Does anyone here live a good life?

I think it's important to remember that the sicker people tend to post here. People with mild cases are probably off living life and not worrying too much about their medical diagnoses.

My life is not the one I imagined for myself before my diagnosis (at age 16; I'm in my mid-30s now). There's a lot about me that's better for having been very sick. I'm gentler and kinder and less driven; I've had time to explore other interests and am less driven & distracted by the rat-race than I might have been, had I stayed healthy. That said, I've found it hard to maintain friendships and haven't had a romantic relationship yet :-(, and I yearn to be able to do some silly and fun things, whether it's backpacking across Europe, or just having a night out without paying for it, physically, for weeks.

My advice would be to help your youngster to maintain relationships, whether by giving lifts to social events, or by giving lots and lots of support and encouragement, because dealing with big issues like illness really can distance a child / young adult from her healthier peers, who tend to be preoccupied with different issues. I'd also encourage you to help her develop lots of independence skills, whether learning to drive, or developing skills and gaining qualifications that she can use for more home-based or sedentary jobs, just in case she is sick as an adult and needs to find some way to earn an income.

She may end up growing up happier and healthier than many of the people here, and I hope she does. But helping her prepare extra skills, just in case, will help her in her future life, no matter how sick or healthy she turns out to be.

Hope this helps.

Ivy.

Everyone is diffent but my quality of life, although VERY different pre-dx is a good life. So many people have it worse than me(Crohn's or no Crohn's) and I just remind myself that. I can't do martial arts right now due to my disease activity, I can't go out to eat with my friends a lot or go to highschool football games like a regular teenager sometimes but I'm so blessed to have this disease! I have found out who my real friends are! One of my friends even wrapped my gift up for chrismas in Scott Toilet paper because she knew I loved that brand and it would make me smile :) Sometimes you just have to find the positive in the negative!

I'll be praying for your family! Things that will help your son feel 'normal' are letting him go to sleepovers, hang out with friends as much as you can allow him(just make sure he brings his medication & back up pain medication), let him experiment with food when he isn't too ill and allow him to do chores. Sounds weird but I hate when people baby me and think I'm incapable of doing something simple like fold laundry!

       At times, I do. But I also have other issues too. Fortunately, I haven't had a MAJOR Flare since 2004, so there is that. I've had minor ones, CD related arthritis & kidneystones though.

      Like anything else in life (mine anyway) its up & down.

          Sincerely,   

                       Matthew

                                                                              

It's as I say to newly-diagnosed Crohn's patients who post here: this board isn't really representative of the average Crohn's patient. Medical forums tend to be self-selecting towards chronically severe cases. Not that folks with milder disease never post; they do, but in general if your disease isn't giving you much trouble there isn't much of a reason to seek out websites and forums about it. I can categorically say that in the days when my disease was mild, it wouldn't have occurred to me to join a Crohn's forum.

Meanwhile, my brother has Crohn's as well (different to mine in that his is more UC-like). He's had it for slightly longer than I have (about 13 or 14 years) and he's led an entirely normal life: worked full time, had 2 children, plays sports, eats what he likes. I also had a cousin with Crohn's who led an active and busy life the majority of the time. (I say 'had' because, er, somewhat tragically she died of cancer a few years ago.)

Me, my quality of life is poor at the moment, no bones about it. But despite everything, I don't think I was any happier or more content in the days when I had full health. I wouldn't wish pain and feeling sick on anybody; but I think it can sometimes force a more thoughtful perspective on life.

Sorry, my post is probably all over the place; I'm still a bit groggy from a very bad attack. At any rate, I think ivy makes a sound point about teaching your daughter independence skills. Those would be useful regardless of your daughter became iller or not (I hope not).

I have a great life. I have a loving family, good friends, a great job and an active social life. Yes I'm on Remicade and Methotrexate but my Crohns & other autoimmune issues are fairly mild and very atypical. You can't let this or any other illness define who you are. You need to adapt so you can still maintain some sort of life. Is my life the same as it was before I sick? No it's not but I'm living the life I have now to the fullest.

Crohns is horrible as long as it is flaring and bubbling away....
Once it settles, life is better than ever! There is plenty of hope.

(Ivy and others in the same boat, it breaks my heart to hear that you've had this since mid teens and so have not had a chance of a proper romantic relationship yet. You are still very young, and will certainly have it all one day. May you all get well enough to drive your partners mad as you are supposed to do! You have all suffered too much. Oh yeah, and vice versa for the young gents for sure!)

