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Posted 1/22/2014 10:41 PM (GMT 0)
I just got married to my husband in July 2013, We've been friends since 2005, he was diagnosed with Crohn's in 2007, I moved out of state in 2011 and we started dating in 2012... Now that the time lines out there.

Our entire dating relationship was long distance. I tried to read up on Crohn's and UC as much as possible while we were dating to better understand why he didn't even have the energy to talk to me on the phone some nights or was feeling sick etc. I thought I was ready for living together... I feel like I prepared myself for the physical changes but I was not prepared for the emotional strain. We've fought A LOT. I've cried A LOT. I keep hoping that maybe it's because we're still newly married and it's just growing pains of learning to live with each other but I feel like it's so much more than that. My husband feels like a burden to me at times and is beginning to say that he's not "designed" any more for relationships, I'm beginning to question if I can be laid back/independent enough to let things roll off me when he can't help me.

Any other stories/examples or advice for marriage with chronic illness?

Posted 1/22/2014 11:20 PM (GMT 0)
From your username, are you a Jessica as well? My wife's name is Jessica. Either way, sounds somewhat similar to me. Though I moved to where my wife wanted to be at the time (this was before we got engaged, even... we moved in together at that time... July 2011), so I could be closer to her (not to mention they have a research/academic hospital that has an outstanding gastroenterology department... that also was part of my decison).

Anyway, we got married last June. We have had some fights regarding my health. It has been really hard on her to try to understand how one minute I can be fine, the next I am feeling like junk, need to rest, etc. We still occasionally have issues regarding that... though it has gotten better. I have gotten more vocal with her about how I am feeling everyday, and try to predict if I am going to have a bad night or not. While I can't always do that... it has helped her "prepare" herself to know how the night would go after work.

I do often feel like a burden, like I am holding her back, because of this disease. She has also learned to go with the flow, help me feel better about things, and such. We are each other's support system. She has been through 3 hospitalizations with me.... a surgery that I had two weeks ago... but it has taken a lot to get to the point where our arguing has stopped and we have learned more about how to handle each other's moods. And please do realize... we have lived together for 2 1/2 years now.... and it has taken that long for us to get to this point.

So my advice... you need to prop him up, make him feel like he isn't a burden. Try to explain to him if there is anything that can be done to help yourself out mentally, that he could do on his end. And maybe ask if there is anything you could do. I know it is a hard thing... and with this disease, it is truthfully stressful. But just stay strong, and work at it. Things will get better... they definitely have in our marriage.
Posted 1/22/2014 11:46 PM (GMT 0)
My long-term BF prefers to know when I am feeling bad, so he can be prepared, especially if it is going to be a bad night. On nights I know I am going to be up and down, I sleep on the couch.

I am pretty open about bathroom issues.
Posted 1/23/2014 12:19 AM (GMT 0)
I have been married now for 17 happy years to a man I have known for about 21 years. We have 3 children age 12, 15 & 19. One of our first dates was with him visiting me in hospital to cheer me up when all I could do at the time was throw up - only he was the one holding the bucket! He stuck around as has always been attentive to my disease and to my needs and has learnt as much as possible along the way. We have moved all around the world various times and he has never treated me like I was incapable of anything. He has been my strength and my rock.

In moving from England to Canada I suffered a bad relapse within the first 3 months and had no Insurance coverage but he never complained he just went with the flow. When we moved from Canada to the States I was even more concerned with medical costs but we have been very very lucky in that his job has brilliant medical coverage which has helped tremendously to ease the burden. I say this because I too felt like a burden as he always found me the best GI dr.s and the treatment I have received I cannot fault. But he is tied to his job because of me. I can't change because he knows its my lifeline but he never holds it against me.

He understands when I need to sleep even if its during the day he comes to my appointments with me and on first name terms with my GI Dr!

The reason I felt the need to tell you my story is because we are a union and made our vows and if it had been the other way around (he has his own health issues too but not as bad) I wouldn't hesitate to take care of him either. No-one knows what life will throw at us all we can do is the best we can with the knowledge we have.

