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I hope you don't mind, but I figured this would be the best place possible to get some emotions out. I have been with my boyfriend for a year and a half now, it's the type of relationship where we know we're getting married, but we're waiting until the circumstances are best (I'm out of college in 5 months and we want to be a little more financially secure). I love him with all my heart, and I have embraced his disease and I try to be a strong support system for him (I'm even interning with the CCFA at my local chapter so I can stay actively involved with this cause).

When we first met he was in remission, so when he told me he had Crohn's the severity of it didn't phase me. Several months later he started going through a flare-up and that's when I realized how serious this was. He is either immune or allergic to almost every medication. He was on Remicaid for awhile, but his doctor took him off of it to test a theory. When he went back on he had a bad reaction. He's tried Humira, Pentaza, and basically every other medication offered. He's now on Cimzia, but we're starting to wonder if it's working. 

Tonight we ended up in ER because he's been having bowel movements which are basically all blood, for three days. The doctor did some blood work and a rectal exam. Fortunately it wasn't serious enough to admit him to the hospital, but she did notice there was a growth near his anus which didn't look anything like hemorrhoids. At this point we're extremely worried about colon cancer (the risk of cancer is high in his family-his dad has had it twice, on top of that his mom has progressive MS). I love him so much and I'm trying to remain as strong as possible.

Anyone who either suffers from Crohn's or UC or is a friend/family member of someone with it, any advice at this point would be really beneficial. 

 Reply posted for mrolling03.

My husband was diagnosed with crohn's about 2 months after we got engaged.  We will have our 19th anniversary this year!  I don't know that he would have ever gone to the doctor if not for me, he had severe abdominal pain and fever for about a week when I finally said that's it.  I called his doctor made in appt. that day and called him at work to say I would be picking him up in an hour to take him to doctor, he ended up in the hospital for about a week with an abcess.
Figured with the Crohn's, prednisone moods, quitting smoking and wedding planning if we could make it through to the wedding, nothing could stop us.  We made it with a lot  of humor and understanding.
So when our oldest son was diagnosed 3 years ago at 10 we knew what we were in for and my husband has been a rock for him and he calls his dad his hero for having dealt with Crohn's for so long and still have a since of humor.  So now I'm a caretaker/supporter for 2 Crohnie's and while I wish there was a cure because I don't like seeing anyone I love deal with this I can honestly say I couldn't be happier with my family and my life!
Hang in there and laugh

 Reply posted for kar13.

Hi Wes, I'm sorry to hear about your experiences with your fiance. Congratulations though on the engagement! Being in a committed relationship with someone that has IBD is incredibly difficult. I've been with Jeff for nearly two years, and I'm still learning to adjust. One thing we both realized though is that when we are ready to get married, we know one of our vows will be especially true: in sickness and in health. Jeff and I have seen each other at our absolute worst (health wise) and rather than being scared off, it's helped our relationship grow stronger. This will always be a rough journey, but knowing this about your fiance, and choosing to still be with her shows a lot about your relationship. You two are lucky to have each other. If you ever need someone to talk to, I'm here as well as the rest of the CCFA community. I wish you and your fiance the best of luck and I hope your have a beautiful wedding. Stay strong =)

 Reply posted for mrolling03.

(cont) i know how you feel loving someone so much and being worried about them esp when it comes to these diseases. i love my fiance so much and she has done so much for me since day 1 from being someone to talk to to helping me in so many ways to better myself as a person, a father, son, friend, and boyfriend/fiance/soon-to-be-husband. she means the world to me and i have never had anybody be there for me, help me, love me, and do the things that she has esp after being through the things we went through early in our relationship. i'll save that for another time if we should chat again but she stuck by me through it and this was before she really new me or had any idea she would want to marry me. there's not too many people that would stick around and do that for somebody that they don't have any strings attached to. right now i feel heart broke thinking that she has done so much for me and right now i feel so helpless. so i will pray, both for her and you and your boyfriend, get as much information on this as i can, and use any and all advice i can to help her and help educate as many people as i can so that maybe they won't feel the horrible hopeless feeling i have right now. thank you for sharing your story and hopefully we can learn alot about this and be able to help our loved ones. God bless you and yours

 Reply posted for mrolling03.

my name is wes and i too have a loved one that i'm trying to be supportive for. i dno't have much advice as i'm new to this but guess i just want to get emotions out too. my fiance has ulcertive colitis. i proposed to her on valentine's day and, as you know since i called her my fiance, she said yes. she hasn't really had any flare ups or any complications since we have been together although if she did in the beginning of our relationship she probably, understandably, hid them from me. but in the past few weeks she has been having problems and flare ups and so now i have seen the severity of the disease. my grandmother has chrone's and has for a while but i've never seen any symptoms or anything being that she's my grandmother and probably has just kept it from us grandchildren except telling me she has had a bad day here and there bc of the disease. she's recently had to be admitted to the hospital a few times...

