Boyfriend is distant during flares - need advice

[pbandcrohns]

Hello all.

I'm so happy to have found this support forum as I've been very close to pulling the plug on my relationship lately. My intuition however corrects me in knowing that my boyfriend is "the one", we love each other, each of our families have made us one of their own etc.

This is my first relationship with a man who has an illness. Currently he's having a bad flare, worse than I've known when with him. He's had severe crohns for 20+ yrs (37 yrs old) and I fully accept and support him in every way, whether it's driving him to the dr (we live in the city and I have a car) during my work day or simply texting him to tell him I hope he's better than yesterday.

When he's in remission, life is bliss with each other. We recently went down to Palm Beach and had a great vacation but his flare came about a month later. I learn continuously about CD so that I'm educated and ready for what might happen as well. Recently he had a scope and his doctor (one of the best) said a colostomy seems to be the only option. He has the surgeon consult in 2 wks. This past week however he's been SO distant. We don't live together so I haven't seen him but every day he will send one text telling me his pain is driving him crazy. I used to be much more in touch with him via text but since I've felt like I'm the only one pulling the weight in our relationship, I'm feeling resentful.

Having "talks" with him only makes it worse so that's where all of you wonderful people come in... Is it me? Is this how a relationship will be if we take next steps? I feel lonely, unappreciated and unloved. Perhaps his very "proud" and quiet attitude vs my nurturing and compassionate, thoughtful attitude are the conflict.

I suppose I'm just looking for hope or help to prove it's worth staying in this. His sisters and mom now text me more than him.

Men - what are the worst and best ways for me to deal with him and this circumstance? I pray so much for a cure and I've never been a prayer girl but donations only go so far.

Thanks in advance all. I can't wait to hear your thoughts.

 

[CrohnsFighter]

As a male independent type person, the last thing I want is sympathy for anything. While you may read about crohns, it is sometimes hard to comprehend the physical and mental impact is can have on a person. Being told you need a colostomy... its a big deal. At least in my experience, there is a Denial/reistance & Acceptance phase that I go through when there is something new disease related. I remember when I was first diagnosed I wanted nothing more than to know why I was experiencing the problems I was. Once I got my answer... I didn't want to believe it. You should be supportive and give him space. Don't ask 50 questions, and don't make suggestions. If and when he wants to discuss it... he will. Give it time. I know I distance myself when I flare, but everyone copes differently.

 

[pbandcrohns]

I definitely didnt put that right in pulling the plug while describing this tough time. I definitely don't ask questions anymore but he is open about it and tells me when he sees the dr or what the dr says without my asking. He's much like you in that he's independent as well. I think I'm just confused as to whether it is me? Or whether Crohn's and these unthinkable situations would lead to him wanting distance. I want to be one of, if not the, best part of his life so I am just at a loss as to how I can be. When we first began dating he told me that I was but as I said he was at a difft point in life. This is all very foreign to me so I think that I'm mostly looking for tips as to how I should or shouldn't deal with this.

As this is my first Crohns experience, I am really unaware of what to expect or if his distance is the disease or if it's unrelated. Know what I mean? I also don't want him to feel so alone in this. We've talked about the osteomy bag before (he brought it up a couple times and he explained it all to me) and I've told him it wouldn't faze me. It truly wouldnt. He is the love of my life and I can't imagine the pain that you, other Crohns survivors and he are going through. But I want to be there, just don't want to coddle him as he isn't one who appreciates that.

So is it normal to go a week without him wanting to leave his place besides work? I am sure he's feeling depressed and he was just put on more medicine. I know he knows I would do anything to be here for him but I have only questioned it because I don't know if it's Crohns-related or relationship related? We have a great mature relationship but I'm an anxious person so I hesitate to jump to any conclusions.

I am so appreciative for you words CrohnsFighter. It would mean a lot to me if you kept in touch. This is my first go at it, aside from webinars and newsletters for CCFA.

