Skip to content
Trying 2 suffer smartly
AntKing posted:
Lucky & blessed...hard to say w/ CROHN's(i call the other 'C' word) but fistulas are my problem, i am 51, diag when i was 23...DIET change & THEIR meds (at first) on & off as my flares occured...NOW my luck is kinda runnin out....Can't be on Remmicaid due to so many sinus/allergy horrific infect/ INFLAMMATION, hard spot & rock....fistulas are connecting tfrom bowel to vagina (FUN)....ANY ideas besides such high powered scary drug that might kill me with infection or surgery to remove fistulas....back on diet, Drs are amazed that i havent had surgeries (YET), but ive had everything else ripped out w/ chronic inflammation (gaulbladder, hysterectomy...if its rebellin take it...cause all i do is cry, and im a tough even hurts to breathe , i feel swollen , inflammed, scared to eat , drink everything has to be thought out EVEN THE AIR I BREATHE bothers me, Chronic Pain is a Party Pooper....people dont understand when you cancel plans constant or they think you just get better....this time Im scared you can't leak POOP from your vagina w/o it being a BIG problem....Any fistula stories?...HELP....i need to educate myself...Thank you & im sorry you suffer 2.
knowsmore60 responded:
I can understand all, except for the fistulas. Thankfully I have not had them yet! Everything you have had removed, I have too! I am 61, and have had CD since 1970. My flares were on and off until 2000 when the doc found a carcinoid tumor between my SB and Colon, it had not gone thru the wall. IN Oct. 2000 I had surgery to remove the tumor, which was not cancerous, thank God. I was in the hospital for 28 days, split from stem to stearn! I was given such high powered antibiotics, that I had to be hospitalized in Feb 01 for 7 days with UC. I have been in my current flare for over 2 years! Nothing has/will control it! I weigh 95#, and am 5'6, since 6/11 I have lost 49#'s right in front of the GI Dr.! Do you think he cared? I am steroid tolerant, none of the ASA drugs will work, so I agreed to go on Humiria, which is a biologic like Remicade, only you can give the shots at home, rather than the IV @ hospital with Remicade. I too suffer with Chronic Pain, and NO ONE can understand, unless they suffer from it. Then put the CD spasms, and pain on top of that! I have been turned away from 2 ER's, as starving is Not an emergency! I am tired, frustrated, angry, and know if help does not come soon I will die! Go to and request the book on CD, it is really good, also go to the CD/UC Foundation website, they have great info also. Read,& read, learn all you can about Crohn's, the dr's do not know everything about this horrible disease. You learn how your body responds, know when your potassium, sodium, and vitiams are low, then when you go to the Dr or ER, you tell them what is wrong and make them understand that YOU are aware of your disease! You also can have me for support, if you chose. I wish all of the blessings of God for you! You are not alone, you have the support of all those with this disease, as only we can understand what it does to us! Hang in there, keep fighting, and hopefully someday someone will find a cure!
Donna, aka the twig!
AntKing replied to knowsmore60's response:
hello knowsmore...i did get educated along time ago....but you are right i have to get more literture...i can embrace what i know.Unfortunately i have a colo/retal surgeon appt Nov 13 I DREAD, went 7 yrs ago he drew out on a big paper what he was going to do, septum tubes hangin (weeks) relations eventually,go thru rectum to remove fistulas/crohns tag etc....i am so scared first time since diag.I also called the natl foundation in NY, thry said they would wave this years member fee 30 dollars & i will get 2 newsletters a year OH...& A CARD THAT READS 'I CANT MAKE IT''...its to prove a illness so that if there is a line to RR, maybe people if I show them the card will let me in front!!!!HA!!!HA!!! Thats the priviledge of this org., now Ill try natl found for ilitis & colitis, ive got 3 #s the hosp gave me,...OK, i didnt know it at the time but when i was 23 first diag., i was self medicating (along w/ diet restrictions STRICT) I smoked MJ acouple puffs nightly for 21 yrs.My Drs knew, but i quit 7 yrs ago....& ive never been sicker w/ inflammation & HORRIFIC PAIN, ALL I do is have cryin spells....thank God im a tough cookie & i dont let my drs of 28 & 30 yrs forget Italian , funny(have to be), very respected in the work i do but this is my 2nd leave in 4 yrs, 8 wks last time & that effected my indefinate....GREAT support from my hubby, im blessed i am greatful you answered me, i really dont want to MJ but i know its real high on the medicinal list, i dont like it, matter of fact i dread it...i dont like the feeling....i just want to eliminate the drugs totally.Oh, and i think im going to dress up for halloween as a fistula, HA!!! pray you never get them , they play havick in your insides attaching themselves like worm holes to other organs espec. vagina (FUN) bladder thats a nono im told....rectum etc...& you leak bowel.....I know remission its like a dream you feel fixed or ok, but its a false hope....but id take it...ill take any hope....I think ill change my title to " Kickin & a Screamin w/ crohns but i still have hope"....thank you so much.....all i tell my family is im sorry.....

Spotlight: Member Stories

I was diagnosed with Crohn's Disease in September 08. I had just started out with what I thought was a stomach bug in January 08, but my symptoms ...More

Helpful Tips

Crohn's Cure - Fecal Transplants Saved My Life!!!
I was very ill with Crohn's for years and finally tried Sky Curtis's protocol for doing fecal transplants at home. After years of ... More
Was this Helpful?
1 of 1 found this helpful