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Husbands support of wife with UC

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Posted 9/14/2007 4:45 PM (GMT 0)
Hi everyone,

I am new to this forum.  I was diagnosed with UC when I was 18 and I am currently 39.  I have been married to my husband for 13 years.  I feel like he just does not understand how severe this disease is.  He does not give  me much emotional support( at least I feel this way).  I have two boys. He is a good father, but a husband to me?????    This has made me quite resentful towards him and built a wall in our relationship--that is his lack of emotional support toward me.  Sometimes I feel quite alone and depressed.  Am I being unreasonable?  Shouldn't a spouse of a person with UC get more involved in how they feeling and doing on a daily basis?  I would really like to hear from some others on their views and experiences.  Thank you in advance.

Posted 9/14/2007 4:50 PM (GMT 0)
My husband is quite supportive with me and this disease.  I think some just can't understand how horrible of a disease it is.  Also I think men don't have public washroom issues like women do so they don't think this disease is so bad.

Sending you a big hug!

Posted 9/14/2007 5:13 PM (GMT 0)
mine has been there for me when I needed him w/UC and understanding if I am going through a flare and am tired and cranky and just don't want to do anything and picking up my chores and giving me hugs (sometimes, I just need one!) etc..

though there has been times that he has not been helpful at all on some other things where I really needed him, but we had it out and he now understands.

I suggest talking to him and doing it in a way that lets him know how you feel about your UC without putting him down and tell him what you need from him (don't stress the past, but look toward the future)........mine says he basically needs me to hit him over the head with what I need from him sometimes.

Other than that I suggest counseling if that doesn't work, you need a place to be on equal ground to get your feelings out and be understood.

In good housekeeping magazine, they always have an article about a couple going through counseling and you hear both sides, it's pretty interesting and gives view points that I did not expect.
Posted 9/14/2007 5:15 PM (GMT 0)
Sorry to hear that, my husband has been there for me threw several health problems. We have been married for 30 years and we both have some health issues so we just lean on each other. But with that said we are here for you, I know its not the same but maybe it will help, just to have us to talk to.
Posted 9/14/2007 6:57 PM (GMT 0)
Thanxs for your quick responses. We have tried counseling twice. And it just costs an arm and leg and nothing really changes. I asked for the emotional supports for the last 13 years, and nothing has changed. He has always helped with some chores here and there. In that way, he is pretty good. I am just tired of asking. Feel pretty hopeless about this situation now. Hopefully things will change someday.
Posted 9/14/2007 8:59 PM (GMT 0)
Sometimes it is hard for others to get "it"! At first my husband thought it was all in my head and I was a hypochodriac. Now, when I'm ill, he'll ask how I'm feeling and if I need anything. I don't know what changed it for him.

One thing I've noticed though is that men do need to be asked to do this or to do that. They also need to be thanked for doing it! Many times, they just don't think of doing those sorts of things. But they like to feel like they've helped and are useful. Also, many people are willing to help - they just need to be asked, and will feel upset if they find you needed something and didn't ask.

My advise is: start small. Ask him to help with this or that and then thank him - and mean it. "I really appreciate you helping me with this (unloading the dishwasher, sorting the laundry, scrubbing the toilet), I just don't have the energy right now to keep up with it all."

I understand the resentment, however, it will only make things worse! I found that I need to bit my tongue more often. (still learning that one!)

Best of luck with it all!

Oh, and welcome to HealingWell :)
Posted 9/14/2007 9:13 PM (GMT 0)
Thank you everyone for your welcome and insights. Will try to work on more thank you's and asking for what I need.
Posted 9/14/2007 9:13 PM (GMT 0)
My husband was with me when the doctor told me about my condition yesturday and the only thing he asked the doctor was, how will this affect our sex life and will our relationship challenged. The doctor said that everyone ones relationship to this disease is different.
My question is, what happens now and what do you all do to keep the stress out of this or tentions when it comes to sex.
Posted 9/14/2007 10:33 PM (GMT 0)
At first I really did not totally understand this until I immersed myself into reading various things on the internet. And even at that I didn't really "get IT". It was when I discovered this Healing Well site that I was literally "blown away" and just read various threads for hours and gaining a real understanding. The honest and open communications that are shared I found to be so helpful.

Most of us think when someone is ill with something - get it treated and get it over with. To fully understand and grasp that this is so different for everyone and everyone is at different levels with their flares. The trial and error aspect with various meds and the time it takes to see if a certain medication is helping or not and if it doesn't on to a different one. The more and more time that goes by with no relief and add the fatigue, pain, inability to do some of the simplest tasks and needing to depend on others more than you ever needed to makes it tough.