 Reply posted for mrolling03.

I just wanted to say thank you for being so supportive!  My husband is a great man for what he deals with and I am one of the lucky CDers with limited care.
Like you, he met me when I was in a great remission.  In our three years of dating though, he saw 3 surgeries (not all Cd related).
What my husband has said to me is the hardest part is knowing when to try to help and when to leave me alone.  Sometimes there really is nothing you can do to help and trying makes me more upset because I feel bad for him.  We are married over 7 years now and he gets better at the balancing act every day---and so do I.
My advice is do not let the disease be your whole life, enjoy the good days (or moments) and really communicate.  It sounds like your guy is as lucky as I am to have a caring soul to share life.

 Reply posted for bobpiano.

Thank you so much for your message. It does help a lot knowing there are other people out there who are in our positions.

It's funny to look back and see where we were almost two years ago when we first started dating (and when he was in remission) and where we are now. Both of us have changed a lot.

I was getting incredibly worried about him because for the longest time it was getting him down, and I felt like he was in a downward spiral towards depression. Fortunately after our ER visit, we talked with his doctor and got news that he's not at risk for cancer and that this treatment does seem to be helping, it's just taking longer because of how far the Crohn's has progressed. We still have our hard times, but I'm glad to see him finally getting excited about things he had lost passion for. He's actually enrolling for classes in Spring. He changed his major, and has a whole bunch of new goals, and he's starting to fight back and not let Crohn's take control of his life.

I think it's awesome all of the experiences you've had, and I'll be sure to share that with my boyfriend. Your advice means a lot to me, thank you for your kind response.

I'm sorry to hear about your husband, it's definitely a hard thing to deal with. I've only been with my boyfriend for almost 2 years, but I can imagine the longer you're with someone the more problems it can present as far as being a support system. I think your husband and my boyfriend might be on the same page as far as treatments go. I know Jeff does not want to do surgery if he can avoid it, so we're trying all the treatments we can first. 

As far as the Prednisone, I have heard of it causing mood swings for some people, but it all depends. Jeff was on it for a short time because for him any steroid gives him a terrible burning pain in his chest that's almost worse than the Crohn's itself. 

As far as the flare up goes, I understand what you mean. When I first met Jeff he was in remission and was incredibly active and a healthy eater, but several months into our relationship he started getting his flare up. He's been in one since then, and anytime we feel like we're getting close to going back into remission it always seems to get worse. Hang in there.

I know there are plenty of support groups for patients that the CCFA offers. On the left side of this page on the "Chapters and Events" tabs, you can search your chapter and it'll give a list of support groups in your area. Also, even chatting with the CCFA community on Facebook helps.

Best of luck with everything!

 Reply posted for mrolling03.

Hello, I'm new to the CCFA website....thank you for your posts. My husband has had Chron's disease for over 13 years and what a ride it has been. He was diagnosed a year after we were married. I'm trying to be a good listener but after 13 years of this it's hard to know how to respond. The last 2 years have been rough..in and out of hospitals consistently and the Mayo is always recommending surgery which is not a guaranteed cure. 
He is on about 8 separate meds and one is prednisone. Wondering if anyone has any idea if this med can cause mood swings? 
He also seems to always be in a flare up. I truly don't know how he works and functions day in and day out at work, he is lucky to have a flexible schedule.
Anyway, just looking for support of other people who have a spouse with chron's disease. And looking into finding a support group for my husband.
thanks!  

This is gonna sound trite, but when you love and are married to someone, you'll make all the adjustments necessary to keep the relationship.  I don't think we give ourselves enough credit for our ability to adapt, and you'll adapt, too.

I know that you know that your boyfriend is not having a picnic himself.  He's sick, he's embarrassed, and he's sometimes physically weak.  I know.  I was him.  I've been fortunate in having partners who love me and understand; we make adjustments in daily living, and we move forward.  We can't let illness define who we are--I've been a corp. v.p., university instructor, professional actor and musician, scuba diver, etc., etc.  With my partners, I've enjoyed all of these activities and considered IBD to be an annoyance (a large annoyance) that makes me plan accordingly.

Hang in there.  We're all trying to figure out life as we make our way through it.  Be positive, reassuring, silent (when asked for), and always--always--make plans for the future in order to have something to look forward to.

 Reply posted for alanschachter.

Thank you so much for your kind words.  I guess it's just knowing there are other people out there going through the same thing that helps. There's not that feeling of aloneness. I just hope things start looking up soon.