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I don't know about yours, but I can tell my hubby is getting sick and tired of me being sick and tired. I try to not hyper focus on UC and the related health issues with him (he doesn't do yucky) but when I'm not feeling well it can be tough because I am living it 24/7.

How does everyone else handle this illness and relationships?

 Reply posted for LauraFloraDora.

Boy, can I relate. My Mother said  I  didn't eat right. This was in her genes. My in-laws thought I was putting on the Oscar winning preformance of a lifetime and my husband sat quietly in the corner letting everyone have their opinion offering no support. You couldn't talk potty talk because this was embarrasing. My husband and his family didn't do Drs. They just sucked it up and toughed it out. I was so sick one Christmas that I went home alone while he stayed at his Mothers house. The next day I was in the hospital and had my second re-section. Due to other reasons we divorced after 29 years and 4 years later he died at the old age of 57. So much for toughing it out. With medical care he could have been treated. Now 22 years later I'm gong to be 74 this month and looking forward to seeing some spring training games. I watch what I eat and take my meds like a good girl and always remember that I've got Crohns it doesn't have me.

 Reply posted for LauraFloraDora.

Besides UC I suffer from severe RA...I met my husband when I had the RA and he has stood by me and now with the UC I can't ask for a better husband. I was blessed with him he understands everything I go through everyday...He just wishes he can take all my pain away and make it vanish...I feel bad for him at times it seems as if he is in more pain than I am...he gives me my RA shots cause I can not  bring myself to self inject and he has been doing it for the past 5 years...I think it's wonderful when your husband and kids understand and support you through this disease.....

Talk to your husband and make him understand it wasn't your choice to get sick it just happened and that it would be nice for him to support you through it.....

Good Luck and God Bless!

 Reply posted for LauraFloraDora.

Sadly for me while i was learing that i had chrons my husband left me. He just did not want to listen to me on how bad i hurt. So i have moved on. Such is life. Now sadly i am trying my second med in the last 6 months and h ave not had any success thus far. I do lead an active life. I am in Boy Scouts and Cub Scouts, so this keeps me busy. But with finding someone else i want to spend my time with it does not seem important. I find it great that many people get support from there spouses with having chrons i was made to fill useless. Even though i was keeping up all my daily activities including school, taking care of his kids, because i choose not to have any and cleaning the house. OH well such is life. Now i have found pleasures of my own in life.

 Reply posted for MaryB.

Laura- You totally made me laugh...I totally get when you wrote...

Spouse/Significant Other QuestionI say go for the hot air balloon whenever you can! I did a few years ago and it was terrific. Very peaceful...

So, my husband came with me to the doctor. I think it was good for him to hear our conversation.  The doc even went to the chart and explained why my UC is difficult to get under control (my whole colon is diseased) and that this disease can make day to day life very difficult.  I have been leaving reading material around for him as well.   Since the visit he has been better about understanding...not great, but better.  It is hard for someone who does not have this disease to understand completely. I was reading Crohns and Colitis by Dr. H. S and there was a section that described your information gathering style.  It described Monitors and Blunters. I am a Monitor (I research, read and question to understand and get a handle on this disease and help me deal) and my husband is a Blunter (only wants info on a need to know basis). Makes sense to me...I have a brother with Crohns and a sister with Anklosing Spondilitis and bowel issues. They get it and never mind talking/listening about things. They GET it because they HAVE it.

Thanks for all the responses...happy holidays.

 Reply posted for LauraFloraDora.

hello

boy have you guys this right...problem is we don't look sick....people have no idea how dibilatiating this deasese is as far living your life goes.

Part of the problem might be that we hid it ..we try to carry on with life as if nothing is wrong. But the fact is this is our life...its there 24/7....I do nothing in my lfe witrhout considering my desease first.

Simple things in life like going to the store can be a trial. Getting to work in the morning... attending that meeting..it's not easy.

Theres lots of things that we just don't do because of it.....I've always wanted to go up in a hot air balloon...not likely..unless they have washrooms.

Its the little things in life ..the daily routine that become an adventure...its hard to enjoy life when in the back of your mind your thinking...is there anyone in that washroom..Am I suddenly going to have to go?

