28 Year Crohn's Fight of a Type A Girl

Hi everyone and thanks for reading my story. I am a 28 year Crohn's Patient who has seen, done, taken and shown almost all of it. I remember when I was newly diagnosed and did loads of research (as I have continued to do over the years). I decided way back then that I was going to run this disease ... I just wasn't going to let some stupid disease nobody ever heard of run my life and that has been pretty true.

Medical short story - I have both types of Crohn's ... fistulating and obstructing. I have taken every drug out there, 6MP, Pentasa, Prednisone, Sulfasalazine, 9 years of Remicade, yada, yada, yada. More fistula surguries than I can count, two resections, blood transfusions, a temp loop ileosotomy and finally a total colectomy and perm ileostomy in 2007 after blockage, abdominal abcess and bladder communication to colon. (That one almost killed me.) I was in a glorious remission for the last 3 years but now - I am out of remission. Eighteen inches of disease starting just past my stoma, fistulas that hopefully won't abcess, and pieces of bowel communicating with each other from disease. A second local gastrointerologist threw his hands up in the air and basically gave up on me. "Go back to the surgeon" was the guidance. I got lucky and my PCP referred me to Mayo Clinic for a 2nd opinion (a WONDERFUL PLACE for severe Crohn's patients). My hemoglobin was 6.6 when I got there last month. Now am back on the antibiotics and biologics with Humira - getting ready to start methotrexate this week. Another crazy chemical cocktail to try to kick me in remission - anything to slow the disease, avoid surgery and to avoid losing more intestine. Don't want to end up with SBS on TPN!

For the last 15 years - through much of this - I kept a high stress, high level position in a public company. Every doc I ever saw kept tellling me to get out of that job ... the stress wasn't helping me. I can't tell you how many docs I would see when I was sick and they would say - You are still working? Are you kidding? But type A girl kept reminding myself that I was NEVER going to let this thing run my life and I wasn't letting go of that. That obstinance is probably what kept me alive all these years!

So now, getting older, can't recoup like I could when I was 30. I am so tired of fighting, I just can't tell if it is my whacked out hemoglobin and recurrence of symptoms that is making me so darn emotional or if I really have just reached a point where I can't beat the disease and keep working with the passion I always have had.

I don't want to give up, but when do you just give up and go for SSI and disability? Not an easy thing for a type A girl! I don't even know how to go about such a thing. Would focusing all my energy on my body for an extended period of time do the trick and save my intestines or would I lose my mind from boredom after 20 years of challenging, high stress work?

Has anyone out there stood at the same fork in the road?

I would love to hear from you.

Thanks for listening to the story on my very first post.

Sungirll in Florida

Wow! I just have one thing to say to you A girl, keep on going. You ran your disease so many years and you are still full of energy (it came pouring out of my lap-top while reading your post). DON'T GIVE UP!!! You did it again and you managed. The tougher things get the better you A-girls get, isn't that so. I would seriously consider giving priority to my intestines rather than my job. When you get bored you will definately find a way to occupy your mind (either by going back to work or something entirely different that caught your interest). Are you an A-girl or not?

Don't give up, but I would ask for disabilty compensation if you're able to. We suffer enough, that's what it's there for, we pay taxes all our lives for instances like this.

I've been in and out of jobs for years. Was in the army, had to leave, went to evening classes, didn't make it because I couldn't keep a regular schedule.

I'm 30 years old and currently jobless until it gets better. My appointment with the doc is in 2 days, I'm going to ask for compensation. I live in Europe and it's hard to get compensation from the state, I just think I "deserve" it, you know. Oh well, hugs.

Hi Sungirl - from a Type-A to another! You shouldn't see cutting back or going on disability as giving up! You have done so much while fighting your CD; you should be very proud of your accomplishments. But, perhaps it is time to lighten the load.

I used to be an English teacher. And due to my type A personality, I was consumed by my job and easily was stressed out. I left teaching for a year with intentions of returning, but after being diagnosed, I know it isn't an option. Though I felt a bit defeated, I now have a great office job that I enjoy and is much better for me physically and mentally. So, don't think of leaving your job as "giving up", but perhaps as a more healthy alternative.

I wish you luck and I sure hope you get back into remission soon!

