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Need advice on my bf's behaviour whenever I'm with a flare-up pls...


I found out about this forum today and it is nice to see so many people who understand how hard Crohn's disease can be. I was diagnosed when I was 12 years old and since then it has been quite a ride (I'm 24 now).

I had never been in a love relationship till I turned 22 and fell in love with a wonderfull guy... I never hid from him that I had Crohn's but tbh he didnt seem to pay much attention to it. When we met I was in remission and eventually after 1 year or so of friendship I told him how I felt and we started dating.

Sadly, after just a bit more than 1 month after we started dating I had a flare-up and I had to stay in the hospital for a week. My flare-ups usually involve cortisone, pain, vomitting, weight loss, some antibiotics/anti-inflamatory pills and I start getting better. And when it happened he just snapped... He distanced himself, didn't talk much, kept saying he didnt know what to do, was really sad and scared... Was scared of going to see me at the hospital... For me it was scary but mostly because of him... I was afraid to lose him... I was in so much pain but I brought up the strength to support him emotionally while I just felt lost and scared and did my best not to show him as I tried to calm him down.

Eventually he came to see me at the hospital 1 time and I was nervous but got so happy when I saw him... You all know how wonderfull it is when the one you love holds your hand and is there for you... He was nervous and scared but he still went and that meant a lot for me... He didnt came back to the hospital but we talked via sms or chat mostly.. I didnt want to force him or anything. After 1 week I got out and he seemed a little relunctant to see me, said it was too painfull. I filled myself with patience. I was aware that he had never ever dealt with anything like this and the fact that he was super spoiled and overprotected by his mom didn't help much in my opinion... He would tell me he didn't want to talk about it cause it hurt too much, and I would see him playing online (we play WoW together) and just avoid much conversation. It got to a point where his actions (or lack of it) started hurting me badly and I snapped and managed to see him and talk to him face to face. All he kept saying was that I had to understand his side, that it wasn't easy, was very complicated... I just stood there looking at him sadly and a bit angry because not even once he tried to put himself on my shoes or understand how I felt. When I snapped and started talking about how I felt I couldn't help but cry a bit and only then he looked at me in the eye like he had realised something for the 1st time and hugged me as he apologised continuously. It was intense but it had to happen. He told me he wanted to get better and help me but he needed time and I understood that tbh. Eventually my health calmed down and all was good as we got to know eachother better and our love grew stronger.

And again... 1 year later I had another flare-up, also during the summer as the previous one. He dealt with it a bit better but still suffered a lot and didn't talk much. Altough he wasn't super nurturing he was more loving than last time and i could see he was trying. I was in the hospital for 2 weeks and he went to see me just once but he told me to call him when I had the chance we and we would talk almost every night before I went to sleep.

Meanwhile... his mom. She seemed to love me when we started dating and she met me but there was this thing in her eyes and smile that just gave me shivers. She did her best (which was very little tbh) to try to hide how much she hated the fact that we were dating. Even so she would invite me to go on vacations with them, and on this 2nd flare-up I had I was super unconfortable because I had recently gotten out of the hospital and gotten better and I had to be extra carefull with what I ate and needed rest. I spoke to her about it but she was still very insistent that I would go and told me not to worry. The vacation with them was stressful... He was always kind and caring for me while his mom would stare at me and always say things like "it's so complicated..." ou just shake her head as she looked at me. It was annoying but I ignored it as I could. During the day she would want us to catch sun with in plain mid-day when the sun is stronger, while me and my bf wanted to rest and just enjoy the sun in evening when it was weaker (and he knew I was recovering and getting so much sun wouldn't be such a good idea). As a reply his mom would throw ridiculous tantrums and one time when we went to see her and her bf at the swimming pool in the evening, my bf said he wanted to go back to the house and asked me if I wanted to go with him. I agreed. As we got up, she got super mad and started screaming she'd never invite anyone again and that we were like 2 elderly people and should be ashamed. I ignored it as my bf looked at his mom in pure disbelief and told her to shut up... Later she got back to the house like nothing had happened.. And then tried to talk me alone and she implied over and over again that I was a super nervous person and that was probly why I was sick and that I needed to calm down. I just laughed calmly. Eventually she understood how ridiculous she sounded and ended up admitting she was very nervous as she proceeded to complain about her own life and her own son... After those terrible vacations my bf started to realise how his mom was behaving and they fought a lot... She is one of those persons that wished me best while i was in the hospital but then would call me names and curse at me at my back and without good reason. He protected me fiercely and over time till now their relationship has degraded. It's sad because she doesn't realise she's the one pushing her own son away and still blames me for it. She also says it annoys her the fact that I have to "eat differently" or "why did it have to be that one?". My bf and his biological father say she would complain even if it was some other girl and that i shouldn't take it seriously... (Fortunately his father seems to like me).

Fastforward till now, I would say our relationship grew even stronger. However, this past November I was being treated with Imuran but my hair started falling off and had to stop it. I was suggested to try Vedolizumab. I got anxious with the possible side effects but I didnt have much choice so I accepted. Sadly, due to ridiculous burocracy my treatment got delayed till February 2018. I had been taking 25mg cortisone but my bowel kept getting worst very slowly over time without a proper treatment. I had to be admitted at the hospital this past wednesday and still am here. Need to recover enough to start taking Vedolizumab; fortunately I feel fine already and I think I just need to make 1 more exam to be sure and next week I should do the treatment. My bf got weird again. He has an important job interview this monday. His 1st. It has been consuming his thoughts and actions for quite a while now; he stresses up very easily. And since I got admitted at the hospital it got worse. He's distant again, barely talks, just replies to my questions and hasn't been nurturing or caring at all. He 1st said he wanted to come and see this past friday but then he said he'd rather not cause he was too scared of catching something bad from the hospital and didn't want to ruin his job interview... Also said his mom has been complaining and telling him not to come see me and that he doesn't want to fight with her atm. I couldn't say I was surprised but it did hurt a lot. I tried to explain it would still be nice of him to call me or at least say something through out the day but he would only reply with a "ok". Usually he just sends me one text in the morning and that's it... Then I spend the rest of the day thinking and wondering about him... He has no idea how much this hurts me. He seems to be one of those persons that locks himself up in his own grief. Yesterday I called him and we talked a bit, I tried to seem happy and cheer him up but he just replied with frustration "You keep trying to soften the situation but this isn't soft at all." I got mad but didn't show it and just said "I know this isn't easy nor soft. And I'm the one who knows it better." And we agreed to talk about it face to face soon. We talked a bit more and he seemed to be in pain but he did send me a kiss and seemed to try to be a lil caring.

