Fact that I have a chronic illness just hit me

[uab grad student]

Thanks everyone for answering questions and the support in response to my post in "Your story". Went to doc today and I came out of there a little less optimistic than that post. :depressed:

Crazy how my mood could just change like that... Last week I was so positive, just glad I finally got a diagnosis. This week, it hit me that my diagnosis is for a disease I'll not be cured of.

I thought I had a milder case of Crohn's, I'm tough, and I will fight this like everything. Today, I came out feeling like my insides hate me, where did all this scar tissue come from?! (they couldn't get scope into small intestine but could get biopsy needle in, so I guess it is smaller.. says I'm in danger of ileum closing to), and God I hope I don't have to have surgery! Doc had called me in a prescription for entocort, 9 mg/day, to hold me over the Christmas holiday and I thought that would actually probably be my permanent med. Today, I went in as a followup since the past couple weeks have been many tests--colonoscopy, biopsy, and that wonderful stool sample (lol). My meds were changed--now on entocort (9 mg daily) in addition to Humira (had my first 4 shots today, then do the 2 shots in a couple weeks, then down to 1 every other week).

I had originally wanted some pain meds since I feel like someone is stabbing me in the gut sometimes, making it hard for me to do anything when that happens... But I didn't even bother asking for pain meds after the resident and doc came in and told me all the things I have to do in the next few weeks, how they'll be watching me "closely" (whatever that means, since I'm not in the hospital yet), and I have to come in and get a CT scan in a couple weeks and may need surgery in the not-so-distant future...

And to think, one month ago, I thought I had IBS and couldn't even get a real diagnosis. I feel like it has been advancing this whole time and I just couldn't do anything about it.

Trying to stay positive, but it just hit me that I'm living with a chronic illness. This isn't going to just go away...

 

[MINI Cooper]

I know. It is not an easy road that our intestines basically chose for us.
Most of us switch meds a hundred times and are always in and out of the hospital
for something Crohn's related.

Right now it may not have a cure, but that does not mean there WON'T be one.
I am involved in one of the many commitees for the CCFA that is working
on finding a cure, and progress is being made. No harm in remaining hopeful!

In the meantime, I hope that you will lean on fellow Crohnies. We are all in this
digestive war together! That is how I look at it. The disease is an enemy, and I refuse
to let it win. Sometimes I lose the battle, but I'm not letting it win the war.
It can be an emotional battle too, don't feel bad for feeling negative about it!

Hope you feel better soon. Take it one day at a time, one battle at a time!
Keep us posted too!

 

[GoJohnnyGo]

MINI Cooper sums things up nicely.

It's pretty devastating when it starts to sink in.

I think we have all felt exactly like you do now.

I was in the recovery room after surgery when I found out. I had never heard of it before, and this was pre-internet days. I truly thought I was dying.

EDIT: I just realized next week will be the 20th "Anniversary" of my diagnosis.

 

[imisspopcorn]

One day at a time....It is a process, coming to terms with having a chronic illness. Very similar to the stages involved in the grieving process. Mourning, denial and so on...Your doctors sound very caring and up to date on treatments. Try not to worry about what might happen as far as surgery is concerned. Only your body knows when that day may come. If you do experience a lot of pain, ask for something to help....We are here to listen if you need anything

 

[shazamataz]

It does take a bit of getting used to, doesn't it? I expect you are in shock right now and it will take a while for it all to sink in. A long while, maybe. I still haven't gotten used to the idea after 5 months and struggle most daily to find a way to accept it.
The good thing is that you have found this forum, where people understand - it has been a refuge for me!
hang in there

 

[Peaches]

I would ask for some pain meds, no use in dealing with constant pain on top of everything else! Sounds like they are waiting to see if the meds help reduce what inflammation you have going on. I have averted surgery several times with that exact process. But.....if you still have issues enough to warrant surgery - it may make you feel a *whole* lot better. I know the though of surgery is scary - but so many people have found actual relief after having surgery to remove diseased/scarred areas. I hope you don't have to have it, but just wanted to say that it usually isn't as bad as it seems. Heck - they do many of them laproscopically now rather than having to actually have a big incision. Good luck and I hope the meds do the trick for you!

 

[uab grad student]

Thank you so much for your support!

You guys are great.

