How do your partners deal with your illness?

You guys probably recognize me on this board now - husband who we thought had ulcerative proctitis, 2 months ago, diagnosed with c-diff infection, didn't get better with treatment, colonoscopy revealed crohn's in traverse colon and up (don't think there's any small bowel involvement - ct scan for small bowel was clear). My husband first got sick on March 4th. Over 2 months later, and after 45 days in the hospital, he's still nowhere close to normal. He's now on remicade, 80 mgs of pred, lialda, canasa, colestipol, and flagyl and vancomycin for the c-diff infection. He's had 2 infusions of remicade, and is due for his third on May 22nd.

We're home now, and he's somewhat managing - he's lost 35 lbs, can't sleep at night because of the pred, has frequent bowel movements (with pretty loose stools - not quite liquid D, but just like a slurry). He's mostly pain free, but still can't sleep through the night, and has to get up at like 4 am to go potty, and then again at 7, etc. He's not getting enough sleep, and since I sleep in the same room, I don't get enough sleep either. We saw his doctor today, and he basically said we're doing everything we can medically, we'll see how much better he gets with the next remicade infusion, and to call him if things start going downhill (which they seem to be - 2 days ago, he was getting close to formed stools, then, he's again in some pain and his stools are getting more liquid). Also, to top it all off, he's developed foot drop from the meds he's on (most likely the flagyl) - we have an appointment with the neurologist to take a look at that, and a call into the infectious disease doctor to see if we can stop the flagyl.

I am having an incredibly hard time dealing with this horrible disease, and the roller coaster ride that we're still on. I _hate_ our lives, and I'm mourning the loss of our life before all this started. I love my husband, he's always been my rock, my safe harbor. I love my husband, but I am having so much trouble thinking constructively and positively. I just can't see that we'll ever have any good times again, and I keep asking myself if this life is worth living. I am so tired of living like this - my husband went from being a very young 42, with absolutely nothing wrong with him, to being a 42 year old with a chronic illness, taking horrible medications, and facing some horrifying consequences from both the meds and the illness itself, not to mention the fact that he's not the same man anymore - he's tired all the time, looks so frail, has lost so much muscle mass, etc. etc.

I am trying to take each day at a time, and trying to be hopeful that each day will bring him closer to remission. However, with each passing day, and with each small set back, I am slowly losing all hope. Here's my question:

* How do all of you, and your partners deal with this illness? How do you carry on like normal, smile, concentrate on the tasks at hand, go to work like normal, go out with friends, learn to laugh again? It seems I have lost the ability to do all the above. Please help.

PV

First off, I'm sorry you are going through this.  My hubby is my rock, I'm the Crohn's patient.  I think you are in a time where he's feeling terrible and they haven't quite gotten the meds figured out.  It took a while for Remicade to start making my life better.  I would go into the doctors, explain what you are having to deal with and see what he says.  It's hard, your life has changed, it' won't be exactly like this forever, but will possibly not ever be the same.  But you will get good days back. laughter and love.  You will learn to make the most of all the good days, probably  not take anything for granted.  Don't beat yourself up, your doing a terriffic job, remember you hubby is terriffic too!  It will get better, sometimes relapse, but they will get him feeling better, it takes time.  Take care of yourself, your in the right spot for support!!! HUGS TO YOU!! FROM ME!!!

You have to have hope that your husband will get better than he is now... even if you aren't expecting him to be perfect. A lot of what he went through was probably the C-Diff and not just the crohns. That said, I had to go to therapy at one point because I repressed all those healthy feelings that you are having right now. I never "mourned" my disease. But don't feel like you have zero chance at a normal life. Most likely your husband will eventually get to a point that he can go out and do stuff again, just with some accomodations. He might still have to eat carefully or be near a bathroom but your life isn't over. Try to make time for yourself. It is important to take care of him but maybe once a week go out with your friends! Just because he has to be home right now doesn't mean you have to be.

