How do your partners deal with your illness?

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PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/7/2008 6:26 PM (GMT -7)   
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
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Currently in hospital for past month
Canasa, Lialda, Vancomycin, Colestipol, Elavil, IV Solumedrol 120mgs, Remicade (1st infusion April 10, 2008), FloraQ, FloraStor, Morphine Time release for pain


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/7/2008 6:45 PM (GMT -7)   
PV,
First I want to assure you that what you are feeling is very normal. I think we have all gone thru it, are going thru, or will go thru it. Please do not take offense at the this (I only want to help)... I would suggest thinking about going to see a therapist that specializes in chronic diseases/medical illness. It sound very rough right now and his disease is flaring hard. This is a huge transition for you two and chronic illness is a high stressor on relationships. I am not saying you can't do it alone. I am saying what harm can it do to get some professional help with adjusting to this disease? They are there to help you thru this if you want to.
Good Luck,
Navy
[color=cyan>Forum Co-moderator - Crohn's Disease</FONT>
<FONT]We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants)
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<FONT color=red>All suggestions/options/opinions are caveated with please consult with your local health care provider...[/color]

Post Edited (MMMNAVY) : 5/7/2008 7:58:21 PM (GMT-6)


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 5/7/2008 7:03 PM (GMT -7)   
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!!!

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 5/7/2008 7:07 PM (GMT -7)   
I agree with MMMNavy. The best thing you can do for yourself and your husband is talk through this with a specialized counselor. They are not there to over analyze you or your situation, only to help bring the both of you through this life altering disease by bringing you both to a level of understanding of this experience and most importantly, to HEALING which includes emotional support. Your husband needs you now more than ever and your relationship deserves to be happy and stress free! Please consider making this commitment today...I promise you WILL NOT regret it!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/7/2008 7:14 PM (GMT -7)   
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.
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 5/7/2008 7:15 PM (GMT -7)   
I agree wholeheartedly with Navy and Broom, they are wise ladies. I am about ready to drag my husband-to-be to therapy too. I'm sure it's no fun for him. I try to minimize the misery as much as possible. Since I am a medical student I know what symptoms are worrisome, which ones are mere annoyances, etc. and that helps, but it sucks for him because he simply has to sit there and witness it no matter what (although if I go to the hospital I can't even have him there with me because it's too stressful for both of us; he literally drops me off and picks me up when I am discharged! That might sound really messed up but it's what works for us at this point).

It is absolutely VITAL that you guys figure out how to keep this disease from chipping away at your marriage. It will, at times, inevitably. But a counselor could probably help you figure out how to minimize it. I feel for you. There needs to be a support group for the support group! Oy vey. You vent away any time you need to, here...
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/7/2008 7:19 PM (GMT -7)   
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.
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/7/2008 7:26 PM (GMT -7)   
A friend of mine recommended a therapist, so I called and left them a message today. So, I do recognize I need help - so, hopefully I'll hear back from the therapist soon, and hopefully it'll turn me around. I've also been wondering if I need to see a psychiatrist and get some meds to help me cope. I certainly don't take offense to being told I need help - I know I do. I do worry that therapy may not help, and that I'll get hooked on meds that don't let me feel anything (at least this is what a friend of mine who suffers from depression told me about the meds that he takes - that it flattens everything, both the highs and the lows).

My husband is coping with buddhist teachings and meditation that focus the mind on the present, and being mindful of the present, not the past or the future. However, it doesn't work for me - I see him, and immediately I start crying - he looks so different now than the man I saw 2 months ago, it is killing me to see him like this. I have all this fear about our present, and our future, that I am not really functional anymore - I do what I need to do to take care of him, but other than that, I am a total mess. I think sometimes, it is just as hard, if not harder to watch him be this sick.

I am usually a very happy person - however, the only thing that's keeping me going right now is that I have people who depend on me - my husband, and my parents. I talk to my friends, and I am pretty open about how I feel, but they don't really understand this disease - I get platitudes like people live with this disease, I know a friend's father who has had this for 10 years, medicine is getting better all the time, they have drugs for everything these days, blah blah. I've told myself all of those things, and still it doesn't help. Intellectually, I know that I can't sacrifice the present because I fear the future, and because I mourn all the things we've lost, but I don't seem to be able to get past the fear and the anxiety of what may be. I hope therapy and some meds take me away from this precipice that I am hovering over.

