I can not vent to my family and friends. They will not understand.... I can not vent to my husband. He will not understand.... So, I come here where I know that I will not only be heard, but understood.
I will try to make this a reasonably small rant. I am 42, and have been dealing with UC/Crohn's for years. My history is that of most of you. Had some great spells and some really bad spells. Through it all, I have had the support and love of my husband. He has been my hero and my rock. He has held me when I cried and spent weeks at a time sleeping on a hospital chair next to me. We both held out hope that one day, I would return to the way I used to be.

It has become clear to me over the past two years that he has reached his limit. Here is a little background. He owns his own business. It has been 6 years and the business is not a success. Not for lack of hard work, (he works harder then anyone I know), but because of the economy. In that time, I have held down a high pressure, full time, hour commute from home each way, corporate job. I do this, so we have income and benefits. It has taken it's toll on me. Like most of you, I rarely sleep more then two hours at a time due to bathroom trips. I am beyond tired all the time. As a result, I am probably not the happiest person to be around. I wait for him to see what his decision to start a business is doing to me. I wait for him to say, I will close the business, get a job and let you heal. Year after year, I wait. I have verbalized this to him and he is not hearing me. He says that I am not supporting his business. I think that I am by leaving the house everyday at 6:15 and going to a job I hate. Meanwhile, my resentment builds. It seems so clear to me, my friend and family what needs to happen. Yet, he blames me for being unhappy. He says that no matter what, I would be miserable. I can not get him to see that if I had time to rest, I could refuel and find joy again. I know that this disease has taken a lot from both of us. Our perspectives are so different. What seems obvious to me, he calls an excuse. We are in therapy together and yesterdays session was a doozie. The first 47 minutes were spent with him venting his frustration that I think if he gets a job our problems would be solved and that I have no goals etc. I had 11 minutes to respond, but was just too shocked to. I am sitting in my cube at work, (with a raging yeast infection, that is not clearing up, thank you Cipro and Cimzia) trying really hard not to cry. Thanks for "listening"

Poor kid, as if life hasn't given you enough problems...
You are between a proverbial rock and a hard place....you have a supportive husband who supports you and is now blaming you for not being supportive of him...
This business is his life preserver, his saftey net, his hope...It is the one thing that he can (or can't but thinks he can) control...he cannot help you with your health so he is a helpless bystander but his business is something that he 'can do'...if he looses it he looses control over life...
He is essentially saying to you, 'be as supportive of me as I am of you...inspite the odds, have hope'...
And because he did just that for you, he cannot accept any less of you...
Unfair but true. You need to put you corporate professional experience to work to help him either succeed, modify his business goals or close it down and cut the losses (would you accept giving up your pouch and cutting the losses by accepting a bag?)...
Do not allow this to put your couple in peril...it is so insignificant in the long run but is huge right now...Accept his critsim as the ransom that you pay for a supportive husband...I get the critsim without the hand holding and support but accept it anyway because he is 'there for me' even if he doesn't realize it...supportive hubbies are a 1 in a million catch and we pay dearly to keep them happy inspite of our medical shortcomings...I do it with home baked goods, fig jams, sexy lingerie (not so much right at this moment) and family gourmet dinners...
You do it with 1hr drives to and from work, long hours etc...
You have to ask yourself if the sarifice is worth it because he is in no condition to accept your critism on his business...choose your moment well.
Sharon

Sharon, you are the "Dear Abby" of the j-pouch world. Your words of support are so beautifully stated.

I used to love and read her religously when I was a kid...I guess ther her level-headedness and logic may have rubbed off on me a bit...
at least I can hope it had..
Sharon

Dear Maximaus,
I can relate to your situation on so many levels. I am a 43 y.o. male, and have been dealing with UC/J Pouch issues since I was 18. More than half my life has been effected by IBD issues. My first priority is to spend my energy on work and provide for my girls. Just to give you some insight as to where I am coming from, in addition to the J Pouch, I have arthritis, chronic muscle pain, and chronic fatigue.
You are right, rest would help alot. I am working only three days a week instead of five and it helps. Ordinary people cannot understand the energy requirements needed to manage this disease.
As a guy, and from my experience, I can tell you that your Husband is in a very difficult emotional situation that is not easily explained or understood. He is dealing with multiple issues (his business, your health, finances etc) that produce a wide range of emotions and feelings. His actions, comments or decisions may not seem to make sense to you, and that is due to all of the factors I mentioned above.
What my wife and I did was look at our situation collectively, as a team decision. We put all of the issues together and said, "what is going to work best for the team". We each play a part, and, each of us has to make changes to how we do things in order for the "team" to keep on going. For example, my wife started to work extra hours so I could work less. I spend more time at home, but I try to help out by doing chores around the house when I can. We adjusted our budget and stopped spending on non essentials. We have continued to make small changes and adustments along the way. Every little bit helps, and the burden is not just on one person, we do what it takes to make the situation the best for both of us. I hope this helps. I will keep you and your husband in my prayers tonight.
God Bless,
Markus

Thanks guys. I really needed that. Sharon and Markus. You have helped me more then you will know!

Good advice. I'd like to add a bit.

My husband and I went to counselling over 20 years ago after we separated. The therapist told us marital problems are 50/50 and that it's not the fault of one or the other. It was a hard concept for me to grasp but she was right.

Your husband had his 47 minutes this time and next time you should get your 47 minutes. It is going to be painful but you will have a better relationship if you both work at it. You got him to go to the therapist, which is a big deal.

Even though they live with us they do not understand how much harder things are for us. I went into denial after my UC diagnosis and pushed myself too hard, worked too many hours, and stressed myself right into fibromyalgia. I would hate for that to happen to you.

I don't know what your husband's business is but I'm a CPA and some businesses take 5 years before they turn a profit and the success rate isn't good even in the best of times. The type of business also affects how long it should take before throwing in the towel. If you can get to a point where you can plan together then you can discuss how the business has performed the last 6 years. Did he make more in the beginning or is it gradually becoming profitable. Then you should plan what needs to be done to either make it profitable or give it a deadline where if it's not performing then he'll find a job working for someone else. You need to tell him what a toll this is taking on you, like Markus and his wife did. Sometimes we, women, expect our husbands to know this but they don't recognize it unless we tell them. I think you have been supporting his dream for a long 6 years and you should point that out. Being sick is not the same as supporting your spouse professionally. Yes you are supporting each other but not at the expense of your health. He probably feels bad that he hasn't made a success of his business by now. You need to make him understand that you in no way consider what he's been doing as a failure and you are proud of his efforts - you talked about how hard he's worked in your post. He's gained valuable experience by running his own business and has learned marketable skills by doing so.

Bless you both, you are in my prayers too.

I hope your therapy sessions help you both.

Thanks Tougenough. It is funny that when you are going through problems, you think you are the only one in the world that has that particular problem. Then you come to this site and see that many have experienced the same thing and have amazing insight and advice. I sure do value this site.