Just Diagnosed

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FightingChance
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 6/12/2009 3:45 AM (GMT -7)   
Hi Guys,

So, I just switched Forums because, guess what...

Yes, it is not very difficult to figure out why...I just had a colonoscopy and my lovely results showed that my Colitis has now turned into Chrohns Colitis and spread to my small intestine...after 5 years of not doing so. I am not excited about this as my writing tone might indicate. I mean the only thing about it that is encouraging is that maybe that's why I am not getting better on the asacol, because I might need some different drugs besides that to kick this things butt (punn intended). Do you guys know if it's worse to have Chrohns than Colitis? I mean I feel like I could read about this till I am blue in the face but the most resounding theme that keeps coming up is that no one really knows very much.

I am really scared that they are just going to treat the symptoms of this illness (the inflammation) and not the actual cause...I don't want to be dependent upon drugs like steroids and all of these other things that I truly do not know if they are going to help me in the long run. I mean we all know how bad and good steroids can be for our condition. And lately, I hate to say it, but I have had to be on steroids a lot. It's not fun and I really, really do not like the nasty side effects. Plus, this disease has limited me in so many ways in my life already....down to the type of jobs I am able to take...travel...pretty much everything. I mean I live in Florida and I am scared to get on a boat, not because of a fear of the water but because of this disease and the effects of it and the possibilities of what I am afraid of happening. I mean it's ridiculous. Yet, it has become this sad, sad reality for me. It's embarrassing actually.

But, I do look at it on the bright side whenever I can and that is that it is better to have a limited life experience rather than no life experience. So I am even more thankful for the life experiences I am able to enjoy and have and try not to dwell upon the ones I am not able to enjoy but sometimes it's hard... like when all your friends are going out and you really really want to join but you know that you're too sick and that if you do it, you will make yourself that much more ill....and then you could land yourself sick all week thus missing work and other vital things or even worse, end up in the hospital.

Sorry if I am being negative, I usually try to stay very positive. I am just finding it a bit hard at the moment. Any words of wisdom...thoughts on the topics I have put out there...would love to hear from any and all of you. My deepest thoughts are with all you.

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/12/2009 6:12 AM (GMT -7)   
It took me a long time to even admit to myself that I even had a chronic disease. . Everytime I would get sick I would think that that was the last time it would happen. I spent 5 years having bowel obstructions that threw my life into a tail spin. Even after my bowel resection I thought that this disease would go away. But now I have come to terms with my limitations. I listen to my body and take the appropriate measures. It doesn't scare me like it did before because I know I have the power to make things better..... not perfect.... but better. My biggest piece of advice would be not to panic and to take one day at a time. I always tell myself...... there are people out there that have much more serious diseases than me and are living wonderful lives.
Dx'd with Crohns 1984 and polycystic kidney diease in 1996
I was in remission for 16 years, Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/12/2009 6:20 AM (GMT -7)   
I agree with Irishmom, you just have to take this disease one day at time. Its usually the worst when first diagnosed as you are trying to figure what the best treatment is for "you".

Also, with Crohns, it is very common to become depressed or anxious. You have so many what if's with this disease, its normal. If you feel you are getting too overwhelmed and it is getting you down, be sure to talk to your doctor. I take Xanax on occasion when my anxiety gets to be too much and I am able to stop the anxiety right away with the help of this medication. And I only use 1-3 times a month. It also allows to do the things I might have been too scared to try in the past i.e. such as travel.

Good luck and welcome to Healingwell.

Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/12/2009 8:00 AM (GMT -7)   
Also remember that some people go into remission for long periods of time. I was in remission for 10 years and haven't had an obstruction for almost 3 years now .
Dx'd with Crohns 1984 and polycystic kidney diease in 1996
I was in remission for 16 years, Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 6/12/2009 10:05 AM (GMT -7)   
Hi FightingChance, I post on the UC forum as well as the crohn's forum because I have crohn's colitis myself...

Yes, having crohn's is worse than UC because with CD the inflammation can affect the many layers of the intestinal lining where as with UC it remains on the surface of the lining only...crohn's is also worse than UC because it can affect any part of the GI tract from mouth to anus where with UC it's limited to the colon/rectom area only. As far as symptoms they are basically equal between UC and CD and disease severity varies from mild to severe with both conditions as well. Also, the same meds used to treat UC are used to treat crohn's colitis as well, crohn's colitis is the term used to describe crohn's affecting the colon (some get confused and think it means one has both UC and CD which is not the case). Remissions and flares are no different between CD and UC either. Probiotics (friendly bacteria) are practically essential with IBD (CD or UC) and it's mainly because IBDers tend to have bacterial overgrowth issues, probiotics should be used indefinitely (flaring or not) to encourage balanced gut flora on a continued basis.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


FightingChance
Regular Member


Date Joined Sep 2008
Total Posts : 44
   Posted 6/12/2009 11:12 AM (GMT -7)   
Thanks so much for your friendly words guys. You know what really scares me the most are accidents....unfortunately, it's not just an anxiety though...it is a reality...it has happened to me before. I have literally had an accident before (AT WORK)...so I am so....absolutely terrified of going in a car with people ect. because hello, what if I get that crazy urgency. What do you guys do when that happens to you. Please...tell me. If I could get that under control, I would be in such better shape, you know?

Thanks & Be Well.
27 year old female diagnosed with UC at age 22.
On Asacol 3x's daily.

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