Posted 4/14/2008 4:49 PM (GMT -6)
Thanks so much for replying. My husband's upper part of the colon is involved (mid transverse colon and ascending colon) and there maybe (don't know yet), some terminal ileum involvement - the rest is quiet in terms of inflammation now. A surgeon has been following his case, and said that if surgery was needed, he would have to get 2 stomas (one for his stool from the small intestine), and the other for the colon to weep into (mucous). And after things healed up and the crohn's flare is under control - they'll put the 2 back together, and no stomas.
I do want my husband to avoid surgery. He's on PPN (Peripheral) and he's starting to add foods back into his diet - his cramping has somewhat diminished, he's not taking any pain medication (but is going to be asking for something that's less strong and addictive than dilaudid, since he doesn't feel his pain right now warrants dialudid). He's however, very wary of eating. Today he's had, one can of vanilla ensure, a small bit of rice, one grilled chicken breast, and a slice of white bread. For dinner, he's ordered one hamburger patty, little bit of sphagetti noodles, and a slice of white bread. So I think by mouth he's taking in today about 800 calories, which really can't sustain him at home. The plan right now is to see if he can tolerate more foods by mouth, and we can get him off the PPN, and also see if he can keep himself hydrated.
I have a job that involves travel, and it's just my husband and me. As it is, I've already taken quite a bit of time off work. How can I take a husband home who needs constant care, and keep down a job? His energy is horrible - and he has tachycardia from the stress of being sick. He's been bedridden for the past month really. I'm hoping that by the time he gets discharged from the hospital that he's able to at least walk around a little bit and take care of himself a little bit - I can cook and put meals in the fridge, but I need him to be able to at least microwave it, and take his own meds.
Our lives were so normal before this started last month - he had regular bowel movements, that were well formed - no constipation, no diarrhea, no pain, no blood. All of a sudden, here we are. I'm so scared that we'll never again return to a normal life. Do you guys mostly have a normal life, or does crohn's just take over, and you can never enjoy life again?
I have a few more questions:
* The doctor said when he did the colonoscopy, he didn't attempt to get past the inflamed area in the transverse colon, because of risk of perforation, and that he has inflammatory crohn's, not fistulizing crohn's as far as he could tell. So, we don't really know if he has any strictures. Should I ask the doc to look again, to see if maybe that's what's causing him problems? He's still bleeding - do strictures bleed, or just cause pain? His pain is just low grade discomfort, and occasional low grade cramping, especially while eating.
* Would a CT scan show strictures?
* Does he have what you'd call steroid refractory Crohn's? We've seen some minimal improvement, but he's very far from normal after a week on high dose steroids. He's had some reduction in pain and cramping, and some reduction in frequency of D. He still has watery D with blood and an uncomfortable feeling persisting in his belly along with some cramping, and some tachycardia, and very low energy.
* In your opinion, what should my husband be able to do before I can take him home? Eat foods and keep himself hydrated, and have some energy to take care of himself (shower, shave, heat up foods, walk around the house to get himself stuff, etc)? How do I know he's well enough to come home?
* If he doesn't get to that point, and he needs to come home with IV nutrition, would I have to ask for a home nurse or something?
I know this is a long post, but I am so scared, and I don't know what I need to do or what to expect. I've never seen my husband so sick, and I keep waiting for him to get better, so we can go home, but all we've seen so far is very minimal improvement. Please tell me it'll get better - I'm really afraid that we've lost our lives to this disease, and we will never be happy again.