Regarding your sleep - your body will likely adjust. My husband used to be a police officer and I was a corrections officer. We worked totally different shifts. He would be getting home from work at 3am and I would be getting up for work at 5:30am. It got to the point that he could come home, change, and get in bed and I wouldn't even stir. I would get up get dressed and leave without him waking up. It took about 4 months for us to really get used to it. Sometimes it would scare me to wake up and see that he was or wasn't there. It was insane that I didn't notice.

Also, maybe you could make a deal w/ your husband. If he has to get up once to use the bathroom in the middle of the night, no problem. If he is getting up frequently then he needs to go sleep in the spare room or the couch. Or, if you wanted to be extra nice, when he is keeping you up, go sleep in the spare room or the couch. You could also sleep w/ ear plugs and a face mask if that helps.

I really hope your husband gets better soon and please do not give up hope that he will.

Sarita - I know how you feel. Last time my hubby brought me to the ER I didn't want tests and wanted to go home because he was so tired and falling asleep standing up. I knew he had to work the next day too. It made me feel really guilty looking at him.

You folks are so awesome! I wish I could meet all of you, and get to know you all personally. Thanks so much for being here for me. I'm crying as I type this - I live so far away from family (all my family is in India), and I actually married my American husband against the wishes of my family. They don't hold it against me or him anymore, but it's still there in the back of my mind - they're probably wishing I'd listened to them and not married my husband. It is so wonderful of you guys to be my support on a weekday, late in the evening. Thanks so much!

PV

I was always a firm believer in NO meds for depression/anxiety until this disease hit. I didn't even realize that I was depressed! I fought the doctor tooth, hair & nail, even stopped taking my meds for depression once and reached an all time new low! As you can see I take Lexapro daily and yes, it has made a world of difference! You can't base your med decisions on someone elses dosages...how do you know your friend is actually receiving the right dosage for him/her?

Is your husband taking the prednisone in the morning? If not, this will surely affect his sleep! It should be taken prior to 9am. Try to see to it that his caffiene intake is low as possible while on prednisone too! This includes sodas, coffee and chocolate! Also, sometimes pain relievers can have an opposite effect on some people. Instead of making me sleepy...it makes me hyper...so I am very careful not to take anything 3 hours prior to bedtime. When I was on the prednisone (up to 60mgs daily) I would take my Lexapro at the same time to balance out the side effects....Trial and error my friend!

As to your "future" and what successes and failures we have as Crohnies...keep reading here. While there are a lot of vents, there are some huge success stories here too! Try to concentrate on the positives each day. Yes, there will be minor and sometimes major setbacks. To tell you otherwise would be a outright lie. However, each of us, each day is finding our own way through our journey and for once in our lives we truly have learned to appreciate each minute and moment of life given to us to share. It sounds as though your husband has found this understanding in his meditation as well. Now, it's your turn. Choose not to deny yourself this! Please try and get some rest with or without your husband in bed with you. You've had a grueling time and you would be suprised just how much sleep and some good nutrition will do you too. Go out for a walk in the fresh air & sunshine. Start small on your "normal" daily routine and add tasks or edit tasks/schedules to accomadate your needs and your husbands needs. Rome wasn't built in a day, a month or even a year! We have full faith in you and your ability to adjust to this. All you have to do is make the commitment. And Kudos for calling that counselor! If your husband isn't up to it right away...go ahead without him. That way you can share your feelings totally unrestricted! Good Luck and we're always here!

Bell-That was absolutely beautiful! I have chills running up and down my spirit!

PV,
I know how difficult it is, especially at the begining. I'm sorry you and your husband are going through this. I echo what some of the others have said - once you go through a greiving process, you will establish your new "normal" or your new "reality" and be able to find joy in things again. There have been times where I thought I would never live a happy life again. But I adjust my reality and move on. Once you accept that new norm, you'll be able to enjoy life again.