Its possible he could be depressed and from a mans perspective that can be something he doesn't want to admit too but maybe you could help him open up and this site is just brilliant with information on Crohns. I don't write many replays i just like to listen to what people have to say and put out there but I really hope you can work through this and that the situation gets better for you.

Best of luck
Posted 1/23/2014 1:49 AM (GMT 0)
My advice is to hang in there and work it out. Talk as much as you can and don't let things build up. Let him know that he is NOT a burden and never will be. You are in this together and you will have to work together to succeed. It's not always going to be easy.

I began dating my now husband a couple months after experiencing the most sick time of my life with this Crohn's. I hid it at first but I was beginning to get so sick that I couldn't hide it anymore. I looked like a ghost from blood loss. I finally told him what was going on and gave him the chance to walk out. He didn't.

Anyway, since then, I've been upfront in when I will likely feel sick or when I know something is coming on. I am a major planner but if I feel good we make sure to take advantage of that ASAP and get out and do whatever it is we want to. That way if I feel bad the next day I won't feel like we lost time or missed an opportunity.

Just let him know you are there for him. Let him know that it's important for him to feel good and get better so you two can have some fun doing what makes you both happy.

Maybe try to identify the source of the fights. For example, I know I get mad/jealous of my husband and how he can just go anywhere and do anything without worrying if he's going to feel sick later or be anxious and then have to go to the bathroom. After a while of always watching someone do the simple things in life, like go to the grocery store, and it takes me so much more energy to get out of bed, shower, and get dressed, it just wears on a person.

Your husband may benefit from something like this forum too, or just someone else to talk to.
Posted 1/23/2014 12:42 PM (GMT 0)
Hi there. Looks like a few posters said "let him know he's not a burden" etc. but from your viewpoint I'm thinking you're saying to you he is at times. I get it. I've had cd for 25 years. Been married for 10 to my wife who I met in college almost 10 years before that. So we've been together almost 20 years. I did not tell her about cd for prob the 1st 8 or so. I hid it really well. Don't ask how thSts a whole other story! We fight a lot. I admit it and I know that my illness stresses her out immensely! I do all I can to not let cd interfere with life but yeah right we all know how that goes. I don't tell her the half of it when I'm not feeling well. I suck it up and deal. I'd just rather not burden her more. But that's me. She's scared and doesn't know what the future will hold. She loves me. I know that but I know that waiting 1/2 hour for me to poop right after I hurry her and my daughter up to head out the door has to be rediculously frustrating! So I guess my point is its ok to get frustrated or mad about your husbands cd. It takes a very strong person to live with chronic illness but I think it takes a person who is just as strong to live with and support someone with a disease like crohns! I feel like crap when my wife wants to go out or do something and I just can't. I hate driving in 2 cars to do things bc I was on the can for 3o minutes or I needed a car in case I had to bolt. My wife must be so frustrated when I don't feel well enough to take my daughter to an event or horseback riding cause my gut feels funky and I know there's no bathroom there. But well make it together. I know that. Just remember its ok for to get frustrated even mad. But the key Is to talk. Let each other know how you feel. But do it civilly. If he knows how you feel maybe he can go things to help mitigate it. When you know he's feeling bad maybe there's things you can do to make him feel better so he's back on his feet quicker and your frustrations go away. Communication is key and this is from someone who's spouse is a horrible communicator. Haha. Seriously it's tough. But talk. Make jokes out of the long bathroom trips. But don't let it build up. Then things will just get nasty when the fam breaks. Good luck.
Posted 1/23/2014 2:44 PM (GMT 0)
mtgman... you know... you mention the "make joke" thing.... I cannot agree with you more! My disease is a constant laugh between my wife and I... and I like it that way. She understands those 30 min bathroom times, the "smells" that sometimes come from me. Heck, sometimes I receive Facebook messages (my smartphone comes in handy for bathroom breaks!) from her that shows a sour type face from the smells... or sometimes there is a cat in a litter box... or now Facebook lets you make a pile of poop, and we send that stuff back and forth while I am in the bathroom. I have grown up joking about it to help make things better, and luckily my wife and I have a similar sense of humor that we can do that as well.

