How do you do it?

Hi,
I was recently diagnosed with Crohn's at the first of the year. I've had excruciating back pain for a very long time so to have an answer was a relief to me. However, the disease is a bit more complicated to deal with then I originally thought. The last few months I've gone though phases of eating very little because I didn't want to get sick, or eating mostly carbs because high fiber is my trigger, or most recently this weekend started the specific carb diet. By the way, my try at baking almond bread tonight was an epic fail.

One of the things I've found most difficult is how to talk about the disease with your family, friends, and coworkers. I'm lucky to have supportive people around me and a wonderful husband; however, someone who talks about their disease all the time is no fun to be around. I could not talk about it at all except anytime someone sees me eat they are full of questions (because I'm not eating or can't eat that). Plus all the bathroom breaks get people wondering too. So I've been very open about it but that might not have been the best idea either. I feel like the sickly one everyone is eyeballing now. I've been in so much pain for so long I'm finding myself beaten down and not ready to give this disease a good fight. I would love to hear how you manage your spirits and talk about your disease to those around you.

Welcome Leslie! This is a wonderful forum to belong to. When I first joined I received warm welcomes and lots of support and kind words. As you know CD is not an easy disease to live with. I have my share of ups and downs with my family and co-workers as well. My parents have two children with CD (my brother and I) and they are familiar with the disease. My parents have developed more empathy throughout the years. My mother and father have both seen me at my worst and have had to run me to the ER several times. Some of my other family members seem to treat me with silent contempt. If the vibes that I receive from them were verbalized it would probably sound like, "There she goes again. I don't think she's really sick. She doesn't look sick." At work my situation is similar to the reactions that I get with my family, some supportive, others watching me with disbelief.

I am thankful to have found this forum and to have met so many wonderful and understanding people here. When I was first diagnosed, I often felt all alone and even scared. I used to worry about my quality of life. My advice is to give your loved ones the facts. If you can give them some reading material, so much the better. Don't apologize, as you did nothing to deserve this disease, and you don't need to apologize for suffering, even when you complain from the pain. Seek out a support group whether it is local, this forum, another forum, or all of the above. Find some hobbies that you really enjoy. Mine is beading. I am a mother of two small children, so the beading is taking a back seat for now. LOL! Hugs to you.

Hi Leslie :bigwave: Andi is right, you will get support here because we are all in the same boat. Some are more severe than others but true to saying too much and open, is who I am. Outsiders dont understand or dont want to, but your family needs to understand. Have a good book for them to read is important so they know it isnt a temporary thing. Yes, some lose friends along the way but then again you havent lost a friend who really isnt a friend to begin with. It is hard to deal with in a flare, but the best thing is knowledge and listen to your body. Day by Day is how I go. 20 years of this can be harder at times but when you have a good day, enjoy it. Take care, let us know how you get on ok? We care!

I got Crohn's very young so I grew up not telling people about it (imagine explaining to your 7 year old school friends why you've been off school for 6 months haha) so I now still don't talk about it, mainly out of not learning to talk about it. Only my family, friends and boyfriend know. Some people probably think that's sad and that I should talk about it more but like you said someone who talks about it all the time is indeed no fun. I'd be worried about sounding whiney and annoying haah. I had a small flare up a few weeks ago and just told people I was ill, I didn't mention Crohn's, because when I'm actually well I can pretend I don't have Crohn's and it's a nice feeling to forget I have an illness (obviously, I remember when I take my meds) and not have people thinking you're "ill".

However, my mum has ulcerative colitis so she understands me completely and we talk about it a lot. Most people don't have this though, so it's important to have someone to talk to who is sympathetic and kind. My boyfriend is very supportive too, but again I don't like talking about it too much with him as I don't want him to view me as an "ill" person.

I hope you have someone you can talk and confide in, though. and if not, you have this forum
xxxxxxx

Hi Leslie
and welcome

You're a new Crohnie, so it will be hard at the mo, but in time you'll be able to manage, as in, people's reactions, work colleagues, family get togethers etc.
Remember this tho, you don't have to justify anything, what you've got, who you are, what you do, this is your business, no one else's. Think of a one liner to tell co workers, such as, 'I'm inflamed and irritated, I need a minute alone, thanks'
I'm at that stage now where I can make jokes about my condition, this helps me in lots of ways, it takes the seriousness away and reassures work colleagues. And that's without dissing this disease. It still requires some respect!
One day you'll get there too!
In the meantime, lean on us!
lotsa luv
Joan xxx

Welcome, Leslie!

I can empathize with what you are going through. I was diagnosed a little over a year ago, starting with a hospitalization on New Year's Eve. I suffered with a lot of back pain before then too.

