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10-21-2012, 05:51 PM   #1
Tmack
 
Join Date: Oct 2012
Location: Rochester, New York
I wish I was at this alone

I am fortunate enough to have an amazing family and an even more amazing husband but lately I really feel like I am a burden on all of them. My fatigue and body pain has become so much that I can barely do anything for myself. Although my husband never complains and sympathizes with my disease I feel like I am holding him back. We're a young couple and can't live a normal life because my disease is not controlled. I feel so much guilt over all of this and I don't know what to do, it's only making my symptoms worse. I can't believe I'm complaining because I have someone so truly special in my life, I just never want him to look back and regret the sacrifices he had to make because of my disease. Any advice would be greatly appreciated.
10-21-2012, 10:16 PM   #2
LisaL
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Join Date: Sep 2012
Location: Los Angeles
I can only offer you my support. I too have tremendous fatigue and joint pain, and when you add abdominal pain there are not that many days when I feel good. I have no way to compare our feelings, but I do push myself hard to get up and out with my husband and three kids. Sometimes staying home makes me feel worse than suffering the fatigue and joint pain. I hope you find some relief soon.
Lisa
10-21-2012, 10:44 PM   #3
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi Tmack and welcome to the community.

First off, you are not a burden (read that)!

Second, would you like to present your symptoms and medications and history? Maybe we could offer some thoughts to help you get your disease under control.

*hugs*
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10-22-2012, 08:45 AM   #4
Tmack
 
Join Date: Oct 2012
Location: Rochester, New York
Lisa I try, but with working in retail 60 hrs a week my body feels like its quitting and with all our student loans and wanting to save for a home, I find it hard to say no to the overtime even though it'll mean no fun activities for me that week. We make the best of it, have friends over to our place, go see a movie if I haven't eaten lol. But it's frustrating not to be able to do things we used to. I've been sick our entire relationship, and when I finally received a diagnoses only 3 days before our wedding he offered to postpone so I could have some alone time. So I rationally know that he's made the decision to be with me in this for the long hall, but some days it's tough to understand why he'd want to be with someone who spends almost all their free time in the bathroom or wrapped in a snuggie
10-22-2012, 01:28 PM   #5
DustyKat
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Join Date: May 2010
Location: New South Wales, Australia
Hey Tmack...

How long since your diagnosis and marriage?

Both of my children have Crohn's and I know the relationship between a Mother and a child is different to that of a husband and wife but nonetheless there are also many similarities. I understand that when you are the one suffering it can be difficult not to have the very feelings you are but there are many special people out there that have the ability look beyond the physical and love you unconditionally for who you are. They have the deep understanding and capacity to know that you have a disease but that it is not what defines you. Your husband appears to be one these people, he has a personality that is founded on sensitivity, caring and nurturing.

All sound relationships are based on give and take and no doubt you bring your own strengths to your union. They may not always be the physical ones, the ability to keep the pace but true love doesn't see that. You won't always feel the way you are now, both physically and psychologically, and you too will look back and think to yourself...whoa, they were dark days for me...but things are so much better now.

You have a chronic disease and I am not suggesting that this is the case but for a number of people, it is suggested that about 25% of people with Crohn's, suffer with anxiety/depression at some point. Do you think this may be possible that his may explain some of the feelings you are having?

Perhaps another thing to consider that may help you understand why you feel this way is grieving. I know that sounds strange but please have a read through this thread, you may find something there that you can relate to.

Thinking of you,
Dusty. xxx
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Mum of 2 kids with Crohn's.
10-22-2012, 02:38 PM   #6
Tmack
 
Join Date: Oct 2012
Location: Rochester, New York
a few years ago I suffered from depression and I was depressed and therefore didn't want to do anything. Now it's different I get depressed because I can't do the things that I want to, I have every desire to participate in life fully but when I can't it really brings me down. We've been together for 8 years married for 5 months.
10-22-2012, 02:50 PM   #7
DustyKat
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Join Date: May 2010
Location: New South Wales, Australia
You are very early on in both your marriage and your diagnosis then, so a very emotional time on both fronts...

Depression has many faces and what I call the black dog may well be nipping at your heels again hun. It may be a reactionary depression to what you are facing with your health or perhaps depression that stems from grief, grief from a loss of the world as you once knew it, an inability to participate.