I know it may sound a little twisted the way we do that, but it does make me feel better, and I think she can have a laugh about it as well.
Posted 1/23/2014 3:34 PM (GMT 0)
My husband and I have been married two years, 1 year after I was diagnosed. In the first year I was hospitalized 14 times. Then I got pregnant and had a baby in July, and in the last 3 months hospitalized 5 times so he has to take care of me and a 6 month old while working. It's hard. I wrote a blog post about it, which I'll post here because I'm exhausted and not up to writing a long response (just got out of hospital).

teachertiffanylindsey.blogspot.com/2013/12/living-with-chronic-condition.html
Posted 1/23/2014 6:00 PM (GMT 0)
Thank you all for your input. Mtgman. I feel like Steve my husband is a like you in that I can tell he "sucks it up" even when he's not up for it. He really in a remarkable guy very patient, compassionate hard working. I am a very social person. If I could be surrounded by people 6 days out of the week I would be. Steve used to be much more social and outgoing but CD has brought on a lot on insecurities. Because our entire dating and engaged experience was long distance I hadn't really realized how much that part of him had changed. I can tell when we're at parties or go out to lunch after church he uses all the "social energy" he has. I've turned down a lot of opportunities to spend time with others to be with Steve because I don't want to leave him alone, but then I end up complaining about it which makes things less enjoyable.

Is it wrong to leave him to hang out with others? I fear doing that too often will separate our lives too much. I don't know.

We had an argument yesterday. Usually I don't shower at home to avoid fighting for bathroom time and just shower at the gym. I had to shower yesterday before work so I set my alarm for 5am to try to get in before Steve. He had a total colectomy in 2007 and usually has to get up at night for the bathroom. He must have woken up just before me so I waited... and waited. 40 mins in I knock and he finishes up 5 minutes later. I'm runninglate at this point and once I change and dry my hair its getting close to time to leave. Most mornings while Steve is showering I make breakfast for us. That morning was an exception. I guess I had hoped maybe he would return the favor maybe pour me a bowl of cereal or cook some eggs since I was running behind (on account of him) but he was just sitting at the table playing on his tablet... I was so annoyed. I said "ya know I did you're laundry and cleaned out the bathroom closet (he keeps a lot of his soiled pants/underwear in the bathroom closet hamper) and make you breakfast and you can't get anything ready for me?" He responded "so it's like I owe you something I didn't ask you to do that" I don't remember what I said as I left the house. I admit I over reacted. It was a build up of a lot of those feelings feeling like I try so hard to do things to make life easier for both of us. Doing things without him having to ask. I run out of motivation when I can't even get a simple favor returned. We ended up arguing.more that night.

I know I can't be mad at him for being sick so sometimes I use other (very petty) reasons to use as an outlet for my frustrations. Whatever it is we're doing obviously isn't working very well... I've been trying to schedule an appointment with a counsel that works with CD patients for me to talk to. I dont know how much that will help but maybe it can at least be a starting point.
Posted 1/23/2014 6:03 PM (GMT 0)

JakeB said...
mtgman... you know... you mention the "make joke" thing.... I cannot agree with you more! My disease is a constant laugh between my wife and I... and I like it that way. She understands those 30 min bathroom times, the "smells" that sometimes come from me. Heck, sometimes I receive Facebook messages (my smartphone comes in handy for bathroom breaks!) from her that shows a sour type face from the smells... or sometimes there is a cat in a litter box... or now Facebook lets you make a pile of poop, and we send that stuff back and forth while I am in the bathroom. I have grown up joking about it to help make things better, and luckily my wife and I have a similar sense of humor that we can do that as well.

I know it may sound a little twisted the way we do that, but it does make me feel better, and I think she can have a laugh about it as well.

I wish Steve could laugh about it more. I've tried to make jokes from time to time but he seems less than am used. Maybe I should try the Facebook avatars too haha
Posted 1/24/2014 1:23 AM (GMT 0)
He had a total colectomy in 2007

Sorry, but can I ask if Steve has an ileostomy?

