Newly Diagnosed

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greshna
Regular Member


Date Joined Oct 2007
Total Posts : 30
   Posted 10/2/2007 9:32 AM (GMT -7)   
Hi to all of you out there. I am 45 and just diagnosed  with Crohns. I find the whole thing quite frightening. So many questions to ask... and I feel I have so little knowledge of this disease, which seems by all that I have read almost as bad as being diagnosed with cancer. I do hope I am  proved wrong. Its the unknown.... what if, what might happen, when will it hapen, or might it never happen???? I dont know. Another thing I have had thoughts on is does having Crohns shorten your life expectancy?? I am still not feeling too good after just coming out of hospital after 8 days and being diagnosed, hope fully I will start to feel like my old self soon. Its so life changing or so it seems, change your diet, quit smoking!! which I have done, but do I have to change my whole life style?? my husband and I love to go for a drink at the weekend, can I still do that?? I am not sure. I am on 30mg Pred and 6x 500mg of pentasa per day, I take other meds due to me having my thyroid removed 5 yrs ago. Any answers would be appreciated.
Thanks
Kerry nono

bunnypucker
Regular Member


Date Joined Dec 2003
Total Posts : 494
   Posted 10/2/2007 9:44 AM (GMT -7)   

crohn's itself wont shorten your lifespan it just makes life harder. you have to know where the bathrooms are and you will have to modify your diet. the only thing is there is no specific diet to follow. keeping a food diary helps becasue you can see what foods work for you. sometimes i can tolerate some foods though and other times i cant so its a crapshoot. but you will get thru it. i know how scared you are. when i was first dx'ed i was really scared too. sometimes you may need to go to the hospital and you will probably be on meds to contril it for the rest of your life. but it will become routine for you. i promise. the only thing i can offer is that it does get better. the meds can bring you into remission, i had a good long time where i had no symptoms at all when i was on remicade. at some point they may need to change your meds, sometimes that heppens too. but try not to be too scared. you will be able to live your life, do what you want to do, just maybe a little differently.

it will be ok. coming to healingwell is a great decision. there are so many knowledgable people here and so many that offer you the support you need. and you can tlak about anything! poop, pain, or even just to rant , get advice or just to talk. welcome, im sorry you have to be here but welcome to the community.

 

i hope this helps

 

bunny


Crohn's Disease Diagnosed 12/24/03 (Thats Right, Merry Christmas to me!)
 
Bipolar
 
Probable MS
 
 
 
 


greshna
Regular Member


Date Joined Oct 2007
Total Posts : 30
   Posted 10/2/2007 9:57 AM (GMT -7)   
Thanks Bunny, your a star. I like to read positive things casue all I have read is negative so far.
Kerry

bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 10/2/2007 11:50 AM (GMT -7)   

When I was first diagnosed I both loved and hated this site.  Loved it because there was so much info available.  Hated it because it scared me.  Some of the folks on here have had much bigger problems with their Crohn's than I have so far.  I started to worry about all the possibilities.  I think it's important to know what to look out for, but try not to stress about it.  Is my life different now?  Yes.  But my quality of life is good.  I'm tired, but I can work.  I can get out and run errands and take care of things around the house.  I don't always want to, but let's be honest- who does?  Sometimes things are a little harder and I need some help.  But generally speaking, my meds let me live a pretty normal life.  Hopefully, you'll get there, too.

As for alcohol- check your medicines carefully.  Flagyl is an antibiotic commonly prescribed for us.  You DO NOT want to have any alcohol while on it.  You'll be miserably, violently ill.


greshna
Regular Member


Date Joined Oct 2007
Total Posts : 30
   Posted 10/2/2007 11:52 AM (GMT -7)   
Thank you for your reply, Its nice to know there are others out there with the same.
Kerry

