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Crohn's Disease Forum » Support Forum » My husbands Crohnís disease is making me depressed


 
11-18-2017, 05:10 PM   #1
Wifey2424
 
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My husbands Crohnís disease is making me depressed

I️ have been with my husband for almost 12 years and we have been married for 6 years. He did not have any symptoms for the first 2 years we were dating but even before that he often complained about being in pain. So essentially the entire time we have been together he has had physical issues. I️ have tried to be a good companion throughout this journey but it is so hard on me sometimes. He had his ileostomy in place for 7 years and had his colon removed last year. We had many complications with this last year and he was in and out of the hospital for the entire year. He has now been out of work for 15 months (which I️ support because he is definitely not in a state to hold down a job.) but it is draining. I️ work a demanding full time job and it is hard to come home everyday to someone who has spent their whole day watching tv. I️ literally do all the cooking, cleaning and bill paying and try to keep on a smiling face but I️ am nearing the end of sanity. I️ wanted to have children but have given up that dream for him. All I️ want is for him to focus on his health and he has basically given up. I️ have tried to get him to sign up for disability and he wonít try because it gives him too much anxiety. I️ have asked him to do anything around the house ( Iím happy with him just throwing away his trash- much less anything else like unloading the dishwasher, ect.) and he just canít seem to do anything but watch sports. I️ love him and want nothing more than to have a life together but it seems I️ have drifted to the unrelenting life of a crohns spouse who is seemingly just a care giver. I️ need hope.
11-18-2017, 05:15 PM   #2
sabboo
 
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I️ have been with my husband for almost 12 years and we have been married for 6 years. He did not have any symptoms for the first 2 years we were dating but even before that he often complained about being in pain. So essentially the entire time we have been together he has had physical issues. I️ have tried to be a good companion throughout this journey but it is so hard on me sometimes. He had his ileostomy in place for 7 years and had his colon removed last year. We had many complications with this last year and he was in and out of the hospital for the entire year. He has now been out of work for 15 months (which I️ support because he is definitely not in a state to hold down a job.) but it is draining. I️ work a demanding full time job and it is hard to come home everyday to someone who has spent their whole day watching tv. I️ literally do all the cooking, cleaning and bill paying and try to keep on a smiling face but I️ am nearing the end of sanity. I️ wanted to have children but have given up that dream for him. All I️ want is for him to focus on his health and he has basically given up. I️ have tried to get him to sign up for disability and he wonít try because it gives him too much anxiety. I️ have asked him to do anything around the house ( Iím happy with him just throwing away his trash- much less anything else like unloading the dishwasher, ect.) and he just canít seem to do anything but watch sports. I️ love him and want nothing more than to have a life together but it seems I️ have drifted to the unrelenting life of a crohns spouse who is seemingly just a care giver. I️ need hope.
If you don't love him leave. He deserves better. His illness will never go and if you only care about the good times leave him be.

11-18-2017, 06:23 PM   #3
Sophabulous
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Hi wifey! Welcome to the forum. Iím sorry that youíre having a hard time. Iím the diseased one in my relationship (guilty as charged), and I hate that I Iím not up to doing things. I do work full time, but at the expense of everything else. Itís basically Work and sleep at the moment, and Iíve never even had surgery so I canít imagine how it is for your husband.

Me and my partner still live apart, and Iíd be lying if I said Crohnís was nothing to do with that. Iím worried as Iím not up to much once I finish work, or most of the weekend for that matter!

That said, if we were in the situation youíre in right now I would much prefer a frank and honest conversation. I would be horrified to think my partner was feeling so disillusioned through my actions/inaction. Itís easy to fall into self pity and isolation with this illness unfortunately, and Ive needed wake up calls before now. Iím sure there are little things he could do day to day to make your life easier that wonít be too taxing. It sounds to me as though you just need a sign heís willing to try more than anything!

Let us know how you are x
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
11-18-2017, 06:28 PM   #4
sabboo
 
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Hi wifey! Welcome to the forum. Iím sorry that youíre having a hard time. Iím the diseased one in my relationship (guilty as charged), and I hate that I Iím not up to doing things. I do work full time, but at the expense of everything else. Itís basically Work and sleep at the moment, and Iíve never even had surgery so I canít imagine how it is for your husband.

Me and my partner still live apart, and Iíd be lying if I said Crohnís was nothing to do with that. Iím worried as Iím not up to much once I finish work, or most of the weekend for that matter!

That said, if we were in the situation youíre in right now I would much prefer a frank and honest conversation. I would be horrified to think my partner was feeling so disillusioned through my actions/inaction. Itís easy to fall into self pity and isolation with this illness unfortunately, and Ive needed wake up calls before now. Iím sure there are little things he could do day to day to make your life easier that wonít be too taxing. It sounds to me as though you just need a sign heís willing to try more than anything!

Let us know how you are x
As the diseased one I can honestly say it doesn't matter what you plan or dream. This illness will sap every ounce of energy you ever have. Every day is a struggle. You will never sleep enough and just when you think your escaping it slaps you back down.

11-18-2017, 06:33 PM   #5
Sophabulous
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As the diseased one I can honestly say it doesn't matter what you plan or dream. This illness will sap every ounce of energy you ever have. Every day is a struggle. You will never sleep enough and just when you think your escaping it slaps you back down.


Iím aware of that Sabboo, but that doesnít mean itís easy for others to deal with. Especially if theyíve never experienced it and canít understand first hand. We always need empathy for ourselves so in return we need to show it to others.