If not, then what does he have now? Is he in remission? Hope the questions aren't intrusive, but I had a total colectomy done last February and have an ileostomy. I hate it. It's the final insult to this humiliating and crappy disease, as far I am concerned - don't have a single positive feeling about it.

No, I don't have a spouse. Probably not surprising, really.
Posted 1/24/2014 6:21 PM (GMT 0)

NiceCupOfTea said...
He had a total colectomy in 2007

Sorry, but can I ask if Steve has an ileostomy?

If not, then what does he have now? Is he in remission? Hope the questions aren't intrusive, but I had a total colectomy done last February and have an ileostomy. I hate it. It's the final insult to this humiliating and crappy disease, as far I am concerned - don't have a single positive feeling about it.

No, I don't have a spouse. Probably not surprising, really.


He did have an ileostomy between his surgeries before the total colectomy. Now he has a J-Pouch which he says he way prefers. He still had active inflammation and ulcers when he had scoping done in October. At the time he wasn't in any medicine though and about a year prior had stopped taking Remicade which made him feel like crap. In November he started Humira and has fewer side effects. He also has a Seton that's been in place for a few years but our new doctor has said that shouldn't be used as a long term fix. Its crazy how much I've learned in the last 6 months... I would have not been able to answer that question 7 months ago haha
Posted 1/24/2014 11:32 PM (GMT 0)
I don't come across many Crohn's folks who've had a colectomy and, of those who do, most end up with a permanent ileostomy. So I hope you don't mind if I ask a few more questions.

How many BMs a day does Steve has? What would make him give up on the j-pouch and go back to having an ileostomy? It already sounds like he's struggling quite a lot with his disease, tbh - is what he has now really better than what he had with an ileostomy?

I do have an ulterior motive in mind: I want a reversal. But I also know that a reversal will mean basically living with Crohn's again, much like your husband is doing, and I'm trying to decide if it's worth it or not.

Sorry about this. If you want, email me, so this thread doesn't get any more derailed... :-/
Posted 1/25/2014 9:23 PM (GMT 0)

NiceCupOfTea said...
I don't come across many Crohn's folks who've had a colectomy and, of those who do, most end up with a permanent ileostomy. So I hope you don't mind if I ask a few more questions.

How many BMs a day does Steve has? What would make him give up on the j-pouch and go back to having an ileostomy? It already sounds like he's struggling quite a lot with his disease, tbh - is what he has now really better than what he had with an ileostomy?

I do have an ulterior motive in mind: I want a reversal. But I also know that a reversal will mean basically living with Crohn's again, much like your husband is doing, and I'm trying to decide if it's worth it or not.

Sorry about this. If you want, email me, so this thread doesn't get any more derailed... :-/

That's totally fine. I completely understand your curiosity. He only had the stoma for a few months at most a year between his emergency surgery and his third surgery . The emergency surgery they took out half of his colon and the second they took out the rest and the third was to reconnect everything.
We havent talked about it in detail but he said he HATED having the bag on his hip. He has said he never wants to go back to it if he can help it. Steve's biopsies come back as negative for Crohn's Disease but the doctors said it is possible for 5% of the CD population for that to be the case.

On an average day he probably has 8-10 BMs a day. Good day maybe 5-6 bad day 12+. With Humira its been helping with reducing urgency of having to go. So we assume that's because its helping the inflammation in the J-Pouch.

I think having a J-Pouch makes home feel a little more "normal" I can probe him more tonight.
Posted 1/26/2014 4:16 PM (GMT 0)
Oops. I'm so sorry, I must have missed this last night. (Yeah, I spend my Saturday nights on HW... <_<)

I do really appreciate your answers, though. I must admit, that's a high number of BMs compared to what most of the other j-pouchers claim to have (4-6BMs a day, usually). I'd be absolutely fine with 4BMs a day, even 6, but once you start getting into double figures that gives me pause for thought.

I think Steve's doctors are right about it being possible to have Crohn's with negative biopsies, but I am far from being on any kind of expert on that. Personally, if there is inflammation in the j-pouch and it's not pouchitis (which is treatable with antibiotics), then I would think it's Crohn's - hard to see what else it can be.