Please don't give up! I too have a high stress job that is in the legal world. My job makes me nuts, but after all it is just a job. My life is more important and as my husband says he'd like to keep me around. I too am trying to determine if I should just go for it and apply for SSI and give myself, my body, and my family a break from all the craziness. I continue running around trying to "act" normal and I'm not! I [we] have a chronic illness/debilitating disease for crying out loud! I think that everyone can give you advice on what to do, but you know that you have to convince yourself that’s it’s ok to let down and take care of you – screw the job if it’s hurting you, i.e. stress.

Hi Sungirll,
Welcome to the forum. That is some story, you've been through it all. Like you, I also have an Ileo, and I sure hope my remission lasts the rest of my life. I'm sorry you're flaring again. I hope the new cocktail gets it under control!

Sungirll said:

I don't want to give up, but when do you just give up and go for SSI and disability? Not an easy thing for a type A girl! I don't even know how to go about such a thing. Would focusing all my energy on my body for an extended period of time do the trick and save my intestines or would I lose my mind from boredom after 20 years of challenging, high stress work?

Has anyone out there stood at the same fork in the road?

I would love to hear from you.

Click to expand...

Hi Sungirll and welcome!

You have been thru a lot in many years and you keep on chugging away! It sounds like you are at quite a crossroads - re-evaluating your life and your career. It must be confusing/frustrating not knowing if shelving your career and thus the stress will do the trick and help get you into remission. Or will it be MORE stressful for you to not have the outlet of work that you obviously enjoy so much???

I loved my job at a company I was with for 11 years. But the emotional stress of trying to juggle my job and care for myself the way I needed to was just too much. My job was suffering and my health was suffering. When I decided to leave, my brother said to me, "I'll bet you look back and see that you were under a lot of stress there that you didn't even realize you were under." And he was right.

Is it possible for you to take a medical leave of absence for a few months? Have you exhausted all stress-reduction techniques that might allow you to continue working without it affecting you physically (yoga, anti-anxiety meds, therapy, etc)?

We shouldn't have to make a choice between career and health, but sometimes it comes down to that... and that should be an easy decision. In my opinion, anyway, health always comes first...

Good luck, Sungirll. I hope you can retain your remission without further surgery. And good luck making the decision about your job. I know it's a tough one. Hang in there!

- Amy

HI Sungirl

I think your story is inspiring. You have been through so much! I don't even know you, but just from reading your story I can tell you're just not the type to give up! It's ok to feel a bit down for the day (or week), and then you just keep going strong. Your spirit will come back and you will keep on fighting!
illowfight:

:ghug::ghug:
btw...we must be "neighbors". My daughter also goes to the Mayo clinic in Florida. They are amazing aren't they!

You are a very strong person! Please Do not give up! I know it is easier said than done, but you have fought too hard to throw in the towel. You will get thru this! I had to choose between my job which I loved and my health. And once the doctors told I would die without surgery and some kind of insurance (which I couldn't get thru my job) I made my mind that I would choose my health. It sounds stupid but at first I really had to think about it, I would loose a lot, because I would have to depend on someone else. But I do not regret my choice because I am here alive today.

Wow your story is powerful and you seem very grateful of your life even though it has throne you a lot of crap
I just wanted to ask if you are on any type of diet?
I can say myself with strict diet and natural medicines i have literally cured myself of Crohn's i know it doesnt seem posible but after 10 yrs of having Crohn's 1 surgery multiple biopsies, fistulas and internal bleeding. i now go to the doctors and they tell me that i dont have Crohn's because it is imposible to have it not show up at all in any test after every thing that i have gone though. Well i just laughed i know my Crohn's isnt cured for good but i have it under such control the doctors can only say i must have not had it. I find it very frustrating that then can say they messed up for 10yrs but when i did something myself i get no credit. years of research has made me the intelligent person i am today and i would love to help you. you seem at a perfect spot in your life right now to try something different and i think you deserve the break you have struggled far to long and with natural medication i know 100% you could be back at work live a stress free and wonderful life.
Plz PM me i would really like for you to have interest in this direction of correcting Crohn's

Hi Sungirl! I am going through the same thing you are right now work wise. I am just sick of feeling like I am letting my job down when I am sick, and I don't know if I can cope with both forever. I hope we can both make piece with our choices one way or another.

Welcome to the forum!