When I was diagnosed, I found that I wanted to talk about it more to understand it and most of my friends (who live in different states than me since my husband and I moved after we got married) didn't seem to understand much about it and therefore didn't ask questions. I, like you, didn't want to offer out more information than they wanted to hear. Unfortunately, I was left feeling like people didn't really care about what I was going through. With the exception of both my husband and parents who were worried sick about me. Finding this forum was one of the best things to happen to me after my diagnosis. I found I could talk about ANYTHING on here and receive genuine support and feedback about what I was going through.

Welcome!

I am a firm believer that it is best just to be honest with everyone about what you are going through. It doesn’t mean that you have to be Debbie downer all of the time!

When I was a teenager, I kept my disease hidden as best I could, but people knew something was wrong. I ate funny, I lost a ton of weight, and I missed school. Ultimately, my secret made me feel like an outsider, and made everyone else felt like I was hiding something (which I was). Pretending to be just like everyone else really just made me feel even more alone in the end.

As an adult, I have learned that if you are just strait with people and act like it is not a big deal, just a part of your life, than that really helps people to understand you.
I went through having an ostomy last year, and I decided to be very open about it. That doesn’t mean I talked about it all of the time, but people knew. No one treated me differently, and I think it helped them to be more understanding of me when I couldn’t simply act normal.

I really feel like shame should be reserved for things that you have done wrong, and my disease is not my fault, so why should I feel bad about it or be embarrassed about it? Everyone has something that is not so perfect in their lives. Pretending to be perfect is a waste of time.

I do find it difficult to make people understand what crohns is really like, especially the exhaustion that I sometimes feel (it just doesn’t seem like a real symptom to some people so they don’t get why you can’t just hang out, clean you house, exercise more…), but I know that the people that love me do their best, it is just impossible to fully understand something you have never experienced.

That is what this forum is for! I can’t tell you how many times I have read something on here and gone, “yes! That is exactly what it feels like for me! I can’t believe that someone else knows what this is like!” It is a really great comfort, when this disease sometimes makes you feel like you are just being lazy or that you did something to cause your symptoms. Or you are just feeling alone. It is vindicating to hear your own thoughts come out of someone else’s brain!

I think the best thing you can do is just stay as positive as possible, no matter what life throws at you. Easier said than done, but really, you decide how you are going to react to a situation, and the people in your life will take their cues from you.

Welcome

Hi, Leslie!
You are a bit down at the moment, a bit overwhelmed (so understandable) and have no idea how you could possibly have a life with this disease. How'd I do? If those are your feelings, welcome to the club! I have been looking for the refund window for 26 years as I do not recall buying the ticket for this ride! But like an old pair of slippers, you get accustomed to the fit, it just takes time. You have to find what works for you as each & every one of us is different.

As for telling people, I'm like Pen. I am very open, but that's me. If people ask, I tell them. When anyone finds out about something like this of course at first it consumes their life. You're just learning the ropes. Does a baby stop to think about if they are consumed by the act of learning how to walk? No. I think it is along the same lines here. When you first reach a diagnosis, it is so new & scary that it is natural for it to take over a bit. You will find your balance. Cut yourself some slack, okay?

This is a wonderful place to come to just to let it all out. Some wonderful people that have helped me through some VERY rough times (not just Crohn's related either).

Take care,
Michele

Hi Leslie,
I was diagnosed a few years ago and I swore to myself then that this disease was not going to take over my life. Unfortunately, it seems to now have, at least for the moment. I have so many new symptoms that I never had before, this disease is now consuming my every thought. I feel too that I have become a downer even though I try so hard to not let it happen. It is so hard sometimes. As far as others, I use to be able to hide my pain very well, but I can't hide it as much anymore, nor can I hide it from the one that I love. He has been so supportive, but I am afraid that one day he will have enough and move on. I pray that never happens, so I try really hard every day, pain or not just to try and enjoy the time that I have with him, because he is my strength and the one who truly keeps me going.

You have found a great forum here with many supportive people that I have talked with. I am so thankful that I have found myself here amongst all of this support to be able to vent when I need too.

Try and keep your spirits up, and when you need to vent, don't hesitate to vent here with all of us.

Margie

Hi Leslie and welcome!

As you can see from all the posts above, we all find ways of dealing with it and talking about it in our own way. I'm like Joan - I deal with humor most times. And I am surrounded by amazing people who always want to know how I am doing - sometimes I don't want to talk about it and people make me give them an update!

You'll find your way as you get more comfortable with accepting the disease and all of its challenges.

What meds are you on currently? You'll find lots of information and advice here about everything from meds to food to pooping your pants!

Hang in there and enjoy making new friends around the forum!

-Amy