Husband in hospital for last month with c-diff and crohn's

I'm sorry you are having to go through this, it must be very frightening. I think especially with it being your husband. I know the one time my husband was very ill, he seemed to shut down and just become very stoic about the whole thing. Not very easy to deal with for a woman who wants to know everything that is going on.

Did the doctors say anything about any inflammation? For me the high doses of IV steroids have always worked very well except when the inflammation was from scar tissue. I was hospitalized for about 3 weeks on high steroids and TPN and nothing was working. I did end up having to have a resection because the inflammation was from scar tissue. Of course this was before they did stricturplasty. I'm not on Remicade and have never done the typical Remicade infusions, even though I have tried it, but I do know that it take time for it to kick in. That is why they usually use the steroids until the other meds start to work.

I hope the doctors can figure out the right combo of drugs soon to help get things under control soon, and I'm sure someone will be along shortly who has more knowledge about c-diff and Remicade than I do. I'll be keeping your family in my thoughts.

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.

PV

Hello PV,

Oh this is a lot to deal with! I am so sorry you both have been through so much. When you have been hit with such a disabling blow, it is often hard to imagine that you will ever come out the other side. I think it is especially hard when you haven't had bad health problems to speak of. I was quite healthly and then BAMB! I was very ill for 4 months and sloooowly recovered over another 2 months.

These long serious illnesses knock you down to the ground and turn your head around in circles -- but please, please do not dispair. You must keep open the real possibility that he will get better and you will have a life again! It is normal to be sad and even to grieve the loss of health and the loss of your life as you knew it. But remember that although your life may be different for a while or even long-term, it could be even better in its own way! I am much closer to my family now, and and so very happy for that!

It sounds like he is making slow improvement. I am happy to hear he is easting what he is! His progress may be slow but the key is whether he is going in the right direction. Keep adding up the little steps forward he has made. You may suddenly see that they add up to something real. Healing of this type takes time, unfortunately. Once the drugs kick in, his intestines can start healing. I find making plans keeps me focused on the positive. For example, you might talk to the hospital's nutritionist and your Dr. about what to do when he gets home. You will be able to increase his nutrition as he improves and you need to know the best way to do this -- supplements, etc. Also, what is a good set up for him when he gets home (furniture, comfy chair). Maybe sign up for NetFlicks.

As for caring for him when he comes home, please lean on your local church. Most have ministries for this very situation. Also, many hospitals have social workers who are very familiar with services (free and paid) that are available in your area. Is there family that can come in to help? I had to go live with my sister for many weeks because I live alone.

Please let us know how things are going!

Isaiah 41:10
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

When I came home from my first hospital stay, I was so weak, and sick that we had to move in with my parents for a few months. I was totally exhausted just to shower in the morning let alone be able to take care of my 4 and 2 year old! I really couldn't do much of anything besides care for myself, and I didn't do that very well, but little by little he will get his strength back.

I might be inclined to stick to the liquids longer. A hamburger patty seems a little rough to me right now, but that is just my opinion....I would stick with the ensure, protein shakes, and lots of liquids for maybe even a couple of weeks.

Forget the 3 meals a day, I would see if every couple of hours, he would drink a can of ensure or a protein shake. I think he could get more calories in him, and it would be easier on his gut than regular food would.

Yes, life will get back to normal. I now work part time, and also work out, and keep up with the kids also who are 7 and 5 now. Life is good! So, hang in there....this too shall pass.

Thanks for the update! It certainly sounds like your husband is going in the right direction! That is wonderful. I think what you are hearing from the folks here is that it is normal for healing to take months -- this is something most people haven't experienced before so they have no frame of reference. Crohn's people often just don't heal as fast.

As for your own self, yes, you must take care of yourself! How is your nutrition? Don't feel at all guilty about turning to meds during this time. Make sure you get plenty of sleep. Tylenol PM puts me out. A marriage is about being 2 halves of one whole, and this is your time to care for your other half. So you must take care of yourself in order to be able to care for him too.

Another support group may be a local CCFA chapter (Crohn's and Colitis Foundation). The website is www.ccfa.org. I don't know what area you live in, but the hospital's social worker may very well know of churches and non-profits who can help as well as emotional support groups for you.

Take care!

PV, hopes and prayers for you and your husband. I know its hard right now but hang in there. Sounds like the doctor is on the right track..

