I'm the spouse hence the user name!

Hello everyone! My husband has Crohns. To be absolutely honest I don't know who has my sympathy, the patients or the spouses. My hubby was diagnosed in 1998. The only way they diagnosed him was by splitting him open. He had 2 feet of his small intestine and 1/3 of his colon. I know he suffers but so do I. I met him in 2004 and we have been together ever since. He was honest about all the bad and I try my best not to complain about it but when I'm laying in bed and the green fog comes rolling through, man, its rough. :stinks: He, I have to say is lucky though. He just has to watch what he eats and doesn't take meds everyday. His doctors say he is the healthiest Crohns patient they have. After we got together he went from 165 to 215 in a year. His doc was stunned. They told him he would never gain more than 5 or 10 pounds from what he weighed after his surgery. Just goes to show all docs aren't right. We've had one hospital visit for four days in the 6 years we've been together. That wasn't bad but after he got out he was taking Prednisone and OMG!!!!!!! We almost divorced. He was the meanest BEEEEP you can imagine. The kids would go hide when he got home. It got to the point he would call and say he was coming home and we would leave until he went to bed. We went through that for 2 1/2 months. I hate to say it but I told him that if he ever had to go back in the hospital ever again that I was moving out for 3 months. It was absolutely horrifying!!!! I love him but I can't ever go through that again and the kids sure can't. I guess it doesn't help that he had severe asthma when he was born and the docs kept him dosed with steroids for the better part of the first 3 years of his life. I don't really know if anybody else has had that problem with the steroids but the doc told me that it does that to some people and it doesn't help that he took them so much as a child. Who knows sometimes I think the docs will tell you anything just cause it sounds good to them.
I watch what I cook and make sure we don't eat things in front of him that he can't eat. (Like popcorn) I love him to death but sometimes, I just want to tell him to put a cork in it!!!!
So that's my life with Crohns.
(Hope I didn't upset anyone because that surely not what I intended.)

Welcome to the forum Can I, I am a crohn's survivor. I know what it's like to drive a loved one crazy. I see it in my husband's face all the time when I have to go to the hospital for surgery or an obstruction.

I have a question for you, have you told the GI that your husband isn't taking his medications as he's suppose to? That can be causing problems down the road and he needs to be compliant especially if he is on steroids. You can't stop taking it one day and then be on them the next as it messes with the thyroid. He can get very very sick big time. Also, most GIs now are switching to Entocort b/c it has next to no side effects like prednisone. It is a steroid but it doesn't get absorbed into the blood stream at all. It goes right to the inflamed area and does its work. Ask the GI if your husband is a candidate for it. I was on steroids for 13 yrs. and my GI was able to switch me over b/c of the long term side effects prednisone has such as glaucoma, osteoporsis, mood swings, etc. I've been on Entocort for several yrs. now w/no side effects at all.

As for his asthma, is he a candidate for any of the newer treatments out there? My heart goes out to you and your kids. I've been a terror at times when I was a kid w/my folks and when I was first married but my husband has been my rock & while we were dating, wanted to educate himself on IBD and ostomies so he attended the local CCFA and ostomy support group meetings. It came in handy a few times when I needed to go to the ER. He did really well & not once did he say he'd leave me. Knowledge is power.

Have you looked into finding a local Crohn's & Colitis Foundation chapter near you so you can meet other family members to swap stories and lean on each other for support?? Our local chapter encourages it for our members. Go to ccfa.org and then click on locate a chapter. Hang in there and know that you are not alone.

Upsetting? Ha -- what a sense of humour you're showing! I wouldn't want to share a bed with me some nights, is all I have to say about the matter.

Although young, I went through a breakup with my first love while on prednisone in high school. I actually forgot about how crazy I was while I was on it until I read this post.. and (while not trying to make light of your situation- I laughed).

Back to the point, the prednisone caused for his anger 100%, I thought I was just immature (being 19 when I took it then), but I honestly couldn't even begin to describe the rage I felt inside.