Do you think your husband is less sociable than he used to be because he fears accidents (if he needs the toilet and doesn't make it in time) or because he's fatigued? I can testify to active Crohn's disease being debilitating from personal experience. It has certainly reduced my desire to socialise to zero, although to be fair I was never exactly a party animal.
Posted 1/27/2014 12:21 AM (GMT 0)
I am married for 2 years now with my husband. I have CD sense I was 13 years old. Having relationships have always been hard even when I got married. Its very tiring to have CD. I have had nothing but bad reactions to all the meds for CD and it has really put my emotions and self image on a roller coaster. My husband when we met never heard of my disease and had no idea the effect it had on me. We fought a lot too and I have probably cried enough to fill a lake. He was at some points embarrassed by me because I also pass out a lot and he didn't want us to go out with his friends because some thing might happen. I will be honest we separated for month I had a flare up and I thought everything was going to end. I would spend a few nights with him and try to figure out what went wrong. Both of us didn't know what we were doing with a marriage. Now we are happy we were honest to each other as to what the other didn't' like and worked on how to fix it and help the other. opening up to any one is a hard thing to do. Try to give him time and open up to him so he might feel comfortable to talk to you. Give it time sugar . :)
Posted 1/27/2014 12:58 AM (GMT 0)
  (he keeps a lot of his soiled pants/underwear in the bathroom closet hamper)

This is unacceptable...unless you don't have a laundry at home.  DH has had Crohn's for nearly all of our close to 50 years of marriage, and he takes care of his own undies.  Yours should learn to do the same!

As  spouses of Crohnnies, we do endure a great deal, our pain is emotional while theirs is physical and emotional.  I guess you have to ask yourself if the situation were reversed would he be there for you?  In my situation, I know DH would be.  It is not fun, not the life I would have chosen for either of us, but it is the hand that we were delt and all we can do is play it to the best of our ability.  By the time DH was officially diagnosed, we had three little girls and of course that figured enormously into the situation.  Life with a chronically ill person is fraught with emotional ups and downs, tears, disappointment and lost dreams, but it is what it is, we can't change it.  We can hold onto each other and pray for strength to carry us through the bad times and really, really appreciate the good times!  I wish you well.

Posted 1/27/2014 6:40 PM (GMT 0)

jessltc said...
Any other stories/examples or advice for marriage with chronic illness?.

I thought instead of tackling the entirety of your initial question, I'd start at the beginning: Advice for marriage. I would suggest that the chronic illness shouldn't be the focus here, at least initially. Rather, you both are learning how to adjust from being two separate, previously independent individuals to being a married couple sharing a home. That is a big adjustment for many couples.

Communication. How and when you communicate will go a long way to helping your marriage, IMO. 

As a guy who has been married for 11 years, I think the breakfast incident is the one I can relate to the most.

"Why didn't you make me breakfast?"

"I didn't know that you wanted me to make you breakfast."

"Well, I shouldn't have to tell you."

My comment is ... yes, you do need to tell me. While I have tried with varying degrees of success the past decade, I (unfortunately) cannot read minds. :-)

 

Regarding your response to mtgman, did your husband know that you set your alarm extra early that morning and that you planned to shower at home the next morning? Did he know prior to the 40-minute knock that you were awake and needed to use the restroom? (Sounds like a single-bathroom house/apartment...do you not like to shower while he is in the bathroom or does he prefer that you not shower while he is in the bathroom?) Did he know that you were going to eat breakfast at home, wanted him to make you something, and not grab-and-go with something?

Posted 1/27/2014 11:38 PM (GMT 0)

clonehead said...
jessltc said...
Any other stories/examples or advice for marriage with chronic illness?.




Advice for marriage. I would suggest that the chronic illness shouldn't be the focus here, at least initially.

did your husband know that you set your alarm extra early that morning and that you planned to shower at home the next morning? Did he know prior to the 40-minute knock that you were awake and needed to use the restroom? (Sounds like a single-bathroom house/apartment...do you not like to shower while he is in the bathroom or does he prefer that you not shower while he is in the bathroom?) Did he know that you were going to eat breakfast at home, wanted him to make you something, and not grab-and-go with something?