I hope you are well and enjoying the holidays. Really looking forward to learning more from you.

 

[JDTM]

Hey pbandcrohns,

I gotta say, the fact that you are reaching out on a support forum such as this is a pretty good indication that you obviously care for the guy, and the fact that you've been educating yourself on IBD tells me that you're on the right track.

Every person and every relationship is different, but here's what I can tell you from my own personal experience. I'm currently in remission, as far as I can tell -- I'm nowhere near as lousy as I was a while ago. That said, when I was at my low points, I didn't have the energy (physically or emotionally) to be a great partner; I relied on my wife for support, sure, but I also kind of withdrew at times and I often felt like a burden. I was depressed, straight up. Comes with the territory. Things have been much more back to normal, relationship-wise, as my condition improved, and now that I've been through it, hopefully I'll know how to cope a little better if or when I flare again.

Likewise, I'm sure it's no picnic from where you stand either. The situation is difficult and frustrating for both of you, and it's perfectly normal for you to question things if you feel like you're being shut out. I'm not psychic, so I can't say anything with absolute certainty, but my hunch is that his head is probably not in a very good place (like CrohnsFighter said, an ostomy is a pretty big ******* deal), so I'm not surprised if he's not acting like himself.

Not sure if this helps, but those are my thoughts. As hard as it may be, try not to be anxious about it, as I'm willing to bet the problem is the illness and not you. (I didn't exactly feel like spending time with anyone when I was really sick, so that part doesn't surprise me.) It sounds like you're being supportive as much as you can -- it's a balancing act, for sure.

Anyways, I wish you the best of luck, and speaking as someone who's been on the other end of the stick, it's cool to know you care. Take care buddy.

 

[pbandcrohns]

Jesse,

Wow. You just put so much in perspective. Since I never knew anyone with crohns, let alone be in a relationship with someone who has it, I've been super confused as to whether I should take it personally.

It sounds like my hunch to stick it out and trust that he simply needs some distance and thinking time was correct. Men are such different creatures, as I'm sure I would look for nurturing but I do understand the serious life changes he may embark on.

Cannot thank you enough for your encouraging words. The holidays already feel a bit happier. Joining this forum and continuing to learn and understand as much as I can might be one of the best decisions I've made in my relationship with him.

Here is to your current remission and health. Keep kicking it's butt. Thank you so much. Truly, thank you!

 

[DustyKat]

:ghug:

I am not in the same position as you pbandcrohns as I am coming from the perspective of a parent but I hope I can offer some sort of support to you.

I agree with CrohnsFighter and JDTM.

A persons approach to their health differs for us all and whilst some seek out support others don’t, especially when it comes to something like the need for a stoma. I don’t have IBD but when it comes to my health I am someone that prefers to be left alone. Ironically, as a parent of two children with IBD the hardest thing I have found is to pull back and not constantly hover over them. It has been a hard lesson to learn to not repeatedly ask…are you okay?, how are you feeling?, or just look at them trying to find find signs that something isn’t right. Add to this a child that is an introvert and I must have been an absolute nightmare! :eek2: As it stands now I have learnt that when it counts the kids do come to me when they have health concerns and they are ready.

Please don’t take things personally, I have seen the full gauntlet of emotions with my two and some of it has not been pleasant but given the circumstances perfectly understandable and certainly no reflection on their loved ones. Home is their comfort zone, they have behaved here in a manner they wouldn’t dream of doing anywhere else but here is where they feel safe and the love is unconditional.

I know given the same circumstances as your boyfriend I would shut down to those around me until I was ready to broach my health issues with others and I couldn’t rule out that he feels he is a burden to you. I do understand how difficult this is for you and your feelings are natural and just. :ghug: Given that I was in your situation I would offer support by saying two things…

I am always here anytime you need me.

and

If there is anything I can do please just let me know.

