My boyfriend has crohns

[caseface7592]

my boyfriend has crohns

i am truly in love with luke. i have been his best friend for 2 years, and we have been dating for 9 months now. he was diagnosed about 3 or so years ago with crohns, and for a while it was okay. but the past year has been dreadful. He was on humira for a long time, than that completely stopped working. He is now at a new doctor who put him on prednisone which seemed okay for a few weeks, cause we were graduating and he had no energy and was going non stop. He finally had enough energy to get through a day. He was on 40 mil, but that didnt seem to help to the full potential after a while, so they upped it to 60 a few weeks ago. Now he cant ever sleep, he is always hungry which ends up very bad, he can hardly even get through a meal without going. sometimes he ends up eating on the toilet. he has very low self esteem and i love him so much and he pushes me away alot, or when im with him he is just so out of it, and i know it kills him.

i am very understanding of his disease and do everything i can for him, and he says he could never thank me enough for all i do for him. i want to help him so bad, and have done so much research for this disease. No one understands him like i do, and somedays i know his stomach just as well as he does. but it really effects our relationship some days. we never fight or anything, but its mainly he feels so bad and guilty that he is so tired all the time and constantly in the bathroom, and i feel bad that i cant help. i try saying and doing everything i can for him to help him. i know its a huge dump on his self esteem, especially when he didnt make it to the bathroom in public in front of me. is there a way that i can help him besides just being understanding? is there something i can do to help his elf esteem? i love him with all my heart, and plan on spending the rest of my life with him, it just kills me to see him in such pain, and having so much trouble with it. any help or advise is so greatly appreciated.
-casey

 

[Crohn's 35]

Hi Casey Welcome to the forum! So sorry both of you have to deal with this, and you are an Angel for coming to his rescue and getting the help he needs. Keep in mind everyone is different and we are not doctors but people who actually know what he is going through. The reason he isnt sleeping is the Prednisone, high doses make you wiry and eat all the time. He can eat applesauce and banana's to help bind him. Also another thing to ask his doctor is Questran, it helps stop the diahreah. Taking imodium is not good long term so best to stick to a low residue diet and avoid sugar, caffeine and dairy. Taking his pred earliest in the morning is best. At night is the worst time!

He feels embarrassed about his accidents and this disease is not easy to deal with and some do come depressed from time to time. He is scared some day you might tire of all this and leave, and we have seen some partners leave. It is frustrating for you too.

Try to do some activities he can do and make it easier for him to be near a bathroom until he gets stable.

Thanks for coming here and helping. Lots of wonderful people here to help you get information and support. Kudos to you too!

 

[Jennifer]

Jettalady said it best especially about doing activities near a bathroom. I wish I knew to take Prednisone in the morning. I always took my meds at night and Pred made me crazy but it usually helps. Best thing to do is be there for him and be understanding like you're already doing. We all need that support cause we get so down on ourselves and do tend to push others away just as long as you keep yourself happy and sane in the process cause it takes its toll on you too. Welcome to the forum.

 

[Sophia]

Dear Casey,

First of all:

*bighug* - You sound like the perfect partner for anyone struggling with Crohn's. So supportive!

The situation you and your boyfriend are in right now is a really difficult one, to say the least... I can't say that I know exactly what you are going through, but I can say that I've just recently experienced something very similar:

I was hospitalized last October for three weeks, and the doctors found out I had some kind of IBD and then put me on 60 mg Solu-Medrol (which is similar to Pred, but IV), and then I switched to Prednisone after 10 days or so. In total I was on cortisone for three months, and I felt terrible throughout. Not only was I sick, I had to deal with the side effects of Prednisone too. One of the biggest challenges was that I got really depressed from being on the Prednisone, I got fat (I was so hungry all the time, that I could eat and feel an instant hunger only half an hour later), I got the chubby moonface, couldn't sleep, and felt terrible in front of my boyfriend... Not very cool to try to be sexy and happy at that time, so I felt so bad for my boyfriend who had to put up with it. Even though he was a real sweetheart, just like you seem to be! I understand it must be so difficult for you to know what to do to make your boyfriend feel better. This illness and medication really can lower a persons self esteem, because you feel like crap, you put on weight, and your appearance changes. My boyfriend not once told me I had changed though, and he kept on telling me I was beautiful! Even though I knew it was BS (I had one look in the mirror and got scared to see that really ugly fat person with the moonface - clearly that wasn't me!!! ), I was so thankful he never pointed it out to me. You seem like you support him so well already, so I don't know if I have any more advice for you. But one thing I constantly kept thinking about was that my boyfriend would leave me because I was sick and ugly. So I guess if you are able to comfort him and let him know you want to be there for him always - just like you told us in this post - I'm sure that would be of comfort to him. At least that made me smile.

