I apologize in advance, but I'm about to compose a short novel.
My husband and I have been married for 12 years. Two days after we got married, he left for basic training with the Air Force. About two weeks into it, he got sick and so they pulled him out of basic for testing. They diagnosed him with Crohn's, so he got a medical discharge and came home.
For a long time, his Crohn's didn't do much to affect us. I guess his symptoms were controlled, or we just didn't know what the symptoms actually were. Well, in the past few years his Crohn's has gotten drastically worse. In April of 2013 he had a resection and for a while he did better. But he has fistulating Crohn's. All the fistulas are on his perianal area, and for the most part they've always tunneled outward. However, now they're tunneling up toward his urinal tract. The fistulas drain A LOT and have a bad odor from the discharge, and of course he's very self conscious about it. I can't imagine having that. Sometimes the back of his shorts will be soaked, and when he stands up from his chair, the chair is wet with this leakage. It's hard on him.
He also takes Remiciade. Thankfully, since he was diagnosed in the military, he has all his medications provided by the VA. We are extremely thankful for that. But the closest VA is an hour and a half from here. When you get two or three of those appointments a week, it's a lot of car time. He's getting tired of the driving and very discouraged. Especially when the Remiciade makes him feel sick and he has to drive home. I can't go with him, I have to stay home for work and to get the kids after school. We don't have anybody here to help us with them, so I can't go to all of his appointments with him, though I do what I can.
On top of all this, he has depression. I think it's due to the Crohn's.
Just Thursday we had a surgery consult, and it looks like the next course of action is an ileostomy. The biologics aren't doing anything to help his fistulas and he's sick of dealing with them. He feels bad a lot too, and the fatigue is so, so hard. He'll come home from work sometimes, go to sleep in his chair, and get up to go to bed.
The ileostomy has brought up a lot of emotional issues for him, namely him thinking he can't do his job anymore (which I do agree with him about) and feeling like a failure because he can't support the family like he feels he should be able to. I've worked part time, and so I'm looking for a full time job. He needs this surgery, but can't have it unless I'm working full time, so there's the added stress of that. And then the kids, he's worried he won't be the dad they're used to after he has this surgery. He's afraid how it'll change his relationship with them. They're young, eight and seven, and our seven year old is especially worried about his dad when he's sick. So my husband has that to worry about, too.
All of this has made him very moody. He goes back and forth, from what I've always known him as to this crying, moody man who I can't help. I love him, and I want to support and help him, but it's getting harder and harder. I just don't know what to do anymore. All I can do is be here for him and assure this isn't going to make me leave. We have a strong marriage and relationship, but I know this has to make him worry sometimes. After all, we are going through a lot.
The past few weeks I've been really upset and moody myself, it seems like I can't do anything right or I can't do enough. With the way he's acted lately, it's made me feel even worse. I'm not sure how to deal with him or what to say, sometimes I don't even want to try. It's hard to deal with his depression. I'm almost to the point of walking away and not trying anymore when he's in those moods. I'm just not sure what to do.
I think I found a full time job and I'm really excited. I was relieved by it, but he doesn't seem to care. I thought, hey, I've found a solution to one of our biggest problems. (Finances, those are always stressful.) But then he's almost so nonchalant about it, I'm not sure what to make of it. It's really discouraged me.
I've been in tears the past week, unsure what to do, and I have no close friends so I don't have anywhere to go vent. My husband is on a support forum so I thought maybe there's a Crohn's spouse forum out there somewhere. So glad I found it. I see a lot of people going through many of the same things. I don't want to say it's a relief to see it, I hate it that anybody is going through it, but I will say it's nice to have found the people who unfortunately are.
I respect everybody for sticking it through with their spouses and doing what they can. I know first hand, it takes a lot of strength to deal with all of this. I feel my strength failing, though. I'm having a hard time keeping myself together. I'm a Christian and I can't imagine doing this without my faith. But sometimes, and I feel terrible for saying it but feel like it's the truth, I need somebody to say something positive to me. God tends to be quiet. I know He's there, but I'm not getting any affirmation right now.
Whew. Well, I guess I did drop a short novel on you. Sorry for the rambling. I've been so upset the past week, for the past three days all I've done is hold back tears. I see all the wonderful things in my life and I see all the blessings I have, but the bad things are taking over. They're on the forefront of my mind now more than anything else. Even if nobody reads all of this, it feels better just to get it out.
Thanks so much for letting me go on like this. I needed it. I hope all you strong people have a moment for yourselves today, to renew your strength and relax.
:voodoo:
