Struggling, need some support

[daveman05]

Hello,
I'll try to be brief in my story before discussing my fears and trouble accepting I have this disease

I'm 28 years old and was dx with Crohn's 5 months ago. I had my own PCP adventure, however, my older brother was dx with Crohn's disease 8 years ago and I was vigilant about getting a second opinion and get dx with relatively mild symptoms..

The only symptoms I had was: Occasional bright blood on tp and itchiness. PCP thought it was a fissure (which it turned out I had three, however they did not hurt).... My older brother when he was sick lost much weight, constant diarrhea, essentially all the classic symptoms..

After all the labs and colonoscopy, I was told I had ulcers in the terminal ileum (can't remember type of crohns) in addition to deep ulceration's. Dr told me I essentially have a "stealth" form of Crohn's in that I likely will have very little symptoms, however eventually I will end up with a bowel obstruction and I will require continuing surgery of my intestine (made a nice visual cutting motion).

Doctor recommended biologics (my brother did well on remidcaid) , didn't discuss any other options. She did talk about lymphona however it wasn't until later my wife told me that it was cancer... anyway

I've been on Humira for a little over a month and haven't noticed much change, with the exception that my stomach pains between meals have gone away (which were only present for a month). I have a 5 month old daughter, and the cancer risk scares the hell out of me, specifically the T-cell lymphona...

My wife, older brother, dad (who is a nurse) all have told me I'm being foolish and the benefits greatly outweight the risk... My brother in particuarily has talked to me that he has gone through the same thing, but given how sick he got after taking himself off Remicade he would have never gotten off (now on a different drug cant remember name but does carry a risk of a brain fungus).

I have a graduate degree and have taken statistics, and am aware of the concepts of how "risk" works in the medical field (proving causation, risk compared to general population, etc)....

HOWEVER.......

I'm having a terrible time shaking this fear... I'm feeling a bit better after talking to my brother and telling myself the risk of death from a bowel obstruction is higher than the cancer... also, that other drugs besides the biologics are not going to help etc.... any words of encouragement are much needed, I'm seriously wanting and considering taking myself of Humira and trying to go different routes...

Thank you all, especially those who took the time to read this. Very much struggling right now.

 

[Kero]

This disease is a scary one. So many variables and so many ways it presents itself. Many ((((hugs)))) and I hope you can get the answers you want/need. This board is amazing for info, and remember, when it comes to talking about poop on here, there is no TMI

 

[Honey]

Hi there and welcome, Remicade worked for me when all meds failed. Yes, I did have to come off it as I took a lung infection, but I am now well and taking steroids. It is natural to be afraid of side effects, I was. I only agreed as nothing else worked. When you are ill you have to do what works for you, and makes you feel better. Some people can take the meds and that works for them. It is a very fickle llness and what works for one may not work for another. So. do not worry about what might happen but deal with the now! Easier said than done, I know. Ask questions and express your concerns to your Consultant. That will help. Let me know how you are. Best wishes.
:rosette1::bigwave::rosette1:

 

[ronroush7]

Get doctor's advice going off medicine. I speak from personal experience.

 

[Optimistic]

I have no experience with Humira, but wanted to send you support as you sort through this maze. You've been through a lot with a diagnosis and a birth about the same time. Your world has been rocked! Congratulations on her, though!

 

[Tralfaz2013]

Dear Daveman)05

I was diagnosed when I was 26. We'd been married for less than five years. Our daughter was one year old. I thought my life was coming to an early end.

I'm now about to turn 64 in January 2016.

Yes it's been tough and just as hard on my wife. I recently heard her telling a friend that our children had only ever known their father to be be unwell and in and out of hospital.

I had my 40th birthday in a hospital in a city 300 kilometers away from home for a major surgery to remove my entire colon. I have an illeal pouch created inside as I refused to have a stoma when I was only 40 years old. I fought the cancer and I won that battle now almost 25 years ago.

I still have my misery days but I have had a stellar career working in government including 12 years in politics in the heart of our parliament in Canberra. I have traveled the length and breadth of Australia on work trips and on holidays. We have traveled overseas on many occasions and in 2006 was selected by my Rotary International colleagues to lead a GSE Team from Australia to the UK for a six week cultural and vocational exchange. I had a few problems on these adventures but would have not missed these opportunities at any cost.

I can assure you that if you continue to think of your family, be positive, do some mild exercise and eat what ever suits your gut then - and only then - can you look to an almost regular life and enjoy everything that it brings your way.

Rely on support groups - thank God for emails.

Trust your doctors but you must talk to them and communicate your symptoms, your feelings and especially anything that changes.

you have a long life ahead and I trust you'll enjoy it all.