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Crohn's Disease Forum » Support Forum » Partners, Family, Friends & Caregivers » Feeling Helpless: Partner of Crohn's Sufferer


12-05-2012, 05:34 AM   #1
MAI
 
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Feeling Helpless: Partner of Crohn's Sufferer

I have been with my partner for 6 years now. He was diagnosed with Colitis in his teenage years, long before I met him. At the time of diagnosis he was seriously ill and had to have major surgery for an ileo-anal pouch. Many years on he has very recently been re diagnosed with Crohn's after becoming seriously ill with a fistula this year. He was operated on to treat the fistula and given an loop ileostomy to give his puch a rest and help recover from the infection caused by the fistula. Since his recent surgery, there has been talk of him starting on several drugs such as Methatrexy (no idea if that's how you spell it??) but due to the added complication of his fistula /infection they are holding off for now. Next year it is possible his loop ileostomy will be reversed or be made permanent, which would also mean that he would have a pouch excision. In the meantime he has been having bad bouts of Crohn's; generally feeling unwell, aching joints, pain from his fistula, severe mouth ulcers, fatigue etc etc. Inevitably, the constant barrage of illness is getting him very down and his moods can be very low, often feeling agitated and annoyed. I often bear the brunt of this, and I try very hard to remain understanding and patient, but I have to admit it's not easy. I feel guilty as I know that what he's going through must be horrible and incredibly frustrating when all you want to do is get on with your life. I feel terrible for him and so helpless - watching someone you love more than anyone in the world go through so much suffering is hard - I just want to do something to make it all better for him. I do anything I can think of that might try and help, and of course offer love, affection, understanding and moral support. My friends and family are aware of his illness and they always ask after him but it's hard to even begin to explain what he goes through on a regular basis so often don't even attempt to. I don't really have anyone to talk to about it.

I was wondering what other partners/families/friends experiences are? In particular how do you cope with the low moods/short tempers? I'm hoping that next year will offer him some reprieve and his health will improve once a plan of action has been decided by the doctors. Of course I know that this is something that will never go away completely but I'm wondering how others cope with the really diffcult periods of the illness - what ways do you offer support/help?
12-05-2012, 02:06 PM   #2
Cat-a-Tonic
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Hi Mai, welcome to the forum. I'm the patient and my husband is the caretaker so I can only offer my perspective, but it sounds like you're doing a great job in spite of crappy (no pun intended) circumstances. There really is only so much a partner can do and I'm sure that helpless feeling is awful. Just being there for him is a big deal though - make sure to let him know that you're not going anywhere, either. This is a rather un-sexy illness and I often feel gross and try to shy away from my hubby, sometimes I think he'd be better off without sicky old me, but he lets me know he is sticking around and that he thinks I'm pretty even when I feel the opposite of pretty. Stuff like that means a lot!

And really, it is so easy to get depressed when you're ill all the time so I certainly understand your partner's dark moods. The worst for me is when I'm so ill that I can't do anything productive. I can't even fold laundry or load the dishwasher when I'm flaring badly and stuff like that might be the most frustrating thing of all. I just feel worthless when I'm not able to do the most basic of things and even taking a shower is a massive challenge. So help him out with doing the bigger chores, but see if there are things he feels he can do himself too so that he feels worthwhile. Does he have any hobbies? Maybe he could write or study something? Personally I crochet, I can do it from the couch and it doesn't require a lot of effort, and when I'm done I have a nice scarf or blanket or whatever that I can give to someone or use and that makes me feel like I'm not a total waste of space.

As far as explaining things better to your friends & family, you might want to show them The Spoon Theory. It's an essay written about what it's like to live every minute of every day with a chronic illness. Here's the link:
http://www.butyoudontlooksick.com/ar...-spoon-theory/

I hope that helped a little bit. Hang in there and I hope your partner feels better soon!
12-05-2012, 08:13 PM   #3
Pirate
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MAI, I can't add much more then Cat did. Like she said, just being there is the biggest thing. Learning the signs of when to be there and when to take a step back is important. We all need that little "moment" to ourselves. The hardest part will be learning these signs. We will at times say things a little harsh when we really don't mean them so you need to be able to see it for what it is. I guess I'm trying to say at times you have to be a little thick skinned because its not our true feelings talking, its our pain.
I hope this helps a little. Its hard to give good advice when I'm the one with Crohns, but my wife is telling me some of these things so its her insight more then mine.
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12-05-2012, 08:22 PM   #4
QueenGothel
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WELCOME TO THE FORUM!

Well if there is a time to educate the family it is now. It's IBD Awareness week! Most people don't even understand what a person suffering with IBD actually deals with. It can be so exhausting for them so I hear you there for I am a caregiver and a mom so I try to control what I can without being too in her face. Just by joining the forum and showing him you care is what he needs. Your doing a great job.

