7 Years of sadness

[ILCrohn'sGirl]

I've been diagnosed since I was 18, but had symptoms since 16, with crohn's. I am truly the "Crohns Girl" of my town. In/out of hospital....so much that they know me pretty darn well. I was in the hospital overnight (toughed out a day of 20-25+ diarrhea blowouts friday then finally went in) and released this evening it turned out to be left-sided inflammation - doctors saying it was more likely an infection and not my crohn's. Two IV antibiotics overnight thru this evening, hope it helped. But the doc went on to 'lecture' me on how working around sick people, etc, etc, basically living a normal life - will be extra hard for me. Well...No.....really??? I never realized that. But doc I HAVE to work ---- to pay you!! LOL.
Anyway.....7 years now of living with this horrible disease. I've gone through the lower level drugs....asacol, numerous ones I don't remember......to humira for 2 years.....and currently on Remicade every 8 weeks. When I flare up really bad they put me on prednisone. I was on entocort along with Remicade and that seemed to help better than any other single or combo of drugs. But I ran out and didn't refill it because it was from ER and my GI appt has been scheduled out very long!
But I'm getting very depressed - the job I have now (for 4 months) I love and I've had to miss today because of it, missed another saturday (which are 12 hour shifts) because I had gotten sick this summer. I feel like I can not live a normal life anymore.....I probably don't eat the way I should but I quit smoking in March, I do not drink at all.....so ok if I want to eat something yummy....forgive me! The doctors make me feel like I have to eat BLAND everything.....I'm on a bland diet for a week and honestly I don't think I can do it. What? Toast, bananas, soup????
I'm frustrated, sad, looking for others either online or maybe in the area who are dealing with it....I'm looking for advice...as well as giving any I can.
My apendix and gallbladder have been removed - both last year.
I'm considering just becoming a bag lady - which I know will be my future.
Also: Has anyone else heard about the bone marrow transplant curing some Crohn's patients in Seattle?
Alright any NICE comments are welcome! Thanks for reading!!
*Sad CrohnsGirl signing out*

 

[CrohnsChicago]

I HAVE heard about that bone marrow transplant. But it was an unexpected result of laboratory research patients being treated for leukemia. Doesn't sound like it's anywhere near being a solid treatment option as bone marrow transplants come with their own share of risks...but it does offer hope....

http://seattletimes.com/html/localnews/2018756084_immunetransplant24m.html

I sometimes get scared that I will lose my job because of my symptoms which just so happen to be at their worst when I wake up and start moving about in the morning. sometimes I need a few hours before work to get ready and get out of the door. And I just know my passive-aggressive boss is bothered by my many half-days I take during flares to see the doctor/get lab tests done or mornings when I just can't get off of the toilet in time for work.

And I was actually complaining on the phone the other day to a doctor that I couldn't see them because I was tired of taking time off and I needed to work to pay for these visits and medications. I am always afraid my disease is making me look bad at work despite the fact that I give 200% when I am there.

But I try my best to laugh whenever I can. Humor is a powerful healing tool for me, as is meditation for helping relax my mind. I believe the brain and gut are very closely linked because at the first sign of stress, my stomach drops and I get cramps (and eventually the bathroom visits begin). Even a walk in the neighborhood for a few minutes helps me out a bit.

What sorts of things do you do to try and relax?

 

[CheerBear12]

Hi and welcome sorry you are going through this but surgery might be your answer. If I were you I would for it it might just settle your symptoms even so that you can get on with your life. Good luck and keep us posted on your progress xx

 

[Ckt]

ILcrohnsgirl..I can so relate to your frustration and sadness at wanting to have a fuller life but just not being able to because of this illness! I'm so sorry you are having such a rough time but you have found a great place to get support and not feel alone! The past few months have been rough ones for me so I know how you feel I think. I haven't been able to work for ten years and began to feel that I could start applying for jobs. It seems when I get a good routine going with social activities, family outings, and potential jobs, I get side tracked. My most recent struggles have been centered around having so much diarrhea and pain that I just laid in bed watching movies hoping it would pass..
The doctor I was seeing wasn't really listening to me and the regular er I went to just have me lectures about how the er isn't an appropriate place for chronic illness..sooo..I went to a different er and was heard!!i hooked up with a new gi doctor who is also a colorectal surgeon who seems really good..odd(which I could care less actually!) but good! However, I have an appointment in Chicago whic is 5 hours away. My trust is still low and this clinic in Chicago is one of the best so even if they don't tell me anything new, at least I will know I've done all I can. They were the ones who diagnosed me in 2000 after not being diagnosed for 20 years!i didn't even know I HAD crohns or any real problems!i thought it was amoebic dysentery as I was in Africa with the peace corps.everyonechad diarrhea! but I also had bleeding and could throw up on command!LoL!
Don't give up!thats why I wanted to tell you my story!never,ever give up..seek treatment relentlessly and find the best doctor for YOU! My last gi followed me for ten years and I really like her but we had reached a point in treatment when're it just wasn't working.
I live in a state that tracks people's er visits and because prescription drugs are so abused here, they are a bit paranoid about how many times you show up in the er and god forbid if you ask for pain relief! Even when I didn't ask for it,they gave me the lecture 'you can't have any narcotics..try alternative medicine'.. Listen.. I'm very open and have done every alternative therapy you can think of without lasting positive results.it took me going somewhere else and having a flare up along with passing kidney stones(a new and delightful sequelae of IBD!) to get attention! Never never give up!!love love!!:hug:

 

[jami]

I can relate also, I have been on a bland diet for about 3 weeks and before that was clear liquids for 2...I am just this week going to try and incorporate some regular food to see how I tolerate it. I had to miss 2 whole weeks of work which are 12 hour shifts also. I am just thankful I have very understanding bosses. As Ckt said never ever give up!!