I need tp help my boyfriend and have no idea what to do!!!

[Somadoll]

Hi there
I'm new to this community and I was hoping that I could find some answers to my current relationship hurdles. My boyfriend has had Crohn's since he was 13 and he's now 34. He's been my best friend for the past 15 yrs and we have tried dating in the past but he always ended up pushing me away when he got sick. I tried to be involved in his illness by cooking for him, cleaning and just generally being there for him as well as reading about the disease. BUT, he never talks about it with me. We've been dating for the past year and a half now, I love him madly....however he's been sick apparently for months now and never told me, he eats things that he's allergic to all the time like bread and fast food or sugar, he's depressed to the point where he can't think of one thing good in his life even when I'm standing in front of him and he's been exploding with anger and negative thoughts at me lately without any consideration for me. Like breaking down and crying and yelling right 10 minutes before I'm about to go write my final exam. Like I said I love him dearly, but all this pushing me back and screaming is taking a toll on our relationship and he won't go see a therapist.
A few facts about his disease:
-He had a section of his intestine removed about 8 years ago
-He sees a naturopath and takes herbal remedies and bacteria gel caps
-He gets B12 shots every 3 mths

This is all I know!!! something that also drives me crazy. I don't know what to do or how to be supportive. any ideas guys?
Somadoll is online now Edit/Delete Message

 

[mharvey90]

From what you've explained, you seem to be a very supportive friend/girlfriend and that is something that is hard to find when you have a disease such as Crohn's. I am 19 years old and have been flaring badly for the past 4 months and my social life has completely disappeared since then- people who do not have the disease and DON'T take the time to actually understand, have a hard time understanding it, and really don't see how badly it affects your life. I can relate to your boyfriend in a way, Crohn's is a very personal disease for some people and there are a lot of things that sometimes you just don't want to share, even with the people you are closest to! It is also very frustrating, sometimes it seems like NOTHING is going to help you to feel better, and everything is only making it worse, and it really takes a toll on the body mentally, physically, and emotionally. It's a very frustrating disease. The only thing I can really say is to keep being supportive, show him that you understand his disease and you really care and are more than willing to put up with him (if you really are of course!) Try not to take it personally when he seems to be pushing you away. Good luck!

 

[Somadoll]

thankyou for the kind words sometimes I wonder if I'll ever understand the disease. I want to, but I don't really understand what it subjectively means to him to have a flare up. I continuely try to understand from the objective views presented in books, but I really want to see things from his point of view...which he feels unable to articulate. Any suggestions on ways I should/could ask him to explain? I want to know everything...but am I crossing some sort of personal line by asking to know everything?

it's so nice to know that there are people like you that can relate to the feelings he is having and it helps me in this process

 

[mharvey90]

No problem! This is a great place to get all the support you need.

From my experiences, it is not necessarily that I do not want to share the "personal" parts of my disease, but it is usually that I feel like the other people would be weirded out about it and/or wouldn't really want to hear about it. Crohn's is a vicious cycle of remission and flaring. I was diagnosed when I was only 9 years old, and suffered 3 years until I had surgery at age 12. Finally after the surgery (6 inches of small intestine-terminal ileum removed), I went into a 7 year long remission that lasted until this past March. I have been flaring up since then, and have been on several different medications- Asacol, Pentasa, Prednisone, and currently Remicade, Entocort, and Imuran. It is frustrating because none of these medications have been able to set me into a permanent remission again like I had for 7 years, but they have helped me to feel better only temporarily. So not only is it hell dealing with nasty Crohn's symptoms, but it is very frustrating! Like I said, my social life has completely disappeared, simply because my friends don't understand what I'm going through and don't bother to make plans with me because they figure I'm always sick and can't understand why. The only people I have that genuinely understand what I am going through are my dad and my Aunt, because they are the people that I have spent the most time around. The more time you spend with him, the more you will probably understand, and the better he will feel about your understanding of your disease. At least that is how I feel, I am lucky that I have those 2 people that understand so well what I am going through! You can read everything about Crohn's in every book in the world, but the best way to really understand is to be around somebody often who is suffering from it!

I think it is great that you have come on here to try and find ways to support him-it shows that you really care, and you should let him know! And maybe suggest him to come on once in a while, because sometimes just reading other people's stories and talking to other people (like I am right now) helps to feel better. My dad had to really push me to come on here for a long time because I didn't feel the need to, but once I did, I realized how much it really does help me to feel a little bit better when I'm feeling really down.

 

[My Butt Hurts]

sometimes I wonder if I'll ever understand the disease.

It's a hard one to understand. Everyone's symptoms are different, we all act to different foods differently, and we all react differently to the meds/treatments. Reading here will help you understand more.
My husband has had back surgery, but still has a lot of pain after work. When he is crabby I have learned to just be as nice as possible, then there is no additional relationship stress. I used to think he was just being an ass sometimes, but now I know he can't help it (kinda like my PMS).
Just be there for him as much as you can. Nice breeds nice.

 

[Somadoll]

I really do try and be nice. But I had assumed he was in a remission state and so when he was pushing me away I thought he was being afraid of commitment. Then he asked me to move in with him, only to back out of it a few months later. He claimed he was scared to change things so drastically in his life... all these months of flip flopping were of course, making me angry, insecure and afraid of being hurt again. Now he tells me he's been sick alll this time and has kept it to himself. He assumed I could magically tell he was sick and was just ignoring it. If he had told me he was sick ages ago I could have seen the situation for what it really was, now I feel I've been duped for some reason and that our relationship has been put through intense unnecessary pain and stress. I love him soooo much. And I understand now that when he asked me to move in with him after not talking about his health with me, it set off a chain reaction of stress for him... if he's been hiding his symptoms all this time, of course it would be hard for someone to suddenly always be around. it's alot harder to hide then. Have you guys or anyone you know experienced this type of pain in a relationship due to crohns? How can i help him realize that by pushing me away when he really wants us to move forward is like shooting himself (and me) in the foot. I didn't realize there was an elephant in the room all the time and now that I see it, I need to help him make it feel normal.