On a different note, I completely understand where you're coming from, I do apologize in advance when I speak boldly, but from what I gather, they may be other difficulties that have been building over the years.

I understand that you probably feel like he uses it too much as a cop-out on a lot of issues, and a lot of people do. Especially because people who have IBD fake it out in the real world. As sad as it sounds, they take it out on loved ones because they're the only ones who can understand. It's draining for a spouse to constantly pick up the slack when you feel like your partner, who's supposed to be there, physically can't be. I would speculate that it, in turn, makes you feel guilty for being so harsh, knowing it's a serious problem for him to deal with, day in and day out. That guilt only distances the both of you because you no longer want to deal with it.

If it were me, I would accumulate advice of other people on this forum (all seem like great people) and instead of looking for outside explanations, TELL HIM HOW YOU FEEL, because if you just work on yourself and DEALING with the situation, you'll eventually break.

Again, I apologize if I crossed any lines... I meant no disrespect and wish you only the best!

hi there thanks for joining us, and being honest enough to share how you're really feeling about this, it can't have been easy.

it's a difficult call.. not only have you the 'normal' worry of loving & having to watch someone cope with Crohn's, you also have the fear of losing your marriage over it. i wonder if your hubby has really opened up to you about just what he went through before diagnosis and surgery..? my fiance and i have only been together a few years, and although we were friends before that, and knew i had something called Crohn's, he didn't really understand the physical and emotional roller coaster i'd been on since late childhood, and the impact it had on me then, and still does to some extent.. for the sake of our new relationship when it was starting, i was determined he knew everything - i admit i told him the worst bits on msn because i was afraid to see anything negative in his face - but i told him everything, and later i let him read my life story, which contains all the heart-wrenching emotional and surgical pain i have been through. he needed to see what goes to make the 'me' i am now.

maybe your hubby has spared you some of the background, either because he doesn't want to relive it, or perhaps he wants to spare you the horror stories, but my take on things is that sharing & talking is the only way to achieve real closeness and partnership in a relationship.

re the pred and the massive mood changes - did you ever go with him to his GI appointments and make sure that his GI knows exactly how pred affected him, and you and your kids? it must be awful for you to live in fear of his Crohn's leading to a further episode of this - i do understand where you're coming from - and as you'll already know, Crohn's can occasionally put us in hospital and require a change of meds, particularly if there's a flare going on..

hopefully, if his health care providers know of his previous reactions, they'd find something else to treat him with, that wouldn't have the emotional impact that pred did.

Thanks for the reply. He doesn't go on and off his meds. Like I said he has had one obstruction in the 6 years we have been together. He went in the hospital and came out on the steriods and asacol. (i think thats how u spell it, I have all of it writen down in my purse and on my cell in case of an E. R. trip) There is one med for treatment that he is allergic to. (I have that written down too!) As for his asthma he doesn't have very many problems out of it. His last attack was when he was 13, 24 years ago. He has a preventor and a rescue inhaler that he uses if needed. I've seen him use them very few times. As for the leaving him, I think you misunderstood what I was saying. I would never leave him in a time of need but when he was on Prednisone our kids and I went through hell everyday and I won't put them back through that. the fact that he went to work and worked all day and had to maintain his temper or lose his job just made it worse on the home front. He would come home and take all that built up out on us. I know he couldn't help and God knows i love him but there is only so much you can take before it will break you down. After he got down to the last two weeks of the weaning process he started to clam down and return to his normal self again. It is just the high doses that he received in the hospital and the high doses he had to take for after he was released that really fired him up.

idon2738 said:

Although young, I went through a breakup with my first love while on prednisone in high school. I actually forgot about how crazy I was while I was on it until I read this post.. and (while not trying to make light of your situation- I laughed).

Back to the point, the prednisone caused for his anger 100%, I thought I was just immature (being 19 when I took it then), but I honestly couldn't even begin to describe the rage I felt inside.