It all takes a very understanding spouce.....

 Reply posted for LauraFloraDora.

LOL!  Just barely made the mad dash myself twice in the last half hour.  I am so glad that my husband does not mind the poop talk that much.  Although I know he tires of it if I say too much too often.
My husband didnt believe me when I used to tell him about the pain, bleeding, constipation, diareah etc.  The dr shrugged and so did he, my sister, and my MIL and my friends.  However, when I ended up in the hospital for three weeks he was contrite.  His mom told me that he felt very guilty for not believing me.  He was very supportive in the hospital.  I had been taken to a facility four hours away for better treatment and we were isolated from family.  It was a miserable time for him as well as me.  His brothers are his friends, but they aren't a talkative bunch and he was very much alone.
I have been sick with other things that were'nt constant; like when I had bad case of mastitis when our son was 3 months.  I fainted and he was cussing and upset.  I realize that he was scared.  I think men show it differently than women. 
When I am on the verge of or in a flare that can last months at a time, I feel inadequit because I havent the stamina to do all the things that I normally do.  I am not earning my keep.  But i know that is just me talking because as long as I do what I can and prioritize, he's happy with me.
My husband has been a type 1 diabetic since he was 9 years old.  If anyone has taught me that dealing with a long term illness doesn't have to be the focus of your life, it's him.

 Reply posted for LauraFloraDora.

It is a hard thing to bear alone. And, really no one "gets" it, unless they have it. Plus, it IS pretty disgusting--- and infantile;  "Hi honey, great day, just crapped my pants". *sigh* 
  I am just grateful that most of my "problems" are in the morning. I get up at 4:45 am, and by 9 or so, I am functioning.  I don't think my spouse could understand why I can't make it to the bathroom in time.. don't know about you all out there, but if there is the slightest warning, I KNOW I have to make the mad dash. 

On the plus side, I had two very good days this week---normal stool, and only 4 trips to bathroom..... who else wants to hear this stuff??? It is a lonely business. Today wasn't as good, but I am hopeful.

 Reply posted for LauraFloraDora.

I've had the same thoughts for years, if only I had a broken arm, people could understand more.  I finially realized they can't understand, unless they have been there.  When possible my husband goes with me to appointments and its very helpful.  He's pointed out a few times that I need show a little more drama so the doc can know how bad the pain is.  Imagine a man saying "more drama" lol. Hope it works for you. Its very difficult for our loved ones to see us in so much pain or not able to go places because of bad diarrhea,etc.  I like to think of the good things, it has made me very merciful to others.

 Reply posted for cc21ps36.

Thanks for the response.  I think I will have him come with me to the doctor next time I go.  It's a good idea. The hardest part about this disease is that you can't "see it".  If I had a broken arm or was in a wheelchair, etc. I think people would fall over themselves to be understanding and helpful.  Maybe I should invite him into the restroom with me LOL. Maybe not... ;)

Glad to hear you're in remission. Stay well.

 Reply posted for LauraFloraDora.

I am 32 and have had Crohn's since I was 14.  Have had surgeries to remove my disease a few times (total colectomy at 19) as I have fitulizing Crohn's and no medicines seem to control it when it flares.  During my last flare, it was my wifes first time really dealing with my disease, as until this time since we had been together it had been dormant.  I had some days when it was hard to move and just was enough to get out of bed and into the shower.  My wife just didn't understand why I didn't want to go out at night, or stay out if we did go out.  She also would ask if I wanted to go for a walk, and when I replied no, she would get upset.  There were certain times when it felt like she thought I was making up the pain.  This all changed when she went with me to the surgeon in prep of my surgery.  The nurse explained to her how much pain Crohn's/UC patients experienced.  For whatever reason, after hearing this she became more understanding.  Thankfully that's been 3 years ago and I've not had another flare since, so I cannot judge if she will be so understanding if I have any more instances.  But, I guess I would suggest to have your husband read the stories on this board or talk to the doctors and nurses himself to understand that as hard as it may seem to him, he has no idea what these diseases do to the people living with them both physically and mentally.  Good luck to you as I know if you don't have the good support, it only makes things more difficult.