My boyfriend and I used to watch movies in bed when I was well enough, and that was nice. When I started getting a little better we could go for short walks just to get fresh air. It was lovely to go to a park for example, especially after being indoors for so long.

Being on Prednisone in addition to being sick with Crohn's is terrible, especially when he is at such high doses as 60 over a longer period of time. Your boyfriend's doctor should be looking to lower the dose as soon as possible, but if your boyfriend still has diarrhea maybe that's why they keep him on it. Jettalady's advice is good, if he can take something to stop the D (I've never tried any of the medicine she suggested, so can't offer first hand advice there!), then maybe he could taper the Prednisone soon too.

I really hope your boyfriend will start to feel better soon. Things will be easier once he starts to taper the Prednisone, I'm sure. At least it was that way for me. If you ever need anyone to talk to about this, you can PM me! I would love to help you out if I could!

Big hug,

 

[Astra]

Hi Casey
and welcome

:hang:

You're doing a fantastic job with Luke, always remember that!
Things will get better in time, we're here for you whenever you need us
lotsa luv
Joan xxx

 

[caseface7592]

thank you for all the advise everyone! im glad to hear im doing well enough when it comes to support. the hardest thing now is that he is on vacation with his family and is so far from me and the doctor. he is having the hardest time right now and has hardly left the room, while his family gets to go off and do whatever. he was almost to the point where he wasnt going to go. He can hardly get up because he feels queezy and ready to collapse (which is a whole new side affect) poor baby :'(

 

[Jennifer]

I hope his family is watching over him closely. If he starts vomiting nonstop then there could be a number of things wrong and he should seek some sort of medical attention right away. If he gets worse then I'd suggest cutting the vacation short.

 

[Dexky]

Hi Casey and welcome. Luke's lucky to have you, not many who would stick around and even research ways to improve his life. You say you guys just grad.. I was wondering if you meant college or h.s.? Have you two made plans for a future together? Let him know that you've joined this forum. Maybe he'll want to join too. Good luck!!

 

[caseface7592]

to dexky--we just graduated high school. im going to college in the fall, and hes trying to go straight into work (for plumbing ironically lol) but yes we have talked about moving in together in a year or two or so. depending on his job income and how well my college work is going. to crabby--His family though does keep a close eye and are supportive of his disease. i dont think he had vommited or anything, just feeling pretty icky and is hardly eating to keep him from going.

 

[xoxava]

Hello! I am in a similar situation. I was recently diagnosed and my boyfriend has been really supportive through it all. All I have to say is keep the stress down and try your best to understand his pain. He will have good and bad days and take advantage of those good days but not too strenuously! I am always here for support!

 

[caseface7592]

thank you xoxava! i def take advantage of those good days, and help him through the bad days!

 

[petite-pois]

Hi! He's so lucky to have you coz u're like the best girlfriend he could ever have.

 

[ameslouise]

Hi Casey and welcome.

Ditto all above, just wanted to say hi. There are a lot of other "caregivers" on here - spouses and parents - and I'm sure you will get lots of advice and support from them as well as from us Crohnies!

Personally, sometimes I need hugs and sympathy and a shoulder to cry on, other times I need space and time alone. So my advice would be to try to read Luke's moods depending on how he's feeling. Don't let it get you down if he needs some time alone. I've been married for 11 years and with my husband for 14 yrs total, and it's sometimes still embarrassing to me to deal with all this in front of him.

I hope he starts to feel better soon. Will he be starting a new drug soon, in addition to the pred?

Both of you hang in there! - Amy

 

[caseface7592]

thanks everyone. and its so interesting to hear everyones side and to see how things kinda go in his mind. thanks for all the advise so far everyone! to ameslouise, he has a colonoscopy next thursday so we dont know what they will be putting him on next.

 

[CrohnsSucks]