Sending you warm wishes and much luck. :heart:

Dusty. xxx

 

[Lam123]

Pbandcrohns,
I have had crohns for a long time and I am the same age as your boyfriend. When I am in a flare, experiencing some sort of side effect, or making a important medication decision, I always want to be left alone and people constantly asking if I'm ok, drives me insane. Even when I have to go to the ER for pain, I just want to be by myself. The reasons why I want to be by myself are, I don't want to talk, I don't want to answer questions, I don't want to be a burden, and having this disease sucks. All I want to do is feel better. When I am in a bad flare, if my husband talks to me about it, tries to cheer me up, it makes it worse. I know he's only trying to make me feel better, but it doesn't. So now, when I'm not feeling good, I will tell him, please give me some space. I don't mean any of this in a rude way, it's just the way I react in a flare. Sometimes in a flare, I blame myself, so therefore I get so mad at myself that I just want to be left alone.
Hope this helps! Keep us updated.

 

[pbandcrohns]

Dusty and Lam,

The more you are all teaching me, the more "aha!" moments I am having. We had a wonderful night with friends last night as I think he was happy to be out and about for the first time in awhile. He even planned going out to watch the football games! Ironically, I broke my toe yesterday but didn't say anything til somebody stepped on it (I'm pretty non dramatic when I get little injuries.) he overheard and when we left, he insisted on coming over. He elevated it and everything. Such a sweetheart. This morning before he left to go home and take his meds, he insisted on creating a comfortable space on my couch with pillows to elevate my foot, brought me ice and a book and asked if I needed groceries etc. I think he felt great being in the position to be the caretaker and I am so grateful that no matter how silly I think my broken toe is, while he is suffering a chronic disease, he cares so much.

It is also really wonderful to hear from you both as women have differing perspectives and as a mother and as a crohns fighter, you both understand where I am coming from emotionally (taking it personally at first.) I now look back to a couple previous spats we had and realize I took his need for space the wrong way as I had zero idea what it was about!

I can hardly express enough thanks for both of your stories.

Dusty: you've taught me a lot about how his parents must have felt when he was diagnosed in high school. You are quite an amazing one yourself as you've had to resist the need for nurturing so very often. Your boys are lucky to have such an understanding and patient mother!

Lam: your story is so identifiable for me now. Just knowing that space is a natural way of dealing with this disease is a huge help. the fact that you also have a happy marriage with mutual understanding of how you deal with flares is really incredible. It restores my faith in a successful long term relationship with him, especially knowing now how I can behave in order for him to cope.

Thank you both so much. Your stories are very powerful and as I told my boyfriend once, his condition is just that. I love him regardless of what he is going through and what surgery he might need. I will always be there and I'm comforted knowing that you would both agree that is the right reaction.

I will keep you posted re: the surgery and wish you both health and happiness always!

 

[Lam123]

Glad I can help. If you ever want to send me a personal message and talk, anytime, I am always here to help.

 

[jwfoise]

We've talked about the osteomy bag before (he brought it up a couple times and he explained it all to me) and I've told him it wouldn't faze me. It truly wouldnt.

Hi pbandcrohns.

Just to add a couple of thoughts....

As way of background, my wife has Crohn's, has had it for over 30 years (we've been married almost 25). I have pretty mild colitis (just a coincidence).

Even though she had been dealing with the disease a long time, and had several previous surgeries, it was physically and emotionally difficult for both of us when she had to have an osteomy, about 10 years or so ago. I think it is a more difficult level of feeling "violated" (for lack a better word) and I think it can really impact one's image of one's self. We have worked through it, but it was a difficult time.

One of the things that helped is we worked with a therapist who specialized in people with chronic diseases or similar issues (she worked a lot with women who have had mastectomies, for example). I think we contacted her through either the GI or the surgeon.

Something to keep in mind, if it might help.

