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12-22-2016, 10:02 PM   #1
carnold1435
 
Join Date: Jan 2016
Location: port orange, Florida
I feel so selfish

I'm very new to this and I really do not want to offend anyone, so please keep in mind when reading this post that I am looking for honest support. I am 24 years old and have been with my boyfriend for two and a half years. My boyfriend was diagnosed with crohn's at nine years old and has been living with this illness for his whole life, it is a constant struggle for him and although it breaks my heart to constantly see him in so much pain. I feel extremely selfish when I want to live my life, I am a full time student at a large university and enjoy going out and having fun, but his illness prevents him from doing the same and this obviously causes tension in our relationship. I want so bad to make this work, but doctors have run out of options for his medical treatment, and he is at the point of having 20-40 flares a day. He is constantly in pain, and I have no idea how to handle him when he becomes angry/irritable with me for no reason other then the pain he is in. I try to be understanding, but I want to live a normal life again. I have spent two years trying to accommodate my lifestyle to fit his, and I am starting to feel as though I am losing myself. He constantly feels as though he needs to be in control of every situation due to the fact "he will never know when the next flare will happen", when I tend to be a more laid back "go with the flow" type of person. I know its selfish and I understand that, but at what point do I quit trying to make him happy and worry about myself? I have missed out on 3/4 of my college experience, whether it be taking care of him when he had to recover from major surgery, or him being in and out of the hospital. I love him so much but I feel like I may be losing him to his disease...please help.
12-23-2016, 12:41 AM   #2
ronroush7
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He is blessed to have a girlfriend like you. Continue to show him support but at the same time set apart some time for yourself.
12-23-2016, 09:15 AM   #3
Lisa
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First, I applaud you for standing by him and reaching out for support.

When you say he has run out of options does that include biologics? Has he considered or had any surgery if his disease is located in one area rather that throughout his system? If things are bad enough, he may need to consider being hospitalized to try to get things under control.

What you describe his symptoms as are not 20-40 'flares' a day - rather it sounds like he is in a flare - the frequency of having to go to the bathroom is a symptom of a flare.
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
12-23-2016, 09:24 AM   #4
carnold1435
 
Join Date: Jan 2016
Location: port orange, Florida
Forgive me Lisa for being so uneducated on this topic, he doesn't like opening up about his health because he feels as though he's got it under control. But from what he has told me, surgery wouldn't be worth it because he has had inflammation throughout his entire system so removing one part does not ensure it wouldn't show up elsewhere. Also, he's refusing hospitalization because he claims he knows they can't do anything other then pain meds (which he can't take because he gets drug tested for school). I'm unsure what biologics are but I definitely will look into it!



First, I applaud you for standing by him and reaching out for support.

When you say he has run out of options does that include biologics? Has he considered or had any surgery if his disease is located in one area rather that throughout his system? If things are bad enough, he may need to consider being hospitalized to try to get things under control.

What you describe his symptoms as are not 20-40 'flares' a day - rather it sounds like he is in a flare - the frequency of having to go to the bathroom is a symptom of a flare.
12-27-2016, 02:10 PM   #5
MizzSarah
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Join Date: Oct 2016

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I strongly encourage you to remember to be kind to yourself. Often people closest to those with any illness forgets they have their own needs while stressing over supporting their loved one.

My father has had Crohn's for 30 plus years now. He's had all possible surgeries. He's been on all those medications. My mother has been by his side from the very beginning. Now I have my own Crohn's battle and my mom is doing a double take. She herself has admitted that she doesn't really know herself anymore as for most of their marriage she was the caregiver. She identifies as a caregiver.

Don't forget who you are in the midst of this. This is something you can't control.

Remember that your partner just needs to know your there. And remember that when he is agitated, he's not mad at you. He's mad at his body.
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12-27-2016, 09:37 PM   #6
jennyredsox
 
Join Date: Apr 2012
Location: Portland, Maine

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I think that if my husband gave up all of the things that he liked to do to take care of me all the time, I wouldn't like it. It's bad enough that I have to cancel plans at the last minute and often have to miss important or enjoyable things. I would also feel guilty for being responsible for his hardship too. Have you actually talked to him about it? Asked him how he feels about you staying home for him? If you are compromising everything for him, then that is a decision you are making. If this is no longer what you want from life, then you have to make a change (for example, going out alone more often or maybe even ending the relationship). If you stay and blame him for the way your life is abnormal, then that resentment will end your relationship anyway.