You make a really great point. I have probably been so focused on Steve's health I haven't acknowledged that it is just communication issues. I would be nice to be in a situation that can be much more routine and predictable, since we're not this could have very easily been remedied by talking. I appreciate your ability to filter my thoughts and redirect to a pretty basic problem. While typing this response I had to fight off every ",but really..." "although" and other excuses to defer probable cause from myself. It was pretty humbling.

I still feel a bit of resentment though at times. At my core I feel sad. Sure I've had happy days but if I were to sit and reflect I'm not sure either I or Steve would say we're truly happy. We're happy to have each other but there's been so much extra garbage piled on top. Lost dreams for Steve, constantly rescheduling with friends, my own personal diet, financial struggles with medical bills. Just today we got a past due notice for his Humira that neither of us knew about. He'll now be over due for his dose by 8 days.
The 2 years leading up to our marriage I had been able to lose 30 pounds. In the last 6 months I've gained all of that plus an extra 10 on top of it because I've allowed myself to eat what he eats (very little vegetables/fruit and a lot of carbohydrates) So that bums me out. Recently I've been more intentional about taking care of myself and eluding my attention off of Steve. I've been counting calories again and going to the gym (with pretty mild success, though still progress)

I don't know.... you're right though communication would save us a lot of conflicts. We only have one full bathroom and Steve always locks the door. Even when he forgets and I open it to ask a question his first reflex is to draw the shower curtain. He does this ritual of hopping from tub to relax, to toilet (repeat) and then to shower to clean off.

Post Edited (jessltc) : 1/28/2014 7:00:37 AM (GMT-7)

Posted 1/27/2014 11:47 PM (GMT 0)

NiceCupOfTea said...
I'd be absolutely fine with 4BMs a day, even 6, but once you start getting into double figures that gives me pause for thought.

Personally, if there is inflammation in the j-pouch and it's not pouchitis (which is treatable with antibiotics), then I would think it's Crohn's

Do you think your husband is less sociable than he used to be because he fears accidents (if he needs the toilet and doesn't make it in time) or because he's fatigued?.

I intentionally kept count of this bathroom visits yesterday and it was 7 that I could tell. But yesterday we had a really fatty lunch of burgers and fries with friends. Which probably attributed to some of that.

Steve doesn't really take as good of care of himself as he should. He was prescribed antibiotics back in October but kept forgetting to take them regularly which defeats the purpose. We haven't had any scoping recently to see if the ulcers and inflammation have gone away.

The socializing goes both ways. Some days its physical exhaustion other days the annoyance of jacking up someone else bathroom or trying to find a bathroom. We played soccer with friends yesterday and I suggested the school by our house for a few reasons but it also made it easy for Steve to quick drive home if he needed to go to the bathroom (which he did)

Post Edited (jessltc) : 1/28/2014 6:57:49 AM (GMT-7)

Posted 1/28/2014 3:54 AM (GMT 0)
I want to speak up about blaming a "fatty lunch of burgers and fries"... as this is one of my sticking points that drive me up the wall about this disease....

Food may or may not attribute to some of the issues... but understand that only he would know what his triggers are in regards to food, and what are not. My wife tries her best and has learned what foods trigger me, and what foods are good for me. One thing that is easy for me to eat is a burger, as it is ground up meat... easier and low residue. Though I will usually prefer charbroiled over grilled anyday, so it isn't filled with so much grease (which upsets my stomach if it is too greasy). Fries I take it easy on... I will share with my wife, and will only have a few. Pasta, bread, etc are also very easy for me to eat. My wife and I like to do Olive Garden date nights for that reason.

Either way, no matter what the case... don't look at foods as "what are healthy and what are not healthy" in regards to a person with this disease. Some seem to tolerate the "healthier" stuff better, while some (like me) tolerate the low residue/low fiber diet better. It really varies person to person... but I would also try to get an understanding about what he tolerates best...

