Should I even try?

[AndiGirl]

I have been feeling some weird new symptoms and my doctor says my CD hasn't changed. My brother has CD also, and I'm not sure whether I should try to talk to him about his experiences with CD or not. He doesn't talk about his disease with our family. They know the basics, and they know that he's had a couple of surgeries related to the CD, but he's pretty closed lipped.

I've talked with mom, dad, and my sisters. They know the basics about the disease. They also have their own opinions about it, and will willingly give me advice and comments; some thoughtful and others hurtful. My brother understands the disease and the pain, but he is very hard to talk to. To make matters worse, I feel weird asking him things. I know that he has had peri-anal abscesses numerous times. He has not mentioned it, but I heard it second hand from various family members. I kind of don't blame him for not wanting to talk, as our family members can be quite nosey, not to mention are a bunch of butt-inskys.

Sometimes I really feel the need to talk with somebody that I love, who understands. I do talk with my husband, but he is healthy and sometimes doesn't understand the stress and pain. I am closer to my brother than I am to my sisters, but every time I've brought up the subject, we were interrupted by kids (we both have families), or it felt weird and awkward, like I was talking with my dad. My mother said that my father had surgery on a PA abscess during their early years of marriage. I would never ask my father about his experience. I know this is probably a stupid question, but should I try to talk with my brother about CD and symptoms, or should I just leave well enough alone? Sometimes I feel so isolated, as very few people that I know have inflammatory bowel disease. One of my sisters has had numerous stomach and digestive problems as well. They did a bunch of tests on her and though the ultra sounds, and barium x-rays all looked normal, her blood test (sent to the Prometheus Laboratory) had tested positive for Crohns. She and I are off again and on again, so I haven't really brought up the subject with her.

I think that it would be interesting to get perspectives from both guys and gals. Is talking with a sibling of the opposite sex about an embarrassing disease taboo?

 

[Dexky]

My brother and I have never been close. There's no rift, it's just several years age difference. If I thought he had info that could help EJ (it's my son who has CD), I'd drag it out of him if necessary. Of course you should talk to him. Good luck!!

 

[DustyKat]

Now that Matt has also been diagnosed with CD I wondered how Roo would respond. She has never been one to talk too much about it but since Matt's diagnosis I know she has spent time speaking to him. I don't know if he says much to her but then he's not much a talker full stop, but I know he listens and it doesn't seem to bother him. Roo's surgery is coming on for 5 years ago now and Matt didn't remember about what went on at the time but he wanted to know from me what had happened to her.

If it were me I would I speak to my brother. Perhaps you need to make the first move and even if he doesn't divulge a lot to you about himself he still may be happy to listen to you and offer advice. I reckon it's worth the try and when you do maybe try and arrange not to have the kids around?

All the best,
Dusty

 

[AndiGirl]

Thank you. I will try. My brother is the closest sibling in age to me. He is only two years older than I am, but he's always been my protector. We've shared a lot growing up. I think it's funny that we have always been able to talk to each other about just about anything. We even gave each other dating advice. He was the one who introduced me to my husband many years ago. When it comes to health or medical issues, we seem to clam up.

I have realized that it is probably me that feels weird and he senses it. We grew up with a pretty traditional family, and I'd have to say that our family was quirky as well. My mother had no respect for anybody's privacy. If you were her child, anything was fair game. My older sisters are very much the same way. When I was in high school, I started having the many uncomfortable, embarrassing diagnostic procedures. My mother would make comments, or ask me questions in front of my father and siblings. Somebody would ask nosey or stupid questions, make a thoughtless remark, or even make a joke. I learned not to mention how much it upset me because my mother's usual remark was, "We are a family. You shouldn't be embarrassed around us. We love you and only want to support you." Well, thanks, but no thanks! No teenager wants others to know about a scope in your bottom. I learned to keep my procedures as private as possible. Of course I had to wait until I was out of the house and not on my father's health insurance policy.

I'm sure many of you are familiar with, "That 70s Show." My parents totally remind me of Red and Kitty. They look nothing like them, but they are of similar personalities and mentalities. I think it's funny that my two older sisters and their families both live out in the valley where my parents live. My brother and I are the only ones left in the city. My brother has never teased me about anything medical or related to CD, but I think I feel weird talking about it with him because he was there during some of my embarrassing moments with our family. It's no wonder why he chooses to remain tight lipped. I will need to be the one to break the ice. Who knows, maybe needs some support as well?

 

[Jennifer]

Its possible that he could use the support as well. Since it seems so difficult to get the conversation started or you fear it might get interrupted, why not start off with writing your brother emails or letters that you can slip under his door? This way the ice is still broken and you get a lot accomplished and eventually maybe you can start talking in person without feeling so awkward about it.