I have been diagnosed with CD for 10 years and I am in the moderate to severe category but have thus far led a pretty normal life. I have my days when I am just plain exhausted and every joint in my body is hurting but I have more days that I have normal energy. I was able to have 2 beautiful children, am able to work full time and work out regularly and feel lucky to be able to do so. As someone else posted there are many others that have not had things go as well as I have so am thankful for each good day. I try to stay as positive as possible but there are days when I get really tired of this stupid disease. I think everyone has those days but overall I feel like I am able to live my life well. The good new is that there is more known and more new medications available to the younger generation of CDers and hopefully more to come.

I could say at the moment, that CD is not my major problem. My Osteoarthritis is. Oh, I cannot say I have 100% remission from the IBD, I still bleed a bit from somewhere & might be a tad anemic. But back & joint pain are moe major issues. Its entirely possible, too, that treatment(s) for Osteo pain is masking some of the Crohn's symptoms.
Even so, I try to walk 10-15 miles a week. And Bicycle when I can.
I've even gone caving a couple of times, too! I'd say it doesn't have to control your entire life.

Matthew

ivy6 said...

My life is not the one I imagined for myself before my diagnosis (at age 16; I'm in my mid-30s now). There's a lot about me that's better for having been very sick. I'm gentler and kinder and less driven; I've had time to explore other interests and am less driven & distracted by the rat-race than I might have been, had I stayed healthy. That said, I've found it hard to maintain friendships and haven't had a romantic relationship yet :-(, and I yearn to be able to do some silly and fun things, whether it's backpacking across Europe, or just having a night out without paying for it, physically, for weeks.

Ivy.

How can you say part of you it's better. There's MANY other ways to better yourself that to be stricken by a disease. Look at the all the stuff this disease has taken from you, friendships, romantic relationships, the fun things you want to do.

People always try to find positive things even in the most negative of situations. There is no positive in a chronic disease. It's all a misery. I have U.C. , I know my situation, I hate it, I do work around it, but I find ABSOLUTELY NOTHING positive about this stupid situation.

And that last post from gardener. That lady that's bed stricken from Chronic Fatigue and needs to be fed by a spoon. That is called a life!?

I guess is live and let live, if she wants to call that a fulfilling life, by all means. I'll have to disagree.

What really needs to happen is for scientists to find cures. Too bad these chronic illnesses aren't contagious. Oh man, you'd see how fast they find a cures then...trust me.

I think it's partly down to temperament how well you cope with a chronic disease. Other things, like quality of medical care, family and friends, and so on, may be a massive help (or hindrance), but they probably won't alter your fundamental outlook.

Personally, I'm sympathetic to negativity, partly because I have been there and partly because I don't like the moral pressure to always be thinking positively. That said, never-ending negativity is debilitating. Nowadays I try to strike a balance. I have my bleak days still - the return to a liquid diet and the prospect of a likely, if not yet certain, ileostomy, does not fill me with joy, plus I'm scared of never being able to eat normally again. That takes its toll. But in between the bleak moments, I enjoy the respites. They do seem sweeter for the struggle.

But yeah; if I could not have Crohn's, I would do so in a heartbeat. Been an interesting experience in some ways, but 'interesting' can only take you so far. I just want a massive hamburger and salad again.

NiceCupOfTea said...


...., but they probably won't alter your fundamental outlook.
.

Yes, like Ivy mentioned, I don't adhere to look on the positive side of a chronic disease.


False positives can cast a vale on the reality of your life.

Let's use this fictitious example of false positives:


-I am healthy, I can eat/do/have what I want.

-I am healthy, but I get tired easily. I can eat/do/have what I want most of the time, but at least I can do it (false positive starts)

-I am healthy most of the time, I do eat/do/have what I want some of the time, but I try to focus on what I do in that moment (false positive deepens)

-I am sick most of time, I can't eat/do/have what I want most of time, but...hey, I manage (false positive)

- I am very sick, I can't eat/do/have what I want almost all time, but I have my family, it makes me feel good (what!? what does that positive have to do with your current situation. You family was always there. (false positive.)

Moral of the story, is false positives are seeing the bright side of a potential no positive situation. I don't buy those. I'm a realist.

I'm not sure what your Crohn's assn does over there, Dude, but here they tend to make a lot of fuss about how people with IBD can live a normal life, and then run around asking for donations and funding for medications and more research. I agree with you. If you want help and support and understanding, then you need to give people a full understanding of the situation, rather than a sugar-coated one.

Grrrrr.



Ivy, hot, bothered, and increasingly grumpy.