 

[Sparky]

I'm not surprised you're confused and anxious, you're in a very difficult situation. I can understand him being less than open with you, as it's something I find difficult to talk about. Partly from embarassment, but mostly I hate the thought of being seen as a 'sick' person, so I tend to cover it up as much as possible, and can imagine that I would have done exactly that if I was entering into a new relationship (I've been married since long before I had CD).

Having said that...it sounds like he needs to realise that opening up a bit more to you would help you guys. All you can do for now is just continue to be there, I found it easier if I got asked specific questions (always on the understanding that if I didn't want to answer, I din't have to). That was easier for me than starting a conversation myself, and it helped my DH to understand what was going on in the early days. I could handle a straight question about how I felt, but I couldn't always find a way to bring it up myself.
We also got very good very early on at making jokes about it - we went on holiday to Disneyworld when I was in the middle of a flare, and it became a standing joke between my husband, son and I to cheer me on in the morning as I made my first dash of the day to the loo - I had severe joint pain affecting my feet at the time, and it was like watching someone with bound feet shuffling an inch at a time, hoping to god I'd make it in time. My then 5 year old would be shouting 'Go Mummy! Go Mummy' whilst making baby circles...worked for us!

It's very hard for anyone who doesn't have CD to understand the massive effect it has physically and emotionally - speaking for myself, I have days where it's all too much, where I'm full of guilt because my husband got a dud when he married me, where I feel like I'm ruining my boy's life because he's got way more responsibility that any 10 year old should have...then there are the days where I think more clearly, where I go and do stuff I enjoy, and I'm like a different person. Similarly, some days I'm physically not up to doing stuff, other days I'm more or less fine - and it's been really, really hard for my husband to keep up with the constant change.

The comparison with PMS is pretty good tbh - he's behaving in a way that he probably knows isn't reasonable, but he can't help it.

Good luck with it all - and this forum is a fantastic source of advice and information. You'll get all kinds of different ideas and opinions here xx

 

[Guestly]

You know, my hubby is just lovely, but he often says to me, "Whats the matter with you then?", and I just want to scream at him "I've got fucking Crohn's disease you idiot!!" Which is so mean, because it's not his fault, and what he is really asking is how am I today - how's it going?

We hurt the people we love the most, and when I have spent a few hours vainly researching incontinence aids that don't come up to your armpits and down to your knees, I can be a tad crabby. For me this has been quite a humiliating illness, and you do need to be able to find ways of laughing about it - in our house we say "shit happens"... and where I am concerned it really does - a lot.

Do you know though, you deserve more from this - I think a frank conversation could be in order, you are prepared to support, and maybe you can never feel a Crohnie's pain, but neither can any of the amazing partners of crohnie's on this site - you are still brilliant, and you deserve some respect for your commitment to supporting your BF. I remind myself regularly that even though I get annoyed and depressed, and feel totally unsexy at times, hubby is feeling confused, helpless and worried - he wants to help, but aside from getting the hot water bottle ready, or constructing a cork for my unreliable butt there are limits to what he can do other than be there and say, "Whats the matter with you then?", to which the poor bugger gets a vicious response from the shit demon that his wife turned into!

If you are in this for the long haul, I think you need to set a few groundrules, and have a firm conversation. We Crohnies may be sick and feel like poop (pardon the pun) but that shouldnt excuse us being badly behaved to our partners - I'm making a mental note here to be nicer to hubby starting right now...

Good Luck!

Lishyloo x

 

[Sparky]

Lishy, you make an excellent point about having CD not being an excuse for behaving badly to our partners - DH and I talked about this very recently. I consciously try not to take out my mood on DH/DS (albeit with limited success!) and I fully expect to be called on it if I'm out of line. If I'm snappy and vile because I feel crap, I expect whoever's on the receiving end to point out that I'm out of order (gently point out, I should say) - I very often don't realise how sharp/narky I am because I feel like by just being around rather than hiding in my bed I'm making a monster effort.

It is a lot for partners to take on - my dh worries so much about me, and there's sod-all he can do most of the time apart from listen to me endlessly bang on about the merits/side effects of various treatments, whether I really look like a hamster or if I'm imagining it, how many times I went to the loo while he slept peacefully - poor bugger puts up with a lot. BUT - at least he knows what's going on, and I think Somadoll's boyfriend needs to be more open. If Somadoll's willing to put up with it all, then a bit of frank conversation isn't a lot to ask of him.

 

[Somadoll]

This has all be wonderful and it gave me the knowledge and support and thus, confidence to have an open conversation with my bf about everything. Once he started talking it was light a thousand pound weight was lifted off our relationship. Suddenly, we were best friends again and able to joke with each other He explained that he hid/ignored his issues because he wanted so badly to give me a normal relationship, a normal date, a normal dinner....he didn't realize until now that at the same time he was pushing me away by leaving out such a huge part of his life. Thank you everyone for helping me figure this out, this forum saved our relationship by helping me see the ways I could help, even if he was or wasn't talking That being said, I'm so glad we are talking and I'd like to stick around this online community, because I've learned alot in this short amount of time I've been here and I am committed to ensuring my partner has the best quality of life I can help him achieve.
Thanks so very much,
~Somadoll

 

[Guestly]

Brilliant!

 

[Mark33180]

Congrats on the breakthrough please tell him to come stop by so we can all welcome him here and tell him how lucky he is to have someone that cares so much for him.