When is it time to face reality?

[seminolewind]

Hubby has been battling ulcerative enteritis for a year. In that year he has gone down hill to the point that he sleeps all the time and only gets up to go to the bathroom. He won't listen to me because he "trusts" his doctor. He gets the chills real bad every evening. I think he needs blood. And with the steroids and Humera, he most likely has NO immune system left and he just doesn't understand that he is trading inflamation for NO resistance to anything. I have just had enough . You can only say you will probably feel better tomorrow so many times. Maybe it's denial.

He asked me if it would bother me if he got an ostomy. I said get the vacuum and the new bags and I'll practice, LOL

 

[sourland]

Sadly, we guys can sometimes be a little thick headed. Have you tried researching on the web and printing out some information for him?

 

[seminolewind]

My husband's middle name is "doctor". He's spent hours/days/months reading on the websites. He may be looking at a colostomy because between the disease and the meds, he so incompacitated. (sp) . He's 71 now. At least his parts are still fixable, LOL.

 

[lazy gardener]

I'm so very sorry. It's hard when the most important person in our life is suffering. It's a very helpless place to be. The only thing I can offer is prayer, and that, my friend, I will do for the both of you.

 

[seminolewind]

Thanks. I think he is slowly coming to terms with it. On the other hand I see him "pretending" to be normal and so tired and weak.

 

[seminolewind]

I think Hubby had a real kick into reality today. He collapsed in the kitchen and was then talking jibberish. I called 911 and the ambulance took him away. Surely this will shake him up and he'll do something or listen.

 

[Suzie]

I think Hubby had a real kick into reality today. He collapsed in the kitchen and was then talking jibberish. I called 911 and the ambulance took him away. Surely this will shake him up and he'll do something or listen.

So he is on some TNF blocker medication...

I have TNF blocker medication also...mine is Enbrel...it can result in some horrible side effects...

I am so very sorry that you and he are suffering from this..hopefully the Hospital can sort out a satisfactory dose of his drug to help him and you both to live a normal life without unwanted side effects...

Sending you much love....

Remicade is another drug that you may be able to consider...

It is all about balance..versus the debilitating circumstances we can find ourselves facing...no answers but quality of life is what to me matters....c'est la vie...

 

[seminolewind]

Thanks Suzie. He's been on 2 different steroids and Humera. And of course now he's sick and has been having the chills for a few weeks. I tried to tell him that steroids suppress the immune system and so does Humera, and well, they did. His hemoglobin was 6.6!!!!!!! Normal is up around 14, so he's anemic. This is what happens when one is in denial. They just keep acting like they are fine.

I hope they scare him darn good, LOL. I know I sound mean, I'm really not. I just hope that someone gets thru his thick head before something bad happens.
Thanks for listening, sometimes ya just feel that you gotta talk

 

[donrae]

I'd sure be looking at an ostomy. I know they're icky and all that, but sounds like his life isn't much right now. At 71 I'd be doing surgery now, honestly he's not going to get in better shape as he ages. Get him topped off and transfused, stabilized and fine tuned, and find a good surgeon. An Hgb of 6 means he's been bleeding for quite a while now, probably, so I'd sure call it a fail on the conservative treatment. I'm sure not one to rush to surgery, but sounds like it would be appropriate here. Good luck to you both! Plus, you know you can get him on Home Health for his supplies, at least at first.....

 

[seminolewind]

Rachel, that's exactly what's going to happen!!!!! A covering md visited him yesterday and was the first one to tell him straight up what he needs to do. So he's being discharged today and will be talking to a surgeon this week.

We are both in the medical field. He's a respiratory therapist and I'm a nurse and familiar with ostomys . I don't think it's such a big deal except for the acceptance part. I think what's gone on in the past 3 days has been an eye opener.

Funny he just told me this morning that he was going to do the surgery, then I opened my BYC and saw what you wrote!

Karen