There are adjustments that you'll have to make - maye not as much traveling, maybe some adjustments to your intimate relationship, but just beccause things may be a little different doesn't mean they can't be great.

Best of luck to you and your husband.

My wife has moderate to severe crohn's.  She was in the hospital for 3 months during Christmas of 2006 and New Years of 2007 while I was at home with our 2 and 4 year old kids. 

I lost my mom to Leukemia, she was only 50.  She died at home in my arms.

My grandfather died an awful death from Asbestos.  I was also there when he passed.

My daugther was in the hospital at 2 weeks old with RSV and asthma.  She laid lifeless in my arms while I was giving her meds to be able to breath again before the ambulance arrived at our house.

This happened to me in the last 10 years.

No, I don't have crohn's or any other medical condition.  But I am thankful that I am healthy enough to help my mom, my grandfather, my daughter, and my wife in times of need.

My mom went through an awful battle with leukemia.  The day she died, she looked at me and said "Sorry".  She barely had the strength to say it.  I said "What are you sorry for?".  She told she was sorry for not having the strength to beat leukemia.  She didn't care that she was sick, she didn't care that she was dying, she never complained about "why me" not once.  She was more worried about her family the last hours of her life and she felt like she let them down.

No one asked to get sick.  No one wants to be sick.  But those of us who are healthy must find the strength and courage to do everything you need to help your loved ones.

I hope my point wasn't too harsh.

 

I have had Crohn's for 15 years including one resection. I think it's important not to minimize one's pain - everyone is different. But I think it's important to try to keep a positive attitude. My husband is completely understanding and listens when I have a bad day and cry. My children know that when I say "I need a bathroom", that we have to get one FAST. They never make me feel gross, disgusting, or sickly. I only feel that way myself. I just think a positive attitude can make a big difference in how you live through this cause it's not going away. My 85 year old parents are getting older and weaker. My 21 year old daughter is suffering from Bulemia, a scary eating disorder. In the bigger picture in my life right now, I worry more about them than myself. It's a good distractor for me.

Hello PV,

Usually it takes a serious problem to make us really take a look at the reality of life. It is short. We will not live or be healthy forever. We were never promised a long, healthy, happy life. Our bodies really do start to decay and mall-function. Some faster than others. No amount of exercise or "healthy living" will stop this process. Some have chronic problems over long periods of time. Some have to endure a limited life.

In my opinion, life is about recognizing these facts and that we are not in control, AND understanding that our character is measured by how we deal with it. A serious problem gives us the opportunity to really examine life and ask our creator the hard questions about why this life is the way it is. Ask why and then be open to hearing from his perspective. He even asks us to ask him! He see the very big picture and often uses adversity to get our attention and show us how to have a healthy relationship with him. He promises not to give us more than we can endure, and there is great comfort in knowing this. If he gives it to you, he gives you the tools to deal with it and will help you walk through it (and sometimes carry you!).

I had quite serious CD problems over the last year and a half. Infection nearly killed me. But I see now that it is all about getting a closer relationship to him and learning to trust him explicitly. And this lesson has been absolutely invaluable to me and is very precious!! And ultimately way more valuable to me. The Billy Grahm website has a good discussion of handling suffering that you might want to check out -- http://www.billygraham.org/LFA_Article.asp?Articleid=131

Take care.

Thanks so much for the kind, inspirational and comforting words. I do work and I have been trying to go to work every day - my job requires self-motivation - no one gives you things to do or timelines to meet - you pretty much set your own goals and work on them. I used to be really good at this. However, right now, I sit and stare at my computer screen, and can't find the motivation to do anything. My husband really is doing better than he was 2 weeks ago - he's not in pain, he's tolerating a low-residue lactose free limited diet, he is not having any blood in his stool, and he is starting to put on weight (3 lbs in the last week). However, while I acknowledge all those facts, I still can't focus on anything but the immediate and the distant future. He's on 80 mgs of pred (40 in the am, 40 in the pm), Remicade - he has a skin rash from the meds, and I worry it's something more than just a rash (like Lupus - though it doesn't look like a Lupus rash, and it doesn't hurt, or itch). He's on flagyl and vancomycin for keeping the c-diff under control until he can taper off the steroids, and he's got foot drop - I think it's because of the flagyl, but the doc says he can't stop taking it - so we have to see neurologist, and hope his movement comes back, and also hope that it's only peripheral neuropathy and not something more serious like MS (his aunt suffered with MS for a long time). I worry that the pred will hurt him - he's likely going to be on high doses of pred for the immediate future.