On a different note, I completely understand where you're coming from, I do apologize in advance when I speak boldly, but from what I gather, they may be other difficulties that have been building over the years.

I understand that you probably feel like he uses it too much as a cop-out on a lot of issues, and a lot of people do. Especially because people who have IBD fake it out in the real world. As sad as it sounds, they take it out on loved ones because they're the only ones who can understand. It's draining for a spouse to constantly pick up the slack when you feel like your partner, who's supposed to be there, physically can't be. I would speculate that it, in turn, makes you feel guilty for being so harsh, knowing it's a serious problem for him to deal with, day in and day out. That guilt only distances the both of you because you no longer want to deal with it.

If it were me, I would accumulate advice of other people on this forum (all seem like great people) and instead of looking for outside explanations, TELL HIM HOW YOU FEEL, because if you just work on yourself and DEALING with the situation, you'll eventually break.

Again, I apologize if I crossed any lines... I meant no disrespect and wish you only the best!

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Please feel free to speak as boldly as you want. I have to give him alot of credit. He doesn't use his Crohn's as a cop out like alot of people do. He gets up everyday and works anywhere from 10-20 hours a day in the heat, cold, rain and snow. In six years he has missed 9 or 10 days of work. 6 were from the hospital stay and a couple from stomach viruses. He actually uses alot of his sick time when has doc appts. or vacation. He can roll his vacation days over but not his sick days so he uses those instead of vacation time.
We talk about everything. Including the Crohn's. I attend all his appts. so I can ask any questions I have for the doc. It does take a toll on your marrige though. I get tired of the gas, the smell and rushing home because he has to go. (NOW) But instead of getting stressed by it we joke about it. (And yes we have dicussed that too because I would never say anything that would hurt him) Although its NOT a laughing matter that is what works best for both of us. I tell him he needs to go back to the doc and tell them to put his insides back in and remove the dead animal and he tells my to well, I won't post that on here. LOL He got really depressed after his diagnosses and sugery and finally made a decissin that this was not going to get him down. He would rather laugh than cry and waste his life and let Crohns take him down. Then the divorce came from his 1st marriage. Yes, we can all say it. Through sickness and health didn't mean much to her. He got down again then he got over that and well now he is stuck with me. No matter how bad it get I may have to move out for a few months but that is mainly for the kids sake, and well my sanity, but other than that I'm not going anywhere.

canisurvive said:

Then the divorce came from his 1st marriage. Yes, we can all say it. Through sickness and health didn't mean much to her..

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i can completely empathise with this, my ex was as understanding as a house brick.

He got down again then he got over that and well now he is stuck with me.

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sounds like he is very lucky to be stuck with you

dingbat said:

hi there thanks for joining us, and being honest enough to share how you're really feeling about this, it can't have been easy.

it's a difficult call.. not only have you the 'normal' worry of loving & having to watch someone cope with Crohn's, you also have the fear of losing your marriage over it. i wonder if your hubby has really opened up to you about just what he went through before diagnosis and surgery..? my fiance and i have only been together a few years, and although we were friends before that, and knew i had something called Crohn's, he didn't really understand the physical and emotional roller coaster i'd been on since late childhood, and the impact it had on me then, and still does to some extent.. for the sake of our new relationship when it was starting, i was determined he knew everything - i admit i told him the worst bits on msn because i was afraid to see anything negative in his face - but i told him everything, and later i let him read my life story, which contains all the heart-wrenching emotional and surgical pain i have been through. he needed to see what goes to make the 'me' i am now.

maybe your hubby has spared you some of the background, either because he doesn't want to relive it, or perhaps he wants to spare you the horror stories, but my take on things is that sharing & talking is the only way to achieve real closeness and partnership in a relationship.

re the pred and the massive mood changes - did you ever go with him to his GI appointments and make sure that his GI knows exactly how pred affected him, and you and your kids? it must be awful for you to live in fear of his Crohn's leading to a further episode of this - i do understand where you're coming from - and as you'll already know, Crohn's can occasionally put us in hospital and require a change of meds, particularly if there's a flare going on..

hopefully, if his health care providers know of his previous reactions, they'd find something else to treat him with, that wouldn't have the emotional impact that pred did.