Just be real supportive and encouraging while he does the prep. The stuff IS nasty and it will make you want to barf. I'd rather not say what I used to keep me from barfing the stuff up on the 2nd liter. It is hard, but with encouragement he'll do fine.
Crohn's had a different effect on me when I was about 15. I was always a big boy in school. You didn't mess with me out of fear I'd sit on you after I tackled you. I was teased and picked on about my weight for as long as I could remember. Then suddenly I lost weight, lots of weight! Had to get new clothes as my Husky's were way too big and baggy. It didn't hurt too bad they thought I just had an ulcer and just wasn't eating from the discomfort. Then they thought I was on drugs, which I wasn't. Then came a horrible round of scopes in every orfice of my body. I got a job, bought a car, and drove my new, too cool, skinny, sexy self to school. Then "friends" started to come out of the woodwork. The new skinny me got into lots of trouble, had really GREAT times and then as all too good things must do, it came to an end. I gained all my weight back, I guess Crohn's went into remission and that was that.
Now I'm 37 and it came back with a vengence. Now I only eat 1 or 2 meals a day, I got fatter, and now I'm in pain, very tired and just feel down. I'm sure I'll pull through this episode, but it's not going to be fun. I can relate now to exactly how bad he feels. Looks like this time I get the opposite of what happened 22 years ago. It is a lot easier now at 37 to deal with the esteem issues and self conciousness problems that he is experiencing. I just don't really give a care what people think of me. They don't pay my bills, I do. So they can go jump in the lake for all I care is my attitude now.
Just be there and keep being encouraging as you are doing now and he'll get through it just fine.

 

[caseface7592]

thanks everyone hes finally home though his colonoscopy is on thursday though.

 

[caseface7592]

ok heres my newest problem. luke started remciade and it seems to be helping which is a yay! but he is also on some other medicine that makes him extremely tiredddd. like everytime we hang out now he is either asleep or about to sleep. but he also works half an hour away at his uncles house, and just from texting him he seems pretty content. he also has alot of friends down there (that happen to all be girls and i have bad jealousy problems) and he seems to have enough energy to hang out with them and have fun (plus he never calls me cause he doesnt like talking on the phone). but when it comes to me, he either stays the night at his uncles to avoid the early drive int the morning, or comes back here at like 6 or 7 at night, and im only alllowed out until like 10, so i only get to see him for a few hours, maybe 2-3 times a week now. when im used to seeing him almost everyday. i dont want to fight about it or anything cause this disease is rough on him, and its not his fault he is tired. but i just dont know what to do now.

 

[idon2738]

In my opinion, you're getting into a whole new world of questions.

I had Crohn's throughout high school, and had a loving girlfriend who was my first love. She supported me much as you do your bf now, sometimes I didn't appreciate it, other times I didn't notice to what lengths she went. When I did realize how important she was to me it made me guilty and in turn, angry that I could act the way I did while around her.

I've noticed all of the advice you've gotten so far regarding "how to support" him has mainly been from other females. Now, I have NO idea if that makes any difference, but for me, I rather she understood when need be, but left me alone when it came to day-to-day problems.

I fed off of her babying me over everything, took advantage, became moody and took out my frustration on her BECAUSE she was the only one who could understand.

Looking back, I brought her down because I was too immature at the time to realize that I have to be positive on my own. The more and more I felt sorry for myself and was babied, the bigger monster it created!

So again, just in my opinion, it's awesome to give him support (I got chills for your first post), but don't forget keep YOURSELF happy. He's a sinking ship temporarily, and sometimes you just need to come up for air by yourself.... It's not a bad thing, because it just means you'll be back down in the water to help him later when he's ready, with a fresh mouth full of air :hug:

As far as the jealousy, even if he is doing things that are borderline, not fair to you. Instead of being jealous, try to have your YOU time then-- he'll come back missing you and you feel better about yourself. WIN WIN!

If you don't get rid of the jealousy, it will inevitably kill the relationship. Don't do that, I KNOW FROM EXPERIENCE AND MISS HER TO THIS DAY :emot-cop:

 

[ameslouise]

Great advice, Idon!!

 

[UCfiancee]

I know how you feel!

Casey,

I know exactly how you feel. My fiancee has UC and has been struggling with a severe flair up for the last nine months. It is turned our world upside down. We are still learning how to best support each other through this illness.

I actually almost just broke up with my fiancee on the phone not too long ago. I had every intention of getting out of the relationship because honestly his illness has gotten to be too much for me to handle. I just happened to read your post and the responses, especially Idon's, right before my phone conversation.

What I just learned is this: 1) take care of yourself, and 2) communicate, communicate, communicate. I thought I was showing Austin that I cared about how he was doing when I asked him if he was sleeping well through the night. He in turn would become agitated that I was focusing on negative aspects of his current condition and would go into endless rants about his lack of sleep, inability to keep down food, etc. That of course would annoy me because here I was just trying to have a conversation with him, and all he was doing was complaining! After talking through this and other issues, we have decided to give it another try, this time with us focusing on the good points in BOTH of our lives. I always assumed he didn't want to hear about me and my job because it would just make him depressed. Lo and behold, he told me tonight that he wants to hear about what's going on with me instead of us just talking about him and the same things that have been plaguing him for the last nine months.

