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Crohn's Disease
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Posted 12/22/2010 11:30 PM (GMT 0)
I just need to vent and you all are the only people I can share this with.

I feel like my usually supportive husband is getting tired of me and my problems. I'm at the point that I try not to mention my health issues anymore. Today as he left for work, he found me sitting up in bed watching tv and said "No wonder your back hurts. You're back in bed already." I told him I was on my third straight day of nausea and abdominal pain. (It's my day off and I thought I should take advantage of it.)

I've been taking morphine for nearly a month now without his knowledge. He sees me limping around and has yet to comment or show any sympathy, and he knows that I can't take darvocet anymore. He objected to my use of morphine based on someone we know who took it and was really out of it. It is not affecting me like that at all. I decided not to tell him but hate feeling like I have to keep things from him. If something happens to me, he won't even know what meds I take to tell the docs.

I can't mention any health concerns without getting some attitude/sarcasm. I really don't think I am whiny about it all, but it's not easy to hide my problems from those I live with. It's not like any of this is news to him. I know I can't keep up with chores, but I've been working 3 to 4 8 hours shifts a week, and trying to homeschool my son. I need extra sleep compared to a normal person. I know that pushing myself would just result in more problems or even a flareup.

I know I should talk to him, but there's a part of me that really is afraid he will say he is tired of me being this way.

So, thanks for letting me unload that. Somehow just acknowledging that I'm feeling upset about this helps because I've been trying to not let it affect me for awhile now.

Post Edited By Moderator (MMMNAVY) : 12/22/2010 5:04:35 PM (GMT-7)

Posted 12/22/2010 11:47 PM (GMT 0)
Awww you poor girl! Have you really tried to sit down and talk to him, I mean really talk. It might help.
The other thing I did, when I thought my husband didn't get it, was I allowed him to have a look at this
forum. Once that was done he really understood that I was pretty sick, along with all the others on here.
Now he looks on here almost everyday, he asks me how certain people are doing, if they are going through
a bad patch. It really opened his eyes, and he certainly has more empathy for me and everyone else on
here. It might work for you too. But if you do decide to let him, I would make sure this post is not visable
to him. I wish you so much luck! Let me know how you get on!
Posted 12/23/2010 12:06 AM (GMT 0)
I just added a title to your thread.
I think the best way I have heard crohns discribed is like having an ember burning in your gut.

Sometimes I wish I could just say to people, just be supportive, give a hug does it really cost one all that much, and just express being a person who is caring, empathy, and compassionate. 

Posted 12/23/2010 1:09 AM (GMT 0)
((((((hugs))))))) to you! Sometimes I feel that way, where you don't want to whine, but want someone to care. It would be nice if people just picked up on that and just gave you hugs on the days you really needed them.

It does help to vent though, and I hope it helped at least a little for you to post here.

****sending well wishes and a break from the pain and nausea you're having****
Posted 12/23/2010 1:28 AM (GMT 0)
Heatmiser, I completely understand where you're coming from!
Though my fiance and I don't live together yet, I sometimes downplay my illness or tell him I'm feeling fine, even when I'm not.

He knows that I am sick, and that Crohn's is a pretty nasty disease. but I feel like he thinks I sometimes use it as an excuse, or that I'm just lazy!
It is very frustrating! I don't want pity, or anyone to feel sorry for me, I just wish some people were a little more empathetic.

As far as hiding medications from your husband; I can definitely see your point in doing so, but it's probably not the best idea. Like you said, God forbid something happen, he would have no idea, and wouldn't know what to tell the doctors.
Posted 12/23/2010 4:59 AM (GMT 0)
Oh honey! ((Hugs))

I agree that you need to have a serious talk with your hubby. He should be the one person who you can lean on for absolutely everything, and you shouldn't have to hide your pain or deal with being treated like you were a recalcitrant child.

My husband is the one with Crohn's disease, and I've never once felt like he was using his illness to be lazy. Anyone who is educated about this disease and has a shred of empathy will understand how hard this illness is to deal with. I think he needs education, and some guidance.

One possible explanation I have is what happens with my parents. My dad is one who thinks if he gives in and pampers my mom when she feels sick, that she'll get sicker. That somehow just treating her like normal, kept her healthy. I know it sounds silly. But that's how he copes with her illness - he says it makes her feel normal, and it keeps him from getting overwhelmed.

I hope you and your hubby can have a good talk, and set things right. You shouldn't have to hide your pain or your pills from your hubby. (((Hugs))). Hang in there, hopefully things (including your health) will improve, and give you both a reprieve.

