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Had my Colonoscopy/Endoscopy this morning and the News wasn't VERY good!

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Crohn's Disease
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Posted 8/5/2009 10:47 PM (GMT 0)
Well went for my Colonoscopy/Endoscopy This morning and of course I wasn't prepared for the news I got. Crohn's has peered it's ugly little head on the suture site..I'm so Upset..I really am..Had resection surgery 9 months ago and within that time I have had other unrelated to Crohn's problems that have pinned me down NOW I get the results of which aren't to appealing.....I just want to feel like I have nothing wrong even if it's for 1 Stinkin week! I'm upset because of 1 week! Go figure! GI said he did biopsies on both ends and wants to talk about other medication! I wanted to cry in front of him and all I could say was "at least I had a good run for a few months"! But I really didn't....I had some freakin virus I caught and was in agony for Months then I had to have knee surgery because of a Torn meniscus and cartilage tear...So now when everything is in the clear I get this...I thought having the resection would put me in remission, I was hoping at LEAST 2 yrs....I don't know, I'm upset and just trying to vent but my hands aren't moving fast enough w/ what I have to say..UGH!

Well I'm depressed right now and just feeling sorry for myself! Seems like the right thing to do at the moment but, then tomorrow I will pick myself up and call it truce and try my hardest to fight it..but at this moment I just wanna cry! I hate being sick..How do u explain to ur child why ur sick all the time ? He has now stated saying he's sick and needs to see a dr....I wear a GREAT mask FOR him and Myself..But I hate for him to feel pity on me. And all I keep thinking is when he's older all he remembers is Mom always being sick or having some problem..I hate it.....But ultimately Theirs nothing I can do about it.

I got a call from my brother asking how everything went I told him and he said to me "why didn't u tell me u were having this done, I had to hear it from mom" I told him"Because what would that have done? I tell u and then if I do find out bad news the only thing u could say is I'm sorry to hear that".
I'm sorry I'm rattling on..I'm sure u have heard it before but No one else knows how I feel except for all of you....

Thanks for reading this !
Posted 8/5/2009 11:06 PM (GMT 0)
(((elexis))) How upsetting and frustrating for you. Life's not fair, is it?

:-(

Ivy.
Posted 8/6/2009 1:28 AM (GMT 0)
I'm sorry =( This is one of the reasons why I keep avoiding talk of surgery - it's a crapshoot over whether or not it'll return quickly or a long time from now. It's too bad that other health issues got in the way of the short lived remission period you had. *hugs*
Posted 8/6/2009 3:27 AM (GMT 0)
I do understand how just when you think you're ok, something else pops up!  I have Crohn's, then when that was stable, I got auto-immune hepatitis, and then when that was under control I had a pre-cancerous colon polyp, and when I stopped worrying about that, I got sarcoidosis, and just last week they discovered scoloiosis--evaluation by a specialist in Sept.  GIVE ME  A BREAK!!!

So I, as well as pretty much everybody on these forums know, BEING SICK IS  ........

Pix

Posted 8/6/2009 12:28 PM (GMT 0)
Thank you so much for the support! Is it that when u get Crohn's other things follow Or it's by pure coincidence that everything follows along! Also

PIX- U have other auto immune diseases does that follow because of the crohn's? Is it that when u get one auto immune disease u could get others as well?
Posted 8/6/2009 1:02 PM (GMT 0)
Elexis, as far as I understand, the Crohn's doesn't directly cause other autoimmune diseases, but instead there is a genetic vulnerability for autoimmune diseases in general.  so, yes, I can get them all!  smhair
Posted 8/6/2009 1:13 PM (GMT 0)
Elexis,

So sorry to hear you are having so many health problems. I had my first resection in 2002 and it seemed from then until 2006 I was constantly having health problems. I had my last resection in 2005 and once I recovered from that I started having better luck. I wonder if when they did your 1st resection if they didn't get it "all" and now you are having another flareup. I hope the doc can find the right medication for you and you get feeling better really soon.

Big Hugs
Gail*Nanners*
Posted 8/7/2009 1:20 AM (GMT 0)
I'm really, really sorry to hear that this is happening to you...I can't say much except that I'll be sending good thoughts your way. I hope some good news pops up soon.
Posted 8/20/2009 6:14 PM (GMT 0)

Elexis..

reading your  post I could feel your utter anger and hopelessness, and all I can do is to say that I am thinking about you and sending out love..

please dont take this the wrong way because I know you want the best memories for your child - all I can say is that in the big picture of life, you can make your little one's life as happy as you can, so that he has good memories of his mum, and even if you dont feel like you're on top of the world on some or most days, please, at least show your happy, loving side , because, making the best of things for your child's sake, will give them a really good childhood to look back on.. Every child should have a good childhood to look back on however ill health rears its ugly head..

And, although you cant be as happy and lively as other mums because of this ill health - you dont want your child to only have a memory of a ( excuse me for this ) moaning, groaning sad faced mum - when clearly you are not !