Dusty. xxx
10-22-2012, 03:38 PM   #8
NewRoad
 
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Join Date: Sep 2012
Location: Texarkana, Texas
Tmack, I was recently diagnosed with Crohns, I am the fourth person in my family to get this, plus my son married a woman with crohns, so I'm not really alone-alone, but I live alone half way across the country from the rest of the family. So for me it's nice to have someone to call. It sounds like you have a good strong relationship with your husband, embrace it! Check in often with the forum here, it's been a tremendous help for me. I'm hoping (for you and me) that the doctor will find the correct medication as it seems we're both plagued with pain, discomfort etc etc.. Big hugs to you.
10-22-2012, 07:49 PM   #9
LisaL
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Join Date: Sep 2012
Location: Los Angeles
Tmack...it IS hard, and I hope my comment was not heard as insensitive. I do not work so many hours, and I can only imagine just how exhausted you are after a full day of work. Your husband sounds like a very caring and supportive man, and it sounds like he is there for you to lean on. I hope you will find some relief from your pain soon. Be kind to yourself.
10-22-2012, 07:53 PM   #10
Tmack
 
Join Date: Oct 2012
Location: Rochester, New York
Thank you everyone for your support, this process is just so difficult and even though people try to understand how you're feeling they can't because its not happening to them. Lisa I didn't think you were insensitive at all. It's actually inspiring to know that you're making it work while having children because that's definitely something we want to do but have been hesitant to start
10-22-2012, 10:25 PM   #11
D Bergy
Senior Member
 
Join Date: Apr 2007
For better and for worse, in sickness and in health.

Apparently, your spouse remembers that part. Many do not.
You are very fortunate in that respect, and you will still have it when things get better.

I hope you feel better soon.

Dan
__________________
Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
They are simply my opinions.
10-29-2012, 09:46 PM   #12
BigMike
 
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Join Date: Oct 2012
Location: nashua, New Hampshire
I am fortunate enough to have an amazing family and an even more amazing husband but lately I really feel like I am a burden on all of them. My fatigue and body pain has become so much that I can barely do anything for myself. Although my husband never complains and sympathizes with my disease I feel like I am holding him back. We're a young couple and can't live a normal life because my disease is not controlled. I feel so much guilt over all of this and I don't know what to do, it's only making my symptoms worse. I can't believe I'm complaining because I have someone so truly special in my life, I just never want him to look back and regret the sacrifices he had to make because of my disease. Any advice would be greatly appreciated.
As someone in the position of your husband, I would say to lose the guilt. He is acting out of love and wants a positive response to his actions. Accept that he loves you and ditch the insecurity. You are going through enough to have to worry about being a burden. He CHOSE you, sickness and health. Now make the best of it!
10-29-2012, 11:04 PM   #13
tots
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Location: Austin, Texas

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I am suprised the anxiety/depression rate is only 25%.

With a chronic painful disease I would have guessed it to be higher.

Every night duing the worst part of my flares... then a carry over time.... I get anxiety like no other! I know what's comming!

I hope you feel better soon.


Lauren
__________________


Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


:


Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
11-03-2012, 11:32 PM   #14
theandrewscotland
 
Join Date: Nov 2012
Location: seattle, Washington
Life gets better I was struggling with crohns disease for 3 years tried imuran, methotrexate and I am currently on Humira. Life was tough I didn't understand why I was sick. Was god trying to punish me because i did something wrong? I don't know but after relapsing 3 bad times and starting to get seriously ill everytime i took methotrexate I had enough. I made my mom take me to the doctor and i pretty much said that I wasn't leaving until i get a new medication. The doctor saw the sadness, grief and pain i had and after a few test's i started humira. THIS WAS MY DRUG. My life started to turn around i started to loose weight "the real way not because everything i ate made me sick". I then pinpointed all of my "trigger foods and cut them out completely. I am currently working out everyday and believe i am finally making it into remission. The reason why I posted all of this is because life get's better! I went through all that you did depression feeling like i was a burden and most of all feeling sorry for myself. But in the end YOU are the one that can make make things change! Stay strong and through thick and thin your husband will always love you.
11-04-2012, 12:53 AM   #15
Jennifer
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Lisa I try, but with working in retail 60 hrs a week my body feels like its quitting and with all our student loans and wanting to save for a home, I find it hard to say no to the overtime even though it'll mean no fun activities for me that week. We make the best of it, have friends over to our place, go see a movie if I haven't eaten lol. But it's frustrating not to be able to do things we used to. I've been sick our entire relationship, and when I finally received a diagnoses only 3 days before our wedding he offered to postpone so I could have some alone time. So I rationally know that he's made the decision to be with me in this for the long hall, but some days it's tough to understand why he'd want to be with someone who spends almost all their free time in the bathroom or wrapped in a snuggie
Regarding the student loans, have you thought about applying for the Total and Permanent Disability Discharge for your student loans? http://www.crohnsforum.com/showthread.php?t=33604

