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DON'T GIVE UP HOPE! The answer is all around you

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Ulcerative Colitis
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Posted 9/22/2011 6:11 PM (GMT 0)
Yeah, he's basically blaming us for getting UC. Not being a "debby downer," just telling the reality of the matter.
Posted 9/22/2011 7:36 PM (GMT 0)
i too don't like the fact that usually when someone posts about success diets stories or asks questions about it there's a lot of people here that come up and post: "nonsense, it did not worked for me" or other stuff like this.

there are different stages of UC - some of them can be controlled with lesser measures than surgery or immunosupressants, like diet only. or like 5-asa only. or 5-asa&diet. for me it's diet AND 5-asa's. if I would have a change to choose - i would prefer to be 5-asa's ONLY. but ... i have to keep both UC and AS under control. the only thing that helped was this combination.
And believe me, i know how it's to feel like crap and hope to die - i've stood about 5 months in my own bed and could not walk to eat my own meals becase of the pain i was in. I've had a bed in my office for another 6 months and worked 30 mins on a chair and rested there for another 30 mins. It was the only way to do it...


I am also feeling strange when i read some posts like: "Diet is nonsense, i eat whatever i like and it does not bother me", but when i look into those people signature i see the strongest medications possible there, or i see them post them about considering surgery or how miserable life is without remission for years. I see a huge contradiction in this. Or maybe they just gave up the fight.

Other people are way beyond this point and need stronger medication or surgery. I emphatise with them all, i've seen with my own eyes cases that were far worse than my own, and i am sure that most of them did not want to get there...

I know that surgery is the best option for some. I know that strong medication is the only thing that remains for others.

But for those who are beyond this point and need extreme measure, please, do not come every time when someone asks for alternatives and squeeze the last drop of optimism from them. In a thread like this i see people who make me believe that they are NOT happy for those who can control their UC with lesser measure. Could it be so? Am i reading this thread in the right key?
Posted 9/22/2011 8:12 PM (GMT 0)
Alinus
I try to be open-minded about what people say helps them. The thing that did not make me happy with the original post was this statement:
"It is our LIFESTYLES that are causing the inflammation!

If this had not been said I guess I would not have minded as much. I feel blameless in getting UC and I think everyone here probably feels the same about theirs. My lifestyle was not to blame for inflammation, this I am 100% positive about. And as someone mentioned there are children, vegetarian from birth, that get UC. Their lifestyles are to blame?

I want to hear about what works for people to achieve remission but not if it includes finger-pointing.
Takecontrol-I'm not picking on you because it's hard to write anything that everyone agrees with. As you see everyone has a strong opinion, lol.

P.S. Alinus- I think you are a very positive poster and agree that some people jump too fast to to say "It doesn't work for me". OK so it doesn't work for them, why are they the first person posting in that thread then?

Discussion is good however. And I'm always happy to hear of someone getting better.
Posted 9/22/2011 8:20 PM (GMT 0)

imagardener2 said...

P.S. Alinus- I think you are a very positive poster and agree that some people jump too fast to to say "It doesn't work for me". OK so it doesn't work for them, why are they the first person posting in that thread then?

this is the thing that annoys me the most.

to be frank, i do not care what that guy posted in the first place - the things that come after that made me post my point of view.
Posted 9/22/2011 8:40 PM (GMT 0)

Alinus said...

imagardener2 said...

P.S. Alinus- I think you are a very positive poster and agree that some people jump too fast to to say "It doesn't work for me". OK so it doesn't work for them, why are they the first person posting in that thread then?

this is the thing that annoys me the most.

to be frank, i do not care what that guy posted in the first place - the things that come after that made me post my point of view.

Don't read the replies then...problem solved. wink
Posted 9/22/2011 9:22 PM (GMT 0)
lool. don't post in such treads. to keep on the same kind of argument. do you think this is the smartest thing you can come up with?
Posted 9/23/2011 1:59 AM (GMT 0)
There is no blaming in this thread. Having UC is like having a bomb dropped on you -we all understand that.
It's how you respond to adversity that matters and we all certainly know that different things work for different people. BUT let's try to have some optimism huh?
Posted 9/23/2011 2:57 AM (GMT 0)
I truely always believed that my UC came from processed foods but im no scientist. All I ate was meat and processed foods before UC.


TAKECONTROL, can you please tell me at what level is your UC? Im in the middle of moderate to severe
Posted 9/23/2011 3:36 AM (GMT 0)

Alinus said...

In a thread like this i see people who make me believe that they are NOT happy for those who can control their UC with lesser measure. Could it be so? Am i reading this thread in the right key?

No, I don't think you're reading it right. I didn't see anyone come on here and say diet is nonsense or that they weren't happy for the OP. We are simply stating that diet and exercise are not a cure and are not the reason we got this disease. When people come on here and claim they've found "THE CURE" it really aggravates me. It's no one's fault they got UC.
Posted 9/23/2011 4:25 PM (GMT 0)
This is interesting. I agree with Alinus and have noticed 2 general camps. All for the toxic meds and abandoned diet changes -or- diet is the way to restore health camp.

