Give up & accept? Is this the answer?

[SupportiveMom]

Last night I spoke to a friend about the roller coaster my kid has dealt with relations to crohns. She has had it since she was a teen, her kid has it too. She is a great wealth of knowledge and support.

Last night she said something discouraging. She said all of us with Crohns just have to suck it up and accept there is no cure, and life will never be normal so if you get 2 days or 2 years of remission you should just accept it for all it is.

I refuse to take that stance and will fight to my dying day but I understand why she would say it. I think there is an acceptance we all have to face. My question to my fellow crohnies is When do you just accept that this is the way Crohns has made your health, your life? Do you ever settle for the health you have or do you chose not to accept?

 

[Aiyale]

Hi SupportiveMom,
I'm newly diagnosed and I'm still struggling with the thought that I'm "sick". I have moments where I'm at lunch, or with friends and I have to remind myself "Oh yes, I can't eat this because I have Crohn's" or "I can't go here because there's no bathroom" or whichever. And I hate that it's considered "CHRONIC" because it makes me feel as if I will have to deal with this forever.
One thing I keep stressing to myself, my family, and even my doctor is that remission is one step closer to cured. And right now I'm fighting for remission. Once I get that, I will focus on a permanent remission. I refuse to accept that my life will be forever affected by this illness. I agree with your friend that we do have to accept life for what it is, but I don't agree that you can't hope to make it better. Especially as a parent I know it's hard to imagine that you could give up on looking for a cure for your daughter and others like her.
Hope this helps Don't give up! :heart:

 

[FrozenGirl]

In all honesty, I will fight for a quality of life but I'm not holding out for a cure. I really hope there is one but I have accepted that it might not happen in my life time (and I'm young). For me a cure is an idea that just seems so amazing and awesome but I have to live in the here and now. For me focusing on a cure isn't accepting my current circumstances and I roll into a depression when I think of "waiting" for a cure.

I think it varies by person. Some people see it as a shining light of hope to keep going and others see it as an idea to create hope that fails when it doesn't happen.

It's hard to articulate why I feel that way but I suspect your friend may have similar thoughts.

 

[Cat-a-Tonic]

SupportiveMom, when I first got sick, I was really down in the dumps. At that time, a wise person told me that I'm still young and that there may very well be a cure within my lifetime. If you need some hope, just look at the stem cell threads, the MAP vaccine threads, etc. They're making a lot of headway towards new treatments at the very least, and hopefully one of those will lead to a cure. I'm 35 and I'm hopeful of that. Your daughter is very young, and at the very least there will be more and better treatments coming along within her lifetime, and hopefully a cure as well.

So long story short, for me I do accept that it's a life-long illness but I also recognize that there are a lot of exciting developments happening with IBD research and treatments and those can only lead to bigger and better things! Yes, at the current time I have to accept that my health is what it is and I have to accept the limited treatment options that I have, but that doesn't mean it'll always be this way even though my condition is chronic. Maybe I'm in denial, but I prefer to think that I'm cautiously optimistic instead.

 

[rollinstone]

I think there's definitely going to be a cure, as said above, there are already people that have been cured by stem cell transplant, it's a very brutal treatment, but there are other cases where people have remained 100% well even on anti-map therapy, or the ssi vaccine even. What people need to realise is crohns is a diagnosis made from idiopathic intestinal inflammation, it very likely has multiple causes, just like there are various bugs that can cause pnuemonia (excuse me if that's spelled incorrectly).

With all that said, I can understand why she is so jaded though if she has had it since a teen, but if you're reading this, don't give up hope for your kid or yourself, "crohn's" will be cured in the near future.

 

[Pilgrim]

I went through all the "stages" and got to acceptance for my daughter. So, we went to her GI this week and I was discussing getting an IEP for school when she starts next year to cover her limitations.

Guess what? They told me not to. They said there is no reason she shouldn't try to do everything the other kids do and she might get more tired or whatever but so be it. The overall opinion was that you work hard for normalcy. If something is wrong then it needs to be addressed medically and not by giving up.

I loved the wake up call. I will accept that she is having a tough day or spell, but no reason to enshrine it as something that is forever. It will be interesting to see how she handles it.

I had to fill out a form while at the GI about how she is feeling. At the end they wanted a percentage (as in 0% is terrible and 100% is perfectly awesome) she looked at me (she's 4) and said 100%. I thought no way kid, you don't even know what 100% feels like. I wrote down 75%. Then the nurse comes back in, reads the sheet, and asked me if my daughter said 75%. I said no, actually, she said 100% but she doesn't know any better. The nurse crossed it out and put 100%. Because guess what? Normal does change and that's ok too, but to her it feels like 100%. I'm still thinking about all of that, but I think it's relevant.