Personally I commend OP for seeking advice rather than just getting to the end of her tether and blowing up one day. Iím a firm believer that an open dialogue can resolve most problems, if you disagree with me then thatís fair enough!
11-18-2017, 06:42 PM   #6
Wifey2424
 
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If you don't love him leave. He deserves better. His illness will never go and if you only care about the good times leave him be.
Ha! If i was only in it for the good times i would have been gone long ago! If you can be in a committed relationship with someone for 12 years and not be in love then something is wrong. I can honestly say i would never leave him. Iíve been with him through the deepest of lows and i donít regret it for a second! I think my main issue is reopening conversation with him about how i feel. I know that this disease is crippling and can leave one unable to function but i also know that my husband is just as depressed as i am in this fight and even on the days he feels ďnot as badĒ he is unable to help me in this battle. Itís hard to do everything for someone and not feel appreciated no matter how much you love someone. I just needed a place to vent frustration to other people who understand the journey whether that be patient or loved one.
11-18-2017, 06:49 PM   #7
Wifey2424
 
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Hi wifey! Welcome to the forum. Iím sorry that youíre having a hard time. Iím the diseased one in my relationship (guilty as charged), and I hate that I Iím not up to doing things. I do work full time, but at the expense of everything else. Itís basically Work and sleep at the moment, and Iíve never even had surgery so I canít imagine how it is for your husband.

Me and my partner still live apart, and Iíd be lying if I said Crohnís was nothing to do with that. Iím worried as Iím not up to much once I finish work, or most of the weekend for that matter!

That said, if we were in the situation youíre in right now I would much prefer a frank and honest conversation. I would be horrified to think my partner was feeling so disillusioned through my actions/inaction. Itís easy to fall into self pity and isolation with this illness unfortunately, and Ive needed wake up calls before now. Iím sure there are little things he could do day to day to make your life easier that wonít be too taxing. It sounds to me as though you just need a sign heís willing to try more than anything!

Let us know how you are x
Thanks for the support! I know he goes through a lot and i think that is one of the reasons we are where we are. I try to be understanding and sometimes i donít say things that are important to me because i donít want to burden him. i do feel like when things are said they end up just making him feel worse about his situation (which is the last thing i want.) I think this is the main issue. I want to figure out how to be honest without making him feel burdened or inadequate.
11-18-2017, 06:53 PM   #8
sabboo
 
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Thanks for the support! I know he goes through a lot and i think that is one of the reasons we are where we are. I try to be understanding and sometimes i donít say things that are important to me because i donít want to burden him. i do feel like when things are said they end up just making him feel worse about his situation (which is the last thing i want.) I think this is the main issue. I want to figure out how to be honest without making him feel burdened or inadequate.
I give all I have. I'm up at 4.45am every day for my 3 hour shift then look after 2 children after that. I don't get a break all day then have to suffer easteneers and coronation street before bed. Often I just goto bed when the kids do because it just stresses me out watching that crap.

11-18-2017, 06:59 PM   #9
Wifey2424
 
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As the diseased one I can honestly say it doesn't matter what you plan or dream. This illness will sap every ounce of energy you ever have. Every day is a struggle. You will never sleep enough and just when you think your escaping it slaps you back down.
That is the unfortunate part that i very much understand. If i give up on my feelings then i am just a care giver. Iím not in a relationship. I have given everything to this man and i will continue too, but i need a way to communicate that doesnít end up making us both feel like shit. Maybe that isnít possible but my husband basically refuses to see any more specialist.. he is basically done caring about his condition and that is really hard for someone who cares so much to witness.
11-18-2017, 07:02 PM   #10
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That is the unfortunate part that i very much understand. If i give up on my feelings then i am just a care giver. Iím not in a relationship. I have given everything to this man and i will continue too, but i need a way to communicate that doesnít end up making us both feel like shit. Maybe that isnít possible but my husband basically refuses to see any more specialist.. he is basically done caring about his condition and that is really hard for someone who cares so much to witness.
Well from my side I give everything I have. But my thoughts and needs are not met either. I give all I have and it's never enough.

11-18-2017, 07:05 PM   #11
Wifey2424
 
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Iím aware of that Sabboo, but that doesnít mean itís easy for others to deal with. Especially if theyíve never experienced it and canít understand first hand. We always need empathy for ourselves so in return we need to show it to others.

Personally I commend OP for seeking advice rather than just getting to the end of her tether and blowing up one day. Iím a firm believer that an open dialogue can resolve most problems, if you disagree with me then thatís fair enough!
I understand that there are many people who do not sympathize with people going through this, and I will never back down from defending my husband and the challenges that Crohnís disease brings. Even though i may be going through some issues, i never underestimate what he is going through. Thank you for the support!
11-18-2017, 07:15 PM   #12
Wifey2424
 
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Well from my side I give everything I have. But my thoughts and needs are not met either. I give all I have and it's never enough.
I am very aware that my needs will always be secondary to his and it makes me sad to think of all the people with this disease that donít have someone to provide that. There are so many people that give up on their significant other because of this and i refuse to be one of those people. With that being said, I would like to have a certain amount of dialogue that helps both of us meet in the middle. We do not have any children (a conscious decision on our part due to crohns) and i give everything i have to make our lives better. I just want to see him make a better effort to take care of himself. He has seemingly given up at this point and i donít know what to do to help. I certainly commend you for all that you do and i hope your children recognize all of the extra effort it has taken you to get them where they are. I know how hard that must be for you.
11-18-2017, 07:27 PM   #13
sabboo
 
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I am very aware that my needs will always be secondary to his and it makes me sad to think of all the people with this disease that donít have someone to provide that. There are so many people that give up on their significant other because of this and i refuse to be one of those people. With that being said, I would like to have a certain amount of dialogue that helps both of us meet in the middle. We do not have any children (a conscious decision on our part due to crohns) and i give everything i have to make our lives better. I just want to see him make a better effort to take care of himself. He has seemingly given up at this point and i donít know what to do to help. I certainly commend you for all that you do and i hope your children recognize all of the extra effort it has taken you to get them where they are. I know how hard that must be for you.
I have a huge list of foods I can't eat. Have no energy. Had to give up on my career. It's easy to get depressed. I feel like all I do is take. I cannot provide. It's easy to slip down.

