Finally gotta own it -- I've got Crohn's

[SunshineGirl]

I was diagnosed back in 2007, but I haven't been acting like it.

Even though I've been hospitalized 4 times over the last few years (each visit at least a week long) I haven't been taking it seriously because I don't want to identify as "having a disease."

I don't always do the things I know I should.
I don't take care of my paperwork...
I don't keep records of my symptoms and hospitalizations and dr. appointments...
I don't take probiotics and enzymes regularly...
I don't always take the meds my dr. suggests...
I eat things I shouldn't sometimes...
I don't tell my doctor when my symptoms change...
I don't really respect my doctors...
I procrastinate on insurance things that makes it so I can't even SEE my doctors sometimes...

Basically, I've been a really terrible patient up until this point.

So that's why I'm here.

I want to know more about my condition and my body and what it needs in order to feel it's best.

I'm 37, I'm intelligent, I have plenty of loving people around me to support me, I know about nutrition and self-care. My life is wonderful!

But when it comes to all-things-Crohn's, I've had a HUGE BLOCK because at some level I don't want to believe that it's my issue.

But it is.

This body of mine definitely has Crohn's. The doctors have told me many times and the pics from the scopes all show it too and I can totally FEEL it.

Even today I feel the inflammation returning after a week without Prednisone. (Just followed the instructions for tapering after being put on it when I was in the hospital in Dec.)

So that's why I'm here on the forum today. If I don't start taking my dx seriously, I'm just going to keep flaring and keep going into the hospital, and keep worrying my loved ones...which is totally lame and totally preventable.

I want to find ways to deal with my Crohn's in an empowered way --- without scaring myself and letting the disease take over my life.

I want to find ways to take the supplements that I know can help me without being reminded every time that I take them that the reason I'm taking them is because I have Crohn's. Do you get what I mean?

So I would LOVE to hear from you all about how you do that.

How do you relate to your diagnosis in a healthy way?

I definitely need help in this area and (in this moment!) I feel willing to learn.

Thanks for being here. I'm glad to be here too. :hug:

 

[Sybil Vane]

Hi SunshineGirl! I love your name. Welcome to the forum! It sounds like you're ready to get this beast under control. Is your doctor recommending a medication to help you get into remission like Imuran or Remicade? I cope by writing about it and talking about it. This Forum is absolutely wonderful and helps you feel connected to the only other people in the world who know exactly what you're going through. Everyone here is generous with advice and suggestions and experiences are so varied that you can find help in alternative therapies, medications, symptom control, diet, and on and on.

It's nice to meet you and I'm sure I'll be "seeing" you around!

 

[Guest2383]

I was diagnosed back in 2007, but I haven't been acting like it.

Even though I've been hospitalized 4 times over the last few years (each visit at least a week long) I haven't been taking it seriously because I don't want to identify as "having a disease."

I don't always do the things I know I should.
I don't take care of my paperwork...
I don't keep records of my symptoms and hospitalizations and dr. appointments...
I don't take probiotics and enzymes regularly...
I don't always take the meds my dr. suggests...
I eat things I shouldn't sometimes...
I don't tell my doctor when my symptoms change...
I don't really respect my doctors...
I procrastinate on insurance things that makes it so I can't even SEE my doctors sometimes...

Basically, I've been a really terrible patient up until this point.

So that's why I'm here.

I want to know more about my condition and my body and what it needs in order to feel it's best.

I'm 37, I'm intelligent, I have plenty of loving people around me to support me, I know about nutrition and self-care. My life is wonderful!

But when it comes to all-things-Crohn's, I've had a HUGE BLOCK because at some level I don't want to believe that it's my issue.

But it is.

This body of mine definitely has Crohn's. The doctors have told me many times and the pics from the scopes all show it too and I can totally FEEL it.

Even today I feel the inflammation returning after a week without Prednisone. (Just followed the instructions for tapering after being put on it when I was in the hospital in Dec.)

So that's why I'm here on the forum today. If I don't start taking my dx seriously, I'm just going to keep flaring and keep going into the hospital, and keep worrying my loved ones...which is totally lame and totally preventable.