I know for some people talking about butt issues is a no no but for me, I don't really care who it is. If they have a question, then I answer it, even if I have to say to word "diarrhea." Its something you get over in time. I used to feel the same way when I was a kid but eventually life just became too hard and too shut in to be quiet about it anymore. I don't like having to make excuses like saying that I get "car sick" on long trips. I have Crohn's and it gives me diarrhea sometimes. Better them know that then to say, "we'll stop at the next rest stop in half an hour" and then have to deal with horrible pain or heaven forbid an accident. I think being more open about your symptoms simply comes with the territory of having any sort of chronic illness.

Keep in mind though that everyone is different so even if your brother hasn't experienced the same symptoms as you doesn't mean that you aren't experiencing new symptoms from your Crohn's.

 

[Lydia]

Since he is your protector, he may be afraid that he is burdening you if he goes to you for support. You need to assure him that is not the case.

 

[AndiGirl]

Some very good insight Crabby and Lydia. My brother and his wife have been divorced for a while, and I know that being a single dad isn't easy on him. I have babysat for his children when he's needed it, and I never ask for payment. He may be holding back because he thinks I'm keeping score, like my other sisters would. He wouldn't be burdening me, but I need to let him know that.

 

[MADiMarc]

Dear Andi,
I cannot imagine not talking to my siblings about my CD. However, even as kids we did not tease in a cruel way. Try to talk to him. Can you start out with something like: I need your help & I need to talk about this with you, I need your advice. I know it makes my brothers feel wonderful when I need their help.
Good luck hon!
Michele

 

[AndiGirl]

Thanks Michele! I just found out that my brother is recovering from a very bad bout of strep throat. He was exposed to one of our sisters and her children that had it. He had a fever and wasn't feeling well. The first throat culture said he didn't have it. My mom called to tell me that his fever was so high that he was delirious and had hallucinations. He went the ER and they gave him a penicillin shot which is helping a lot. I've been sick with strep before and it's nasty!

I spoke with my brother very briefly and he said that he is feeling better, but now his CD symptoms are kicking in. I understand as that often happens to me when I get a cold or sick with something else, the CD decides to make its presence known.

I am very annoyed that it took my family so long to let me know this. I will have a talk with my mom. I want her to know that if there is something wrong in the family, they should let me know much sooner. Living 45 miles away is no excuse. There are telephones and the computer. I'm thinking of treating my brother to lunch this weekend. I need a break, and I know that he needs one too. I would like to finally talk freely about our CD. I understand that some subjects are touchy, but I think we need to feel comfortable in talking about our illness. We have the same thing, love each other, and get along well together in all other aspects. Even though he is quiet and serious like our dad, he doesn't treat me the same way. I need to remember that. He's my big brother who has been there for me, and doesn't tell me that if I toughen up and pick myself by the boot laces that I'll be fine.

 

[Jennifer]

There's a lot going on with my family and we don't always have the time to call everyone to let each person know what's going on. If your family is as large as mine then maybe it might be best for you to give them a call more often to see how things are going instead of relying on them to call you. I know that helped a lot for me (I'm one of my grandpa's caregivers after his massive stroke). I hated it when my uncle or someone would get mad at us because we didn't call them in a timely manner to give them an update or whatever. We were more focused on what we had to do to help out my grandpa and simply didn't have the time. But we did answer all phone calls and all questions asked. Just a suggestion.

 

[Ari]

I think by taking him out to lunch you'll have an opportunity to talk freely without interruptions. You have problems and we all know they wont disappear if you simply toughen up. Mind you, he may tell you to go and see your GI, but it would be nice if he just sat there and listened and perhaps told you what he thinks about it. We are so individual that you really won't know until you've done it. Wish you best of luck. Woozy Ari

 

[AndiGirl]

Thank you Crabby. I was being a little too judge mental. My mother has retired, but she is busy too. I will make more of an effort to call my family. I feel a little envious at times because my two sisters live out in the valley and it's easier for them to keep contact with our parents. One sister and her family live in Wasilla, the same town that my parents live in. The other lives in Palmer, the sister city. My parent's home is actually on the border of Wasilla/Palmer. It's more on the Wasilla side. Those two often take advantage of mom and dad being so close. I feel that I'm more independent. They are not dealing with chronic illness, so I often feel a little left out, even envious, as I would love some of the help that they receive (babysitting).

Thanks, Ari. My brother stopped by to say, "Hello," to the kids and I. He's feeling better and couldn't stay long because he had a date to get ready for. I'm happy for him. He's been divorced for about four years. He needs to find a nice girl. I guess I'll have to work around his busy schedule. LOL!