Crohns and Colitis Exchange

Hi, I went through UC too. I made the mistake of going through J Pouch surgery after all else failed. I'm sorry I chose that procedure now, because I'm stuck with an unhappy compromise for the rest of my life now. If I still had my diseased colon in me, I'd be happy to try all the alternatives that are around now. You see the internet didn't even exist when I had UC back in the 80's. There's lots of different probiotics to choose from that I didn't know about back then. And there's even this http://articles.nydailynews.com/2012-09-27/news/34131850_1_transplant-car-accident-new-bacteria promising treatment. I wouldn't hesitate to try all the alternatives around now. I only wish I was in your shoes so I still could. I still haven't heard of any promising developments that will one day lead to a colon transplant.

Thanks for your response. I am new to this and am not sure what to expect, whether things get better or worse. I feel for all those whose stories here are devastating.

Best to you............

Haha, the internet existed when I had my surgery. There are just sometimes no other feasible options. And I'm content with my choice to have the same surgery you're always complaining about. You just need to learn that what's done is done, and find a way to make the best of it. There's no sense being miserable all the time, and there's no sense talking down about a surgery that has saved many lives, including mine and my father's.

Don't let Miserable get you down. Be positive! Sometimes, that's the best medicine. You get out of life what you put into it, you know?

Hannah, you are absolutely correct...positive thinking goes such a long way, and negative this and negative that makes ones life absolutely miserable. It's up to the individual how they deal with things....I believe in accepting what is, and not looking back over my shoulder at what "might have been". That makes no sense to me at all. Shoulda, coulda, woulda....be thankful for what we have. That's the bottom line. Do I resent someone who doesn't have UC and other problems like two hip and one knee replacements? No, I don't resent them and the entire world...I have dealt with what I have and lived with it.

Hannah is absolutely wrong! J Pouch surgery is nothing but a stop gap bandage procedure. I've been living with a J Pouch for 24 long years now. And I only wish the alternatives I see now were open to me many years ago. That's because once you amputate your colon, there's no turning back. I'm stuck between a rock and hard place now for the rest of my life. I can only pray that somebody finds a way to transplant a colon now. I certainly don't want to opt for any of the other surgeries, such as an ostomy. I lived with a temporary ostomy for 30 days already. And after that long 30 days, I can certainly understand why we were born with our intestines intact.

Hannah is special...she deals with the hand she was dealt...sometimes that's easier for some than for others. I give her all the credit in the world. She has moved on with her life, going to school, and is never complaining about her situation. She has accepted it and I really respect her for that. She is a very special young lady. We can all learn from her, that's for sure.

Czech, take a deep breath and try to see two views on your situation. Truth be known, this is your situation, and Hannah and I are not trying to tell you there are no other alternatives. Talk with your Dr., find out what he suggests. If you are not sure about what he tells you, get a second opinion.

Also, there are remissions of UC. I have been in one for quite awhile. I had a little bump in the road after my latest hip surgery on July 16, but all is well again. It has been a year now for my remission (except for the hip thing). But I am always aware that the UC could come back full force at any time. I am on Lialda (mesalamine), and Lomotil. I was on a low dose of prednisone but I'm not on it now. Also, sometimes UC flares in the spring and fall. Not always, but sometimes. So if you are not having severe UC symptoms, try to roll with the punches if you do flare in spring or fall. .

Also, your diet is very important. Keep track of what might be the cause of your urgency issues. Make yourself aware of what you can and cannot tolerate. This makes a big difference in controlling the urgency situation. But then again, because UC is unpredictable, you might be able to tolerate a certain food for awhile, and all of a sudden, its a problem for you. Again, keep track of your diet. Stay away from fried foods, fresh vegetables, some fruits, and try to eat mild foods, like baked potatoes, rice, broiled chicken, sweet potatoes, etc. You can go on line for find suggestions for a good UC diet. Again, it means eliminating some of your favorite foods and learning to like others that you never did before!

So, what we're trying tell you is that you can be in control of some of your symptoms, but maybe not all. It sounds like you might be in the early stages of UC. You can control this, Czech....we have confidence in you. Now you have to have confidence in yourself.

Take care, and let us know how you're doing. We really do care.

You have to remember that people generally post on these boards when they're having problems - when they aren't they're usually not around (I should know - I've lurked but my last post was 3 months ago).

I dug around and found one of my old posts with an IBD starter diet. Not everyone has trouble with all of it, and of course there's always something else that a person could react to.

* eat smaller meals at more frequent intervals
* avoid eating many processed foods
* avoid citrus fruit and anything highly acidic
* reduce the amount of rich, greasy and fried foods
* limit consumption of milk and milk products
* restrict your intake of high-fiber foods
* avoid whole corn (inc popcorn)
* cut back on sugary foods
* avoid alcohol (esp beer)

Am reading everything here. Appreciate all the information. Next Dr appt still a week away but I'm getting ammo for that discussion. My GI Doc seems very willing to talk and answer questions so I'll be prepared. Finding it a little difficult to tell what foods react as I generally have 2 meals between incidents and how to tract that. Is any reaction fairly immediate or from the meal 5 hours

Everyone differs on this one. I could not tolerate salads very well, and I normally passed them within a few hours. Other foods would maybe take 24 hours. It is difficult to keep track of this, but in the long run, it will help you tremendously. Just avoiding some of these foods will help you quite a bit.