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SO frustrated any suggestions would be appreciated

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Ulcerative Colitis
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Posted 3/14/2014 10:39 PM (GMT 0)
hello,
So I have basically been on all meds, tried lots of diets, and never had any relief in 13 years from uc. Last colonscopy my doctors suggested the j pouch surgery. I really don't want to do it, I"m 29 years old, so the nest day I started a diet- mainly homemade chicken soup and cooked veggies, fish and a little bit of fruit… I instantly started feeling better, better than i ever have! It was amazing! For like, 10 days…

then I left on a trip, for 2 weeks, I pretty much stuck to my diet actually, making the soup where i went.. but i just got progressively worse, and now Ive been home for a week, sticking to the diet diligently, and I just seem to be getting worse and worse..UGH i'm so so frustrated, I don't know what I'm doing wrong, I was starting to get some much better, I'm not doing anything different? ***

thanks for listening to my rant, i know you all probably understand :) trying to stay positive, but i don't want to eat chicken soup everyday if I'm going to the bathroom this much, i might as well have pizza.
Posted 3/14/2014 10:42 PM (GMT 0)
I'm new to this so I try to be careful about giving advice. While you wait for someone, you might list the meds you have tried along with the doses. It seems to help the experts here
Posted 3/14/2014 10:51 PM (GMT 0)
Yeah. Many people come on here saying they have tried "all the meds" when they really haven't. What about probiotics and supplements? Many of these actually work.
Posted 3/14/2014 10:52 PM (GMT 0)
I was in the same boat as you. Look, nobody WANTS to have surgery but sometimes that's what it comes to. If you're not ready then you're simply not ready. Have you been on any of the biologics?

I had j pouch surgery almost 4 years ago. I pretty much went kicking and screaming....it took me two years to come to terms with the fact that i had to have it done. I was terrified but I wanted my life back. Let me tell you I'm SO happy I had it done. No more UC, no more drugs, I can eat real food again. And never again do I have to worry about when the next flare is going to rear it's ugly head.

Just wanted to give a positive plug to having surgery. It's not all gloom and doom. Good luck with whatever the future holds for you. Hope you can find something that works.
Posted 3/14/2014 11:29 PM (GMT 0)
I'm very new to this and have only tried the 5asa's and am seeing good results. That being said, if I had tried the big guns and was still feeling crappy, I would whole heatedly agree to the surgery. To me, surgery is less scary than wasting my life in the bathroom. Just my two cents.
Posted 3/14/2014 11:42 PM (GMT 0)
Are the fruit and veggies fresh organic? You dont want alot if pesticides mucking things up.
Dont deprive yourself of nutrition. Keep the colors diversified.
Posted 3/14/2014 11:43 PM (GMT 0)
Can you list what meds you've tried?
Posted 3/15/2014 7:43 AM (GMT 0)
I'm confused by you saying you've tried all the meds and diets and such... but suddenly after 13 years, a homemade chicken soup is what gave you relief?

I wouldn't count on the soup/vegs/fruit as being what made you feel better for those 10 days. Especially if you've tried SCD or any fresh/organic diets in the past. Since you didn't notice any big improvements before.

Anything else you changed around the time of your last colonoscopy? Maybe being cleared out from the prep helped ease some of your symptoms and the "cleaner" foods just took a few extra days to start hurting your insides.
Or the placebo effect. being 29 and facing surgery... with a new game plan and a fresh start... I can see having some placebo effect of things working out for a few days... but then the UC just starts taking over again.

Not sure... just some ideas I'm throwing out there for ya.

And yes, I agree... please list for us what all you have tried for meds/dosage, supplements, which diets... what worked even a little, what made things worse... etc.
Posted 3/15/2014 11:27 AM (GMT 0)
I will agree with embers that after my colonoscopy I felt better for a few days after...I assume because of the prep cleaning me out. That's a very real possibility.

And yes, list your meds, dosages, how long you took them....

If you have, in fact, tried everything...surgery may be the way to go...
Posted 3/15/2014 12:11 PM (GMT 0)
Sometimes there's no logic to this thing.. or too many factors that one can't keep aware of.

Keep trying things out, or take a course of Pred if you haven't? Surgery is probably the last option, but if it saves your sanity, you might consider it. It sounds odd you went downhill after your trip.. I wonder if you picked up a bug/bacteria on the trip somehow? Maybe if you get your flare under control, you can go back to the soup or protocol that helped you.
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