PV
Posted 12/23/2010 5:53 AM (GMT 0)
Thanks for adding that title. I meant to after I wrote it and figured out what I needed to say. Your title is perfect.

Thanks for the replies. It does help to know I'm understood. You guys aren't here in my "real" world and sometimes I feel like I'm on another planet where no one gets it. I even fear maybe they are right and I am just too much to deal with. You are helping me stay centered in the truth.

I have to work on some courage to have that conversation. It's just fear that holds me back, although he's really a great guy. I don't think I'd ever invite him on here just because of the fact that this is my safe place to talk about it. I do think it's great your husband found it helpful though.

Thanks for the hugs! I needed them. You guys are the best!
Posted 12/23/2010 7:56 AM (GMT 0)
Just a note one what navy said about the "burning ember"...the gentleman who wrote Aliens had crohn's disease...not to hard to figure out where he got his inspiration...I mean who hasn't felt like some sort of creature was just wanting to burst out from your guts (I mean I have) and really the noises that my body can make, there MUST be something stuck inside there!

But I am so sorry to hear about the issues with you Husband...I know that even if I try and hide(because I don't want to make him feel down) he KNOWS! (body language, I guess, my eyes, and my voice...getting this verbatim from DH as he is right next to me as I compose this)...

Heatmiser...(((((((((((((hugs))))))))))))))))))...I am sad that you are in your situation...Alas all I can offer is meager cyber hugs, and the knowledge that there are a few of us on the board to listen...
Posted 12/23/2010 11:10 AM (GMT 0)
Perhaps you could take him with you next time you have to see your Consultant and he/she could explain it better that way he might learn to be a bit more aware of what you have to go through and why you have to take the morphine now and it doesn't turn everyone into a junkie who is spaced out all the time, next time he's ill probably with man flu or something equally as pathetic i would turn round and say i don't get any sympathy so why should you it's only a cold. I have a friend here who has a myriad of different complaints and is on morphine for pain control if she didn't have it she couldn't function and has 4 children all at school. Not yet diagnosed they keep saying it's IBS for last 6 years didn't think you lost weight with IBS awaiting colonoscopy (sp) results, my OH spoke to the Consultant the last time i was in hospital and said he was sick of me being fobbed off and it definitely wasn't IBS and they should pull their fingers out as he would complain if they didn't, that's the NHS for you. They have found lesions in right hand corner and said theirs something wrong but don't know what, doesn't help me much though.
Posted 12/23/2010 1:49 PM (GMT 0)
I wanted to just add a bit of a spin on this. I have a wonderful husband who has stuck by me through all of my CD woes. We have been married for over 25 years and I know he KNOWS I'm sick. He pulls more than his share. Lets me rest when I need it and generally treats me like a queen.

BUT, he has his moments. The other day I told him I had lost 5 pounds. His response was, that's good. But it isn't if I'm not trying to lose weight and it just falls off. He knew I would like to be 5 pounds lighter than I was, but not in the span of 3 days. Also on top of that, he is an exercise, keep in shape kind of guy, I am not. His family has some weird ideas about healthy eating, where as my family was all about taste. Add some butter and cream, so its not like I'm eating salads, its Xmas time and I'm eating all the goodies I want and still lost weight. Something is a miss in my insides, but his first thought is, great you wanted to lose 5, done, and maybe you'll join me on that run tonight. NOT, oh crap, what's wrong.

I see a pain management doctor. I don't discuss this doctor with my husband, or the medication I take for my pain. He knows I see a pain doctor, he knows I take pain medication, but specifics, we don't discuss. It is all written down on my list of meds, in case of emergency. My MIL was addicted to prescription medication and is an alcoholic. This made his childhood a misery. His mother is still suffering from the affects of addiction, her brain is slow and she can not carry on a simple conversation with out extreme pauses while she tries to think of what she wanted to say. My sister has had some addiction issues too, and she has let them ruin her life in multiple ways for the last 10 years. In his mind, these drugs are not a good thing. But I have pain, and I need to function.

So sometimes I have to understand that my husband's responses have nothing to do with me. They come from his background and his experiences. Yes there are times when I wish he could see things from my side, or not just blurt out the first things that come to mind, but its what he knows.

So maybe you do need to have a conversation with your husband and spell it out a bit more clearly. It sounds like you are flaring and over your head and could use some more support. When my husband says things that are not helpful, or not supportive, I call him on it and explain why that is not an appropriate answer given my situation.
Posted 12/23/2010 2:07 PM (GMT 0)
Wow I am sorry you are not getting the support you need, especially from the one person who should be your biggest advocate. I have to agree with all of the above, you have to sit him down and have a conversation. Not only is communication a neccessity in marriage, its necessary when you have our disease. If its taking him with you to the docs, or just telling him the way it is, you need to talk to him about how poorly you are feeling and the multitude of ways this disease can attack our bodies.

