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I am have colitis and crohns and was diagnosed three years ago or so. I have been on every kind of drug. I have weened down to 15mg of Prednisone and just started Remecade. Now that I am weening Prednisone I am starting to flare up again and am worried now that surgery is coming up. My specialist said there is not much more drug treatment after Remecade. I am really scared. I am only 32 and don't want a bag stuck to me. I don't know if I will ever beable to go swimming or wear a bathing suit. How do people have sex and is it embarrassing when you have a bag? I am worried that it will stink. I am so so scared and am worried this is going to ruin my life.

 Reply posted for rachj.

Your story sounds much like that of my daughter, age 14.  Please keep in contact with me and let me know what road you have chosen and how it is all working out for you onedreamer@juno.com

 Reply posted for curlysue.

Breezy, you are where I was six months ago.  I know how scary the prospect of surgery is.  I didn't even want to HEAR about it from my GI until my options ran out.  The meds were literally sucking the life out of me and not even working anymore.  I was exhausted from them and also from having hope that things would get better and the devastation when things got worse.  I had my colon removed in Feb. '10 and noticed immediately that I did not have any urge to run to the bathroom.  Sure, the bag took some getting used to; how could it not?  But there are ways around it, really good products for good adhesion to the skin, a website of beautiful bathing suits (www.whiterosecollection.com - just have little pouches where the bag fits and no one knows except you), ace bandages that can be used to hide the bag under a beautiful negligee, etc.  I feel SO much better since my surgery, I wear basically the same kinds of clothes I wore before I had it, no one knows it's even there except family and friends.  I would be happy to help you in any way I can.  My e-mail is lamb428@optonline.net.  I know what you're going through and would be happy to share details about "the other side".  Hang in there.

 Reply posted for curlysue.

I have the same questions as you.  I was told today by my GI's PA that I should consider surgery as well.  I am not in a flare right now but apparently have exhausted all of my options when I quit taking the mercaptopurine and the Lialda he prescribed.  I am wondering if one must be in a flare before a recommendation as drastic as this.  I thought I'd be on my deathbed before he would suggest surgery.

 Reply posted for curlysue.

Naomi,

Did you ever discuss LDN with your doctor? I have UC and I am quickly running through all of the traditional drugs used to treat it. I am eager to try anything to avoid surgery.

Carla

 Reply posted for alanschachter.

Yes Alan I am quite interested in the LDN drug. I don't really know what it is all about. I read up about it but I don't know if my specialist will give it to me. It looks like it is really new. The other thing  I am worried about is that if I go looking for another specialist that will prescribe me this drug then I will lose my main specialist. Specialists can be kind of touchy with getting second opinions. My specialist hasn't mentioned this type of drug. It sounds like a miracle drug. Are you on it right now? I am very interested. It sound like it has worked for many people and I like that it has very few side effects! I was also wondering if you knew if it is a sedating drug because they use it for people that were heroin users and drug addicts? So many questions I have for you. Thanks alot for your help!!

Naomi

 Reply posted for alanschachter.

Hi-

I'm just curious if you can tell me how a person starts the specific carb. diet.  I have only looked at foods that are permitted, and not permitted, so perhaps I need to read more.  However, most of the permitted  foods I see would kill my husband right now; fruits, veggies, nuts.  He has been in an active flare up for almost two years now, and those foods send him to the bathroom many times.  Just curios--I applaud people who can do the diet, and make it work for them.   

 Reply posted for curlysue.

Hey, so I saw this question you posted and another one, and I feel like we are in the same spot in our diseases right now. 

 Reply posted for alanschachter.

Curlysue,

I had a temporary colostomy.  I will be happy to "talk" with you about it.  My email is mizgarnet@yahoo.com.

Diet is very important.  Alan provided you with some wonderful information.  I would add The New Eating Right for a Bad Gut.  This book deals with inflammation.

Breezy

 Reply posted for curlysue.

Thanks for those websites. I will definately check them out. What are they? Are they diets? Thank you all for the help and support. I really appreciate it. It is really nice to have people to talk to about my worries who have the same thing. So thanks!

 Reply posted for curlysue.

Have you seen the web site www.greatcomebacks.com?  There are so many great stories there about people who are living their lives after ostomy surgery.  At least one of the people on there talks about swimming, etc.  Hope this might help.  Sounds like you are really scared.  My husband is scheduled for surgery on 8-6-10.   We are hoping for the best, and this site has helped us to do that.  But still--we are scared too.

Best of luck!