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01-14-2012, 04:27 PM   #1
WhiteRose
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Join Date: Jan 2012
Location: British Columbia
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Hello,

I could really use some help. The person who means most to me in my life (not a significant other, but best friend and person I am closest to has Crohn's)

We've always been able to share our feelings about pretty much every topic there is.

We had a disagreement a few months ago about plans I had for the future possibly relocating so that we lived closer. Shortly after that, my friend started to have what has probably been the longest and worst flare-up in the history of our relationship. My friend has been able to tell me her feelings in the past, but that has not been the case lately.

I tend to become over-emotional when I know she's in so much pain and suffering because I love her so much. I am aware of this and have been trying to change the way I respond to things.

I am really sentimental about what we are to each other - and sometimes I think that doesn't help when she's sick.

All I want is to be a good friend, to be what she needs, and support her through it - even if it means leaving her alone. Sometimes I just feel completely helpless. I don't want to add to my friends stress level, I'd still give anything to be able to provide some comfort.

I don't have CD so, I know as much as I try to understand what she's going through, I really can't because I don't live it everyday the way she does.

I'm just having a hard time dealing with the distance between us right now. It has never been there like this and I don't want to make anything worse.

My friend has said she would tell me if she needs something, but I've found she won't actually share unless I ask her a few times. which usually results in upsetting her. I don't want to do that anymore. I understand she might be pushing me away a bit to protect me. The whole situation is just extremely hard.

Last edited by WhiteRose; 01-14-2012 at 04:43 PM.
01-14-2012, 10:11 PM   #2
WhiteRose
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Join Date: Jan 2012
Location: British Columbia
Would someone be willing to answer some questions for me? I have done a lot of reading, but I think it would help me support my friend a lot better if I could learn to cope with my own fears about her illness.

The damage from Crohn's in my friend's case is in her small intestine. Surgery is not an option in her case, nor is the colostomy bag. She's on medications, but nothing offers much relief. Her doctor orders scans which I never understand. Inflammation is visible, but with the small intestine, I don't know what assistance the scans are meant to offer her.

She's been on medication a number of years, and feels she might have built an immunity of some kind. Her doctor has not found any blockages. I'm just scared as I haven't felt it has been this bad before.

What is the likely-hood of any sort of complications from Crohn's being life threatening?

That's my worst fear. And I really want to be the best support I can be. Sometimes I fear my emotions are more about me and my fears, and I never want to be that selfish about something she's going through. She's just so important to me, and I love her more than I could ever write in here.

Thanks in advance.
01-14-2012, 11:20 PM   #3
mickey
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Join Date: Dec 2011
Location: Illinois
She is very blessed to have such a concerned friend as you. It is sometimes necessary for ill people to retreat a little as they go through the confusion and pain of illness. She sounds like she needs that space. Keep reading up on the disease and doing what you are doing and perhaps share that with her.

I have always believed that if we do not make changes, we can not expect change. So, as far as the scans, the doc is seeing where the issue is located and whether it progresses. It helps them in their medical care. However, if she does not feel like she is getting better, perhaps getting a second opinion or looking into Crohns specialists in the area may help.

I found my pains were from foods and liquids I was ingesting that had ingredients to which I was sensitive (ie., glucose, wheat, dairy, etc.). When I began to eliminate those things from my diet, the pain lessened and then eventually went away. Some of those foods I still can not tolerate, so I do not keep them in my diet. Better to have good health than miserable. Anyway, perhaps she can look at what she is putting into her body (diary) and see if that can help her ascertain some triggers and are causing the inflammation..and then Crohns.

Good luck!
01-15-2012, 03:30 PM   #4
WhiteRose
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Join Date: Jan 2012
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Thank you very much, Mickey.

I am glad to have found a place to read a lot of valuable information, as well as a place that offers help for friends of people suffering with this illness. I tried to join a group in the past, but was denied.

I think my friend may have reach a place where she believes nothing will help. We still communicate electronically because we live in different places, she just doesn't say much. Perhaps you are right, and she just wants space. It's very hard, but I can do that.
01-15-2012, 03:49 PM   #5
mickey
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Join Date: Dec 2011
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perhaps send information that you find helpful (perhaps this site may be of use to her) and perhaps something she sees may give her hope. She has to look at the glass half full and see the positive light to get better. It is so easy to have down, dark days, but if she focuses on a positive future and takes baby steps, she will get there! good luck!
01-16-2012, 12:38 PM   #6
WhiteRose
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Join Date: Jan 2012
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Thanks.