11-18-2017, 08:05 PM   #14
Wifey2424
 
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God knows i hear you! I have always prided myself on being strong and resilient so being vulnerable is a new thing to me. I canít imagine being in a situation where you have no option other than being vulnerable. I can only say that i am incredibly proud of you for being able to carry on in the face of resistance and pain. Everyone suffering with this has My utmost respect. This is why i feel so terrible about venting my frustrations though. I know that i have the better end of this deal but it doesnít make the emotional turmoil any less. You were right in the beginning... i could move on and try to restart my life. At the end of the day though, i donít want to. I want to be with him. I love his sense of humor and his empathy for others (even though the empathy isnít for me 😂.) He is an incredible person and i donít want to be with anyone else! I do want our life to be the best it can though so this is an attempt to try to get us both on the the up and up!
11-18-2017, 10:36 PM   #15
cmack
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Hi Wifey2424,

I'm so sorry to hear that you are having such a rough time. Chronic illness is a terrible thing to deal with, I have IBD and have had 14 surgeries on my rear end. My wife left me and took my son with her. I think you are being such a good person to stick with your husband. Have you considered a marriage counselor? It was really hard for me to reach out to receive disability status and payments too because I was ashamed that I couldn't provide for my family. There is no shame for applying to disability for help. Maybe you should let him talk to me on a pm (private message) I would be willing to tell him what I went through and encourage him. You can do it but it really does take an effort.

Feel free to reach out to me on a pm any time you need someone who understands a male point of view. also I may be able to answer questions about, "how guys with IBD/Crohn's think."



I wish you all the very best,

Chris
11-18-2017, 11:18 PM   #16
lisadc1
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Wifey2424, I commend you for wanting help to help your spouse and yourself. Why someone would be negative is beyond me. Having Crohns is relentlessly exhausting, and no matter how much one wants to sympathize for their loved ones with it, not sure if they ever completely understand some of it...while this is true, I am thankfulmy loved ones do not personally understand all that comes with this cruel illness. You have come to the right place. You have support here. Prayers for your situation.
11-19-2017, 02:50 AM   #17
Wifey2424
 
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Hi Wifey2424,

I'm so sorry to hear that you are having such a rough time. Chronic illness is a terrible thing to deal with, I have IBD and have had 14 surgeries on my rear end. My wife left me and took my son with her. I think you are being such a good person to stick with your husband. Have you considered a marriage counselor? It was really hard for me to reach out to receive disability status and payments too because I was ashamed that I couldn't provide for my family. There is no shame for applying to disability for help. Maybe you should let him talk to me on a pm (private message) I would be willing to tell him what I went through and encourage him. You can do it but it really does take an effort.

Feel free to reach out to me on a pm any time you need someone who understands a male point of view. also I may be able to answer questions about, "how guys with IBD/Crohn's think."



I wish you all the very best,

Chris
Thanks Chris! I am so sorry about your situation. It makes me so sad to hear stories like that. One of the primary reasons we havenít had children is because neither of us want to have any more resentment regarding this disease. We are both hyper aware of how much of a toll it can take on any relationship and feel lucky to still be in love and have each other.

I am very happy to have people here that are willing to listen. I, as many patients, feel just as helpless when finding support or someone to listen who truly understands.

I have tried to bring up counseling but my husband is not really on board at this time. He was seeing a psychologist as part of his treatment but has recently decided that he no longer likes this psychologist (after seeing the same one for 3 years) and doesnít quite have the motivation to reach out to another. I gently try to nudge but for now i am having no success. I will keep trying though!!!
11-19-2017, 02:57 AM   #18
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Wifey2424, I commend you for wanting help to help your spouse and yourself. Why someone would be negative is beyond me. Having Crohns is relentlessly exhausting, and no matter how much one wants to sympathize for their loved ones with it, not sure if they ever completely understand some of it...while this is true, I am thankfulmy loved ones do not personally understand all that comes with this cruel illness. You have come to the right place. You have support here. Prayers for your situation.
Thank you for the kind words, it means so much! I am thankful that i am willing and able to be a spouse to someone battling this cruel disease. It has made us more vulnerable in some ways for sure, but it has also made us much stronger in many other ways. I think getting things off my chest here will make me a better, more understanding partner in the long game. I know that he canít quit fighting this disease so i wonít either!
11-19-2017, 08:02 AM   #19
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Thank you for the kind words, it means so much! I am thankful that i am willing and able to be a spouse to someone battling this cruel disease. It has made us more vulnerable in some ways for sure, but it has also made us much stronger in many other ways. I think getting things off my chest here will make me a better, more understanding partner in the long game. I know that he canít quit fighting this disease so i wonít either!
Hope you come out the other end. You can't be expected to know how this illness makes you long term unless you suffer with it. Physically you can see some of the symptoms. But things like fatigue and the mental side how it drags you down I don't even know how to put into words. The doctors I see here in the UK are useless. Just get passed around and fobbed off. The autoimmune part of it has many underlying issues that I can't get a Dr to take seriously and it's a case of its either all in my head or live with it. And people think the nhs is great eh! I must lit my partner through hell but often when I need the support it's not there as she has to provide and I make the best of the situation anyway I can. Having no energy when you desperately need to do things is awful.

