Hi PV! Boy, do your concerns for the future remind of my past! In DH's case looking back, he must have developed Crohn's shortly after our first year of marriage. His first hospitalization was in 1966, but then they said he had an "ulcer". In 1977, a local surgeon told us he thought DH had a malignant intestinal tumor and sent us to IU Medical Center there we learned that he actually had Crohn's. He did have a resection at that time and was in the hospital about 4 weeks. He has had two additional resections since then with the most recent being in 2004. They don't want to operate on him again.
When DH was officially diagnosed, we already had three little girls so the decision to have or not to have children was already made and I am thankful it was that way. I really think we might have had a fourth child, but like you I was fearful of what the future held and how I could possibly manage. I am sorry that you don't have family close by to offer support to you. While I have always had family close, unless you live with a chronic illness, you don't "get it"! There have always been visits and hugs, but they always have their normal lives to get back to! LOL! And that is as it should be.
Everyone has to make their own choices of course regarding having children, and I don't know the severity of your DH's disease or what path his illness will take. I don't think I could have ever ruled out having children, but everyone's situation is different. We too worried about out daughters developing Crohn's...some believe there is a hereditary tendancy and others do not, but of course we worried about it! There are no others in DH's family who have ever been diagnosed with Crohn's so who knows! Now that we have grandchildren, we worry about one of them developing Crohn's...the concern never goes away I guess.
In the early years, I know I didn't want a "sick husband" and all that went with that. Money was always tight, we didn't get to do a lot of things others did. Plans were often cancelled/changed at the last moment because DH was not feeling well. He says that I raised our girls...while he was sleeping! And sometimes, I admit it felt that way. But I loved him, he loved me and we loved our girls and so we moved forward. You just take it as it comes...that's not to say you are always happy about it though.
DH always had a decent job with good insurance and when he needed sick leaves, he took them. We always lived beneath our means so that we could manage when we had to. We didn't ever take on much debt, our kids didn't wear designer clothes, family vacations were modest. When the girls were small, DH's parents raised beef and kept our freezer stocked with meat...that always helped. Sometimes things were tough. But I will tell you this, the good always outweighed the bad! We are a strong close knit bunch and I know DH's illness is a great deal of the reason for that. "Taking care of Daddy", has in part, helped to make them all strong self-sufficient women. Even with a chronic illness and all it entails, we have been blessed!
Please don't spend your days looking too far ahead. Many of the things we worry about never happen! (Note to Self: Re-read this paragraph periodically!) We don't have crystal balls to show us our future. We can live each day and hope that tomorrow will be as good or better or we can hide in a corner and be miserable each and every day...when all is said and done those basically are our choices.
There are so many new drugs available now to treat Crohn's which weren't available when DH was diagnosed. I know many of them have scary side effects, but lots of things in life are a trade-off. Lots of people are having good results from Remicade. DH has not tried Cimzia. His gastro talked to him about another injectable drug a visit or two ago, I am not sure if it was Cimzia. Doctor has also brought up the possibility of DH going on artificial nutrition because he is 5'10" and weighs 130 fully clothed. But that too can offer a whole host of complications and you have to involve home health care in your life...and then there is the decision as to when do you stop? DH went on disability in 2001 at age 60. Not what he wanted, but it was time.
I, of course don't know where you live, but if I were you starting out with a Crohn's diagnosis at this point in time, I would find the best hospital/gastroenterologist in the area that I could. You need a no nonsense doctor who keeps abreast of the latest advances and who will take the time to know your individual needs. You will have to become his advocate. You will have to fight some of the battles for him. Know your insurance policy, what it covers and what it does not. DH has always been self-sufficient when it comes to taking his meds, but not all men are that way. It is important that meds are taken when they are suppose to be taken...especially when they feel well.
Being new to this board, I don't know if you can send private e-mails, but I will check it out. If so, I will send you my e-mail address. You can feel free to reach out to me at any time. We "Crohnie" wives have got to stick together! Thank you for the welcom and cyber (((Hugs))) to you!