I want to find ways to deal with my Crohn's in an empowered way --- without scaring myself and letting the disease take over my life.

I want to find ways to take the supplements that I know can help me without being reminded every time that I take them that the reason I'm taking them is because I have Crohn's. Do you get what I mean?

So I would LOVE to hear from you all about how you do that.

How do you relate to your diagnosis in a healthy way?

I definitely need help in this area and (in this moment!) I feel willing to learn.

Thanks for being here. I'm glad to be here too. :hug:

Hello sunshineGirl,
I think that you have expressed what most of us have experienced from time! to time. All I can say is that it is very much an individual thing as to how we come to terms with this debilitating condition.

As much as I detest being the way that I am, With time I have learnt to live my life around the problem. I am much older than you and have minimal expectations that life will ever return to 'normal' , but there is little or anything that I can do apart from being realistic about what I can and cannot do.

Looking on the bright side yes there is always that aspect, Crohn's has occasionally provided the perfect alibi to avoid people and situations that I did not wish to become involved with!!

I do share your mistrust of the medical profession. After years of being comprehensively buggered around by the gurus of gut, I am probably as non- compliant as your good self!

There is nothing wrong with a little magical thinking, children often cover their eyes to pretend that because they cannot see the the object which perturbs them -then is no longer there!! As adults , we are also prone to get into a state of denial which is quite understandable.

At days end, this problem will not go away, but whatever you do don't loose your sense of humour. We are important people who keep the medical profession, pharmaceutical companies, plumbers[toilets] and toilet paper manufacturers in full time work!

Key to living with CD is to avoid or at least minimize stress factors at all costs, otherwise you will end up with both the literal and figurative sh..ts!!!
Just remember that you are now part of an elite sister/brotherhood!
:wink:

 

[jasonesque]

Hey SG,

I am almost 45, and have been the same way. Didn't even see a Dr. For a bit longer than a decade and only gave in because of the seriousness of my attack last spring. I too have reconciled with it, and now know that I was not giving it enough credit.

Anyway, a year later I'm just trying to be as informed as possible, as interactive with my Docs as possible and asking for help and guidance. Generally speaking, I'm now happy-er with life and my treatment.

Anyway, good luck and if I can be of any assistance, say the word!

 

[SunshineGirl]

Hi SunshineGirl! I love your name. Welcome to the forum! It sounds like you're ready to get this beast under control. Is your doctor recommending a medication to help you get into remission like Imuran or Remicade?

@Sybil Vane: Thank you. Yes, when I was first dx'd I was immediately put on Remicade and had a miraculous turn around. It worked really well for me for a year and then insurance issues required that I stop. When I got that figured out again, I resumed Remicade after another flare up during the Remicade gap.

Then another year went by and coverage issues came up again. This time by the time I got things figured out, Remicade did not work as well as it has been previously. Tried to pair it with 6MP, but that didn't help. Tested to see if I had developed anti-bodies, but I hadn't.

Coverage lapsed again and now I am where I am now with sore insides today and no medication right now. (Tapered of Pred. last week.) Doc wants to try Remicade one more time at the highest dose and every 6 weeks to give it one last chance at working before going to Humira.

There is nothing wrong with a little magical thinking, children often cover their eyes to pretend that because they cannot see the the object which perturbs them -then is no longer there!! As adults , we are also prone to get into a state of denial which is quite understandable.

At days end, this problem will not go away, but whatever you do don't loose your sense of humour. We are important people who keep the medical profession, pharmaceutical companies, plumbers[toilets] and toilet paper manufacturers in full time work!

Key to living with CD is to avoid or at least minimize stress factors at all costs, otherwise you will end up with both the literal and figurative sh..ts!!!
Just remember that you are now part of an elite sister/brotherhood!

@Merv: Thank you for the above. I definitely play the little kid magical thinking game. Actually, since I like it so much, I would love to find a way to be playful about my condition so that I can still be whimsical about things and not have things get so heavy and serious feeling. Hmmm.

Play wasn't always important to me, but once I realized the other point you brought up about stress, I realized that I had to keep myself happy to avoid flares. So I have to keep playing and keep things lighthearted and just writing this to you is shining some light on how my avoidance of the Crohn's is partly an attempt to not bum myself out!