11-19-2017, 12:19 PM   #20
Wifey2424
 
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God knows we totally relate with the Doctor game in the US even though we go to what is supposedly a ďtop 10 in the US IBD clinic.Ē Instead of telling us that heís fine and itís in his mind they always seem to find something else they need to address. It has gotten to where we feel like their solution to everything is surgery. At a certain point it feels like a medical racket! Last year when his colon was removed they didnít remove the rectum (and he has rectal crohns?!) so now that removing the colon hasnít helped they think it might be a good idea to remove the rectum.... like really?!? this should have been done before. He also got pancreatitis while he was in getting the colon removed and ended up in ICU for a month. Had to go back in the hospital a few months later for a bone infection and was put on 3 months of 3 time a day PICC line antibiotics... as a result of having the PICC line for so long he has now developed blood clots. So all in all in 2016 the hospital had us for a stay the whole month of January and at least 3 days a month April through December. Needless to say he is apprehensive about going to the doctor now because every time he goes he thinks they are going to admit him to the hospital.

I do try to be supportive of his mental well being. I know itís hard to sit around everyday wanting to be ďnormalĒ and not having any control. I know there are days he doesnít want to go on but he does and I love him more for that. I wish there was more understanding on the mental health side of this disease because I feel it can be just as hard to deal with as the physical pain.

I wish you were able to get more help and support in general. I know itís got to be frustrating to hear ďitís all in your head.Ē I honestly canít believe someone would say that to any patient. You deserve better than that and Iím very sorry. If you want a referral to a place in the states where they will address every issues that you have, think you have, might have, or donít have with surgery- I know just the place 😂
11-19-2017, 03:40 PM   #21
Magnolia24
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It can be very difficult to be the sick person in the relationship, but your deserved support and empathy for your husband doesn't mean your needs are less valid.
It's an ongoing challenge - there are times when my partner and I are almost able to forget that I have an illness, and there are times when I am very sick and he takes on a larger share of responsibilities. I really believe the only way this can work is with ongoing communication. I never want him to silently resent me or feel unappreciated, so it has to be an ongoing conversation. I hope you can find a way to express how you're feeling.
I also wonder if there are things you can do together that would help you both to feel like he is able to contribute more, share the workload, and just share time together? I don't know what his physical capabilities are, and what this activity could be is totally dependent on that...but even if you're cooking and he chops vegetables while seated at a table or something?
Similarly, maybe suggest non-strenuous activities that could structure his time? I find it is easy for resting and recovery to become an isolating depression, and if there are ways to add some structure to his daily life, while of course keeping it restful and low-impact, it may help his mindset.
Finally, I know therapy was already brought up, but I really do think it would be a good idea. You're both dealing with a lot, and sometimes support from outside is necessary. If he isn't ready for couples therapy, would you consider just talking to a therapist yourself? Providing care to a loved one asks a lot of you, and you deserve support too. Best wishes!
11-20-2017, 07:23 AM   #22
valleysangel92
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Hello, welcome to the forum

I'm 24, I was diagnosed as having Crohns when I was 19 after 5 years of battling for a diagnosis, and have a host of other illnesses as well. I have been with my partner Gareth for 5 and a half years and got engaged in June. He has never known me well.

Crohns is a cruel illness, you think you have it beat and it comes back and pulls you right back down, that's physically and mentally exhausting for anyone. It can be so easy to slip into depression and to isolate from those around you. I find it tiring to even hold a conversation at times, and so can struggle to keep an active part in my relationships with my fiance and other family members.

I live with my parents at the moment, and I must admit I don't do a huge amount around the house. I do my own laundry, I change my bedding, I help with dinner occasionally and thats about it. I rarely do any of the cleaning (although mum often says she doesn't want me to because she think it would be too much for me) and I don't do any of the shopping etc because I can't drive which is basically essential where I live.

To many, it would look like I sit around doing nothing all day long, and I often struggle with this idea myself. I was/am an ambitious, hard working person. I passed my school exams with flying colours, and got high grades at college despite having horrendous stomach pain (so bad I was leaning on radiators to get the heat on my tummy). I even started a nursing degree in university, but had to leave because I couldn't get the strength to attend lectures. Its incredibly disheartening to go from making the footsteps into a long and well respected career to suddenly sitting around at home with barely the strength to get dressed most of the time. I'm still unable to work now, and its one of the things that gets to me the most out of everything these illnesses throw at me.

Having a chronic illness like this, especially if it stops you working, can really strip away your identity. It can make it feel as though all you are is a "sick person", you feel like you don't contribute anything to your loved ones, and it can make you feel invisible at times. You become scared that everything you do will make things worse or add to the burdens of those around you and so it's easy to just give up trying. It could be that your husband is struggling to figure out what hes supposed to do, its hard to work out what your place in the world is when you spend most of your time at home by yourself.

Over time, many of us start to find a "new normal", a way to function in our new world and a way to feel like we are still having some sort of life, for me, I sketch. I love being creative and it really helps me focus on something other than my illness, but some find it much harder to adapt or find a purpose and can sink into a routine of not really doing anything or making any effort.

For some, the feeling of not achieving anything or not having any purpose, can leak into having no self worth, this is definitely something I've struggled with in the past. This then can lead to not making effort in our relationships or not looking after ourselves. It can be really hard to keep trying to make things better when you know you're facing an illness that wont ever be 100% fixed, and some struggle to see a point in trying to recover if its just going to keep coming back.