We had a phenomenal life and marriage up to this point. We had been retired for almost 4 years and having the time of our lives and WHAM everything kind of came to a screeching halt a little more than a year ago. We are in "the sickness and in health" part of our vows now we joke about. We have been together for 39 years and so blessed to have had no serious health issues up to that point so I got a little annoyed here and there (selfish) in the beginning before I really got to understand what this is all about. I still get a bit aggravated and tired having to do almost everything by myself (housework, shopping, meals, keep track of the meds, & personal secretary keeping all this stuff straight)...but I'm lucky that I am healthy enough and can do it so I just have to keep telling myself to "knock it off" and just do it. What if I was sick too? Then we'd be in a real mess - so we are lucky in that regard.

I am not sure how you get your husband to the point of delving into this more to gain a better insight of what you are going through and better understanding of this unpredictable illness. If he would read this forum I am sure it would make it make more sense to him.

It is kind of normal to be a bit annoyed, selfish and aggravated when you go from living life with no real worries to an about face and spending almost every moment thinking and worrying about your spouse and what you can and cannot do as a couple. Planning things and having to cancel at the last minute or not making plans at all for fear you might not be able to follow through with it.

However the healthy person does have to take a step back and realize what the UC sufferer is going through too. My heart breaks for him and for everyone here suffering. So when you get those "good days" and the much sought after remissions you are all working towards... when you get them enjoy it.
My husband is at the end of one of his best weeks he has had in a long time. It has been a joy to see him feel and acting more like his old self. Not sure how long it will last - but while it's here we're enjoying it.

Good luck trying to get this all sorted out and getting your husband to try to gain a better understanding.
Posted 9/16/2007 11:10 AM (GMT 0)

Hi Redplum

Long term illnesses are a minefield to alot of people.  I was diagnosed with UC back in February 07.  I am 46, female and live in England.

I have been with my partner for 3 years now and we have lived together for 2 years.  He is extremely supportive but sometimes i worry because i think the illness may drive him mad.  Because we are only 3 yrs into the relationship, i worry about how he will feel about me if the illness gets worse as i feel tired and achy most of the time with this illness and sometimes i feel so tired, i just want to curl up in a ball and fall asleep, at any time of the day.

We have a new mortgage and so i need to work all day, but he helps out with housework and does all the ironing which helps me so much.  Sometimes though, i feel he should not have to live with the pressure of me being ill, and always complaining about things and worrying about my health.

He is a very good man, one of the best, but alot of people find it difficult to deal with, or understand other peoples illnesses and some will react differently.  I guess alot of people think their lives will change drastically if they live with someone who has a disease such as UC. 

I hope your partner learns a little more about your illness and tries to help you through this. 

Posted 9/27/2007 5:52 AM (GMT 0)
Hi red plum,
How have things been going the last couple of weeks with your husband? I hope some of the messages on this forum have helped you -I think the people here are so genuinely caring and understanding!
My husband and I have been married for 20 yrs. and we have 2 teenage boys. His "support" of my ongoing illnesses (I also have Type 2 diabetes) is on/off. Sometimes I think one of the reasons he doesn't take my diseases seriously is that so far, nothing has completely debilitated me to the point of seeming extremely ill - meaning, I continue to work, tend to the household chores, the grocery shopping and cooking, looking after the family, etc. You know how a mom's job is 24/7! I am grateful that I am feeling well enough to live life mostly normally, but I think my hubby can then kind of forget that I still have these ongoing health issues! Heck, I take 20 pills a day!
Anyway, I'm rambling now because I'm tired and should go to bed! :0)
But I just wanted to say that I DO understand and know how you feel - my marriage has truly been a roller coaster of ups and downs!
Feel free to vent here any time!

BIG HUGS,

Stacey
dx w/UC (pancolitis) March '06
Colazal 750 mg x 9 capsules daily
FINISHED the Prednisone 9/24 - finally, after 3 mos.
started 6-MP 8/13/07 (50 mg. daily)
Probiotics (Primadophilus Reuteri)
dx w/Type 2 Diabetes Nov. 2002
Glipizide 5mg. x 2 daily,Caduet 5/10 mg. daily, Micardis 80 mg. daily, multivitamin + calcium daily and one baby aspirin
Posted 9/27/2007 2:17 PM (GMT 0)
If you've tried professional counseling twice and nothing's changed, you may have to accept the situation for what it is. Some folks just aren't capable of a deeply caring and supportive relationship. When I was first diagnosed and was desperately ill, my ex would poke his head in the bedroom and say, "Can I get you anything? No? Well, I'll be in the den watching T.V." That was about the extent of it. He was off at the race track the first time I had to be taken to the ER. My family was shocked and upset at the condition I was in. After I got out of the hospital, I stayed with my parents for several weeks because my husband wasn't willing or able to take care of me and our house was a disaster since I was unable to clean. He tried in little ways to help out, but he was basically a self-absorbed person and felt my care wasn't his responsibility. The things that helped the situation were drawing on assistance and support from family and friends AND we agreed to hire a cleaning service to come in every other week to handle the basic housecleaning chores.

