I don't know what to do anymore.

[JUSTINtime.]

I am 19, male, and a student. I have been battling crohn's for 11 years now and for the first 5 or 6 years it was easy. now ever since i was 15 it's been bad. pretty much most of high school sucked, but i got over it. and then i went to college and had the best year of my life. then last summer i got horribly sick with a crohn's flare up. and while i have not been in remission for a few years it was livable. last august i had to drop out of college, break the lease on my apartment, and rack up tons of debts in the process because i was so sick. now im living at home with my family, i can't bear it here but im surviving.

it's been just over 6 months since i came home and still im struggling. i started humira months ago with amazing success and thought it was going to fix me for good. but now it seems that was too much to ask, it does work in a way, but fades off after about a week. ive already tried remicade a few years back and the same thing happened. i have never had surgery (thankfully!) and i hope i never will.

i cant go another day like this. i cant stand pumping crap into my body and risking all these deadly side effects for something thats not going to work. i know i sound selfish and childish but im just getting so fed up with everything. i keep gaining weight after my humira injections, like 5 pounds each time, but it's lost the next week after it wears off. and i feel like all my hard work gaining weight is worth nothing. and im absolutely embarrassed about my weight. im 5'11 and 125-135 (it fluctuates every two weeks pretty much). i look like a walking skeleton and its getting harder to get used to it when all i want to do it go to school, work, and be happy. people constantly just blurt out how "god damn skinny" i am and it's pretty hurtful but i just smile and let it be. my friends think its fine because im gay, but i don't like feeling like skin and bones, it doesnt feel good, it's exhausting to do anything. i am stuck in this house with nothing to do but smoke weed (medicinal and recreational dont judge) which does help me the most.

i need help. i am seeing my doc in the coming days and i want to talk with him about seeing a nutritionist and what to do about my weight. and i need to figure out other ways of combating this disease with more alternative sources, my docs never seem to mention them, only pharmaceuticals.

sorry for the bible length story. any thoughts would be greatly appreciated.

thanks people.

 

[Mary]

Hi Justin

Im sorry that you are having a hard time...I was diagnosed with Crohns not even 2 years ago and hate it already. I just started Humira and am very scared about it and its side effects also. I am 42 and could not imagine having this disease when I was younger. But...I do know of alot of people on here and in my personal life that have had this disease for a long time and are doing very well with it now. Try and keep good thoughts (easier said than done I know). You are already a strong person to deal with this...and will only get stronger as time goes on.

 

[lamor32twigs]

So sorry you are going through this. I was diagnosed in college, but thankfully was able to make it through and complete my degree.
do you have a good GI that is working with you and trying other meds? Are you on pred? Just wondering if a prednisone boost for a while would stop your flare and you would be able to keep some of that weight on.

Try to stay positive, you will get through this.

 

[JUSTINtime.]

thanks ladies.

@lamor32wigs: i do have an amazing GI, hes young and cool and gets along very well with me. I was on pred when i was first diagnosed and it threw me right into remission, but the side effects messed me up a bit, slowed growth, weight gain, you know..
i wouldn't want to do that again, i want to speak up about LDN, probiotics, and diet. hopefully he listens. ill let you ladies know what happens. thanks again.

 

[whysoserious]

I'm sorry that you are going through this. I'm not diagnosed yet, but I also had to drop out of college. I hated it.

Have you talked to your GI about this?

 

[JetWhite]

Hi Justin,

I'm so sorry to hear about what a hard time you are having and I can imagine that you are fed up having dealt with it for 11 years and only being 19.
I don't have Crohns I have Ulcerative Colitis and haven't entertained surgery yet as it it only the colon they can remove.
But I have had surgery for other diseased organs and, while I cannot advise, I don't think you should discount surgery if it could mean improving your quality of life.

I expect there are many on here who can tell you of their experiences and I hope things balance out soon for you. Hang in there, I'm sure something can be done to help a little :hug:

 

[ameslouise]

Hi Justin - Sorry you are having such a hard time.

Have you talked to your doc about going to weekly Humira injections?

Who do you see in Philadelphia? I see Dr. Osterman at Presby and he's great.

There's a lot of other treatment options like Cimzia, 6MP or Methotrexate - has your doc mentioned any of these as possible options?

Good luck - keep us posted! - Amy