimzia imuran mp3 steroids u name it but the pain is the worase I have good support system but I try not to scare them. I cant visit when I cant breath talk stand ect ket alone have visits especially w the smaller kids I hate that pain in their eyes. Its justd hard cause they wont treat pain I dont get it. I have also constant gi bleed get blood trans at least x a month if not more could b every couple days but I have severe reactions to blood even a pos leukocyte irradiated so no antibodies. I just know no one who has this and not to compare just to get advice

I really just want to say that I feel terrible for the awful Crohn's issues you've had to endure in your life.

I too have never heard of Crohn's being terminal? As Stef said, I would like to suggest ideas as well.

What about the newer meds that have come out, or maybe get into a trial. I think QCbiologics is running phase 3 trials right now.

I really hope and pray that something good comes your way, and soon.

All that terminal crohns means its that I have bern on all meds and exhausted all options for mefical and surgical treatments available. Sounds crazy but condensed version of issues. I hate when docs see me w family they shake their heads and say u poor thing and u know theres nothing we can do. My big issues are pain and daily bowel obstructions w eating or drinking. I could go on for years about issues. My big ones r going to ed puking stool cant stand walk talk ectbsee triage wait 4 6 hrs and leave cause still havent been taking back. A perforation would kill me but colds and ear infections get seen asap!! Or going to ed w obstruction no xray done puking doc gives me speech their gonna take care if pain give me pills cant take (puking) only labs done no xrays and treated like drug secseker had security called on me to b escortef.out and hubby had to deaccsessed med port take out ivs. End up in ed puking stool w massive obstruction 12 hrs later. Sorry all these stories but wondered how many peeps can relate

Have you thought about getting an NG tube for nutrition or a PICC line and TPN? That would help you get nutrients without throwing it all up.