New user, Crohn's story (ongoing!)

[Sehath]

Hey dudes, Sam here, 25 year old male living with Crohn's disease. First diagnosed when I was 15. Had several rough flare-ups over the years that were thankfully all treated successfully and calmed with standard medications (prednisone, remicade, asacol, etc.)

I am currently in my fourth month of my most aggressive flare yet, on the other side of a one month in length hospital stay. I have tried and "failed" (as my gastro put it) both Remicade and Humira, and now the prospect of surgery is looming quite ominously in my future.

I am on Hydromorphone for pain, which I would not personally recommend. It is a powerful narcotic, certainly, but dependence developed quickly and the coinciding highs and lows have been almost debilitating.

I am currently seeing a therapist and am scheduled to meet with a mental health professional at the end of June to discuss medication (anti-depressants, anti-anxiety agents -- both issues I am genetically predisposed toward, without the additional causality of living with a chronic disease.)

I am the father of a beautiful 4 year old girl and proud owner of an English lab named Frankie. Both of these things are a driving positive force in my life, in addition to my wonderful partner Jen. However, they are also three innocent creatures I feel that I have been burdening lately with my disease. I have been suffering quite severely with pain, hardly sleeping at night due to frequent and prolonged bathroom visits, and living quite miserably with the correlary depression. At this stage in my life, I feel that I have become unrecognizable from my healthy self, no more than six months ago. I'm trying every day, but each day feels like an uphill battle, emotionally as well as physically.

So, folks, there is the truncated version of my story. Glad to find this forum. Looking forward to meeting some new friends.

Thanks, y'all.

 

[Sehath]

Also, my apologies if this bad boy is in the wrong forum. Just noticed the intro section.

 

[Clash]

Hi, Sehath, I just wanted to welcome you to the forum. Is the GI planning to try other meds before surgery? I know there is also the anti tnf cimzia. My has been on Remicade for a year and we added methotrexate six months ago. I hope the GI's are able to find a treatment that will work to get you back into remission.

I'm sure other members will be by shortly to welcome you.

 

[Sehath]

Howdy Clash, thanks for the welcome!

My GI has discussed Cimzia as a possibility, and actually intended to have it be administered earlier, but it was rejected by my insurance company. We are both hoping that after the fairly objective failure of Humira, they (the insurance company) may accept a new petition for the use of Cimzia, but my confidence is not at it's highest currently.

Anywho, thanks again!

 

[Clash]

Maybe you are right and with failure of both Humira and Remicade, Cimzia will now be approved for you!

 

[723crossroads]

Hi Sehath,:ghug:
Welcome to the forum and it honestly sounds like you are a very strong person and that you are handling everything quite well. But we all reach our tipping point sometimes, Especially concerning our fear of the ones we love. Worrying we are too much of a burden on them etc....I know it may seem that way to you ,but just the fact that you worry about that shows what a caring person you are and great Dad and partner. When someone loves you, really loves you, :heart:.... no not a song~ lol. They will do anything for you to not be suffering and they will support you through thick and thin. As long as you always do the same for them and never take them for granted. Never forget how lucky you are to have someone love you! Tell them everyday how much you appreciate them supporting you. It does mean so much.
Having crohn's or IBD of any kind is a challenge of our inner strength and character and just never stop striving to keep as healthy as you can and maintaining as normal of a life as you can. When you believe in yourself, everyone else around you believes in you too!:thumright: Stay strong and keep fighting!

 

[Hope345]

Sehath,

I want to welcome you to the forum too.
It is good to hear you are surrounded by the ones that love you.

I hope you can get all the care you need to get back into remission.
As you already know, surgery is the last resort, but if necessary it can be a very good step to get your life back.

I believe in the strong meds (My daughter is on Remicade, asacol as well.) But have you also considered some of the alternative methods? I have Dr Borody's email and he has been very successful in treating Crohns. If you are interested, I will send it to you.

take care

 

[KayleighMeek]

Hello and welcome to the forum. I am also just about to start cimzia but just waiting for the hospital to sort out the appointments to get trained in doing the injections, I also failed with remicade and humira.
Like others have said it is hard to rely so much on a partner to give support in so many ways and it can leave you feeling guilty. I try and make the best of when I am feeling ok and make sure that my partner knows how much I appreciate everything he does.
Keeping my fingers and toes crossed that they approve cimzia for you and you can start getting better.

 

[Sehath]

723crossroads, Hope345, and KayleighMeek,

Thanks so much for the all the kind words and support! I am doing my best to stay positive every day, and with the love of all those around me it is certainly easier, even when I feel like a burden on them.

Hope345, I have not explored too many alternatives yet, but am certainly curious about any and all possibilities.

KayleighMeek, my fingers are crossed as well! Thanks again! I'll keep everyone updated.