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LindsayCD87 posted:
Hi, I'm new to this community and new to UC. I just found out on Tuesday. But at least I don't have cancer. I also have PCOS (PolyCyctic Ovarian Syndrome). I'm only 24. I currently feel so totally alone, my parents are out of town, my sister and friends all seem too busy right now.
I guess I just want to let everyone know that I'm here. I'm learning and I just want my stomach to stop hurting and to stop pooping. I'm trying my best to stay hydrated, I feel like I should buy stock in Gatorade.
Any beginning tips out there? I'm taking sulfasalazine (sp?) and my next dr apt is on Monday.
Thanks, Lindsay
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arbob5 responded:
Hi Lindsay. I have UC, diagnosed almost three years ago. It is a difficult disease to deal with, sometimes, and very unpredictable. I had been on sulfasalazine but my GI doctor switched me to Lialda, and prednisone. My UC is now under control, but I also am on Dr. Swanson's Ultimate Formula Probiotics, as well as Lomotil. I have not had a flare for a few months, and the last one was very short-lived, thank God.

However, my current meds have done the trick for me. But we all have to realize what works for one person may not work for someone else. That's just another unpredictable UC quirk.

When you see your doctor on Monday, ask as many questions as you can. And, by all means, remember that we are here for you. Keep us posted, ok? We all care a great deal for each other. Just don't feel alone....again, we're here!
 
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hannahleigh89 responded:
Welcome to our community. Sorry that you're having to deal with this, but we're glad to have you.

I know two people who had success with sulfasalazine. I have/had Crohn's Colitis, which means I got smacked with both sides of IBD, so my case is a bit different... But my dad and brother both have/had UC. I say have/had because my father and I are both now sans colons, so I'm not sure if you are supposed to say you "have" after the colon is gone. I'm still learning, lol. They both started treatment with sulfasalazine and it got their disease under control. But then they both quit treatment; my father because he didn't understand it was a lifelong illness and my brother because he's stubborn and doesn't want to admit anything is wrong with him.

I hope it works for you or that you quickly discover some combination of medications that do the trick. Keep us informed or let us know what we can do to help.
 
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miserable_sob responded:
Gatorade is pretty harmless with UC. Finding the right diet is very important now. Google all kinds of UC alternatives too. I say that cuz all the meds they gave me in my UC days failed and I wound up with a lousy J Pouch. I'm just sorry I can't get my diseased colon back now and try some of the alternatives that I didn't know of back in my UC days when the internet was basically non existent.
 
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mindyj1971 responded:
Welcome to the group, Lindsay! I'm sorry that you are feeling so alone. This disease can be so isolating at times....I'm so glad that you are reaching out to us! The very first thing I did when I got home from the hospital after being diagnosed was finding this group! They have saved me so many times. It is wonderful to have a place to come to where everyone understands all that you are going through. I've had Crohn's for almost 3 years now, and it is still hard for family and friends to realize that if I spend too much time out in the hot weather I can get in to trouble with dehydration. There are just so many things that we have to watch out for, but like I said....it's great to be able to come here and talk about it.

I was like you in the beginning with the Gatorade....I lived on that stuff for a good year. I can't tell you how many times I ended up in the hospital because I was dehydrated. I can barely drink the stuff now....it gags me. I've had to do too many preps using it and now I can't even stand the smell of it. I do drink lots of water and BOOST.

My only tips are for you right now are to pay attention to what your body is telling you. If you need to rest, then rest. Drink as much as you can force in you and be kind to yourself. We are always here when you want to vent,scream, cry.....whatever:)

Big hugs to you....
Mindy
 
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miserable_sob replied to mindyj1971's response:
I downed 32 ounces of Powerade this morning after going for a long 2 hour jog I used the zero calorie version of it. And it does taste great at times, especially when you're dying of thirst. You have to be careful of taking Imodium though. It can easily dehydrate you, especially on hot day when you're dying of thirst and living with a J-Pouch.
 
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Mary332 replied to miserable_sob's response:
Miserable_SOB,

What is living with a J-pouch like? I read on your profile that you regret it. I was considering it if I can't get my UC under control. I have had it for about 6 years and have never really been able to get into remission beside once last year for about 4 months. Do you still have UC like symptoms?
 
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miserable_sob replied to Mary332's response:
Mary, I only wish the internet was around when I made my decision to receive J Pouch surgery. The problem is once you choose it there's no turning back, so you better get use to living with little to no colon for the rest of your life. I've lived like this for over 20 years now and I'm upset there's no real way to get rid of this pouch. The only alternative is even worse. I can say that since I did live with a temporary ostomy for 3 months. It was no joy. Although a friend of mine disliked her J Pouch so much, she's actually happier now living with an ostomy. That's not to say everybody dislikes their pouch. Some people like them, while others aren't too happy. From the way it looks or the way everybody talks, I get the feeling they'll never perfect colon transplants in our lifetime.
 
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LindsayCD87 replied to arbob5's response:
Thanks for responding! I've never heard of Dr. Swanson's, but I'll look into it. Thanks!!
 
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LindsayCD87 replied to hannahleigh89's response:
Thanks for responding!
 
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hannahleigh89 replied to Mary332's response:
I also have a J pouch and I adore mine. I'm still having problems because I have Crohn's on top of the UC that my colon was removed for, but my quality of life has greatly improved although my Crohn's isn't nearly under control yet.

It's important when considering the surgery to look at both the pros and cons. Miserable obviously hates his and regrets the decision. I'm sure there are many other cases just like his. But I love mine. It all depends on you, how bad your disease is, your body... A lot of things. Nobody's body reacts the same to different stimuli. My pouch is different than Miserable's, and yours would be different from mine.

I'm sure I've just said a lot of things that you already know, but it's a huge decision and it's important that you don't take it lightly and get as much information about it as you can.
 
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arbob5 replied to hannahleigh89's response:
And in the past 20 years since Miserable got his pouch, things have changed and improvements were made. Again, keep track of any questions you have, write them down, and when you see your doctor the next time, take that list with you. That is so important....we all need to be well informed.

And Hannah and Mindy are so wise in their responses to your questions. They have both been through so much and have a lot to offer in the way of information and suggestions.

Take care..keep in touch...we do care here!
 
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miserable_sob replied to arbob5's response:
I disagree with Arbob's statement regarding changes and improvements, mainly because she hasn't stated any of the changes in J Pouch surgery. In fact I still see people suffering through the same ailments that I went through such as Pouchitis. And I still see people being misdiagnosed when it comes to Ulcerative Colitis and Crohn's Disease. That's where I got lucky and I'll give my doctor credit for not misdiagnosing one for the other. It's still a problem you have to be aware of. When I originally had my surgery, since the internet didn't exist then, the whole idea of being misdiagnosed wasn't on my mind at the time. It certainly would be now though if I was considering J Pouch surgery.
 
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miserable_sob replied to miserable_sob's response:
I should mention too that I admire Arbob for being able to control her Ulcerative Colitis and choosing to stay away from the knife. I only wish I was in her shoes when it comes to that.
 
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LindsayCD87 replied to miserable_sob's response:
Thanks everyone. I saw the dr today. I'm joining a blood and stool study, just give some blood and some stool and get paid $225! But now my big issue is the arthritis. I'm 24 but feel like I'm 80. I have an apt with a rhumatologist next week, made the apt before I knew about UC. Anyone have any ideas what to do about the arthritis pain??
I'm still shocked at how quickly my life got flipped due to this. 6 weeks ago I was totally fine.


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