I wrote this hoping to get opinions and advice on my bf behaviour. Specially male opinions would be nice since man think and act differently from us women. Hope some of you that are dating someone with Crohn's can help me help him or just help me understand a few things haha. I really do love him and I don't want to give up on us...

Thank you :heart:
Hi. I am sorry for the way your boy friend is acting. You would hope he would be more understanding. I hope things change. I hope your new medicine works.
Hi Arya.
I am in a very similar situation and it gets really tough to have a boyfriend who doesn't understand what you are going through, and doesn't understand that his actions/behaviors can make make you worse and bring you lower than you already feel. I am still learning how to deal with that myself, so while I don't have any magic advice for you, I can offer you support :).
Hi Arya.
I am in a very similar situation and it gets really tough to have a boyfriend who doesn't understand what you are going through, and doesn't understand that his actions/behaviors can make make you worse and bring you lower than you already feel. I am still learning how to deal with that myself, so while I don't have any magic advice for you, I can offer you support :).

Hey Sharkgirl.

Thank you so much for your reply, even if you don't have any magical advice it sure feels good to know someone who understands how I feel. Hope we can make it better with our guys :)
been there, done that.Have had Crohn's since I was 20, met husband in 1976 when I was doing fairly well ( on prednisone, no flare-ups). My late 20s and 30s were pretty rough, until surgery in 1989. Had 20 years of partial remission, then it all started up again.He was NOT good with it in the 80's and 90's--okay with the practical stuff (hospital visits,picking up the chores around the house etc.) but not good emotionally...."if I don't think about it, it isn't happening" sort of space.(I even drove myself to ER a few times just to avoid a fight). I recently found out that when we met and for years afterwards, he did think "it was all in my head." This has really shaken me.I dont know what to make of this revelation, still haven't processed it. We can't talk about it-it makes him angry and I refuse to go there...so...I don't know-I just try to get thru day to day.Its not like I've ever been the complaining type-something has to be really wrong before I'll even squeak.Luckily, I've had very supportive doctors for the most part and that has made a huge difference. I don't know what to tell you to do other than learn (not easy to do)set VERY strong personal boundaries, especially with bf's mother.This will not make you popular but will improve your mental andphysical state.If bf can't prioritise you over his mummy, then it's better you know now and initiate a break-up.I'm not being mean, just realistic. Hope this helps.
I am so sorry and totally feel for you. Thank you for sharing this because I have been there too and it is so isolating. I wish I had advice. I just try to remind myself that people have way worse illnesses and they are still married etc. If they could find someone good, maybe we can too.

The guy I thought I was going to marry dumped me over my illness. 4 months later he met a girl who looked exactly look me, and even had literally my same exact outfits, etc. They got married 2 years later, and travel the world together for work. Literally my dream life. It sucks and no one really gets that sorrow of this illness.

If I could tell my younger self advice, I would say look for people with a good heart. I know- virtual eye roll. But I say this because I always was distracted by friends/men that were fun or my dream. Now I'm in my 30s and literally everyone has abandoned me, even my family. No one gets what this illness is like. Thank God for amazon prime and delivery services to be my support or I really don't know how I would survive during flares. I wish I had focused my remission-ish years on developing relationships with good people, and letting go those who are more self-centered.

I know this is going to sound super bitchy of me, but a former best friend and her mother were so cruel to me about my illness. I watched them have blessing after blessing in their lives. Well, the daughter was recently diagnosed with cancer and she is young. I would never wish an illness on someone else, but I hope this teaches them a lesson in humility and to never be cruel to someone with an illness. If that bf/family don't get it now... maybe one day they will.
Life is hard with crohns especially how much your gut can mess with your brain chemistry its hard and everyone that does not have it to realize how much it effects the body and mind best wishes and good luck i hope he eases up on you
Some people just aren't wired that way - to posses true empathy. Your boyfriend doesn't have it, and clearly his upbringing & mother is a primary cause. People like us cannot be in relationships with anyone possessing even a hint of narcissism - romantic or otherwise. I had a girlfriend refuse to interrupt her sleep to take me to the emergency room in the 3rd year of our relationship. I should have ended it right then. Chronic illness wreaks havoc on our self esteem and most of us battle depression most of our lives. The fact that our disease isn't outwardly visible only complicates matters. I'm sure everyone reading this has heard 'you don't look sick', or has wanted to punch someone who compliments on your weight loss as if wasting & diarrhea were a great new alternative to the South Beach Diet.

You can't pick who you fall in love with, and if I were to tell you to bail now, of course it wouldn't have any effect. Yet that's the advice I'd give you. I'd rather be single than deal with the pain you're describing. You can't force or teach empathy & compassion. It's there or it's not, and maintaining a lasting relationship with someone that has a chronic illness just requires it. At least make a sincere effort to replace texting/chat with conversations. Try to make it a rule to never ever discuss anything important that way - it'll only lead to more heartache. Good luck.