Maybe your personal experiences will help - do you enjoy life for the most part? Are you happy? Can you travel? Can you keep working despite this illness (I know you have flare ups sometimes)? Are your families happy? Do you have a sex life with your partner? Is a good life really possible? What sort of compromises have you had to make? What dreams have you had to give up because of this disease? Even if you're in a mild flare constantly, are you able to live a full life? What compromises have your families had to make because of this disease? Are you or your family members suffering from depression because of the disease? If so, what do you take for it?

Thanks for being here. I'm so sorry for what you all have to go through - life simply isn't fair at all. I'm sorry I'm rambling. If you all can share some of your motivation with me, and tell me how you manage life, maybe it'll help me.

Thanks so much.
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Currently in hospital for past month
Canasa, Lialda, Vancomycin, Colestipol, Elavil, IV Solumedrol 120mgs, Remicade (1st infusion April 10, 2008), FloraQ, FloraStor, Morphine Time release for pain


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/7/2008 7:36 PM (GMT -7)   
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
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Currently in hospital for past month
Canasa, Lialda, Vancomycin, Colestipol, Elavil, IV Solumedrol 120mgs, Remicade (1st infusion April 10, 2008), FloraQ, FloraStor, Morphine Time release for pain


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 5/7/2008 7:54 PM (GMT -7)   
Hey PV - keep in mind, a lot of the people you read about on this board have more severe disease than the people running around living happy full lives with crohns. There are a good number of celebrities with crohns, the bass guitarist from Pearl Jam to name one. I have relatively mild crohns disease but I really enjoy this board so I stick around. I find it is a good outlet for my need to talk about my disease and gives my poor husband a break.

I live a mostly normal life. I am a full time law student and I work part time. I will be working full time for the summer. This spring break I traveled to Singapore and Phuket Thailand where my husband lived as a teenager. I was stressed and worried about my health but felt better in Asia than I typically do in America! I think it is the diet and climate.

I have made some sacrifices because of the disease. Either my husband or I ALWAYS has to have group health insurance. That has limited some of our employment prospects in the past but we agree it is a necessity. We spend a good amount of money on medical related things like prescriptions, copays for doctors visits and tests, vitamens, baby wipes, organic food, etc. But again, it is all money well spent. As far as life sacrifices, I wanted to volunteer as an EMT in my town but decided that a job where I would have no bathroom access would not be good for me. Even if it was volunteer. Could you picture us racing a patient in cardiac arrest to the ER and I say ugh guys, we gotta pull over. Yeah, that wouldn't work. I know in the court room I will have limited bathroom access but as a lawyer I can always ask for a recess if I need it. I think because I will be in a position of control I will feel more comfortable than if I was say a juror. I am also very open about my disease and if it is acting up, I plan on informing the other side and the judge that I may need to request more breaks than usual and am not playing games with them. In reality, most lawyers spend very little time in the court room so I don't stress too much about it. Plus, my firm always has at least 2 lawyers at the table. If I wasn't the one speaking I could always step out and the other could catch it. However, I used to be a Corrections Officer and there were positions there I couldn't accept because of their remoteness from a bathroom. My husband used to be a police officer and I would get panicky on my ride alongs that I would get sick. We had to stay with a drunk drivers car until the tow truck came and I almost had to bolt for the woods. That was my last ride along. [I also HATED being a passenger in a car speeding through intersections, sirens or not.]

I still deal with anxiety on occassion and had to see a therapist to help me get back to living a close to normal life. I think law school has effected my sex life more than my disease. My husband has IBS and is very very understanding. But we aren't like rabbits anyway and once a week or so is good enough for us. If I am not feeling too well I will tell him to stay above the waist and I just make it about him instead of me. A normal life is possible!!

PS: I don't know exactly how to rate my crohns. My blood tests were off the charts, my scopes looked very mild, my symptoms at one time were pretty severe. They are now mostly under control and I call myself in remission but I still have to watch what I eat and know where the bathrooms are.
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 5/7/2008 8:07 PM (GMT -7)   
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!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 5/7/2008 8:26 PM (GMT -7)   
I hope the therapist you consult has experience dealing with individuals living with chronic illness. It is incredibly difficult to suffer from a chronic illness, it is sometimes even tougher to be the loved one of someone struggling with health issues. When I am really ill, I don't have the luxury of worry. I'm too sick to expend energy on anything but surviving. It is my family -- especially my husband -- who worries for me. For him the most difficult thing to cope with is the feelings of hopelessness that come from having no power to make it better.