It really does help knowing other people have went through the same thing (even though I wouldn't wish this disease on anyone)... Today I'm telling myself "risk" isn't the same thing as "incidence". Basically, just b/c they say I have a risk of needing surgery soon, doesn't mean it will actually happen. One day at a time. I am doing my best to take care of my body, listen to it intently, and remind myself that the actual situation right now isn't so bad. Things could be worse and I should be thankful for what I have now...

And Peaches, you are so right. Once I accepted that I may have to have surgery last night, I started reading about it and it doesn't actually sound as bad as I imagined. No one wants to have surgery, I'm sure, but it won't be the end of the world if I have to have it. We deal the cards we have been given and I've just got to do the best I can in the situation at hand.

Y'all are a wonderful blessing and I'm glad there are internet forums like this where real people can share each others burdens.

 

[Peaches]

Bright and shiny!! That is a wonderful attitude to have and will carry you a long way with what you have. And yes...that burden isn't nearly so heavy to carry when we all help each other. This place has been a blessing to me as well :O)

 

[krs2]

That day you get the diagnosis it's like a load off your back

Then soon afterwards is starts to sink you have this terrible disease

And hopefully you recover from that quickly, accept the hand you've been dealt, and start enjoying life while you still have it. I think I am at this stage right now

 

[fenway1971]

Hi UAB,
You are not alone. We have all been in your shoes at one point. It only takes time.

I've found that learning more about the disease helped me with acceptance. I immersed myself in all the various treatments, cutting edge research, etc.

Also, seeing how others' cope yet still maintain an upbeat outlook on life gave me hope that it's not all that bad. They'll be down days for sure, but look around this site and you'll find some inspirational people.

Don't let crohns own you.

 

[katiesue1506]

How'd UAB Grad Student get banned?

 

[My Butt Hurts]

Not sure KatieSue, but she did sign up again. Same name.

It is hard to take at first, knowing that you are stuck with this. Keep in mind that you may be able to manage it really well, and have long periods of remission. Even though I will never forget that I have Crohn's because I was so traumatized from my last flare, I am living a 98% normal life right now.

There are a LOT of diseases that I would choose Crohn's over choosing one of them. I was waiting in line at the pharmacy one day behind a girl with uncontrolable Tourette's tics and I thought to myself, wow - I'd rather have Crohn's.

Re:surgery - some people have had a very long remission after surgery too. The only sugery I have needed for my Crohn's was outpatient, but I really had no other choice, and it was so worth it in the end. (Ha - "in the END"! Get it?)

Welcome to the forum, you have a ton of support here!

 

[Pirate]

UAB , I was DX with CD in Feb of 1986 and after the first couple of years I've had to deal with scar tissue problems and have been lucky enough to avoid surgery. It had been brought up many times but luckily I had a GI that was willing to try anything to keep me out of the surgical room. There is always hope. I am now working towards starting Remicade and if that doesn't work my new GI has mentioned surgery and I am against it. But if it gets to bad I will do it.

Hang in there, when you think it will never end out of the blue you will feel better and things will calm down.

 

[uab grad student]

Hi Katie,

I'm UN-banned now... think that was just a mistake so Mike put me back in the forum.

 

[uab grad student]

You guys are great. Pirate, you sound like the kind of guy that isn't letting go of any part of your intestines without a fight! I'm part Irish and I'll pull out my fighting spirit, take my Humira, and hope they don't have to take anything out too soon.

And "My Butt Hurts".. yeah tourette's would be tough to deal with (since I'm usually thinking un-Kosher thoughts, it would be scary to think of the things I might say out loud).

Anyway, I'm back on the forum and plan on being here awhile! ;-)

 

[Pirate]

UAB, my wife won't let me give up without a fight. She thinks about differant things from differant angles and asks questions that have amazed even my doctors. She can be like an old drill sargent at times, but she does it out of love so I can't complain. i've already decided if I can taper off the entocort and have no problems than I'm talking to my GI about holding off on the Remicade. I just have to keep pain free till the middle of Febuary. Plus I have to put on some weight.

 

[teeny5]

I went through the same thing you did...first relief then upset I had something incurable. It really upset me for a while until I just told myself...suck it up and do the best you can with it. I can't get rid of it so I will not dwell on it for the rest of my life. Hope you feel better about it soon.