Could it be that your husband thinks you'd actually be better off without him? It's really common for people with illnesses like this to think that they are a big burden on those around them, and sometimes we try to push those people away because we really think they'd be better off with someone else. I know that I've struggled with this myself in the past and still do sometimes. My partner is clever and ambitious, he could go really far in life, but instead he's chosen to get a job near me and spend his life with me, and on my really down days, I struggle to see why he would want me.

You could try having an open conversation with your husband, perhaps not directly about the chores to begin with (that could feel like an attack if hes already in a low mindset). Tell him your concerned about him and would like to know how he's feeling, remind him that you love him and that you will never leave him because of his illness. Remind him of the things you love about him, and maybe try to open a conversation about some of the things you miss doing together. I'd try to start with something pretty simple that doesn't rely on him feeling well , like cuddling up and watching a film together or maybe making something together if he's creative. Perhaps ask him what he misses being able to do, and then you could maybe sit down together and work out a way to make that activity more accessible for him.

I can't comment too much on the chores as I don't know his individual abilities or the layout of your home although I would say that he should at least be able to clear up his own rubbish provided the bins are well placed. I assume he makes himself lunches while you're in work? perhaps when he does that he could prep a little veg or something if its not too tiring for him?

As for the disability aspect, I can understand it must be hard for you financially. I don't know how it works in the US, but in the UK we have something called ESA. I currently get this because I'm classed as being independent (my parent's earnings aren't taken into consideration) but when I move in with my fiance, I will stop being classed as independent, and if he is working full time then I won't be able to claim any help (despite a minimum wage not being enough to live on) . I'm not sure how they look at household income where you are, but it might be you have a limited claim because of your earnings. I can also understand your husband being reluctant to claim. Again I don't know what its like where you are, but its really stressful here, the process is long and complicated, and they often turn people down even though they are very clearly not well enough to work. We have had cases where people have been turned down despite having terminal illnesses.

It can also be a degrading experience, you're asked a lot of very personal and invading questions, which can leave you feeling exposed and often judged. It's really quite hard trying to prove to the assessors that you're sick and unable to take care of yourself in a financial way. As I mentioned earlier, I've always been ambitious and really quite independent, so it was really hard for me to accept that I needed to rely on the government for money to get to appointments etc. I've always been taught to work for my money and to look after myself in every aspect possible so this is very alien to me. It was actually an employer who eventually persuaded me to get help, I'd only been working there 2 months and she told me very clearly I was far too sick to work, and convinced me that applying for help was not weak and did not make me lazy or a scrounger (a lot of people in the UK see claiming benefits as lazy). She let me go on compassionate grounds, and I managed to get my claim sorted out without too many issues. Is there an advice service you could maybe go to which would help to explain the process and help your husband understand that its OK to seek help? Sometimes its the not knowing what will happen that can put people off trying.

I hope this is somewhat helpful, I'm sorry its ended up so long. Please don't think you can't share your feelings, of course people have a different point of view, but it is hard on family and loved ones, which not everyone understands. I know my partner struggles but we have a healthy relationship and I do everything I can to try not to let him feel like a carer or like he can't be his own person. It may be that your husband wants to do this for you but doesn't know where to begin. Please continue to reach out here, we will do our best to support you and try to empathise with you, if your husband would benefit from talking to people who are in a similar situation to him then maybe you could get him to come have a chat too. My inbox is always open should you need anything.
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
11-20-2017, 09:29 AM   #23
sabboo
 
Join Date: Jun 2015
Location: hull, United Kingdom

My Support Groups:
Hello, welcome to the forum

I'm 24, I was diagnosed as having Crohns when I was 19 after 5 years of battling for a diagnosis, and have a host of other illnesses as well. I have been with my partner Gareth for 5 and a half years and got engaged in June. He has never known me well.

Crohns is a cruel illness, you think you have it beat and it comes back and pulls you right back down, that's physically and mentally exhausting for anyone. It can be so easy to slip into depression and to isolate from those around you. I find it tiring to even hold a conversation at times, and so can struggle to keep an active part in my relationships with my fiance and other family members.

I live with my parents at the moment, and I must admit I don't do a huge amount around the house. I do my own laundry, I change my bedding, I help with dinner occasionally and thats about it. I rarely do any of the cleaning (although mum often says she doesn't want me to because she think it would be too much for me) and I don't do any of the shopping etc because I can't drive which is basically essential where I live.

To many, it would look like I sit around doing nothing all day long, and I often struggle with this idea myself. I was/am an ambitious, hard working person. I passed my school exams with flying colours, and got high grades at college despite having horrendous stomach pain (so bad I was leaning on radiators to get the heat on my tummy). I even started a nursing degree in university, but had to leave because I couldn't get the strength to attend lectures. Its incredibly disheartening to go from making the footsteps into a long and well respected career to suddenly sitting around at home with barely the strength to get dressed most of the time. I'm still unable to work now, and its one of the things that gets to me the most out of everything these illnesses throw at me.

Having a chronic illness like this, especially if it stops you working, can really strip away your identity. It can make it feel as though all you are is a "sick person", you feel like you don't contribute anything to your loved ones, and it can make you feel invisible at times. You become scared that everything you do will make things worse or add to the burdens of those around you and so it's easy to just give up trying. It could be that your husband is struggling to figure out what hes supposed to do, its hard to work out what your place in the world is when you spend most of your time at home by yourself.

Over time, many of us start to find a "new normal", a way to function in our new world and a way to feel like we are still having some sort of life, for me, I sketch. I love being creative and it really helps me focus on something other than my illness, but some find it much harder to adapt or find a purpose and can sink into a routine of not really doing anything or making any effort.

For some, the feeling of not achieving anything or not having any purpose, can leak into having no self worth, this is definitely something I've struggled with in the past. This then can lead to not making effort in our relationships or not looking after ourselves. It can be really hard to keep trying to make things better when you know you're facing an illness that wont ever be 100% fixed, and some struggle to see a point in trying to recover if its just going to keep coming back.