I have a wonderful husband who is very supportive most of the time. Like Zanne (goodness we are CD twins) I have an athletic and extremely healthy husband. I live in Southern Calif and as you may have seen in the news we just had a whopper of rain storm. When it rains, my fibromyalgia acts up really bad and I hurt alot. I was telling him lastnight how much I hurt. I said I can't wait till tomorrow as I know I will feel better. Well he says to me that if the holidays upset you so, maybe you should talk to your therapist about your feelings. I had to explain to him that I wasn't feeling emotional pain, I was feeling physical pain.

So please do sit down with him and talk about your illness and how bad you have been feeling. I sure hope you get feeling better soon and I am really sorry you are suffering so. Hugs!
Posted 12/23/2010 7:52 PM (GMT 0)
Im in the same boat you are in. My fiance has been dealing with anxiety lately and recently went to the dr and got something for it. Prior to going though he complained to me for 3 weeks of every little pain that went through his body.

SO yesterday since he has been on a medication I talked to him about how I feel and he still doesn't understand!! I told him that for the past 3 weeks I have listened to him whine/complain/freak out over every little thing....I have dealt with him not helping with our 3 kids because he thought something was wrong with his heart (all along I told him it was anxiety) He didnt' go to work and laid around and slept for 2 weeks.  But....I told him when it comes to me and having this stupid disease everytime I mention that my joints hurt or my body is in extreme pain or I have gone to the bathroom X times today his response is "OH" and thats all I get. I told him I need support because thats what I have given him. Hes like what do you want me to say. I dunno....just something supportive or try to help out more when I do tell you that.

People just don't get how it is!! I hardly ever complain so when I do I must be feeling pretty lousy.

Anyways hang in there...it will get better!

Posted 12/23/2010 11:32 PM (GMT 0)
I think men (and some women) want to fix what's broken. So when someone complains they offer a solution....but with CD it doesn't work! It's very frustrating for people like that. Maybe your DH needs to practice empathy w/o trying to fix you - like practicing saying "Oh, I'm so sorry you're feeling bad today." That is hard to do when you want to fix things all the time!

On the other hand, there are meds you can take to help alleviate the joint pain - I am not talking about pain meds. I'm talking about treating your bowel disease more effectively so that the joint issues go away. I used entocort to relieve pain in my hands, and then weaned off that drug and put in sulfasalazine, which is often used now in IBD patients with joint pain. My hands feel great, but my knee still hurts. If my knee pain got really bad I'd probably be taking one of the biologics like my rheumatologist wants me to. By the way, if you have joint involvement, you should be seeing a rheumatologist along with your GI.