Lots of people don't know about it. All you do is fill out the form (you can get it online or call them up and have them mail it to you) and have your doctor fill out their portion (make sure they fill out everything even if its N/A otherwise it gets sent back). So far one of my loan holders has accepted my application. http://www.crohnsforum.com/showthread.php?t=40072 So now I wait 3 more years and if I still qualify then the loans disappear.

Its something to think about if you feel like you're forcing yourself to work more than you're able. Just wanted to let you know that there are other options out there. My husband also has his own student loans to deal with but as a grad school graduate, mine are much higher.

You will get better. You wont always be confined to the bathroom and snuggie. remission is possible and I hope you get there soon.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
11-04-2012, 08:31 AM   #16
hurla31
 
Join Date: Feb 2012
Location: Newfoundland
Tmack, I totally understand exactly where you're coming from. I met my bf one month before i started to get sick. I was terribly ill and then went into the hospital, where i was diagnosed. Its been a rocky road for me the past 11 months. Having been on and off prednisone, on Imuran and now remicade, also 2 surgeries! We have stuck though it the whole time, and just had our one year. Many people say, wow he is so understanding and such a keeper. I truly feel that this whole time i have been a burden as well, i get so depressed and anxious. I cant do things all the time when he wants to, and its really hard to find energy and motivation to go out and be normal. I work almost 10 hrs a day, and really at the end of the day that last thing i want to do is be social. I try not to be hard on myself, saying that it could be worse, but it really does suck sometimes. I also feel that it might be easier on my own, i wouldn't be stressed about those relationship issues, but i do love him. Keep your head up, the thing is, it can't be this bad forever, right? I will do the same. When our lives come back to normal we will forget all about this! Big hugs, you are not in this alone..
__________________
Diagnosed Jan/2012 with Crohn's Disease
Current meds:
Prednisone/Jan-Aug***Kicked that to the curb***Finally
Imuran/Feb
Remicade/July
Synthroid
Paxil

Past meds:
Cipro
Flagyl
11-04-2012, 10:20 AM   #17
catboe
 
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Join Date: Jan 2012
Location: clarksville, Tennessee
I understand how you feel Tmack. I really do. If one doctor does not listen to you get a second opinion. We are to take one day sometimes one moment at a times. Think of the things you do accomplish, even the smallest, it is something. There are days that will be better than others. I send you hugs and prayers.
11-04-2012, 10:29 AM   #18
theandrewscotland
 
Join Date: Nov 2012
Location: seattle, Washington
Going off your medication is the worst thin you can do! remission is achievable I have had top of the line doctors an they all say whenever their patients go off their medication the crohn's comes back with a vengeance. Also what you eat is huge in all of this. I don't eat any dairy, carbonated drinks, spicy food, deep fried food, pork, not a tone of red meat, popcorn, pizza or any crazy sauces on my food. I recommend you try cutting out food that makes you sick if you haven't already. I also workout daily and that has helped I believe also. Where I live crohn's was a huge problem and so my doctors were G.I but mainly only dealed with crohn's so they knew a lot about it.
11-04-2012, 11:11 AM   #19
BigMike
 
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Join Date: Oct 2012
Location: nashua, New Hampshire
Going off your medication is the worst thin you can do! remission is achievable I have had top of the line doctors an they all say whenever their patients go off their medication the crohn's comes back with a vengeance. Also what you eat is huge in all of this. I don't eat any dairy, carbonated drinks, spicy food, deep fried food, pork, not a tone of red meat, popcorn, pizza or any crazy sauces on my food. I recommend you try cutting out food that makes you sick if you haven't already. I also workout daily and that has helped I believe also. Where I live crohn's was a huge problem and so my doctors were G.I but mainly only dealed with crohn's so they knew a lot about it.
My lady friend does this and she has her crohn's on LOCK!
11-04-2012, 06:04 PM   #20
theandrewscotland
 
Join Date: Nov 2012
Location: seattle, Washington
then she is one of the every lucky few i wish i was her!
11-04-2012, 06:34 PM   #21
tots
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Join Date: Feb 2012
Location: Austin, Texas

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I went untreated for 10 yrs. will never do that again. The disease
process continues before you are aware of it. Infection, fistulas
Cancer. Nope stay on the meds.