In regards to what my wife does to help herself.... we can't afford a gym membership (at least one that is needed for what my wife likes to do).... so I did a win-win thing during Black Friday this past year. Target had a TV for $229... great deal. The TV we had previous had a little green spec in the screen that drove me nuts. So I convinced my wife to allow me to get this TV last minute... though in return, I promised her that we could get her set up in the basement with the old living room TV, a Roku, and an exercise bike that we got a steal on for Black Friday. We also purchased some rugs so she could set up her yoga setup... and pay a small monthly fee for the Yoga channel. This really was a win win, as when she gets stressed out... she can just head downstairs and clear her mind when she is upset about things.

Ultimately, it is the give and take of things. And it all mainly comes down to communication and compromise on things in life. It also has a lot to do with understanding. We are only 6 months into our marriage, but we have had quite a few arguments even prior to getting married that stemmed from my disease, jobs, moving, money, etc. Things have calmed down though... as we have learned to understand each other and what our needs are.....
Posted 1/28/2014 1:56 PM (GMT 0)

JakeB said...

Food may or may not attribute to some of the issues... but understand that only he would know what his triggers are in regards to food, and what are not.

Ultimately, it is the give and take of things. And it all mainly comes down to communication and compromise on things in life. It also has a lot to do with understanding. We are only 6 months into our marriage, but we have had quite a few arguments even prior to getting married that stemmed from my disease, jobs, moving, money, etc. Things have calmed down though... as we have learned to understand each other and what our needs are.....

That was probably the hardest thing for me to understand at first. Doing all of our grocery shopping and cooking and not understanding triggers be it environmental, stress, or food, I thought I was making him even more sick. I was realy hard on myself for whatever reason. Once I learned to let that go it was easier to still picks meals that had enough variety and nutrition for both of us. And I wasn't afraid to try different things.

I really appreciate you all and your input. I'm definitely more of an "external thinker" and having this outlet has helped me a lot. I think my need to express things out loud gets overbarring to Steve at times. So I'm glad I can spread it out over a few of you and not pile it on on him. :-)
Posted 1/28/2014 10:47 PM (GMT 0)

jessltc said...
In the last 6 months I've gained all of that plus an extra 10 on top of it because I've allowed myself to eat what he eats (very little vegetables/fruit and a lot of carbohydrates)

That's a pretty common Crohn's diet, since a lot of folks with Crohn's find it hard to tolerate fibre. If they have a stricture, vegetables could even cause an obstruction. It's a nice idea eating what your husband eats, but not if it's just gonna make you put on weight and feel even worse about yourself. I would just eat what you want to eat: most men aren't fussed about salads anyway.

I find your story a bit sad, because the pair of you would probably both be happier if Steve had never had Crohn's. It is a life-changer when it's severe, no doubt about that.
Posted 2/3/2014 2:43 PM (GMT 0)
My husband and I were dating before I had Crohn's Disease. It was hard at first, but I've been so lucky that he's extremely supportive (with the exception that it took about 5 years to explain to him that it can't be "fixed"). He still doesn't understand that my immune system is weaker because of my meds and I freak out about things sometimes.
He cooks dinner most of the time because I work later than him. In the beginning, we cooked together or I made a list of things I could eat and he'll grill chicken on the grill (mine is bland, his is spiced up!) and then I'll make the veggies (he makes his peppers etc. on the grill), I cook my bland asparagus in the oven.
If you have questions about his disease, don't look it up online, ask him. Crohn's is so different from person to person. I know for me, sex has become painful and I am constantly in the bathroom, so I don't exactly feel "sexy" either most of the time. Sometimes I am tired and just want to sleep and my husband is a "doer" and needs to go, go , go all the time. I feel bad sometimes that I'm sick (last year I got so sick on his birthday and ruined it for him!), but it's in love, sickness & in health. We're in it for the long run and you either figure it out together or you don't. He needs to be open with you about his feelings and you need to be open and understanding.
Posted 2/3/2014 2:47 PM (GMT 0)
Just wanted to say that I couldn't agree more with this sentence: "If you have questions about his disease, don't look it up online, ask him. Crohn's is so different from person to person."

So true.
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