At a loss

[heislivingwithcrohns]

My husband age 40 has Crohn's for most his Adult life. Diagnosed about 6 years ago.
It has been so so hard on him and all of us.
His insurance alone is 800.00 a months, that is with out the cost of all the medication.
For about 5 of the years he was addicted to all the pain medication.
Which his doctors felt and feel is the only way to really control it.
At time it wasn't unheard of for him to talk 500 + a month.
So needless to say has created a whole nother set of problems.
The depression, sleepiness, and the anger. He hasn't been working.
The anger he and I have had
with the illness is horriable.
He has a doctor that is one of the top notch specialist in norther cal.
but honestly at this point I think he has been on every type of med.
and it just doesn't help.

The reason for me being here is in hopes of finding some way to help us all deal with this better. To hear your story and to know we are not alone!

 

[Crohn's 35]

Hi and welcome to the forum.. Having Crohns is hard on a person because there is no cure and medications dont work for everyone. Having financial difficulties and being the "bread" winner of the family, it is very frustrating for him and some people tend to shut down and go into depression which is even harder on the heart and his Crohn's. Some men dont like to talk about their problems and I understand how you must feel being helpless. I have had Crohns for many years and had 2 surgeries and every drug known to man. It depends how severe his symptoms are and where it is. You said he has been on all drugs, does that include the biologics like Remicade and Humira? If not I would look into that. Sometimes surgery is a big help and keeping "his" diet under control. Alot of people suffer and do take pain meds but if someone is in that much pain all the time, I would think surgery maybe a big help. Some have surgery and it never comes back, some are stable.

Everyone is different. He really needs to deal with this disease and maybe see a counsellor, could help. Being there and supporting him really helps. I am sure many people will come here and give you some insight as well. Big hugs to you, I know you are hurting too, hope you both can get on the right track. Keep us updated ok?

 

[bethyd78]

This disease can take over your life. Yes it is debilitating yes you are in pain. I agree with Jetta lady I would seek some counseling b/c friends and family really don't want to talk about a chronic illness if it goes on for a long period of time. Yes
you can get dependent to narcotics but if someone is in terrible pain you just can't ignore that fact it must be treated. Try hard to keep your chin up be positive if you have a strong religious background then pray. It is very easy to have a pity party. I have had one several times I have been dealing with this illness. But try to pick yourself up and take baby steps. Get up everyday and shower have a plan of what needs to be done that day. And seek counsel it does not take it away but it does help. Bless you!

 

[My Butt Hurts]

Hi and welcome. Good for you for being here for him.
Has he tried any of the 3 strong drugs? Remicade, Humira, or Cimzia? What about methotrexate?
There are a few other things that he possibly hasn't tried, one is the SCD diet. It has been known to help some. LDN is a drug that some people on here have had luck with. Some doctors won't prescribe it, but search for it on here to read about it. There is a totally liquid prescribed diet that rests the bowels called elemental (or something like that - different names in different countries) it would be very hard to do, but a few people ion here have had some luck with it.
I don't have much pain, so I can't help you there.
Good to have you here, there is a ton of awesome info to read up on on this site.

edit - there are also 2 med trials going on right now. I have no idea what the names of them are, but people on this forum are on them. If you read enough, you'll find them. One is Vedomibub or something like that.