New here, frustrated and pretty angry at my crohn's.

Hello all, I'm new to the Crohn's forum and I came because I kinda angry at my crohn's and want to talk about my crohn's story with people that actually understand. I've had crohn's as long as I can remember. I know most are diagnosed later on after childhood, but I was a really sick baby- toddler- kid. It was the early 80's, my mom was 15 when I was born and the doctors chalked it up to that. They actually called my mysterious symptoms of vomiting and bloody diarrhea, and inability to keep weight on "failure to thrive". In grade school I was accused of being a "faker", even though I was half the size of the other kids and needed to use the bathroom 5x as much. I was tested for everything from leukemia to anorexia, and after years of tests they decided when I was 12 that it was crohn's. My freshman year of highschool I weighed 68 lbs. my intestines blocked and perforated, they removed 5 feet and gave me an ileostomy, which was reversed 6 months later. A few years later I strictured, they removed more and did a strictureplasty. After that there were dilations done because the scar tissue from the previous surgeries. The scarring left by the operations had started "spiderwebbing" in my intestines, and matter trying to get through is constantly irritating and inflaming the scar webbing causing thick blockages and strictures to continually form. Last year they removed more scar tissue along with more intestine and they want to go back in for more. I am resistant to all the pill form meds they have tried (asaol, 6mp Pentasa etc) and am allergic to both humara and remicade (remicade caused cardiac arrest... long story) I am 32 now, 5 foot tall and 83 lbs. Ive been on and off TPN, I no longer absorb potassium so I require blood transfusions when it gets too low, my crohns is completely out of control. I deal with what seems to be a neverending full blown crohns attack because of these scar-stricture-webby things and to tell you the truth I am frustrated, angry and just plain tired of it. I live on a liquid/soft diet and STILL have excruciating, wrenching bathroom trips... BUT I dont want to have more surgeries and thats what they say my only option is- To go in and take out the scar tissue as it grows... over and over and over again. A life of surgeries. Yay me.
When it gets to the point I cant take it anymore I will go to the emergency room and let them do what they want- but I am determined that it won't be till it has to be. Every time I say "it will pass, I just have to wait it out..." and I do. For some reason I will put myself through excruciating crohns pain (that I know I should rightfully seek attention for) just to avoid going to the doctors/hospital. My husband thinks I am stupid for hard headedness on this. He says it is crazy to wait till i'm at the point of black-out pain from not being able to pass anything, but he isnt the one that is going to go through what is waiting for me at the hospital, is he? He doesnt know what its like to have an NG tube inserted, PICC lines, potassium infusions that burn your veins like acid, meds that make me go off my rocker emotionally, being cut open again and again.... Yea... you guys understand. it just sucks.
Thanks for reading my vent.

Sorry to hear about that I also was diagnosed at age 12 and can relate to everything you said.Feburary marked my 21st year dealing with crohn's and the after effects of many surgeries and sometimes I get to the point where I just want the problems to end and not have anyone touch me.I too have a ton of scar tissue that has caused a narrowing of the small bit of intestines I have left and has caused a bunch of blockages and I will eventually need more surgeries but my surgeron wants to avoid that till it's totally necessary..Hang in there and hopefully it's gets better.

Welcome to the forum!

I'm truly sorry to hear of everything you've been through and are still going through. I understand your anger and frustration. And I understand your aversion to hospitals too

Sending hugs :ghug:

I know that I am not your intended audience and much like your husband I can't even begin to relate to your day to day struggles. But my girlfriend has struggled with severe crohns for roughly 4 years, having her large intestine removed and being forced to have an ileostomy bag all at the age of 24. I know what your husband feels. I reiterate that we can not begin to understand it, but try to keep in mind it is also difficult on us to be helpless in this. As a man we are predisposed to want yo protect our significant other and knowing that we are helpless is the worst feeling in the world. My girlfriend also gets frustrated with me, but the only thing we CAN do is try to be strong and positive by your side throughout this terrible terrible disease. It eats away at me knowing my girlfriend has spent 23 of the last month in a hospital bed sleeping. Alone. I'm sure he feels the same, that we wish we could take the pain upon ourself but also find you to be the strongest person we've ever met and admire you more than you know. I hope this isn't taken the wrong way and there is something positive you will take from this. God bless you and everyone else who suffers from this.