12-06-2012, 05:02 AM   #5
MAI
 
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Thank you so much for all of your replies. I can't tell you how much it means to me, to be able to talk with people who truly understand that nature of the illness. I don't know why it's taken me so many years to join a forum like this, even though it doesn't change my partners situation it feels good to know others out there can understand what you're going through from both perspectives. So once again, thanks for taking time to read my post and reply.

My partner does have hobbies but they are all very active, he's not very good at sitting still!! This is another reason why feeling physically ill is very frustrating for him when his mind says go but his body doesn't! I will have to have a think about other things I could suggest to him that aren't so physical.

I do know that when he gets down in the dumps and takes his frustrations out on me that it's to do with is illness - and try so very hard to not take it personally but sometimes it's good to have that reassurance from others going through the same thing - knowing I'm not the only one.

Touching on the point about reassuring him - he's generally quite outwardly confident and never seems to worry about how his illness makes him look and how me or others may view him having a bag. But thinking on it, from time-time I see glimpses of insecurities ( he mentioned he was a bit worried about going swimming and people staring) so I will make more of an effort on that part (it's easy to let is slide when someone appears to be coping).

I will also look to send my friends and family the link - seems like a good way of giving them an insight.

Overall, I do think my partner copes amazingly well with his illness and I have a huge respect for him and how he tries to lead his life.

Thanks again everyone - hope to see your posts/ chat to you again somewhere on here - I will certainly be using it more in the future.

xxx
12-06-2012, 08:52 AM   #6
QueenGothel
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The great bowel movement has some really supportive t-shirts that read My ______ has IBD and a explanation of the disease on the back. I thought they were really cool. He might be surprised if you bought one and wore it for him. Lets him know your always thinking of him and supporting him. Just a thought.
12-06-2012, 09:21 AM   #7
shalinico
 
Join Date: Nov 2012
Location: chennai, India
Hi all, when I read this thread I became very emotional. I am a patient and my husband is taking care of me. As u know I underwent three open surgeries this year and was in the hospital most of the time, one person who always stood by me and reassured me was my husband. ....his career is not in a good shape now as he spends most of the time in the hospital...he has taken 85 days leave so far this year to be with me in the hospital...

Crohn's disease is less common in India and it took me a lot of time to accept it.....my first surgery was a life saving one and I owe my second shot of life to my husband...he was the only one who always supported me and encouraged me..the recent discussion with an ayurveda doctor was also his initiative....

I thank him from the bottom of my heart for all that he has done for me so far..
12-06-2012, 11:20 AM   #8
MAI
 
Join Date: Dec 2012
Myreinhard - That sounds like a great idea! Will look into it.

Shalinico - It sounds like you and your husband have really been through a tough time but you've getting through it together, as a team. When you truely love someone, unconditionally you'll do whatever it takes to help and support them. I know my partner would do the same for me and when I was rushed into hospital with a burst appendix and perotinitis a few years back he dropped everything to be with me. Thankfully, my experience of being very ill was very shortlived in comparison to what he has been through. I'm sure you would do the same for your husband if the situation arose and that is what counts - that you both know you'll be there for each other no matter what, even if it never comes to it, you have the comfort of knowing you'll have someone who loves you by your side no matter what. I wish all the best to you and your husband.
12-06-2012, 11:45 AM   #9
Jmrogers4
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MAI,
I read your post and can relate. My husband (of nearly 20 years) and my son both have Crohn's Disease. My husband was dx'd 2 months after we got engaged. My son was dx'd 3 years ago (he is 13 now)
The moodiness, grumpy, short temper is usually my first sign that they are not feeling well, and sometimes you just have to walk away for a little while, because yes they feel bad but you are a person too and really don't need to be treated that way (I usually just go to the store) It gives me enough time that I'm recharged and can give them the support they are asking for. I can usually come back and not be angry and say, I realize you feel like crap and I know I can't make you better but what can I do for you? Whether that is just some quiet time to relax, a heating pad or just holding them.
The others have given you some great insight. Sometimes it's comfort they need and sometimes it is just someone to agree with them that this disease sucks!
Hope he is feeling better soon, sending loads of support your way
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Mom to Jack (18) dx Crohn's 2/2010
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Husband dx Crohn's 3/1993
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02-11-2013, 02:33 PM   #10
Ya noy
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My husband's had a number of health problems, and he's been getting pretty frustrated, irritable, and on steroids now, has been irrational too.

We have a lot of inside jokes, and same warped sense of humor, so I can usually do or say something to lighten his mood. Little humor goes a long way in alleviating depression.
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