12-28-2016, 03:48 AM   #7
carnold1435
 
Join Date: Jan 2016
Location: port orange, Florida
Thank you for your response, and I go out alone whenever I go out. This I see as a problem, all of my friends will have there significant others and I always show up alone. On the other hand there have been multiple occasions in which he has made me feel bad for leaving him (so I of course stay). Yes we have spoken briefly on it but he just shuts down. You are right it is a decision I'm making, I just am not exactly sure it it's the right one anymore


I think that if my husband gave up all of the things that he liked to do to take care of me all the time, I wouldn't like it. It's bad enough that I have to cancel plans at the last minute and often have to miss important or enjoyable things. I would also feel guilty for being responsible for his hardship too. Have you actually talked to him about it? Asked him how he feels about you staying home for him? If you are compromising everything for him, then that is a decision you are making. If this is no longer what you want from life, then you have to make a change (for example, going out alone more often or maybe even ending the relationship). If you stay and blame him for the way your life is abnormal, then that resentment will end your relationship anyway.





12-28-2016, 03:49 AM   #8
carnold1435
 
Join Date: Jan 2016
Location: port orange, Florida
Thank you for your response, and I go out alone whenever I go out. This I see as a problem, all of my friends will have there significant others and I always show up alone. On the other hand there have been multiple occasions in which he has made me feel bad for leaving him (so I of course stay). Yes we have spoken briefly on it but he just shuts down. You are right it is a decision I'm making, I just am not exactly sure it it's the right one anymore



I think that if my husband gave up all of the things that he liked to do to take care of me all the time, I wouldn't like it. It's bad enough that I have to cancel plans at the last minute and often have to miss important or enjoyable things. I would also feel guilty for being responsible for his hardship too. Have you actually talked to him about it? Asked him how he feels about you staying home for him? If you are compromising everything for him, then that is a decision you are making. If this is no longer what you want from life, then you have to make a change (for example, going out alone more often or maybe even ending the relationship). If you stay and blame him for the way your life is abnormal, then that resentment will end your relationship anyway.





12-28-2016, 11:14 PM   #9
CrohnsFighter
 
Join Date: May 2014

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I'm very new to this and I really do not want to offend anyone, so please keep in mind when reading this post that I am looking for honest support. I am 24 years old and have been with my boyfriend for two and a half years. My boyfriend was diagnosed with crohn's at nine years old and has been living with this illness for his whole life, it is a constant struggle for him and although it breaks my heart to constantly see him in so much pain. I feel extremely selfish when I want to live my life, I am a full time student at a large university and enjoy going out and having fun, but his illness prevents him from doing the same and this obviously causes tension in our relationship. I want so bad to make this work, but doctors have run out of options for his medical treatment, and he is at the point of having 20-40 flares a day. He is constantly in pain, and I have no idea how to handle him when he becomes angry/irritable with me for no reason other then the pain he is in. I try to be understanding, but I want to live a normal life again. I have spent two years trying to accommodate my lifestyle to fit his, and I am starting to feel as though I am losing myself. He constantly feels as though he needs to be in control of every situation due to the fact "he will never know when the next flare will happen", when I tend to be a more laid back "go with the flow" type of person. I know its selfish and I understand that, but at what point do I quit trying to make him happy and worry about myself? I have missed out on 3/4 of my college experience, whether it be taking care of him when he had to recover from major surgery, or him being in and out of the hospital. I love him so much but I feel like I may be losing him to his disease...please help.

Thank you for your response, and I go out alone whenever I go out. This I see as a problem, all of my friends will have there significant others and I always show up alone. On the other hand there have been multiple occasions in which he has made me feel bad for leaving him (so I of course stay). Yes we have spoken briefly on it but he just shuts down. You are right it is a decision I'm making, I just am not exactly sure it it's the right one anymore

I think it goes without saying that we would all like to live a normal life again. I also think it is great that you reached out here for more information. It is understandable that he feels that he needs to control the situation. The fear of the unknown is a battle for me as well, and has taken me more time to get past it that I would like to admit.

As far as losing 3/4 of your college experience by not going out... i'm not sure you really missed much. Ask yourself what you would have actually gained by going out. I'm not saying don't go out with your friends every now and then, but I can't help if you see it as a problem that when you do go you go alone while your friends bring significant others.

Next time there is tension, I would recommend stepping in his shoes and looking at it from the other side. If you were in his position, what would he expect of you?

Good Luck!
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