I've sent her information about resources and things I thought might be helpful in the past. I'm not sure if it was any help though. I am not sure she looked at it. I think I'm mostly here to learn what I can about Crohn's and improve upon the way I can offer support to my friend. I can make all kinds of suggestions, but again it isn't my body or my illness. Friends can be just as confused and devastated about what to do, as the person who is suffering from it.

I know I have probably asked her too many times how she is doing/feeling? I have done it out of love, and she has never asked me to stop, but I have started asking less because I imagine it must be a hard question to keep answering, if you don't feel much improvement. And lately, she seems to avoid answering things all together. This concerns me a lot. Lately, I don't say much other than I love her. I hope I'm doing the right thing. It is so hard to know.
01-16-2012, 03:18 PM   #7
Crohn's 35
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Join Date: Oct 2009
Hi there, you are such a great person to come on here and find out about your partner. I read that surgery isnt an option and I am curious to know why.

Alot of people resist medicines as I have too. I have had 2 resections, and if it werent for my hubby, I couldnt have survived the second one. She is scared, and before the land of computers I was diagnosed and not much information at the time. So here are wonderful people to share their finds.

Has she tried Remicade? Humira? Is she on any meds and Prednisone doesnt help? I know you are worried of her future, but as we all wonder what is to be, don't try to predict. Medications and where the disease is can be riskier than others but most of us live a somewhat normal life after we get settled.

Just be there for your best friend and she knows you are there but she could be afraid to say anything because in our heads we think our partners will leave us if we complain too much. She could also join the forum too. No one has to know who anyone is, just support is what we can give to you both. Let us know why surgery is not an option?

Hugs to you bothxx
01-16-2012, 03:46 PM   #8
WhiteRose
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Join Date: Jan 2012
Location: British Columbia
She has told me her doctor said there's no way to remove the area of her damage in the small intestine. She hasn't said much more than that to me about surgery. She's my best friend, and I try not to ask her about her body unless she either tells me herself, or I have her permission to ask a question.

Her last endoscopy revealed obvious inflammation. I know she's been on progesterone before for a time, but isn't now that I know of. She's mentioned not wanting to try other stronger meds due to the potential reaction.

What mystifies me is that her GI calls her Crohn's "mild" but it seems she's nearly always in varying degrees of serious pain. I understand it fluctuates, but nothing she goes through seems "mild" to me.
01-16-2012, 05:26 PM   #9
mickey
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Join Date: Dec 2011
Location: Illinois
I can tell you from my personal experience that I had to address diet issues to resolve the pain. When I ate certain foods/drinks, I would then be bent over in pain or intermittent pain. Once they were eliminated from my diet, the inflammation went down and pain went away. I would suggest she look at what she is putting into her body. Drugs can only do so much and handle some inflammation, but you have to make changes to see changes. Perhaps that will help her?
01-17-2012, 04:49 PM   #10
WhiteRose
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Join Date: Jan 2012
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Hi Mickey,

Do you mind my asking what kind of dietary changes you made? I know my friend's meals are already fairly bland as it is. A lot of potatoes, eggs soup, rice. I don't keep track of her diet by any stretch, but I have asked her questions about what she eats. Most vegetables don't agree with her. Anything tomato-based is extremely toxic to her. One of the worst foods. She's removed that.

I also know she takes vitamin D capsule as well as a multi-vitimin, b12 and a pill form probiotic. It has been suggested to me that supplementing in liquid form might be beneficial. I suggested this to my friend before.

Do you eliminate types of bread by any chance? I'm just curious about that. I know she eats banana bread. Most things seem to go right through from what she's described to me before.
01-17-2012, 05:37 PM   #11
mickey
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Join Date: Dec 2011
Location: Illinois
I removed sugars, carbs and dairy, meat, corn (and all forms thereof), tomatoes (killed me too), most fruit, wheat, grains, no breads,....Perhaps it is the form in which she eats the veggies that aggrevates her (i.e., steamed may be better than raw? or juiced?).

Also review what she drinks. Many drinks have so many preservatives or garbage in them.. better to have teas (herbal) and drink warm or cool. Banana bread may help bind her, from the bananas, but the problem is that it is also sugar, which does not contribute to good health. However, if that is her worst food offense, do not worry.