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/2/2007 12:04 PM (GMT -7)   
Well I have lived with this disease for over 30 years. No is doesn't shorten your life span, as stated above it does make for some bumpy times though. As long as you aren't on super strong meds as mentioned above its okay to have a drink now and again (when you are healthy, not in a flare). I had two flares in the first 4 years after I was diagnosed, then enjoyed a 20 year remission. During that 20 years I barely even thought about Crohns. I have 3 grown daughters, 5 grandchildren and been at the same job for almost 18 years. You can have a very normal life with Crohns. I have since had 2 resections to remove diseased bowel, and do have to watch my diet very closely now, but life is still good most of the time. Each Crohnnie is individual with their disease. Some can eat things, that others can't. Some meds work well for some, others it doesn't. Just be sure to keep a food diary and stay away from foods that bother you and you should always be on some kind of maintenance med, that will help to keep the flares away. Hopefully you are on your way to remission now.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


greshna
Regular Member


Date Joined Oct 2007
Total Posts : 30
   Posted 10/2/2007 12:10 PM (GMT -7)   
Thank you so much for your lovely reply, I am glad to know that things might get better or that things may not be so bad at all. Fingers crossed for us all.
Kerry

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/2/2007 1:28 PM (GMT -7)   
Hi Kerry and Welcome to HW a place to learn and be apart of a great forum where people are very caring and supportive, we need all the CDer's we can get. We are always here for each other so if you have any questions ask and people do there best to help. lol gail

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 10/2/2007 3:00 PM (GMT -7)   
HI and Welcome. I have had CD for 19 years (29 if the doctors had listened to me) and my Mom had it my whole life. So basically I've lived it for 42 years. You are doing the best thing you can do for yourself. Educate yourself about CD. Know what the possibilities are, but also know that most of them won't happen to everyone. If you are lucky you will have a very mild case and will barely be aware that you even have an illness. But when you are having a flare you will need to be extra carefull about what you eat and take extra care of yourself.

There are alot of people here who have had horror stories and alot of people who have had mild cases. Keep that in mind when reading posts. Also, there are never any stupid questions or topics that we don't discuss. After all we're CDers, we love to talk about poop and such. So please feel free to ask anything you need to to ease your mind and get more comfortable with your new diagnosis.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


huckleberry
Regular Member


Date Joined Sep 2007
Total Posts : 317
   Posted 10/2/2007 7:23 PM (GMT -7)   
Kerry,

Welcome to Healing Well -- I'm new too.

You and I have some similarities. I am 44, and was diagnosed last month ago after an 8 day hospitalization (same as you). I'm still not really all back together yet and am a little stunned to find myself in this forum! But, everyone has been very nice and welcoming and there is a lot of information here. I find myself trying not to read certain threads that go into details I'm not ready for.

I'm much better than I was a month ago, but have been frustrated that I still can't eat normally (low fiber, no dairy, no caffeine etc), am feeling very worn down (have iron and vitamin deficiencies) and am alternating between D and C. I've developed some internal "hemmies" as they call them here and back pain. Also, having side effects from the Prednisone. So, not a perfect recovery, but I'm back working full time and doing okay. I like my GI doctor (he's known for being a "low" medicator which fits my style for right now) and have my next appt in two weeks.

I hope you continue to feel better and better and finish with your "flare" soon,

Jeanne
44 years old, newly diagnosed after an 8-day hospitalization in September 2007 but symptoms for several years before that.
Taking Pentasa, Prednisone (tapering), Cipro, Prilosec, probiotics, calcium and a multi-vitamin -- also Levoxyl for hypothyroid (Dx 2004)
Gall bladder surgery in 1997.
Single working mom to three wonderful kids, ages 9 to 15.

So appreciative to have this forum -- it's all new to me!


lovepink
Regular Member


Date Joined Sep 2007
Total Posts : 182
   Posted 10/2/2007 9:26 PM (GMT -7)   
Don't GIVE UP and you will MAKE IT! Trust me we all do, just how we are.

I would be more than happy to help you through this over the phone or e mail.

Please let me know if you would like any help.

Find a good GI first of all and always remember you know your body more than anyone including your doctors, etc. Keep a diary on a DAILY BASIS of how you feel, etc.