PV,
I have taken Ensure before as a supplement and found that it always gave me diarhhea. Now I take Breeze by the makers of Boost (Novartis). It's lactose free and fat free and provides 250 calories. I tolerate it well. It might be worth considering for your husband.
I hope he starts to improve soon so you'll both have some peace of mind.

Thanks for the advice. I've asked my husband to stay away from hamburger patties and to stick to chicken and fish, and I'll keep encouraging him to sip on ensure through the day. Unfortunately, the c-diff is dangerous enough that I'm pretty sure they won't take him off the Vancomycin anytime soon - so he'll have to heal despite the antibiotics. Also, he has very severe side effects with Flagyl, so they can't use that for either the c-diff or for treating CD. He's had D twice this morning, and he thinks it may be more brown than red today. Of course, it's so hard to tell if he's really actually making positive steps.

I've asked my mom to come from India and help me out when he's ready to come back home. I will also call around, and also ask the hospital about social workers etc.

I have a few more questions regarding my husband's condition:

* Have any of you had tachycardia during flares? Especially in the morning hours, my husband seems to have tachycardia - his heart beats like at 120 beats per minute if he's doing nothing but sitting up in bed. It seems to settle down towards the afternoon, and comes down to below 100. What do you do to try to control it?

* For those of you on remicade, how long does it normally take remicade to kick in and to see significant improvement? He's approaching one week since his first infusion. I know it's different for everyone, but I was wondering if there was a median number of days by which most people saw improvement.

* My husband has what he calls an "unsettled feeling" in his belly almost constantly. He says it's not pain, but it does prevent him from feeling comfortable. This also stops him from sleeping well at night. He also says he feels "gurgling" especially after meals. What would you guys recommend for this type of pain management? He's also got cramping, but he says on the pain scale of 1-10, they're between 1-3 (mostly 1-2), and he doesn't want to take dilaudid for that. He tried Morphine 12 hour release last night, but didn't do significantly better. Is there something else that can help him with this kind of low grade pain?

Thanks for much for your help.

PV

I am so sorry your husband has both going on.  I can tell you from personal experience that it is extremely hard to figure out if the c.diff is causing the diarrhea or the crohns.  Usually if the diarrhea is persisting they try 2000 mg of vanco orally for about a week then lower it to 750 mg.  Within 48 hrs at that dose it should go right into remission the c.diff that is.  You can ask them if you could have him try the high dose for a few days because if the diarrhea is from c.diff it will stop at that dose.  Is he on a probiotic?  If not, you might ask the doctor about adding VSL#3.  It can be ordered via internet and has to be refridgerated and remain so.  If there is remaining diarrhea then you know it is probably from the crohns and can work on that.  I hope this works.

Good luck

Chris

The tachycardia is very common on pred. When I was on pred., mine was consistently over 100. I hated the feeling also...they might be able to prescribe him something for that, my pcp did for me.

Remicade...is he getting his next infusion in a week? He should be. The schedule is your first infusion, then another one 2 weeks later, and then your next one 4 weeks after that. Then you start your every 8 weeks, or 6 dependng on what the dr. orders are. If the antibiotics are the reason for the D then don't expect the remicade to fix that.

Morphine does nothing for my pain...doesn't work on me. Demoral (sp?) works well for me. If his pain is only a 1 or 2 might tylenol work? There is darvocet also...

I still say that he should be on a liquid/soft diet if he is inflammed as his dr. said.

The decrease in pain is great! Unfortunately, until he gets off the antibiotic he might not have formed stools. As you know, antibiotics can cause D in people with crohns, and people with crohns sometimes have a harder time when they are on antibiotics.

That is good that they are getting him up in a chair, and even a little walk down the hall if he can tolerate it would be good.

Pain will cause your heartrate to increase. When my daughter who is 7 had an upper and lower scope a couple of weeks ago, I watched her heartrate go up on the moniter as they were inserting her iv. I asked her if it hurt and she said yes, thus the increase in the heartrate.

It sounds like he is heading in the right direction. Just keep encouraging him to do what he can and unfortunately it is going to take some time to get his strength back. Hang in there!

For me...it's the benzene in the saline flush they use before starting the IV and/or Remicade that gives me the D. Glad to see he's still making baby steps! Can he have bananas yet? They are a good binder for the stools...just make sure they are ripe!