Click to expand...

Spare the detail. Nope, not in his nature. I know about the week of torturous pain before he went in to have his appendix removed and came out with Crohns and missing more parts than what was supposed to be gone. I know of all the times his mom dad and wife (now ex) had to pick him up out of the floor and carry him back to the hospital because he was in such pain he couldn't even stand up. I know everything from day 1 to the present. I myself picked him up the last time, and picking up 215 lbs. off the floor of the garage was not an easy task and still to this day have no idea how in the world I did it. Stubborn butt wouldn't let me call 911. I got him to the hospital faster anyway's.
Luckily he hasn't had to take anymore steroids and his doc told him he needed to take the asacol but if he didn't want to he couldn't force him to just wean off of it like the prednisone. His doc has given him all the info on taking meds and not taking the meds. I can't make him take it and support his decision not to.
As for the Prednisone I think that crap should only be used with a script for a straight jacket, a gag ball, and a padded cell. I talked to his doctor about the rage he had and he noted it in his file so if there is a next time he won't give him that junk.

:emot-q:

dingbat said:

i can completely empathise with this, my ex was as understanding as a house brick.



sounds like he is very lucky to be stuck with you

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Thanks!!!:emot-q:

Hi canisurvive and :welcome:

I can understand what you are saying from a different perspective, that being as the parent of child with Crohn's. I also know from the perspective of my work that looking after or living with someone with a chronic illness is hard work. Many times you feel like you are walking on egg shells and when your defences go down and you crack, you feel as guilty as all hell for yelling at them! It really is one helluva an emotional roller coaster.

Also home becomes the comfort zone. The place they can do all those things they wouldn't dream of doing anywhere else, like work, school, the mall or the corner shop. They just get bottled up and BOOM when they come home!

And Ding's right, he is lucky to be stuck with you.

Welcome aboard!

Take care,
Dusty

Hey Can, I'm another caregiver. Welcome!! Yeah, what Ding said, he's lucky to have you. Best of luck and glad you're here!

Hi, my husband has a recent diagnosis of ulcerative colitis and I'm new to the board as well. Welcome!

:welcome:

Hiya!

xxx

Hi there!

I understand completely, my fiance is so understanding even when i'm being a completely unreasonable so and so XD...though if he were any more laid back he'd be horizontal.

I think it's nice that you do take an interest i've known quite a few people who don't really know what their partner has or how to cope. Sam has just started coming with me to my doctors appointments, I had been going alone but he insisted, he never complains about taking time off to get me to and from the hospital or getting my meds or taking over the household chores when i'm poorly.

Part of having this is the people who help you with it, I agree with Dingbat, he's lucky to have you Welcome to the forum!

Hi canisurvive,

God bless you and how you've navigated through these difficult times.

I'm not a psychoanalyst, but from the situations you've faced and spoken about, you've been hurt deeply, too by this disease - even though you don't have it. Thank you for deciding to learn more instead of turning away. And I'm not saying divorcing or turning away is a "bad" thing. It's something that happens, and sometimes people don't have the capacity to be the spouse of someone with a chronic debilitating disease having no cure. It's a very difficult thing to face head on, and I feel bad for spouses that leave, too. Because I know how diificult this disease has been on my girlfriend, but I also know how difficult it can be on me because I have the disease too.

I don't know if there are lots of people that use Crohn's as a "cop out". If you have Crohn's disease, it causes BIG physical AND emotional problems. In fact, I'd say having this disease is a "crisis", and it really can't be avoided and the symptoms can't really be postponed. People who "cop out" may well be suffering from the emotional distress this disease produces.