As for the long term future, I worry about lymphomas caused by the meds that he's taking, liver damage, future flare ups being worse, facing surgeries, stomas, fistulas, obstructions, strictures, losing so much bowel that he becomes malnourished . . . the horrors are just overwhelming. I know I should not worry about them, and face them if and when they arise, but my head just won't listen to me. I've always obsessed over things, and caused myself more anxiety than needed - but this time, I've just paralyzed myself with fear and anxiety.

I am glad you guys are here, to give me some perspective, and to help deal with my fears. BillyLitt, I am so sorry for everything you've had to endure, and I thank you for "But those of us who are healthy must find the strength and courage to do everything you need to help your loved ones." I hope to find this strength and courage, but at the same time, I also hope to find some enjoyment of life, not just enduring each day, but able to find some enjoyment in each day. I think Belleenstein, you should write a book about your experiences, and your perspective on life - you write beautifully, and yes, I'd pay money to read it.

Our employer has been fantastic to us - they've allowed my husband to just login and work from remote, and they've allowed me the same flexibility. I know I need to start being productive again, both for myself, and for them - which is why I'm talking to the therapist, and trying to get my brain to function somewhat normally again. Hopefully, I'll get on the right track soon. In the meantime, we've made some decisions that should help us live a low-stress life - we were going to move to a new job, but we've shelved the idea, given how wonderful our current employers have been. This also means we don't have to go through the stress of selling our house, etc. Through this ordeal, I've really come to understand that "health is wealth". We've decided to just be happy in our current jobs, and not let work ambition bring stress into our lives. We have everything we need financially already to live happily (at least in terms of finances). And our situation here is such that, if my husband is unable to work, I can support us on my salary. So, we have a lot of things to be grateful for - having a job that lends us the flexibility of working from remote - be it the hospital or home, wonderful employers who have gone out of their way to do everything they can to keep stress away from us during this nightmare, and also our doctors have been great with us - they've worked hard to help my husband avoid surgery.

Wow, you guys really are fantastic - for the first time in over a week, I've actually feel a little more positive about life, rather than tumbling down the black hole of despair and fear. I will make and keep my appointment with my therapist. I may be back and I may need more shoring up, but I thank you so much for being here and for taking the time and effort to lend support to me.

Hugs to everyone,
Preetha

It seems this post has really touched an emotional chord.  I started to skim it last night, but I didn't really have a lot of time, I can't believe how big its gotten!

I did want to add that as someone who showed signs before I got married, but wasn't diagnosed until around our 3rd anniversary I always felt a bit guilty.  Like I had trapped my husband into marriage to a sick woman.  Then he started working with a girl who had CD and couldn't seem to find a boyfriend who would stick around.  That got us talking and I finally asked the dreaded question, "Would you have married me if you had known that I had CD?"

The man can't lie to save his life, so he said "no, BUT, it would have been the biggest mistake of my life."

So, our life hasn't always been easy, but I know he's in it for the long haul and that no matter what we'll get through it. To this day, it probably is the sweetest thing he could ever have said to me.

PV, things will get better.  Thats how this disease works, flares come and go and it just takes time.  It is the rare CDer who doesn't get some relief and live a somewhat normal life inbetween flares.  But, you need to do whatever you need to do to take care of you as well.  Remember, you can't take care of others if you are run down.  Please take care of yourself too!