Oddly enough, we managed to get through that time of crisis, but ended up splitting up a couple of years later when my health had returned and I was in better physical shape than I'd ever been. In our case, regardless of the circumstances, I believe he just really didn't care to be married with all the hard work and commitment a successful marriage requires... even during the best of times.
Posted 9/27/2007 2:35 PM (GMT 0)
in addition to my post up top........I just posted, that I snapped at my husband last night for basically not showing me that he cared enough. I thought he knew that every time I was in the bathroom at night it was b/c of my colitis and 'not just to check myself out' (I said that to him, along with what do you think I am doing in there). I had been telling him yes, I am sick but don't worry about it.....that is my fault. So I explained everything to him (besides the enemas, yes I know it's stupid to keep that to myself but I don't want him picturing it....I know, I know) that I have been going to the bathroom 15 times a day, waking up in the middle of the night and how much blood I am losing and that dealing w/the kidney stuff on top of everything. I agreed to tell him more and he agreed to ask me more questions about how I am doing.

I think it is always going to be something we'll need to keep working on, I need to hit him over the head and he needs to do it. I guess as long as we have that covered, we'll be ok.
Posted 9/27/2007 7:34 PM (GMT 0)
Hi everyone,

My husband and I have been doing a little better. He asks how I am doing and gives a hug here and there. However, I must say that I am feeling a little better since the last week and my mood is better. He is always nicer when I feel better, but when I am at my worst that is when he just fails. Possibly, when I flare next time I willl have to be up front and tell him straight out that I not doing well and am depressed. This way he may show more concern. We will see. It is definitely something to keep working on.

Beth 75, I am so sorry that you got minimal change disease. It from the 5 asa drugs? I was diagnosed with UC when I was 18. I was put on Azulfidine, and got Minimal change disease myself. I took prednisone for 10 weeks to reverse the condition. I hope you get better soon. As for your husband, I think being honest is important--about meds and emotional feelings. I am just learning this myself.

Regards to everyone,

redplum
Posted 9/28/2007 4:05 AM (GMT 0)
redplum - Glad to hear that you're feeling a bit better! I find when my mood is really bad that my husband feels he's done something wrong and gets upset and defensive himself. I do the same when he's crabby. Kind of a vicious circle :(

beth - I don't mention the enemas to my hubby either. I mean -yuck! I don't like to "think" about it. I just don't think he'd appreciate that visualization!

Wishing well to everyone!
Posted 9/28/2007 5:32 AM (GMT 0)
If I didn't help administer the colocourt he wouldn't even be doing them....he tried the first time and it was a problem and a mess and very frustrating especially due to the hemmies. He lays on his left side and even though sometimes it is uncomfortable it would be a lot worse if I didn't help out. It allows for a more even steady flow as I am trying to make sure to maintain an even pressure and expel as much air as possible before inserting.

Thankfully several here really stressed and recommended the enemas. When he started them June 26th, by July 2nd he was able to leave the house for short periods and started to get a bit of his social life back. Those enemas were a big turning point in making life a bit more bearable. Basically every other night now although sometimes he might skip two nights the most.

I guess when you get as old as we are and been together as long as we have and been through as much we have this particular aspect is not that difficult. If we were a lot younger I am sure it might be more uncomfortable and the modesty issue would be more of a problem. To be honest it does make me closer to the situation and more understanding of it.
Posted 9/28/2007 6:34 AM (GMT 0)
I'm sorry your husband is not being supportive.  My husband is very understanding and shows concern but I do feel that it's hard for anyone (including parents, siblings and children) to fully understand what we go through.  My mum is probably the worst.  She means well but she really has no idea about what this disease is.  Recently she brought me a pamphlet about irritable bowel sydnrome!!  See, she means well but just doesn't understand the difference between these conditions.  Anyway good luck.  Look after yourself and if your husband won't put you first, then make sure you put yourself first.
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