You obviously are a GREAT mum and you have a GREAT child.

Give him/her the best!   and very warm wishes to you.. take what life throws ( and throw it back with a laugh some times ! )

 Lots of love and((( hugs)))

sal

xxx

Posted 8/21/2009 2:26 PM (GMT 0)
Oh elexis :-( Im so sorry and you have truly inspire me to keep my head up because you have it so tough. I believe that everything happens for a reason and that includes my disease. When I went into remission the air felt cleaner, the birds sounded sweeter and the sun in winter that bit warmer and one day you will be there to appreciate it. For now you may not feel so motivated and I don't blame you but you probably don't realise what a special gift your teaching your son everyday being strong, fighting the disease, being a parent and everything else that comes with it.

Kids today are spoilt, there is so much sex drugs and rock n roll and its scary but what I believe we (crohnies) teach all our children is that your body is a temple and when we struggle day to day with pain and suffering against our will striving for 'maybe that couple of months break' That might be the thing that deters them one day from taking drugs, drinking & smoking etc and that we never give up...maybe sometimes for a day or 2 for a sulk but that's okay because we go right back to fighting again.

I would not be the person I am today without this disease and i'm glad that my son can inspire to live a wholesome and grateful life knowing not to sweat the small stuff and never to give up...I know it's hard when you cant play with them but try be proud of what you can do with them because they love you regardless :-) and if you have inspired me in one post imagine what your loved ones think about you...your tough!!!! (with a gooey sweet filling of course)
Posted 8/21/2009 7:54 PM (GMT 0)
Elexis,
This is the nature of the disease, it recurs.....that being said, you have every right to throw a pity party for yourself then dust off and get to work dealing with the issue at hand.

Your news and situation is not at all bleak. You are only on asacol according to your sig, there are a ton of other stronger crohn's meds for you to try that can work to put you right back into a remission before this current flare has time to turn any of your newly resected tissue to damaged scar tissue. it's good news that you have found out early and now can get on some new meds ASAP!

I've tried pred, flagyl, cipro, asacol, 2 other 5-ASA drugs, 6-mp, remicade and am now going to try humira after resection #3 and I have every hope in the world that this will be the one that will keep me in remission for a very long time, maybe even forever!

As for your kids, they will learn from this and be more understanding too. My kids understand that sometimes Mommy doesn't feel good and that I am not able to eat the things that they can. Before this surgery my 5 year old said she was going to pray that Mommy could eat corn on the cob. That's a 5 year old viewpoint on what this surgery was going to do for me. She also sat on the exam table at her dr appt today to get her shots instead of on my lap cause she didn't want to hurt my tummy. Maybe my kids are becoming more empathetic due to my illness they they would otherwise have become. All bad things have some good in them and you can find it if you look! Keep your chin up, we all have bad days, but there are good ones too!

Kim
Posted 8/25/2009 1:54 AM (GMT 0)
WOW! Thank you soooo...Much! It's feels good to know that theirs so much support...I know that w/ my son it's best to do what I can w/ him..And I do..I just shouldn't sweat the small stuff! HEhhe...He's a GREAT kid very compassionate and sometimes I forget I played a part in who he is..So I shouldn't worry about the future when the present is just fine! Anyway...

I spoke the the G.I and he mentioned a Medication that hasn't been FDA approved for Crohn's..I believe it started w/ a k or q! I can't remember ...He says because I can't take Remicade and Humira did nothing for me...so he says theirs no other alternative...I don't know if I like that being said but I don't know what else to do....Right now My poor Father-in-law has been in ICU for a week and a day...He has an AVM that burst so now it's been a HUGE emotional rollarcoaster ride I just want to get off of! Anyway I don't want to ramble but Thank You so much for the kind words and support...

**Hugs to all**
Posted 8/25/2009 4:03 AM (GMT 0)
I am sorry...*hugs* to you..just breathe...we are all here for you..its hard so hard to be frustrated..
Posted 8/25/2009 9:21 PM (GMT 0)
Hugs to you((((((((((((((((((elixis)))))))))))))))))))))))...I understand what you mean...It bites to be sick! I remember my mom and grandmothers saying they felt old...heck I don't feel old, just SICK.

Are you able to take Cimzia? It is similar to the Humira and Remicade. Doesn't have the mouse proteins that can cause reactions in Remicade. Humira was a dead end for me too. The Cimzia has helped ALOT!

However, some people have reactions (i.e., drug induced lupus) and they cannot take any type of biologic. I hope you find something that helps!

And, again, hugs
Posted 8/26/2009 12:25 PM (GMT 0)
I may ask about Cimzia...I know I can't have remicade Bad anaphylactic reaction and Humira just gave me drug induced lupus but I need to find an alternative to all that besides a Clinical trail ...I have enough problems at the moment I don't want to start growing an extra thumb ..EHhehEH.....Thanks SOOO...Much for the support......
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