Just started my first round of humira

[Calikid78]

Hello, so I was diagnosed with Crohn's disease earlier this year, had my appendix removed (on accident I believe due to the inflammation I had at the ileum in my intestines), shortly after I had my appendix removed my crohns continued to flare up getting worse and landing me in the hospital for a week.  I have fistulas and have lost 30-40 lbs I'm only 5'6 and now only weigh 120 lbs.  I'm taking 6mp (mercaptapurine) and Saturday I finally started taking my first round of injections with humira. Doc said it should help to heal the fistulas and hopefully send the crohns into remission. I guess I'm really hoping this stuff fixes me up so I can find out what happened to whoi used to be before all this **** went down

[Calikid78]

ya i feel better now at least down there, somewhat at least, ya know its not nearly as tender but lucky me now i have a constant discharge again, gets all crusty n shi t. sux, specially during intimacy situations.... sigh not to mention i have a seton placed as well if u know what that is...

[Calikid78]

Hey there bman, and everyone as well, but that actually really does hit home, it all does, the part that reallh makes this all so much more very difficult to cope with the depression and that is the loss of my friend, not sure if I posted it or not, pretty sure I did, but I just having a hard time seeing happiness in life as it is, and then struggling lwith the crohns and struggling with the pain meds and the fske azz mofockers I have to deal with on a daily basis, really isnt reassuring about happiness in life, and belive me I know my life isnt "bad", just feel so isolated, I live with my family still, but I cant explain it.

[avtmom]

...so, do you feel better now?

Terrible procedure to go through, however, did it work?

[JGOODMAN]

You have my total sympathy - especially with the lancing - with mine, they took hemostats, clamped down on my skin, and cut a button-hole - I saw stars!  It truly taught me how to tolerate pain, I think I went into shock.  I've also experienced the problem with the pressure against the bladder - I think that is one of the biggest inconveniences.

I'm walking a tight-rope currently - no health insurance for the past four years.  Two times my fistulas closed and abscesses formed - I prayed and prayed and prayed and they drained outward on their own (inward would be toxic and deadly) - the second time, I got wise - and stuffed gauze coated with epsom salt paste in the area overnight and that helped it within a matter of hours.

Presently, I am getting by with no medication [knock wood], living a somewhat normal life - although things get rough when I don't have enough sleep - and the best thing that I can suggest is to hang in there, and fight for your health - learn everything you can about the disease, supplementary diets & nutrition, any elements of your former lifestyle - I've always said this disease requires active efforts to "mind, body & soul" to gain some stability - if any three of those are running weak, it presents an opportunity for the disease to grow strong.

Best of luck traveling if you choose to do so - never hesitate to send a private message - I didn't have the liberty of a support system with Crohn's - it was still a relatively uncommon thing 12 years ago that many people didn't know about or were not diagnosed for.

Regards,

J

[Calikid78]

Hey there j, thx for the advice but honestly sleep is hard to ******* come by, I find myself getting up to use the bathroom, possible absess pushing on my bladder so its painful when I urinate and part of why I have to frequent the bathroom all nihhy, and then its really.hard to fall bback aslleep, and yes its so very depressing, so yesterday I went to the dr cuz I was nervous I had yet another fux king fistula, of course I was right and the moment he looked at it.he wanted to get me inti surgery for today, wasvlike dude I got work bro, he told me we could do it right here but ur gonna scream, disnt have much choice as I am to leave for prague on monday, and when I told hom about prague he seemed worried like asked me if the ibd dr knew I wss flying, just stressful, laying there after having my *** lanced basically, holcding the pad of gauze up to my ***, I began to lose it laying there on my side, pants halfway down, just started balling like out of nowhere.  I also struggle with borderline addiction/abuse of my pain meds which makes me feel like crap, but its so hard to not feel mormal and the one thi.g that gives,me some comfort are those stupid pills, I know they dont make me bettet, or feel better, but like I said they do give "ME" comfort and relax me.  I hate this vicious cycle.  By the way, havon my *** poked and prodded and stuck,  m sliced with jist some novicaine or w/e the effff it was, nibthat **** was painfull.

[JGOODMAN]

My heart truly is extended - I was diagnosed with Crohn's - fistulas included - when I was 24, I'm now 36.  

It's important to remember is that things will return to normal.  The pain and changes in routine are quite difficult - and for most people, once treatment is obtained, the disease can be managed and the body tends to heal.

What I do suggest is take every active attempt you can from this point forward in your life to ensure you get enough sleep, learn how to manage stress, and don't hesitate to speak to a DR about the depression - Crohn's for some people can worsen depression since part of our bodies are sick, not absorbing nutrients properly, the pain - and not to mention - the reality of it can be rather depressing if you think about it.  Laughter worked for me - I realized that certain things in my life I can't all entirely control - but I can learn how to cope, do my best, and accept where I am at today and work towards a better tomorrow.

Hope your recovery arrives quickly!

[Calikid78]

thx for the response, and im dealing with so much more then just my crohns, which is not good for my crohn's, lotta depression and stress as i lost my best friend last year and i am quite the homebody/loner, dont have anyone i really feel close with or that i have anyone to really do anything or go out with, so i find myself dwelling.  if im working im good but work is sporadic and not guaranteed, which is stressful, paying off hospital/dr/surgery/anesthesia bills is stressful, parents gettin older and my mom has some hardening of her heart wall... great more stress, not to mention all the stuff i cant seem to get up and do which i stress about and the fact that i dont get up and do it stresses me out

[avtmom]

Sounds like your Crohn's came on strong and fast.  If it is any consolation, many Crohn's patients have their appendix removed at some point in the process.  Your GI doc can explain the "benefit" in future diagnosis of flares and/or perforations.

I wish you much success with the Humira.  The shots can be painful, but Humira does help manage the pain associated with Crohn's.

You'll probably discover a "new you" in the process of your journey with Crohn's.  You might even surprise yourself.

There is a book called "The Foul Bowel" by John Bradley.  It is one man's 30 year journey with Crohn's Disease.  The experiences and sense of humor make his story relateable. His perspective on how to cope and move forward with life makes the book worth the read!

Best of luck to you.