Another thing is the morphine may make you more nauseated.
Posted 12/23/2010 11:58 PM (GMT 0)
Kazbern I agree with you that there can be stuff done for joint pain. I am currently waiting for an appeal to go through for humira because my insurance company denied the original request. Prednisone works good but has given me horrible acid reflux and I am steriod dependent when I go on them. I take percocet when im havng a hard time functioning because of it.
Posted 12/24/2010 12:20 AM (GMT 0)
Have you thought about marriage counseling for the two of you or for just yourself?
Posted 12/24/2010 6:51 PM (GMT 0)
It took years for my husband to show empathy towards me. Now he is more understanding and patient. In the beggining he wouldn't even read about what Crohns was. I know how alone you must feel, hang in there. One thing that irratates me is that since I look fine on the outside people automatically think you are healthy in the inside. So I do empathies with you when you write about your husband seeing you in bed. To him you look fine on the outside, but we all know the turmoil with in. That's why this forum is wonderful. When we think know could possibly understand everyone on the forum does. Big hug for you!
Posted 12/26/2010 12:01 AM (GMT 0)
I am so sorry you are not getting what you need. It can be difficult because other than weightloss may of us don't 'look' sick. When my boyfriend asked me what it was like I explained to him about the cramping and all that but he did not understand the burning feeling I had until my meds kicked in. I told him to imagine a little man in his colon with sandpaper and he was rubbing it against the colon wall. He got it after that.
Posted 12/27/2010 1:31 AM (GMT 0)
:-)  This message goes to heatmiser: I can certainly feel what you are going though. I've had Crohns now for 10years now with no surgeries and probably for the last 3years or so I've had pre-existing liver conditions brought about by my Crohns. My doctor has checked them every 6months and for the past year they have been within normal limits. The last scope I had this past Oct along with a Barrium Enenma, showed 5-6 Fistulas and a stricture in my small bowel. He wants to put me on the drug Humira, because he says surgery is not an option for me right now. But besides ofn the expense I'm just wondering if that's a good idea for me to take with the pre-existing liver conditions. Anyway, he says there is a 50-65% chance of it healing the Fistulas and there is alot of serious side effects too. I lost my job in June so I had to take out Cobra Insurance which is expensive and I can only take the insurance for a year or so unless I end up going on disability. My Husband just doesn't understand, he thinks it's all in my head. And he says I've been managing it for 10years now and have done just fine. Well I'm 10years older now and it has now progressed to my illeocal valve, which I'm still; a llittle confiused  as to where that is. I spent the last couple of weeks feeling overly tired with intermittent dirrahea and just an overall feeling of not feeling very well. So I can relate with your anxiety and frustrations with this disease!! It definetly is not a walk in the park that's for sure!! I just wish my Gastro-Doc would say, look maybe I should send you out of state where I can also see a liver specialist as well. I don't know, maybe my Doctor is one too. He's supposed to good at this disease, so I just don't know. I do know younhave to be your own advocate!!! I just wish my husband was more understanding. Hope through it all hyou had a good Christmas and Hope you have a Happy and Healthy New Year!! Pleas feel free to talk to me any time, I'm always a good listener!! Take care--Silvergran
Posted 12/27/2010 2:02 AM (GMT 0)
Im sorry :( its hard when we dont get the support we need from our loved ones. My husband has been very supportive thankfully, but he does have his moments. I try to remember that even though they dont have the disease they still suffer from us having it and I think they do get discouraged often.

I would tell him about the medication though. My friends uncle was on a lot of different meds and his therapist told him to go off all of them cold turkey. Hes been in the hospital for 3 weeks strapped down to a bed suffering from withdrawals. Nobody knew all the meds he was on till later and he should have died. I would at least tell him what meds your on and write it down on a card that way he at least knows if theres an emergency.

Hugs!!
Posted 12/27/2010 2:54 AM (GMT 0)
Aww Hun- I totally know how you feel. My husband is wonderful and "tries" to be understanding but he just doeasn't get it! I don't know how many times I hear myself say "You just don't understnad" Even surrounded by my 3 kids and my husband- most the time I feel alone. It is hard to live with this-even for an eternal optimist like me. The "glass is half full" most of the time but there are times when I just want to throw that stupid glass against the wall!! smilewinkgrin
Posted 12/27/2010 4:37 AM (GMT 0)
I think kazbern is on to something here. I am the caregiver and support for my hubby who suffers from crohn's disease, and I can't tell you how frustrating I find the whole experience. Not because I don't love my husband or want to take care of him, but because I find often that there is nothing I can do to help or "fix" it.

It is depressing and frustrating, and I have to fight that all the time. Plus, things that most people bounce back from, it takes him weeks if not months to fully recover from, so it constantly feels like we are dealing with something all the time. It's only now that I am getting to the point where I feel like I just need to accept normal as normal is today, instead of waiting for him to get to what normal should be.

I think while it is hard to deal with a chronic illness, it is also hard to deal with trying to care for someone with a chronic illness - because nothing I do helps sometimes. And it seems nothing a doc can do can help either, and you just have to watch your partner suffer. I sure wish I could "fix" it - it would make both me and my hubby happier - especially me.

I think some counseling maybe in order - I have to keep focusing as my therapist told me on what I can do today to find enjoyment in today, instead of waiting for my hubby to feel normal (because I might waiting forever and in the meantime making both of us miserable). And also not to expect results - to just do what you can, and derive joy from the action of having done something (being present), and not to expect that what I did will result in my hubby springing up and saying, I'm great!

There's a lot of self discovery in this journey, especially when illness strikes so young, and I think some counseling will help if you think you can get him there.

I hope you will have that talk with your hubby. And to all of you who have partners who frustrate you sometimes, I'm sorry. I'm sure if my hubby were to get on this board, he'd have an earful for you too - not because I don't take care of him, or because I don't love him, but because I am darn annoying when he's sick. I constantly monitor how he's feeling, and feel down when I don't discern improvement from one moment to next. I definitely identify with kazbern's observation of people wanting to "fix" it. I'm one of them for sure, and I'm trying to address it with therapy, medication and meditation and self reflection.

PV
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