Lauren
11-05-2012, 04:19 PM   #22
newlymarriedtocrohns
 
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Join Date: Oct 2012
Location: Pennsylvania, USA
...So I rationally know that he's made the decision to be with me in this for the long hall, but some days it's tough to understand why he'd want to be with someone who spends almost all their free time in the bathroom or wrapped in a snuggie
He loves you because you are so much more than this condition! Though it is physically limiting, frankly you are a far stronger person because of it.

My husband and I had the same roller coaster experience for our first year. There is enough stress in a newlywed's life to cause strife without adding in all of the challenges that can come from a chronic illness.

The life-saving tip that worked for us was to communicate about everything! Don't feel guilty or try to ignore your symptoms for the sake of your husband. He cares and wants to know how you're really feeling, how he can help, when he should give you time alone, and when he can just cuddle with you in that snuggie. You were sick when he proposed and when he said "I do", so he knows what "in sickness and health" means more than most couples. This time will be hard, but it will make your relationship so much stronger in the end.
__________________
Hubby's current treatment: Asacol, Mercaptopurine, Stelara, and Low Fiber/Low Residue diet.
12-05-2012, 10:18 AM   #23
Hayleymariex
 
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Join Date: Nov 2011
Location: United Kingdom
Believe me you are not a burden. Me and my boyfriend are 18 (he's the one with crohns) and honestly, even though I may not get to do everything I'd like to it doesn't matter because I want to care for him, it makes me feel needed. I know he wouldn't be the person I love if he didn't have crohns, and so in a way we're both thankful for it, because it's helped to mature us and make us who we are.

I'm sure your hubby feels the same way. Don't worry, and maybe try to talk to him about it, it will definitely help.
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It is true that the moon glows at night, and the sun shines in the day, while there may be clouds they are always there.
12-05-2012, 07:49 PM   #24
Pirate
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Join Date: Oct 2009
Location: Freeland, Michigan
Crohns will make all of us feel like a burden at one time or another, its the nature of the beast. After 26 yrs I still feel at times like I am a burden and I'm married to the most amazing woman. I was 27 and she was 23 when I was diagnosed, we had 3 young boys and she had to be mom and dad for a few years. I missed out on so much. Family gatherings, camping, ball games, coaching my boys in Little league. School functions. I was major depressed. But my wife was there day in and day out. She has always said she wouldn't want to be anywhere else. We've been married 34 yrs and she is still my biggest support.
Even though I worried about being a burden and yes, at times tried to drive her away, she stayed. Why? She did it because of her love for me and I was the person she wanted to spend her life with. She knew the person before the Crohns.
Remember, even when you feel like a burden to the one you love, the one you love loves you too and doesn't consider you a burden. They love you for who you are. They see the heart inside of you and want to be with you forever.
We took a vow through sickness and health till death do us part. She wouldn't break those vows just because some little ol' monster started living in my guts. Remember those vows? Weren't they the sweetest words you heard when you got married. Followed by "I do". If he felt that you were a burden he probably won't have stuck around to say those words. I think you have a special guy there and that you are his world.
Try this. Every day write him a little note telling him why you love him. Before long you will realize that your love for him will always out weigh the feelings of being a burden to him. It worked for me.

Good luck and remember. No little monster in your gut can chase away the love you feel for him.
__________________
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Greg Yancer
Diagnosed w/ CD Febuary 1986
No surgeries
Current meds:REMICADE (CATS SCARE ME), Pentasa, Nexium, Probonics.
12-05-2012, 07:59 PM   #25
Pirate
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Location: Freeland, Michigan
Believe me you are not a burden. Me and my boyfriend are 18 (he's the one with crohns) and honestly, even though I may not get to do everything I'd like to it doesn't matter because I want to care for him, it makes me feel needed. I know he wouldn't be the person I love if he didn't have crohns, and so in a way we're both thankful for it, because it's helped to mature us and make us who we are.

I'm sure your hubby feels the same way. Don't worry, and maybe try to talk to him about it, it will definitely help.
Hayleymarie, I love the way you feel about each other. You 2 will be together a long, long time with those feelings. Maturity doesn't always come with years, but with trials. My wife and I were married young (her 16 and me 19) but she was so much more mature because of the life she grew up with. Being together doing the littles things is more precious than anything else in the world. We never had money when we were first married but who needs money to build a strong relationship.
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