Half my life

[hangingon]

half my life

hello,
I've had crohn's for half my life. I had my colon removed at 19, I don't have an ileostomy, I have a j-pouch. I am allergic to sulfa-based meds, and am resistant to remicade and humira. I have fistulas. one old one with a seton in it, and 2 new ones that have just popped up. I am 31 and was originally diagnosed when I was 16. I have been around the block with this disease and know how much it sucks. I am coming out of remission and am uncertain what is in store for me. I'm pretty sure at least one surgery and probably another seton. For now it is test after test. I work long hours on my feet, and crash at the end of the day. Luckily I have an amazing husband and family who support me.

that is all for now. hopefully I can contribute to this board and maybe help someone else out. that is how I thrive.

 

[Sybil Vane]

Hi Hangingon! I just joined, too. Remicade is not working for me--before this last surgery, it would give me four weeks of reduced symptoms so it was worth the infusions, but now I don't even get a reduction of symptoms so I'm going to have to choose between Humira and Cimzia. I'm going to check out the treatment forum and see what others have experienced. I'm sorry that you may be facing another surgery. Surgery is so painful and awful. I've had three in the last three years and I developed a fistula from the surgery site that led to a big abscess they had to drain. I was on TPN and very ill for a long time. I told my GI that I will not have surgery again unless it's an absolute emergency and I will die without it. I know it's dramatic, but I just don't have another surgery in me. I'm keeping my fingers crossed that these tests tell you something!

 

[Jessi]

Hello and welcome to the family! It's too bad that remission is ending for you. I really hope you and your GI find a treatment that will get you back soon. I know what you mean about crashing at the end of the work day. I couldn't handle not being a momma for my kids after school, so I resigned from working. I'm very blessed that I can afford to make that kind of decision. I'm glad you're Hanging On though. :hug:

There are a few other meds that you could still try, but there is also stem cell therapy for those who qualify. We have a few members here who have done or are currently doing it. I've only heard good things about it.

I'm really glad that you joined. I hope you feel at home and stick around.

 

[David]

Greetings and welcome

I'm sorry you're having so much trouble right now As Jessi mentioned, Stem Cells are pretty exciting, I'd suggest starting here. Another area you may want to research if you're not familiar with it is enteral nutrition.

I'm really glad you joined. I hope to see you around!

 

[xJillx]

Hi and welcome! I am sorry to hear you are coming out of remission. I hope you and your doctor can come up with a plan to get things in check.

Hang in there!

 

[hangingon]

thank you all for the welcome! it is nice to have a place like this full of people who really get what is going on. it is also a really great resource.

Sybil-your kitty is adorable! i am sorry to hear your last surgery was so difficult. when i had my resection it took almost 2 months to heal because of all the abscesses. they are truly awful. i was on humira for a time, and even though it wasn't right for me it was the least expensive and easiest to use.

Jessi- i'm jealous. i wish i was in a position to be able to not work, but my company has the best insurance so... what can i do. i will look around the board and check out what other options are out there.

David- thank you for the head start!

 

[Grant]

:hang: hanginon, you've been through the mill. Try & stay as positive as possible.
Hope you feel better soon.
Grant