Could it be that your husband thinks you'd actually be better off without him? It's really common for people with illnesses like this to think that they are a big burden on those around them, and sometimes we try to push those people away because we really think they'd be better off with someone else. I know that I've struggled with this myself in the past and still do sometimes. My partner is clever and ambitious, he could go really far in life, but instead he's chosen to get a job near me and spend his life with me, and on my really down days, I struggle to see why he would want me.

You could try having an open conversation with your husband, perhaps not directly about the chores to begin with (that could feel like an attack if hes already in a low mindset). Tell him your concerned about him and would like to know how he's feeling, remind him that you love him and that you will never leave him because of his illness. Remind him of the things you love about him, and maybe try to open a conversation about some of the things you miss doing together. I'd try to start with something pretty simple that doesn't rely on him feeling well , like cuddling up and watching a film together or maybe making something together if he's creative. Perhaps ask him what he misses being able to do, and then you could maybe sit down together and work out a way to make that activity more accessible for him.

I can't comment too much on the chores as I don't know his individual abilities or the layout of your home although I would say that he should at least be able to clear up his own rubbish provided the bins are well placed. I assume he makes himself lunches while you're in work? perhaps when he does that he could prep a little veg or something if its not too tiring for him?

As for the disability aspect, I can understand it must be hard for you financially. I don't know how it works in the US, but in the UK we have something called ESA. I currently get this because I'm classed as being independent (my parent's earnings aren't taken into consideration) but when I move in with my fiance, I will stop being classed as independent, and if he is working full time then I won't be able to claim any help (despite a minimum wage not being enough to live on) . I'm not sure how they look at household income where you are, but it might be you have a limited claim because of your earnings. I can also understand your husband being reluctant to claim. Again I don't know what its like where you are, but its really stressful here, the process is long and complicated, and they often turn people down even though they are very clearly not well enough to work. We have had cases where people have been turned down despite having terminal illnesses.

It can also be a degrading experience, you're asked a lot of very personal and invading questions, which can leave you feeling exposed and often judged. It's really quite hard trying to prove to the assessors that you're sick and unable to take care of yourself in a financial way. As I mentioned earlier, I've always been ambitious and really quite independent, so it was really hard for me to accept that I needed to rely on the government for money to get to appointments etc. I've always been taught to work for my money and to look after myself in every aspect possible so this is very alien to me. It was actually an employer who eventually persuaded me to get help, I'd only been working there 2 months and she told me very clearly I was far too sick to work, and convinced me that applying for help was not weak and did not make me lazy or a scrounger (a lot of people in the UK see claiming benefits as lazy). She let me go on compassionate grounds, and I managed to get my claim sorted out without too many issues. Is there an advice service you could maybe go to which would help to explain the process and help your husband understand that its OK to seek help? Sometimes its the not knowing what will happen that can put people off trying.

I hope this is somewhat helpful, I'm sorry its ended up so long. Please don't think you can't share your feelings, of course people have a different point of view, but it is hard on family and loved ones, which not everyone understands. I know my partner struggles but we have a healthy relationship and I do everything I can to try not to let him feel like a carer or like he can't be his own person. It may be that your husband wants to do this for you but doesn't know where to begin. Please continue to reach out here, we will do our best to support you and try to empathise with you, if your husband would benefit from talking to people who are in a similar situation to him then maybe you could get him to come have a chat too. My inbox is always open should you need anything.
The illness is bad for everyone. It's good people support you. Some days it's hard to see anything positive in anything. I work 3 hour in a. Morning and early start cripples me the rest of the day but it's. Choice I made so I can provide. When my youngest turns two he ill be able to goto nursery and 3 get funded for 30 hours a week hopefuly allowing me either back into full time work or something with more normal hours. I'm lucky that I can work again but it's not normal and not easy. I'm hoping having 4 years experience as a cleaner in the same job will open doors when I start applying. Crohns is so much more than a dodgy gut. The food intolerance and other immune reactions make life really difficult and at times impossible. Last week I was so run down I decides to start a course of prednisolone that someone had given me a while back. All I was doing was sleeping 14 hours a day and had No energy for anything except scrapping out blood. I k ow a trip to the drs here is a waste of time and it's amazing to feel normal if it will only be for a week

11-20-2017, 09:33 AM   #24
sabboo
 
Join Date: Jun 2015
Location: hull, United Kingdom

My Support Groups:
Hi Wifey2424,

I'm so sorry to hear that you are having such a rough time. Chronic illness is a terrible thing to deal with, I have IBD and have had 14 surgeries on my rear end. My wife left me and took my son with her. I think you are being such a good person to stick with your husband. Have you considered a marriage counselor? It was really hard for me to reach out to receive disability status and payments too because I was ashamed that I couldn't provide for my family. There is no shame for applying to disability for help. Maybe you should let him talk to me on a pm (private message) I would be willing to tell him what I went through and encourage him. You can do it but it really does take an effort.

Feel free to reach out to me on a pm any time you need someone who understands a male point of view. also I may be able to answer questions about, "how guys with IBD/Crohn's think."



I wish you all the very best,

Chris
Sorry to hear your story. Can I ask why you have had so many surgeries? I was offered and refused. I was told they won't fix it and just offer more complications.

11-20-2017, 07:40 PM   #25
Wifey2424
 
Join Date: Nov 2017
Location: Nashville, Tennessee
Hello, welcome to the forum

I'm 24, I was diagnosed as having Crohns when I was 19 after 5 years of battling for a diagnosis, and have a host of other illnesses as well. I have been with my partner Gareth for 5 and a half years and got engaged in June. He has never known me well.

