Anyone living with Crohn's Disease??

[gigglegal76]

I was just curious. As some of you know I have been MIA from the forum for about 2 yrs now. Well I do pop in from time to time but I've been pretty sick for 2 yrs now. My stomach doctor was at a dead end with me and was about to send me to the University of Michigan hospital to try and figure out what's going on with me. Finally the last test that she performed a few weeks ago gave us an answer that we've been waiting for.

I have recently been diagnosed with Crohn's Disease. She found 3 spots on the bottom part of my colon. I go see her again Nov 20th and we'll discuss then what she will be doing next. If there will be surgery involved to remove those spots, how far gone this Crohn's Disease is, etc. Right now I am being treated with medication and it's working wonders so far. I did have a flare-up last weekend that not only affected my stomach but also my joints. I was just curious if anyone else on this site was living with this disease or knows of anyone with this who I could talk to. Please let me know. I could use all of the support I can right now and prayers as this "can" turn into cancer.

 

[drew70]

I confess I've never heard of it. But I'm glad your doctors have finally locked onto what's causing your condition. I sincerely hope and pray that their efforts are successful in restoring your good health.

Keep us informed, okay?

 

[Bugman]

I had a girl friend many years ago who had the same thing and she was able to control it with medication.This was in the early 1980's and i'm sure the treatments are even better now.She was still doing fine the last i heard.All the best to you giggle76,sending good vibes your way.

 

[Luv2Tickle69]

I've only been aware of Crohn's Disease within the past year....you probably know more about it than I do by now hunny....but....just pay close attention to what any specialist on the subject (who's helping you) tells you....take whatever healthy alternatives you and your doctor know will work for you, and I should think you'll be just fine. Godspeed.

 

[unclebill]

I have two friends who have Crohn`s Disease, and since they had surgery both are living active and happy lives. There are restrictions in their diets, but that is something your doctor will address with you. Good luck.

 

[kis123]

Don't have Crohns, but deal with IBS-I have some understanding of your pain. Hope you get stronger and better and watch those spicy foods!

 

[steph]

I work with a lot of Crohn's patients. It's one of those diseases I call "tricky diseases"~it's not deadly but painful and incredible debillitating to those trying to carry on a "normal" life. Because for most people, the bowel resectioning generally solves the problem, people have a hell of a time getting SSI and you have to suffer for a looooooooong time before many insurances will cover the surgery. I did have one patient finally win her appeal~she'd had the procedure done 6 times (yikes) with no success. She'd been fighting it since she was 13--when I met her, she was 30.

Kitten or Sadira may be able to hook you up with some support groups thru the hospital. Good luck!
XOXO

 

[jaba]

Hi, Gigglegal, our long lost mystery lovely lady laugher....

We are so glad to hear from you, and your well wishers here are hopefully giving you valuable insight. Unfortunately, I can't offer any expertise, but you know I do most certainly offer my prayers, and an always open p m box whenever you feel up to talking and catching up....

We miss you and hope you feel better and we want to hear more from you, ok?

 

[paracarl44]

Crohn's Disease Runs in Families.

There was just some people here that has this condition in several family members. I believe that I read that this disease is in the Bush Family. Does any of your relatives have this problem? I am glad that you found a Doctor who knows what your problem is. If you wish to PM me I will help you find some Websites for your condition.

 

[tcklft]

I'm very sorry to hear of your diagnosis, though I'm glad your dr. was able to find out what's been ailing you.

I've been living with IBD for two years now, and have read a fair amount on the subject. There's no known cause, and no cure, but therapies are (slowly) improving.

I recommend Jill Sklar's The First Year: Chron's Disease and Ulcerative Colitis, Second Edition if you'd like to read about IBD. It's a wealth of information; Sklar has had Chron's for over 20 years, and offers much in the way of practical information. Andrew S. Warner's 100 Questions and Answers About Chron's Disease and Ulcerative Colitis is very good too--well written, current, and thorough.

I've found the drug encyclopedia at mayoclinic.com very helpful when I need to read about a new drug my GI gives me.

The Chron's and Colitis Foundation of America website (ccfa.org) has a great deal of information on IBD, including the latest research news.

Good luck!

 

[gigglegal76]

Thank you everyone for your comments and also for your PMs. I really do appreciate it very much. This has been tough on me but I'm just thankful that the doctor finally figured out what's wrong with me.

Tcklft, I have read the 100 questions and answers book and found that extremely informative. I have a bunch of questions to ask my doctor when I see her this coming Tuesday. I have also just requested a couple of books from the Library from Jill Sklar that I'm waiting to come in. They had to order them from another Library cause they only had 1 book on IBD at my local library. Go Figure!!

I hear that IBD runs in the family of Lupas. My doctor has been testing me for Crohn's since this past Feb because my sister has Lupas but all of my tests have been coming back negative. Guess it just took this 1 last test. I will keep everyone informed on what the doctor says on Tuesday and where we go from here.

Thank you again for all of the PMs and the comments on here. I really do appreciate it.

 

[paracarl44]

Do you know how to GOOGLE?

Type in Crohn's Disease at the GOOGLE Website and it will bring up at least
10 or more Websites on the subject. Let us know how you made out. I am glad to hear that you are going to a University Hospital to receive a diagnosis of your medical condition.

 

[gigglegal76]

Actually I am not going to the University Hospital for treatment. If this last test came back negative once again my doctor was going to send me to the University Hospital because she was pretty much at a dead end with me.

But luckily this last test came back positive. I have done an awful lot of research and I asked my doctor so many questions today.

The good news is that the Crohn's is not as far advanced as we had thought. She is putting me on a steroid for a few days and I have to call her on Monday to let her know how I'm doing. If my body does not respond to it then she's going to try me on something else.

The other good news is that the 3 spots on my colon is not cancer. With all of my questions and everything I completely forgot to ask her what she's going to do about the spots. So when I talk with her on Monday I will have to be sure to ask her then.

Thank you everyone for all of your support and your prayers. Without you I really don't know how I would have gotten through this.

.I am glad to hear that you are going to a University Hospital to receive a diagnosis of your medical condition.

 

[tickleshotel]

Happy to hear that you received good news hun,and I hope that your body reacts well to what she has given you.. Sending you best wishes for a quick recovery and your back to your lovely personality soon attending gatherings when you can as I have missed you at previous gatherings ,lots of hugs and support for you