I'm sure that you too have passed many hours in hospital looking into the void and wondering what your future together will look like. You have the added burden of the conflicts created by your decision to leave your family in India to be with your husband. You followed your heart, expecting it would be enough. A part of you might feel a bit cheated at the moment. And very, very scared. These emotions are so normal. You said that your husband has always been your rock. And what have you been to him over these past few months? I suspect in the midst of his challenges, he recognizes those same qualities in you, that you have found in him. You are there. You are pulling for him. You are engaged in trying to make this better. What a gift this illness has brought him -- and you. The gift of awareness that you are there for each other. Right now you are pulling far more than 50 per cent of the load. It won't always be this way. He will get better. He will find his new norm and it will be ok. And through this trial you will both have received a tremendous gift -- one that has the power to deepen the love you both feel for one another. It really isn't until we face adversity that we get to test the our real strength, that we begin to find out who we really are, both as individuals and as a couple.

I have lived with chronic illness for most of my married life. My husband has always been my rock too. Then one day he developed a life-threatening blood disorder. That was followed by an expected diagnosis of renal cell carcinoma. Suddenly, I was the spouse of someone dealing with a catastrophic illness. Over the next two years I was the one pulling us back from the emotional precipice, fighting everyday for him not to give in to despair. We can laugh about it now, but at the time it seemed overwhelming.

We do survive and if we're lucky these adversities make us more compassionate, broaden our insight, and bind us even closer.

That's what I hope for you and your husband. It's ok to be overwhelmed. Feel it. Live it. Honour it. Embrace it. Work through it. Share it.

And know that this too shall pass --

Hugs from the heart
Belleenstein:

30+ years living with Crohn's.


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 5/7/2008 8:32 PM (GMT -7)   
Bell-That was absolutely beautiful! I have chills running up and down my spirit!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/7/2008 11:21 PM (GMT -7)   
Hi PV,

It looks like you've gotten a huge response to your posts. I'm sorry I only had time to read yours and barely skim the others. I just love the support here!!!

Please understand that you and your husband must go through all the stages of grieving. Just like someone died. Those stages include: (1) denial, (2) bargaining, (3) anger, (4) despair, (5) acceptance. It sounds like you are working your way through despair. This is totally normal and necessary part of the illness. IT IS HARD.

I've often told my husband that I believe illness is harder on the caretaker. He thinks not . . . he believes it is harder for me. But I know better because I've been the caretaker and I've been the patient. Caretaker IS harder. . . and I SO appreciate him!! When folks are ill for a long time, I send greeting cards to the caretaker!!

PV . . . things WILL get better. You and he will find a "new" normal and you will be amazed at the delightful things in life that you never noticed before. I have so much more appreciation for things that other people just don't notice. I can't be in the sun at all . . . it causes disease flare for me (lupus). . . this was really hard to take . . but I've made a great game of it and I now take my grands to search out a sunrise and to watch the sunset over the lake. We have campfires and roast hotdogs. We have a blast. They understand when I'm not able to do things.

Happiness depends a lot on your perspective and outlook. You are too early in the game to be expected to have made this huge adjustment. Be kind to yourself and give you and your husband a chance to learn how to cope with this. I'm new to the crohn's part of things myself. Just got dx'd 3 weeks ago. So I'm adding a new dimension to my chronic illness . . . I felt like someone smacked me in the head with a brick. I'm sure feeling for you and your husband PV.

(*Rosie whispers* . . . yes we still enjoy each other that way!! If we can't manage it one we, we manage it another . . . LOL)

((((((((( PV )))))))))))))) Hang in there!! Your are doing great being so involved with the technical side of this disease. So much to learn.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ladybugs
Regular Member


Date Joined Jan 2006
Total Posts : 158
   Posted 5/8/2008 5:51 AM (GMT -7)   
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.

RA+CDhouse
Regular Member


Date Joined Nov 2007
Total Posts : 99
   Posted 5/8/2008 7:09 AM (GMT -7)   

We have the opposite problem here: my husband is the one who is going through all the feelings that you are going through, and he is also the patient. We are about the same age.

Our nightmare started over one year ago: the day of our 20th wedding anniversary (3/7/07) if you can imagine anything worse than that!  It took until November to get a dx of crohn's, and we are still struggling to get the mix of meds that works.  My hubby suffers excruciating pelvic pain, that is more bothersome than the crohn's actually.  He does have an anal fistula, but it's the pain in pelvic area that gets him the most.  He has had every test imaginable and they are all "normal".  He is the most miserable "normal" person I know.

He is the one who is in depair many days and can't see any kind of future.  I am the one who is always trying to be up-beat.  We have 2 children, and he is a stay-at-home-Dad (we thank God for that--he never would have been able to keep a job this past year!

I don't really know what I am trying to say....

I come here and read every single day; I find such inspiration in the people's stories here! 