You will definitely mature a lot in your relationship. I know for me, it has been painful to see other friends go on dates with their boyfriends, become engaged, and get married because some of the things that they do everyday with their significant others - such as take a walk or go out to dinner - are unthinkable for Austin in his condition and thus for us as a couple. However, while there will be tough times, you will both gain a lot of love and admiration for one another. Just think - if you can get through this together, you can almost do anything!

Always remember that even though he is ill, you are both still in a relationship. Continue to love and support one another as you normally would. You may not be able to go to dances or stay out late on a date, but even little things - such as sending him a card (or maybe him surprising you with flowers!) - will keep your relationship alive.

Thank you so much, Idon, for your post. It was something that both my fiancee and I could relate to and that we could both learn from.

Hang in there! To quote Red Green,
"I'm pulling for ya! We're all in this together."

-UCfiancee

 

[kello82]

idon--kickass advice. i very much agree with your pov and like that we got a guy in here lol.

I always assumed he didn't want to hear about me and my job because it would just make him depressed. Lo and behold, he told me tonight that he wants to hear about what's going on with me instead of us just talking about him and the same things that have been plaguing him for the last nine months

everyone is different for sure, but this issue was a big one in my last relationship. of course i wanted to hear about his life and not focus on "what did you do today?" "i crapped myself 18 times, you?"
but the way he talked about his life DID make me upset. i think a lot of it was when there were complaints. like "omg im so sore from skating today..."
things like that always got to me because i felt JEALOUS that his pain was a result of what he is most passionate about and my pain was for no reason at all.
i mean thats really specific but the concept, i mean just the way he spoke of his life made me feel like an outsider and not involved anymore. made me feel like he had NO idea how to put himself in my shoes.
but then we had nothing to talk about. cuz i had nothing going on in my life besides crap and he took my frustration as i didnt want to hear about his and so we just.....never had anything to talk about.

so anyways, just wanted to share that in my experience, there is one of those damned fine lines you have to walk here. and like you said UCF! communicate! work HARD to understand eachother because only then can you learn how to be with eachother and FOR eachother in such a difficult time. you will be different as a couple, you will not be the same as you were before. but with work and love this time in your relationship will just become another facet of you as a couple. and THAT is a beautiful thing, when you are back on the more carefree, easier facet....to know that you have already found and conquored that difficult one? i have not expereinced that feeling but i would imagine it gives you a feeling of closeness with your partner that can be felt in no other way.

good luck casey! and good luck to you too UCF. you both sound awesomely caring and supportive, and are making a huge sign of love just even being here. =]

 

[idon2738]

Thanks to all for the input!

I agree, it's definitely all about the communication.. I think it's always good to be REALISTIC as a couple as well.

For all who have partners who have to deal with crohn's, giving them an "out", if you will, is just as good, if not better than giving "support". Sometimes when you deal with an illness that is as taxing and draining as this you forget how much control you actually DO have over your mood/actions. All it takes is someone to hold them accountable sometimes and from the guy side of things, maybe somewhere deep down, it's an issue of feeling TOO vulnerable--- pressing the issues and problems just cause for a lowering of self-esteem. I would love nothing more from my next gf than someone who can just understand, she doesn't need to always be there, doesn't need to make my soups and buy my pedialyte lol.. just needs to understand to the best of her abilities and that'll be more than enough.

For partners who HAVE crohn's, whether you'd like to hear it or not, this isn't a one way street... we ALL know how bad it can get to have the disease, but we also know, just as well that others don't. A lot on here talk about how strong of a person you have to be to endure and I agree!---- BUT you can't expect people to hold your hand either. It's no secret that in some regards people who don't have to deal with the issues put a lot on the line to stick it out through our symptoms. I mean, to me, that's realistic. So, in turn, in all reality, some of us crohnies need to suck it up and give to them, whether we can or not. Not for the sake of guilt but because it's what you need to do in order for any relationship work. Crohn's isn't an excuse for me, it's just how things are now and it doesn't even cross my mind.

 

[Garym85]

I casey, I am a Chrons Sufferer and All I can say is- You are in the same position as my girlfriend.

She has easily been the most supportive person I have ever met. I can tell her anything( even the not so nice stuff) and she always puts my illness first.

I see the frustration on her face at times because I know that with so much support from one person it sometimes feels as though they have the illness in part too.

All I will say is, Good on you. I am sure your boyfriend really appreciates everything you do for him and although sometimes I may not show my appreciation I would be lost without my girlfriends support.

I have just changed medication and immediately noticed a massive reduction in symptoms. My girlfriend has noticed this too and I think she is happier than me!!
We both appreciate it may be a short term improvement but ultimately from day one of new medication sees me as the person she knew before I was diagnosed.


I hope you both manage to get better