Crohns is a cruel illness, you think you have it beat and it comes back and pulls you right back down, that's physically and mentally exhausting for anyone. It can be so easy to slip into depression and to isolate from those around you. I find it tiring to even hold a conversation at times, and so can struggle to keep an active part in my relationships with my fiance and other family members.

I live with my parents at the moment, and I must admit I don't do a huge amount around the house. I do my own laundry, I change my bedding, I help with dinner occasionally and thats about it. I rarely do any of the cleaning (although mum often says she doesn't want me to because she think it would be too much for me) and I don't do any of the shopping etc because I can't drive which is basically essential where I live.

To many, it would look like I sit around doing nothing all day long, and I often struggle with this idea myself. I was/am an ambitious, hard working person. I passed my school exams with flying colours, and got high grades at college despite having horrendous stomach pain (so bad I was leaning on radiators to get the heat on my tummy). I even started a nursing degree in university, but had to leave because I couldn't get the strength to attend lectures. Its incredibly disheartening to go from making the footsteps into a long and well respected career to suddenly sitting around at home with barely the strength to get dressed most of the time. I'm still unable to work now, and its one of the things that gets to me the most out of everything these illnesses throw at me.

Having a chronic illness like this, especially if it stops you working, can really strip away your identity. It can make it feel as though all you are is a "sick person", you feel like you don't contribute anything to your loved ones, and it can make you feel invisible at times. You become scared that everything you do will make things worse or add to the burdens of those around you and so it's easy to just give up trying. It could be that your husband is struggling to figure out what hes supposed to do, its hard to work out what your place in the world is when you spend most of your time at home by yourself.

Over time, many of us start to find a "new normal", a way to function in our new world and a way to feel like we are still having some sort of life, for me, I sketch. I love being creative and it really helps me focus on something other than my illness, but some find it much harder to adapt or find a purpose and can sink into a routine of not really doing anything or making any effort.

For some, the feeling of not achieving anything or not having any purpose, can leak into having no self worth, this is definitely something I've struggled with in the past. This then can lead to not making effort in our relationships or not looking after ourselves. It can be really hard to keep trying to make things better when you know you're facing an illness that wont ever be 100% fixed, and some struggle to see a point in trying to recover if its just going to keep coming back.

Could it be that your husband thinks you'd actually be better off without him? It's really common for people with illnesses like this to think that they are a big burden on those around them, and sometimes we try to push those people away because we really think they'd be better off with someone else. I know that I've struggled with this myself in the past and still do sometimes. My partner is clever and ambitious, he could go really far in life, but instead he's chosen to get a job near me and spend his life with me, and on my really down days, I struggle to see why he would want me.

You could try having an open conversation with your husband, perhaps not directly about the chores to begin with (that could feel like an attack if hes already in a low mindset). Tell him your concerned about him and would like to know how he's feeling, remind him that you love him and that you will never leave him because of his illness. Remind him of the things you love about him, and maybe try to open a conversation about some of the things you miss doing together. I'd try to start with something pretty simple that doesn't rely on him feeling well , like cuddling up and watching a film together or maybe making something together if he's creative. Perhaps ask him what he misses being able to do, and then you could maybe sit down together and work out a way to make that activity more accessible for him.

I can't comment too much on the chores as I don't know his individual abilities or the layout of your home although I would say that he should at least be able to clear up his own rubbish provided the bins are well placed. I assume he makes himself lunches while you're in work? perhaps when he does that he could prep a little veg or something if its not too tiring for him?

As for the disability aspect, I can understand it must be hard for you financially. I don't know how it works in the US, but in the UK we have something called ESA. I currently get this because I'm classed as being independent (my parent's earnings aren't taken into consideration) but when I move in with my fiance, I will stop being classed as independent, and if he is working full time then I won't be able to claim any help (despite a minimum wage not being enough to live on) . I'm not sure how they look at household income where you are, but it might be you have a limited claim because of your earnings. I can also understand your husband being reluctant to claim. Again I don't know what its like where you are, but its really stressful here, the process is long and complicated, and they often turn people down even though they are very clearly not well enough to work. We have had cases where people have been turned down despite having terminal illnesses.

It can also be a degrading experience, you're asked a lot of very personal and invading questions, which can leave you feeling exposed and often judged. It's really quite hard trying to prove to the assessors that you're sick and unable to take care of yourself in a financial way. As I mentioned earlier, I've always been ambitious and really quite independent, so it was really hard for me to accept that I needed to rely on the government for money to get to appointments etc. I've always been taught to work for my money and to look after myself in every aspect possible so this is very alien to me. It was actually an employer who eventually persuaded me to get help, I'd only been working there 2 months and she told me very clearly I was far too sick to work, and convinced me that applying for help was not weak and did not make me lazy or a scrounger (a lot of people in the UK see claiming benefits as lazy). She let me go on compassionate grounds, and I managed to get my claim sorted out without too many issues. Is there an advice service you could maybe go to which would help to explain the process and help your husband understand that its OK to seek help? Sometimes its the not knowing what will happen that can put people off trying.