Anyway, I hope that you soon find the peace that you need; and I hope that your husband soon begins to feel better.

 

--t


Learning can only happen when a child is interested.  If he's not interested, it's like throwing marshmallows at his head and calling it eating.  Make him interested!


BillyLitt
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 5/8/2008 7:22 AM (GMT -7)   
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.
 
 

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 5/8/2008 7:52 AM (GMT -7)   
It's also important to recognize when we need help. It can get overwhelming and there is nothing wrong with acknowledging those feelings of panic, fear, anger, hopelessness and despair that are all part of this process. In acknowledging our weakness, we demonstrate our true strength. It is those who turn strength into a weapon to beat themselves with who risk getting getting stuck in these emotions. I truly believe, instead, that by allowing them, honoring them, welcoming their reality that we can move through and beyond them more quickly. It is in resisting what is, that we create our struggle.
Belleenstein:

30+ years living with Crohn's.


mando
New Member


Date Joined May 2008
Total Posts : 14
   Posted 5/8/2008 8:16 AM (GMT -7)   
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.

kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 5/8/2008 8:22 AM (GMT -7)   
I lived a very full life, husband, kids, work, home, activities, running the kids around, church, up at 5am with bed at 11pm, husband out of town alot for work. Then cd hit, we happened to move at the same time, I was unable to do anything for a couple of months. Got better with meds, went back to work and got more active, then I worsened and had surgery. It's been six months but I'm better now. I know I'll never be the go go go person I was. When I'm tired, I sleep more. I make sure I don't overdo it on days that I feel good (learned that the hard way). But I work,am active in church and social activities, still run the kids around and have a semi-clean house. It WILL get better. It's hard to believe, but 2 months isn't that long a time. It seems like things will never end and this new reality will be your life forever, but it won't be. Your husband's body didn't get this bad in 2 months, it's probably been years, and it will take several months for it to heal. I'm not as inspirational as others here, (some of you write beautifully) but I wanted you to know that a pause in your life is just that, a pause. It will restart.
diagnosed 11/06, solving the mystery of years of on/off abdominal pain. No more "it's just a virus". 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bowel resection 9/07. Doc says no active disease, but flare-ups anyway. 11 year old son with IBS-C, on Bentyl.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 5/8/2008 8:28 AM (GMT -7)   
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.

ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 5/8/2008 9:05 AM (GMT -7)   
PV - I don't have much to add to the beautiful words of encouragement and support that have already been posted. My heart feels for you. I hope that the worst is over for you and your husband and that the healing process is underway. I was wondering if you are employed and if so, if you have been able to return to work. Perhaps your husband can hold his own while you are at work for the day. That might begin to bring a sense of "normalcy" back to your lives. Although illness throws us some nasty curve balls, life goes on and I'm sure you and your husband will find ways to cope and find joy in life again. I'm cheering for you. SB
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Ileocolectomy 4/08.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 5/8/2008 10:20 AM (GMT -7)   
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
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Home now after being in hospital for 45 days
Canasa, Lialda, Vancomycin, Flagyl, Colestipol, Pred 80 mgs, Remicade (3rd infusion due 5/22/08), VSL#3, FloraStor
Still having problems, hoping for a remicade miracle
Need to get off the pred ASAP


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/8/2008 12:20 PM (GMT -7)   
(((((((( Preetha )))))))))

Its actually helpful for us "patients" to see things from the spouse's/caretaker/family's point of view. Thanks for being so candid. I do worry about my husband's state of mind and I always encourage him to enjoy his hobbies and I really try not to complain about my issues unless I really need him to know what's happening. He is very good at reading me (malar rash gives me away when I'm flaring and pre-flare).

Our meds . . . give us way more quality of life than side affects . . . the side affects ARE a big concern, but these AI (autoimmune) diseases perk away and do disastrous things to our bodies if we don't treat it. . . so its a "lesser of two evils" issue. Most of us have felt just like you about the meds and most of us have taken a "prescription vacation" with really wicked outcomes. So we make friends with the meds and work hard to find the right combo for our individual issues.

Thanks again for sharing your concerns . . . so helpful to us. But being really new at the Crohn's side of things . . . I really hear you when you say your head is spinning and you can't think about anything else. It does consume your attention and your life for a while . . . but then you gain your perspective and the room stops spinning and you figure out all your positives and move on. You are getting there . . . it just takes some times to digest everything and you got SLAMMED with a really abrupt introduction to Chrohn's so you are justified in your concern.

Keep us updated on hubby progress!! We live vicariously through each other's progress.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/8/2008 1:08 PM (GMT -7)   

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!


Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

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