So I gotta find a way to keep playing and also take care of myself sweet little insides without it getting serious and stressful. Good insight for me, thanks for helping to bring it out, Merv!

I am almost 45, and have been the same way. Didn't even see a Dr. For a bit longer than a decade and only gave in because of the seriousness of my attack last spring. I too have reconciled with it, and now know that I was not giving it enough credit.

Anyway, a year later I'm just trying to be as informed as possible, as interactive with my Docs as possible and asking for help and guidance. Generally speaking, I'm now happy-er with life and my treatment.

Anyway, good luck and if I can be of any assistance, say the word!

@Jasonesque: Thanks so much. I guess we all reach a point where we decide to finally do something about it, right? That's how change has happened for me in the past with other non-health related issues too, so that's reassuring to remember. Really glad to hear you're feeling happy with things lately - that's a real gift! I love happiness.

 

[Sybil Vane]

Sounds like my GI! He would not let me give up Remicade. I was on it for three years and have been on Humira for a year now. I agree with giving it all you have, but it stopped working for me, too. I do like the freedom that comes with Humira, though. It's been the most helpful drug for me so far. I'll keep my fingers crossed that this next Remicade dose helps and that insurance stops messing around with you!

 

[SunshineGirl]

Sounds like my GI! He would not let me give up Remicade. I was on it for three years and have been on Humira for a year now. I agree with giving it all you have, but it stopped working for me, too. I do like the freedom that comes with Humira, though. It's been the most helpful drug for me so far. I'll keep my fingers crossed that this next Remicade dose helps and that insurance stops messing around with you!

When I think about starting a new med, honestly I just wanna stick my head in the sand. I don't want to learn anything about it and have to read about all the bad things that could happen with it (side effects.)

So I'm in this place of either just taking it blindly without researching it (like how it went with Remicade) or I don't want to take it at all.

<sigh> I thought I was doing better with the idea of being an educated patient, but in this moment, now I wanna go back to la la land.

I'll try to give myself a break around this and let it come in time. I've got some big walls built up around all this and it might take a bit to get through without hurting myself.

Glad Humira is working for you, Sybil. Thanks for connecting with me. :hug:

 

[Sybil Vane]

Sometimes over-researching is not a good thing, either. You can get on the internet and really scare yourself. Ask your doctor and pharmacist questions. Maybe Googling these treatments online isn't good for you at this point.

I also highly recommend counseling. It sounds like you need to talk to someone about this and need help putting everything into perspective. Crohn's doesn't have to own you--you can find a middle balance where you take your meds and go to your appointments and reach remission. A counselor or psychologist can help you deal with the stresses of chronic illness. I know that some specialize in exactly that.

Big hugs!!

 

[SunshineGirl]

Sometimes over-researching is not a good thing, either. You can get on the internet and really scare yourself. Ask your doctor and pharmacist questions. Maybe Googling these treatments online isn't good for you at this point.

I also highly recommend counseling. It sounds like you need to talk to someone about this and need help putting everything into perspective. Crohn's doesn't have to own you--you can find a middle balance where you take your meds and go to your appointments and reach remission. A counselor or psychologist can help you deal with the stresses of chronic illness. I know that some specialize in exactly that.

Big hugs!!

Yeah, thanks. I'm not gonna research it now. And I will give some consideration to finding someone to talk to. Just the words remission and chronic illness make me wanna run for the hills. This is *not* supposed to be what I have to deal with. (But, hello, it is!!) It's butting up against my idea of what my life is supposed to deal with and I'm having a hard time accepting it. Definitely need some fresh perspectives.

That being said, last night I did take my supplements, so I took a little baby step. in the right direction.

Which of the sub-forums within Crohn's Forum would you recommend for people who are supporting each other with acceptance and the stuff that I'm talking about? Is there one that focused on it a bit more?

 

[Sybil Vane]

There are subforums to ask specific questions or talk about specific therapies, but if you go to General IBD Discussion, that would be a good place to start. There's also a "vent" thread where you can just let it all out and get some much-needed hugs. I hope this helps!