Over time, it wears you down physically and emotionally. It wears you down below the lowest places you ever had before the disease. It causes you shame, guilt, and fear like no other disease, including alcoholism.

You're feeling fine one bright summer morning, and you're walking out the kitchen door at the beginning of your trip into work. With no warning, suddenly you feel wetness on your backside. You rush back into your home, dropping your briefcase and throwing down your keys somewhere where you will totally forget. All the while your thinking, maybe out loud "Oh no! Oh no!" Even though you don't feel any pain, or the need to go to the bathroom. You pull down your pants and plop on the toilet. You discover that you just shit your pants.

You're 51 years old and the last time this happened was when you were 5. You look up in amazement with your ass on the toilet and wonder "What the hell?"

You gather your wits for a minute and pray to God that you have aother full work outfit that isn't in the dirty clothes basket. While you're showering AGAIN for the day, you remember that you forgot to call your supervisor telling him you'll be late. What will you tell him or her? (it's much worse if your supervisor is the opposite sex). You get cleaned up and redressed, call into work, then lose your frigging mind trying to find your lost keys.

That was a detailed account of a "day in the life". It happened to me, and I have only "Mild Crohn's". There probably isn't anyone here with the disease that hasn't had a simiar experience, or a story even more harrowing. When I got to work that day, I was so stressed and upset, I decided to hell with it, I'm telling my supervisor exactly what happened. His face nearly turned white, and he was visibly horrified. All he could do was "squirm" at his desk uncomfortably, and grunt "ugggh".

This disease will take away your will to live, if you allow it, and throw you into a state of depression like some giant "incredible Hulk" picking up a little kid and throwing him against the wall. It can hurt us so deep that you'll feel like ending your life, and some do. There probably isn't one of us with this disease who hasn't prayed to die because the symptoms have taken is down so harshly and hurt so bad - like what you described with your husband.

I don't know how "copping out" fits into the picture, but if you have Crohn's, you'll be having nightmares while you're awake.

But I understand how hard it is for you. What Sue (Dingbat) suggested is excellent advice. Go to the GI doctor with your husband, and let the GI know how harshly the side effects of prednisone have been on you and your children, and don;t be ashamed or afraid to cry about it in front of the GI and your husband. You've chosen to "stay in it" for the long haul, so you have every right to ask for your needs to be taken into consideration.

If your kids have to "run and hide" or if you're planning to send them away until your husband gets through the prednisone taper, still leaving you exposed to a man experiencing uncontrolled emotional "breakdowns", then something is wrong with this picture. You and your children don't deserve to be forced to endure and cope with this.

This hurts MY SOUL to read: "As for the Prednisone I think that crap should only be used with a script for a straight jacket, a gag ball, and a padded cell." That's because it is the truth that comes from within your heart, and it tells me how much emotional pain you've suffered. Nobody on this planet could ever "make up" a statement like that without having experinced a harrowing trauma with a loved one they thought they knew and understood. It sounds to me like you experienced a non-fiction re-enactment of "Dr. Jekell and Mr. Hyde".

My call on this is either Prednisone is not the best choice and/or the taper needs tighter control, or if Pred is the only choice, then the taper needs to happen in a controlled environment, such as a nursing center for a few days.

If you were my wife, I would rent a motel or cabin for a month or two, and taper off the drug pretty much in seclusion. I would set up an emergency savings account to do this. I would never want to put you and our children through such an experience again. Never.

What I'm saying is that something needs to change.

The other thing I'm saying is you've come to the right place, and you need to find healing and care to get through your emotional trauma that resulted from your husband's taper. And hopefully figure out ways to prevent a recurrance.

I'm sorry that this disease has been so harsh on you. You're a beautiful person with a heart of gold to "become stuck" to one of "us" who loves you, and you love him. Wow, that is such a blessing to see and feel.

You've done a great job of telling your story which is every bit as difficult as any one of our stories.

Welcome to the forum. I hope you find help here, because you sure have helped me today.

Joseph