 

[pbandcrohns]

JW - thank you so much for your words of advice. I was curious if there was a special therapist if it becomes necessary during such trying times. What a relief to learn that there is! We are going in for his colostomy consultation on Wednesday. I will just do my work as I wait but he said it might be a long time. Doesn't matter to me his sisters and mom (not so much the brothers and dad as the males of his family are very kept to themselves) have been ever so grateful that I have been able to provide them with updates since they don't all live nearby and have families of their own.

All of the support on this forum has helped us build a stronger bond in even a short period of time. I can't even express how grateful I am for it.

Thank you again for this wonderful advice and sharing your story. Wishing you health and unconditional love in the new year!!

 

[jwfoise]

<snip>
(not so much the brothers and dad as the males of his family are very kept to themselves)

That might tell you something right there.

I hope you have a healthy and happy new year too.

 

[Almondmilk]

I know this is late to this post, but maybe my response could help somebody.

I am coming from both sides of this situation. My last serious relationship I lived with my exboyfriend, and he has Stills Disease. In the time of the relationship I was very fed up with his illness and his attitude. Yeah, he didn't feel well, but he was downright cruel in response to me. He was withdrawn, mean, and manipulative in cornering me into doing what he wanted. I complied for so long because I knew he was sick, and he was depressed. Never did he really communicate with me what was going on with him, he would just lash out. He wouldn't see a counselor to talk about his health, he wouldn't try for a second opinion, and eventually I had to let him go to take care of myself.

A year later I ended up getting sick with crohns disease and now I am in a serious relationship where I live with a partner. If I learned anything from the past relationship it is the value of communication. Sometimes I might be tired, or cranky, or sad - but it's never an excuse to withdraw or lash out at my boyfriend. I try to communicate with him, I feel like -x- and I need -y-. I don't want the guesswork, I don't think he should ever have to guess if he did something wrong, or what is going on in my head. Living with this disease and sharing it with a partner is hard enough.

 

[dj_tano]

I have crohn's and my gf has had to go through the same things as you do.

For me it's the mix of medication plus exhaustion that causes being distant from everybody, so the only advice I can give is to not take it personally. It is not your fault, he is not distancing himself from you, he is just in a really awful situation that messes with his mind.

Hope this helps!

 

[Carlin]

Hi!
I feel I am in a similar situation and I feel myself everyday searching the Internet for help. My BF of over a year as a very bad case and we have been working through it and I am always here for him and lately he has been pushing me away and working over time. We used to spend at least 4 nights a week together now I'm lucky if it's two. All he does is work. He hasn't done anything fun, not even spend time with his friends. He tells me it is not me but it seems like each week he is getting worse and worse. He started stellara in January and that is when the changes started. I don't see him laugh or have fun anymore. Anyone else have this happen to? Anyone else on stellar? This medication btw has not done one bit of help for him but bring on mood swings, weight loss, loss of Sex drive and what seems to be now depression.

 

[JDTheRoadrunner]

As a guy with Crohn's, I wish I had a good answer for you. I really do. All I know is that, personally, I would sooner choose to shut myself in during a Crohn's flare up than experience the flare symptoms with an audience of any sort.

My immediate advice would be to not ask many questions. One- chances are, not even he (or anyone else with the disease) can reply with a straight answer. Only because this is a disease full of unknowns. There are some cases that still stump the most educated doctors. Two- if your BF has the answers, you probably wont like what you hear. There are a lot of things that Crohn's/IBD patients choose not to share because they may be a little TMI even for them or their family. I know my greatest fear is having to get a colostomy bag due to my Crohn's. (I'm imagining that is a pretty difficult thing to explain on a date.)

In a general sense, I would encourage you to just show your love to him, but perhaps not by trying to gain an understanding through him. Just be around him and subtly let him know that you are there to help him if he needs anything.

I know this isn't a very good answer, but I do hope you find a way to help him and support him in every way you wish.

 

[ronroush7]

Don't give up. If he truly loves you he will return. Keep supporting him. For the person who asked about Stelara,i was on it for a little while and it did nothing.