I hope this is somewhat helpful, I'm sorry its ended up so long. Please don't think you can't share your feelings, of course people have a different point of view, but it is hard on family and loved ones, which not everyone understands. I know my partner struggles but we have a healthy relationship and I do everything I can to try not to let him feel like a carer or like he can't be his own person. It may be that your husband wants to do this for you but doesn't know where to begin. Please continue to reach out here, we will do our best to support you and try to empathise with you, if your husband would benefit from talking to people who are in a similar situation to him then maybe you could get him to come have a chat too. My inbox is always open should you need anything.
Thank you for such kind words. I try to be as compassionate towards this disease as I can because I know first hand how it can deteriorate a person. I think the main issue I am having at the moment is that he has shut down. I never come at him in a confrontational manner nor do I want to, however, it has gotten to the point that if I mention anything about any part of the disease he will shut down. This is definitely the hardest part on my end. Itís taking care of someone who doesnít have the motivation to take care of themselves. Iím not even saying totally take care of themselves, but any little thing can help. I often make his lunch for him before I go to work.. he will sometimes eat and sometimes not... I get that though. What I donít get is things like the trash.. you brought your Gatorade bottle all the way to the kitchen but couldnít put in the trash can literally 2 feet away.. and it has a foot pedal where he doesnít even need to bend down. Things like this would be huge to me. It seems so trivial, I know, but this is where I am having the disconnect. Iím not asking him to vacuum or do dishes or make the bed or any of that. After so many years I know what his limitations are and what they are not.

disability is definitely still hard to get in the states and I know his main issue with this is his anxiety. I donít think itís the awkward questions.. for Godís sake he has rectal crohns and an ostomy and will show his ass and ostomy off to anyone that wants to see them 😂. We will work through it though. I just have to figure somethings out myself.

I am really glad to hear other stories like yours where people decide to weather this thing together! Itís not easy for either party but I am encouraged when love wins. At the end of the day that is what will get you through. I like to think couples who deal with disease have a leg up because they are already dealing with more shit than many people have to deal with in a lifetime!! Congrats on the engagement and I look forward to hearing more updates!!
11-20-2017, 10:08 PM   #26
cmack
Senior Member
 
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Join Date: Aug 2014
Location: British Columbia

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Sorry to hear your story. Can I ask why you have had so many surgeries? I was offered and refused. I was told they won't fix it and just offer more complications.
I think it was a combination of things. I only had access to a general surgeon for one. He cared as much as any doctor could, I really do owe my life to him, for real. He wasn't really that experienced with advanced rectal surgeries and I had a lot of abscessing that kept returning repeatedly after surgery. He was hindered, because as the surgeon, he didn't have access to an MRI, except for a mobile unit that came to the hospital once a year or so. Because of this he wasn't able to find all the fistula tracts that were caused by the pressure of the multiple abscess's that I had. He was basically working in the dark trying to do his best for me. I don't blame him at all, he is a really great guy.

I was eventually able to see a colorectal surgeon and that was my final operation. There was such a long wait time and most of the surgeries were done as an emergency. It was always in response to sepsis, caused by the continuing abscess's and multiple fistulas. I guess I had bad luck on top of everything else too.

A cutting seton was inserted during my final procedure, and it remained for several years until I pulled it out myself. It was very aggravating and I was trying to work while it felt like I had a piece of barb wire stuck in my ass. I lost the outer sphincter due to surgical procedures and the internal sphincter was also damaged. I'm lucky if I have 35% of sphincter muscle left.


So ya, now incontinence is an issue as well. I simply can't use toilet paper because it damages and inflames the exposed, and sensitive, inner(now outer tissue). What once was the inside of the rectum is now the outside and it is very tender. I have to be near a fully equipped bathroom at all times because I have to use the shower wand to clean myself. If I don't use water and a clean finger to clean the rectal area, I get, for lack of a better term, the adult equivalent of severe diaper rash and can barely walk after a few hours of intense irritation. A bidet would be nice, but here in Canada, they are very few and far between.

That's my story, I hope nobody else has to go through it because it was hell on earth.


Best wishes to all, as always,

Chris.

Last edited by cmack; 11-21-2017 at 12:26 AM. Reason: typos
11-21-2017, 10:31 AM   #27
The Real MC
Senior Member
 
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Join Date: Mar 2013

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You are to be commended to being dedicated to your husband at a tough time. Some people here fail to understand the wedding vow "in sickness and in health".

I wish your husband would show his appreciation for the wonderful wife he has. Please don't take it personally. It is likely his coping method with the disease and the anxiety that goes with it is to shut the world out and he is oblivious to the impact it is having on you. He probably needs help to cope with it mentally. There may be a support group near you for people with CD. Please encourage him to attend, and you should go too.
11-21-2017, 08:21 PM   #28
Wifey2424
 
Join Date: Nov 2017
Location: Nashville, Tennessee
I do not take it personally at all!! This is why I am here. I love the support that you guys bring! We will work through this. Each and everyday is a new experience. I have to give my husband props today.. he brought the trash cans in from the curb! You guys know how big of a thing this can be!!! These little things are what matters most to me! One day and one step at a time!
11-29-2017, 08:16 PM   #29
cmack
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Join Date: Aug 2014
Location: British Columbia

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I hope things are okay.
11-30-2017, 02:04 PM   #30
The
 
Join Date: Nov 2017
Location: Chattanooga, Tennessee
I didn't really read some of the other posts, but here goes:

I'm the one with Crohn's in a 17 year marriage.
At the worst of my illness I was depressed and feeling useless. Not to mention am kinda useless when it comes to many things.

He sounds like I was. Here's the reality, for him: Life is still moving around in it's own comings and goings and doings. Figure out what he CAN do, as opposed to can't. He can clean a bit. He can cook a bit. He can still do many things in spurts between the bathroom needs and other things. As energy allows. He's GOING to have "couch only" days. Those just... suck. They suck everything.

For the disability: Get power of attorney over him somehow and hire a lawyer to do it, if it needs to be done that badly.

Or show him my message to him:"You will win when you see a judge, based on what your wife said. I won, with a LOT less surgeries and proof. Get it done, it WILL happen."
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