It’s funny you should mention Crohn’s, because that’s what I’ve been feeling for the last few weeks, based on the symptoms he’s displaying and has been displaying for the last few months.
The doctors did say that they would be testing him for Crohn’s, and they did also mention trying to rule out celiac and other food sensitivities as well. I’ll be talking to his doctors again tomorrow, as they should have some of the results from some of the tests that they ran while he was in surgery.
My heart is with you,I hope that things do look up for you,all Dopers are on your side.
Never give up and may god bless you and yours.
In the event that a hit comes along that feels like its going to push you over the edge (car repair, utility bill, etc) consider www.modestneeds.org.
Sierra Indigo, god, I wish I could say something other than I’m sorry you’re going through this and if I can help I will.
Everyone understands that being sick is horrible. Some people don’t understand how hard it is to be “the healthy one” in the relationship.
The pressure on you right now is enormous. Be gentle with yourself.
What is worse than being sick is not knowing why exactly you are sick.
Hugs to you and your husband.
I’m kind of surprised that they still haven’t decided if it’s one of these conditions. Everyone I know who has Crohn’s landed in the hospital when it first got bad, and they tested for it early in the diagnosis process.
If it is Crohn’s, I hope it’s one of the cases that responds well to medication, like my dad’s (I’m hoping the same for my brother and I, should either of us develop it too - it can be hereditary). It’s been more than 15 years since Dad’s had a flare-up bad enough to put him back in the hospital. I had to bring him to the e.r. once three or four years ago, but even then they managed it and he was home the same day.
Thanks again for the well-wishes everyone.
Today was a bad day.
It didn’t start bad, I got to the hospital after work and we talked a little, watched a little TV and a doctor came in so I could have a chat to him.
Basically it breaks down like this - he came in to the RAH (Royal Adelaide Hospital) and was put under the care of the surgical team, because the acute pain seemed to be tracing back to a physical bowel obstruction. This was escalated to the point of surgery, because the pain escalated. The doctor confirmed the surgery found nothing too out of the ordinary - a slightly distended section of bowel that seemed to be where the “blockage” (more of a slight jam) was centred, and the aforementioned lymph nodes. We’re still waiting for the histology to come back, but the surgical team are pretty convinced the swelling is definitely reactive, not a cause.
Once his incision has healed enough for him to open his bowels without causing him undue pain, they’re going to hand over to the gastrology team, who will do a colonoscopy and do all the screening and testing for the GI diseases - Crohn’s, celiac, food sensitivities etc. If they don’t find anything, obviously we regroup and reconsider.
But after the doctor came it got bad. Something I said or the doctor said upset him, and he started shutting down and shutting me out. I’m ashamed to say something snapped a little inside me. I ended up crying at him, telling him I can’t cope and I just don’t feel strong enough to be able to support him. I even said that at times I’ve considered killing myself - which is true, but not entirely related to his situation. I’ve always had a bit of suicide ideation going on, but it’s him who keeps me grounded. I would never kill myself because I can’t bear the thought of leaving him on his own.
I’ve been trying so hard not to make this about me - and now I’ve just dumped all over him and been a complete arse. I could kick myself for being so fuck-headed sometimes. I don’t react, I go nuclear.
We did come back to a point where we were a bit calmer at the end of my visit, and I called him after I got home and I think we’re good again. But I hate myself for doing this. He’s in a horrible place right now and I’ve just gone completely off my tit at him.
Don’t be too hard on yourself - it is really, really exhausting when your loved one is chronically sick. You have to be loving and supportive and able to provide care while doing all the housework and running back and forth to the hospital / doctors office / actually going to work and trying to get things done there. And especially when you don’t know what it is, and/or can’t do anything to make it better. It’s so easy to lash out at the sick person, even when you know objectively that it isn’t their fault. But there is also nothing wrong with letting him know (in a calm and loving way) that this is rough on you, too, and if there are things he can do (or not do, or say) that would make it less horrible.
I don’t have any good advice, except to offer hope that it won’t always be this way. You and he and the doctors will get this figured out and managed, and it will get better.
Seconding this. You did something that, while not commendable, was a natural and normal reaction to the absolutely shitty situation you’re in.
{{{{{Sierra Indigo}}}}}
Just wanted to send out supportive thoughts to you. I know what it is like to try to live on nothing. My husband has been laid off twice, once right after we bought our house too. It is so difficult to go into each week wondering which bills are going to get paid, and where the money is going to come from.
I also have gone through health issues myself that sound a lot like the symptoms your husband is experiencing, and I know how miserable it is to be sick, and not know why, or how long you are going to be sick. I know how hard it is not to be able to eat anything without pain, and how it feels to just not want to eat at all anymore. So I just feel for you both right now. It is very stressful.
I just want to encourage you to keep getting tests, and see different doctors if you can, and try to make sure they know the whole story of his health. Like you said, sometimes Dr’s can get ‘stuck’ on one diagnosis and not look at other things. If you or your husband have a feeling it could be something else, by all means insist on getting tested for that.
It’s hard to not know. Just wanted to say to keep moving forward, try to stay strong with each other. You and he are the most important, the rest, even the house, is just stuff and can be replaced.
My brother was on a merry-go-round of that sort of testing for six months or so, culminating (for now) in a laprascopic appedectomy. I’m pretty sure that my brother would have continued getting sick on a more or less monthly basis a lot longer before the start of that merry-go-round had not my sister-in-law gotten fed up and drug him to the doctor.
Six months of more questions than answers sucks–and my brother stayed healthy enough to contine being the primary breadwinner. So obviously, the solution for him is probably not the solution for your husband. But even being on the periphery of such a situation is stressful, and you are deeply involved–and probably stuck worrying the most about bills and such.
Don’t be too hard on yourself–take care of yourself. Try not to let him be your reason for living–that’s an unfair burden to put on someone already dealing with issues. But behaving badly under severe stress does not make you a horrible person.
I hope you get some answers soon.
It is about you. Unless you’re taking good care of yourself, you can’t really do much for other people.
I work in the medical field, and there is a term for healthcare workers who get stressed out by having to care about everyone else’s problems all the time: “compassion fatigue”. When you give and give and never get anything back, it does become exhausting and frustrating.
I really think it would be helpful if you could look for a counselor to discuss these problems with who might be able to help you with ideas on how to cope in a healthy way. Perhaps the social worker can tell you if there is a support group for caregivers at the hospital.