Prednisone is a hard one. Take Calcium and Vitamins and drink a lot of water.

You will get better!

Good Luck!

greshna
Regular Member


Date Joined Oct 2007
Total Posts : 30
   Posted 10/3/2007 12:11 AM (GMT -7)   
Thank you both for your replies, perhaps I was just feeling sorry for myself more than I should be! I am beginning to feel a bit more positive each day though. I am not in any pain anymore so I think that means my flare is almost over. I see my consultant next week, and then I will have the barium enema and the colonoscopy!! I am sure that will be fun.
Hope to chat more on here as you are all so great.
Kerry

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 10/3/2007 3:42 AM (GMT -7)   
welcome aboard! i am newly diagnosed as well and though the course in treatments with pills & tests have been a complete whirlwind for me the past few months, i am starting to feel better. i's say about 65-70% better than where i was before diagnosis! hw has become a staple in my web visits daily, to listen to other peoples stories and to ask questions. it's just a great place to come when you feel lost and that no one understands.

take care!
.: stephanie :.
32 y/0 female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
currently taking 40 mg prednisone and 4000mg pentasa daily


mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 10/3/2007 9:00 AM (GMT -7)   
Greshna,
Sorry to hear about your new CD diagnosis, we all feel your pain, trust me. When I was first diagnosed in March 2006 I hadn't even heard of CD before so I did a lot of research online, which scared the c**p out of me, all the talk about fistulas, fissures, resections, etc, it was overwhelming! I thought, "is this what my future holds?" It still scares me very much, although I have been luckier than a lot of people with CD, no fistulas, fissures or surgeries (yet!). One thing I can tell you is that it definately changes your quality of life, many of the things I enjoyed before I got CD I can't do now, such as enjoying a nice meal, or any activity which takes me out of range of a bathroom. I don't bother eating out anymore knowing that I will either end up throwing it up or having terrible abdominal pains. I eat small meals throughout the day, that helps me a lot, no heavy meals anymore, my stomach won't allow for that.
My advice to you is research, read as much as you can, it is scary at first but the more knowledge you have of the disease the more in control you will feel. Take care newbie!

Marci
DX with CD March 2006

greshna
Regular Member


Date Joined Oct 2007
Total Posts : 30
   Posted 10/3/2007 9:48 AM (GMT -7)   
Thank you Marci, glad you are keeping quite well. I hope I am as lucky as you! I actually feel sorry for my husband as we had such a good social life and now I feel as though I have spoilt it all for him... I feel like going out for a few drinks one evening with him, but am scared it will send me back in hospital. we also love to eat out, but haven't since I was diagnosed. I am also worried about my job cause I am not going back to it so money is going to be a real difficulty for us. Long story but my employer all of a sudden wants me to move to another one of their offices further from home, I basically think they are trying to get rid of me now they know I have Crohns. I am not going to move office as it is not practical for me to do so.

Kerry DX with CD Sept 07

chrissy27
Regular Member


Date Joined Oct 2007
Total Posts : 67
   Posted 10/3/2007 9:48 AM (GMT -7)   
I was just diagnosed in april and let me tell ya....to me it seems there is so much info to soak up.  My brain feels like mush...and am very tired (have 3 young kids to take care of--5, 2, and 1 yrs old)  I can see why you are scared.  I am still scared.  I know that i will be ok but i guess it's the fear of thinking ahead..."well what will happen next...."   Just rely on the support of family and friends...it helps.   hang in there...i'll be hangin in with ya :-)
 
God Bless,
christina

27 yr old female, dx: crohn's colitis with sticture of the colon april 2007
 
medications:  Imuran, Lialda, and advil for joint pain


greshna
Regular Member


Date Joined Oct 2007
Total Posts : 30
   Posted 10/3/2007 9:51 AM (GMT -7)   
Thanx Christina, Kids dont understand its gonna be hard but Im sure we will get through it. Keep in touch.
Kerry
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