She can try smoothies made from bananas, protein powder (can put in her vitamins as well) and work on that for a few days. Key is to get inflammation down. Do what works for at least a good week or two, then expand from there. However, for someone with Crohns, bad eating means bad result. Meds can only bandaid that for so long. Makes sense?
01-17-2012, 05:57 PM   #12
WhiteRose
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Join Date: Jan 2012
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Absolutely. I suggested juicing too. But, it didn't seem to go over well. She doesn't like tea (or anything herbal), so I don't go there, but maybe she'd be willing to look at things with preservatives and sugar. She likes meat. I know she likes chicken and will eat it really bland with nothing on it. Did you remove meat pretty much completely? Diet soda is probably bad too I imagine, and of course it one of the few things she loves.
01-17-2012, 06:04 PM   #13
silverswimfish
 
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Location: Barrie, Ontario
Hey there Whiterose,

Firstly, it is wonderful that you are being such a great friend and don't feel slighted by her current attitude. When I was first diagnosed I felt incredibly frustrated that everybody was trying to bend over backwards for me, when what I really wanted was to be treated like a 'normal' person. I remember thinking that I had to deal with so much medical 'Crohn's talk' at all my tests and apppointments that the last thing I wanted to do was talk about it with my friends and family outside of hospitals and medical offices. I guess I didn't want to feel like every single aspect of my life was being ruled by the disease and that some parts could continue unaffected.

I'm sure she knows you are a great, caring friend, but my advice would definitely be not to push it too hard; In this time of great changes in her life, she may just want a steady solid relationship as a foundation to stand on - something that ties her back to who she was before all this started. And believe me, when she is ready, you will be the first she opens up to.

And as for helpful advice for her: Whenever I get in a bad way I always switch to a liquid deit for a few days (protein shakes, smoothies, soups, meal replacements). I find it settles down my guts nicely. It also lays the foundation for introducing solid foods back in, one at a time, and judging the result. Unfortunately, diet is different from person to person, and trial and error is the only real way to go about it. Many of us here have been through this many times, discovering what our tummies like and suffering when we find something they don't.

I can imagine how much it hurts you feeling so useless, but sometimes you will have to be. As all of us on here can attest to, we had to fumble our way through the first few years all by ourselves. But we are all extremely grateful to those who care for us, even if all they do is send us virtual hugs and the occasional hilarious picture.

---> I.
01-17-2012, 06:09 PM   #14
Crohn's 35
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Join Date: Oct 2009
She has told me her doctor said there's no way to remove the area of her damage in the small intestine.
I have only seen one person in my years of being on here no surgery because of allergy to the anaesthesia...

Can anyone put more information on here as to why she could NOT have surgery? Just wondering.
01-17-2012, 10:08 PM   #15
mickey
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Join Date: Dec 2011
Location: Illinois
yes, diet soda or soda itself is not a good choice. Read up on its lack of health benefits and perhaps that will enlighten her. I know digestive enzymes can also make the world of difference. She has to commit to getting better by making diet choices that work for her health, not against it. Baby steps...hope she feels better soon
01-18-2012, 12:18 PM   #16
WhiteRose
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Join Date: Jan 2012
Location: British Columbia
Hey there Whiterose,

Firstly, it is wonderful that you are being such a great friend and don't feel slighted by her current attitude. When I was first diagnosed I felt incredibly frustrated that everybody was trying to bend over backwards for me, when what I really wanted was to be treated like a 'normal' person. I remember thinking that I had to deal with so much medical 'Crohn's talk' at all my tests and apppointments that the last thing I wanted to do was talk about it with my friends and family outside of hospitals and medical offices. I guess I didn't want to feel like every single aspect of my life was being ruled by the disease and that some parts could continue unaffected.

I'm sure she knows you are a great, caring friend, but my advice would definitely be not to push it too hard; In this time of great changes in her life, she may just want a steady solid relationship as a foundation to stand on - something that ties her back to who she was before all this started. And believe me, when she is ready, you will be the first she opens up to.

And as for helpful advice for her: Whenever I get in a bad way I always switch to a liquid deit for a few days (protein shakes, smoothies, soups, meal replacements). I find it settles down my guts nicely. It also lays the foundation for introducing solid foods back in, one at a time, and judging the result. Unfortunately, diet is different from person to person, and trial and error is the only real way to go about it. Many of us here have been through this many times, discovering what our tummies like and suffering when we find something they don't.

I can imagine how much it hurts you feeling so useless, but sometimes you will have to be. As all of us on here can attest to, we had to fumble our way through the first few years all by ourselves. But we are all extremely grateful to those who care for us, even if all they do is send us virtual hugs and the occasional hilarious picture.

---> I.
Thanks, SilverSwimFish.