 

[Aiyale]

I had to fill out a form while at the GI about how she is feeling. At the end they wanted a percentage (as in 0% is terrible and 100% is perfectly awesome) she looked at me (she's 4) and said 100%. I thought no way kid, you don't even know what 100% feels like. I wrote down 75%. Then the nurse comes back in, reads the sheet, and asked me if my daughter said 75%. I said no, actually, she said 100% but she doesn't know any better. The nurse crossed it out and put 100%. Because guess what? Normal does change and that's ok too, but to her it feels like 100%. I'm still thinking about all of that, but I think it's relevant.

That just made my day. :applause:

 

[SupportiveMom]

I hope there is a cure one day. I believe there will be. My issues always stem from the "quality of life" crohn's gives us. When do you accept you just aren't going to get any better than where you are now? Do you ever have that attitude?

My kid has had a horrible roller coaster but never knew what remission felt like. We just assumed it was some fantasy created by Disney & never would she see it. That was until last October. FOUR months of not having crohns dictate where you go & what you do. Being able to go to a movie without leaving 1-2x in a 2 hr span, actually going on trips you had crossed off with long car trips because it just adds too much time to the travel with so many stops. Going to areas that didn't have bathrooms easily accessible. In 2.5 years these were things we gave up and thought she would never enjoy again. remission showed her what we all were missing.

I am not willing to give up on achieving remission. Maybe getting to remission won't be the journey I want, but we have to get there, and it has to last longer than 6 months!

 

[Pilgrim]

Yes, SupportiveMom I think you've got it right. Maybe it's a new med you're not sure about, or a fecal transplant, or surgery. But she needs to have what she is missing in her life. It is one heck of a road, though.

Good thing she has your support and fight to prop her up.

 

[UnXmas]

This is a post I wrote to someone on another thread earlier today. Not about Crohn's as I have other medical problems so my situation is different, but it's how I feel about my illnesses now:

One thing I found helped was a change in my mindset. Instead of trying and trying to get healthy and live a normal life, I accepted being ill. I have a progressive genetic condition, so my health is continuously deteriorating. A few years ago, I gave up all attempts of being normal, accepted my parents were going to be my carers, that I was never going to be able to have children or be able to work, and it was such a relief. I wasn't constantly trying and failing anymore. I'm still always looking for treatments that may help any of my physical symptoms, but no longer with the sense of desperation that I had had previously, when I felt I had to get healthier in order to have a life.

I don't know if this mindset would work just with the Crohn's. Crohn's is treatable and can go into remission, and it isn't progressive like my other health problems. But maybe if there's ever another time you're thinking about an overdose, you could try telling yourself, "or I could live with the pain". I know that sounds counterintuitive, but when you're constantly wanting pain to stop and all medical treatments have failed to make the pain go away, then those desperate ideas of ending it can seem the only option. If you can manage to stop wishing for the pain to end then you won't turn death as the only available escape from it - you won't need to escape. And instead you may be able to focus on the things you can do and enjoy despite the pain. If nothing seems enjoyable, you can focus on things you could do for other people, and maybe find you can help others despite being ill and in pain. I've a feeling I'm not explaining this very well. But it was antidepressants that brought about this change in my way of thinking.

 

[SupportiveMom]

Very valuable. Thanks unxmas

 

[buttER]

I think it is a very mature attitude. Sick or not, we all expect or hope our lives to be perfect because that is what is portrayed nearly everywhere we look. It doesn't hurt to be more realistic - maybe then it is easier to be happier with what we do have, even if it isn't what we really want.

 

[lenny]

We're not religious at all, but after watching my son suffer off and on for about a year and a half, I told him that we don't live in America anymore. We live in the land called Heck. Heck, has pieces of hell in it, but it ISN'T hell. Hell is bad all the time, where Heck is not bad all the time and we need to grab what happiness Heck has to offer. We can watch movies, travel, eat delicious food (sometimes) and ride our bikes all over the city, when he feels up to it. It's not a perfect life, but there are good parts.

We both have a lot of hope for a cure. We believe in science. We'd like to move back to America, of course.

 

[shamrock15]

Accept yes, give up, never!
I think it is a learned attitude, and it cost me about 10 years to realize that the only way that I was going to get anything out of life with crohn's was to make it happen. Remicade didn't exist for the first 15 years that I had it, and it resulted in a lot of damage and surgery. Some of the damage will be with me for the rest of my life (wish the same could be said for a lot of the bowel!)

I likewise do believe that there will be a cure in my lifetime. The huge advances in treatment give me a lot of hope. There are many crohnies out there now who may never have to learn what a resection is because of the medications that exist. I do think one needs to accept the condition that you have in order to deal with the day to day management. Never give up on living a good life. Lots of people who are healthy still cannot live a good life for any number of reasons. Don't let crohn's get in the way of important things.