It has been extremely hard. She's not newly diagnosed, she's dealt with it several years - it just seems especially bad right now. I'm doing my best to giver her space and avoid pushing, while at the same time still let her know how much I love her. There isn't anything I wouldn't do if I could.

I am so grateful to have found a place to read up on many resources, and ask questions. If you ever feel like sharing any funny pictures and such that may have made you smile during rough times - these may be things I can pass along for awhile.
01-18-2012, 12:21 PM   #17
WhiteRose
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Join Date: Jan 2012
Location: British Columbia
I have only seen one person in my years of being on here no surgery because of allergy to the anaesthesia...

Can anyone put more information on here as to why she could NOT have surgery? Just wondering.
Really?

This certainly has me curious as well...
01-18-2012, 12:27 PM   #18
WhiteRose
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Join Date: Jan 2012
Location: British Columbia
yes, diet soda or soda itself is not a good choice. Read up on its lack of health benefits and perhaps that will enlighten her. I know digestive enzymes can also make the world of difference. She has to commit to getting better by making diet choices that work for her health, not against it. Baby steps...hope she feels better soon
I can't remember off hand if she takes digestive enzymes. I thought of that also. You are right, she has to want to get better. That's one of the most frustrating things. I refuse to give up. And, I have to have faith that this time of distance will not last forever.

Thanks again.
01-23-2012, 02:17 PM   #19
WhiteRose
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Join Date: Jan 2012
Location: British Columbia
My friend has had Crohn's for about 6 years. To my knowledge, since she was diagnosed a bad period like this one hasn't lasted this long. We're in month 3 right now. Although I've done reading, I've found a lot of resources quite indecisive. Is it uncommon for a bad flare to last this long or longer? Should I be concerned?

I'm trying not to ask my friend very much right now. Our conversations pretty much been "How are you?" and "I love you." With the response being "Love you, too." and "Not feeling well." Sometimes I'll send emails I think are funny, or cute and get "That was cute' I' just worry about how long this seems to be lasting this time. Perhaps I shouldn't be?
01-23-2012, 02:42 PM   #20
mickey
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Join Date: Dec 2011
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She has to make changes to see changes. Hopefully she is being aggressive with her docs or personal diet changes, and being good to herself. It is a tough battle and each person's battle is different. Hang in there!
01-23-2012, 03:10 PM   #21
chrisnsteph1022
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My current flare has lasted 14 months. Everyone is different. Some people flare for a few days, some for years at a time.
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dx 2003
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Moderate/severe flare through entire colon 12/2010-10/2012
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01-25-2012, 08:42 PM   #22
WhiteRose
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Would someone be willing to converse through private message? Rough few days.
01-25-2012, 08:50 PM   #23
Emily
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She is lucky to have such a caring friend, truly. I know that putting myself in her position is easy for me and I've been there. When I'm sick, I get tired of people and social interaction, and to add to it I become a bit ashamed/embarrassed of myself so I tend to get really introverted and be afraid to ask for stuff. It's not you! She is just having a really rough flare and social stuff can actually turn into a stressor when your so sick.

I think the best you can do at this time is to remind her how much you deeply care, and tell her that anything she ever needs, help, a hug, or a talk, you will be there in an instant. But otherwise tell her you will try to be less imposing since you don't want to bother her.
I'm sorry, it's such a complex situation so I'm having trouble describing what to say, but again, it likely is not you she's avoiding, it's probably just stuff in general. When I'm sick, all I want to do is curl up in a ball and have the world leave me alone till it gets better.

I hope this wasn't a ramble and I hope I sorta helped
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01-25-2012, 09:35 PM   #24
WhiteRose
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Join Date: Jan 2012
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Thanks, Emily.

It did help a bit. When you love someone so much it can be hard not to take things personally. I'm probably doing that to some extent. You are most likely right and things have very little to do with me right now. She has said very little to me, which is so unlike her and what she has said in response about some things hasn't made a lot of sense to me.

I have to keep reminding myself it isn't me. Then, sometimes I say things and immediately wonder if I shouldn't have. We all have people we are extremely close to. My friend is that person. I know she has to spend the majority of her time home sick right now and so, I might recommend movies or whatever hoping to offer something other than constantly talking about the disease or feeling sick.

I am grateful we still speak and we tell each other we love one another almost daily via messages. I don't know, I'm rambling now. It all feels so strange. She's been sick before but never held me at such a length. Intellectually, I understand people retreat. It's like she's a different person, though truly and I can't help but wonder if something else is happening.
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