I am in the latter camp. I have been on 100 MG prednisone twice but refused surgery when it did not work. Hospitalized twice and even was in the ICU because of UC-related thrombosis resulted in requiring coumadin/warfarin blood thinner yet I was still bleeding in the gut from a flare. I think I had a really terrific reason right there to go the surgery route but I refuse.

That being said I hear bits of wisdom in most of the posts in this thread. Primarily Suebear detailing how she was in this camp for 10 years and it still caught up with her.

It is true we are all different & picking the UC lock is an individual experiment. For example I do great on quality meat, pasta is not a problem for me. Too much juice is.

An X factor I am noticing is that extreme stress that others notice and comment how I remain cool is only because I feel I have some measure of control - the stress calls to action. Stress that happens to me where I have no control is immediately transmitted thru the enteric nervous system to my gut. Reducing the 2nd type must go hand in hand with diet in my opinion. Exercise is not an issue but I have come to realize daily training is probably too much inflammation for my body to keep up with.
Posted 9/23/2011 5:24 PM (GMT 0)
My intention was to give people hope and when they do get past this current flare (and they will!), to really look at what is going into their bodies. I also have a feeling that many in this forum are not working out regularly to release those endorphins and battle negativity arising from being struck with this annoying disease. I excercised at the same pace DURING FLARES and it was the one time each day where I wasn't in pain or thinking about the bathroom!

Right now things are working out for me but I can wake up tomorrow with the beginning signs of flare. I still take Colozal 3 x 3 and am looking to taper to 0 at some point but I'm proceeding with caution.

Staying positive (this too shall pass), eating right, moving your body, FORGIVING EVERYONE are keys to getting through this. Having U/C is the worst and best thing that has happened to me. If it wasn't for UC, I wouldn't have searched so hard for answers and been on a quest for health. Take U/C and spin it into something beneficial..I know it's hard..we've all been there...


It's never about "What can I do to not get sick?" it's "What can I do to optimize my health?" ...the latter term is positive and has direction.
Posted 9/23/2011 6:09 PM (GMT 0)
A very positive message Takecontrol :)
Posted 9/23/2011 6:18 PM (GMT 0)
AMEM, bro/girl
Posted 9/23/2011 7:10 PM (GMT 0)
I hate to keep this going but...takecontrol, please keep in mind that there is positivity and there is blaming. I do wish I had your positivity, you have a great outlook on this, but to assume because you are able to exercise through your flare(and good for you, honestly) that the rest of us are lazy for not being able to do is not cool. You have been sick, you know the fatigue and the pain that goes along with this, and sometimes one just needs to rest. Your overall message is a good one, so lets add to your list of things to get through this: not judging how others deal with their disease. I do hope you continue to stay healthy!
Posted 9/23/2011 8:13 PM (GMT 0)
I apologize if I came across judgmental but my goal was to provide an example of what is working thus far and my approach. This forum is filled with suffering and sickness and even if one person could think about the disease in a different light I'll be happy.

Inflammation is generally caused by an acidic state in the body. North Americans eat too many dead processed foods which causes this acidosis. The key is to get ones body in an ALAKALINE state by eating raw fruits and vegetables. Even better, drinking the juices of these fruits and vegetables without having to digest anything (giving the colon a rest) is a great alternative.

For years I completely avoided fruits and veggies because of what I read with CCFA and other resources regarding U/C. I was afraid of scraping the colon, reaggravating the ulcer, etc...I would also get very gassy and bloated when consuming them. I found a way around it by consuming the life energy of these vegetables through juicing and discarding all fiber. I then slowly incorporated whole fruits and vegetables after the natural pro and prebiotics colonized my colon (through the extensive juicing) You would be amazed by how many probiotics and prebiotics are found naturally in produce! Perhaps the years of no fruits & veggies cased an imbalance of bacteria in my colon causing the emergence of U/C! Who knows though right? The medical community is still in total confusion.

Consume living matter and you will enhance your life. These beautiful colored fruits and vegetables are put on this earth by god for a reason. To energize us and more importantly, HEAL us.

I am not a medical doctor and this is not medical advice.
Posted 9/23/2011 9:16 PM (GMT 0)
Takecontrol,

I understand your post.  It didn't come across as blaming to me. It's all in the eyes of the reader.  I agree we need toi do our own research and not just blindly follow our doctors advice.  If I did that I woudl be scheduling surgery right now, but am doing better though I got a long way to go.  There are other approaches adn methods out there to help us deal with this.  You need to be open to try and take a positive approach in this situation.

Bravo Takecontrol for your bravery in stating your mind.  That's what make this forum valuable!

Posted 9/23/2011 9:41 PM (GMT 0)
Take Control,

I agree that we need to take control of our condition. However, you will find out from reading this forum that what works for one doesn't necessary work for everyone. Fruits high in fructose give me massive diarrhea. I'm doing great by avoiding them. Some people are lactose intolerant, some yeast intolerant, some wheat intolerant, some gluten intolerant, ... I just happen to be fructose intolerant. Unlike other sugars, fructose is digested almost entirely by the liver. It doesn't give my digestive system a rest. I used to drink juice every day before I got this disease. In fact, when I had my most serious flare, I tried consuming juice and nothing else. My liver can't handle it. Fructose gives me massive diarrhea, bloating, gas, and even urgency. I'm now on an anti-inflammatory, anti-fructose diet, and I no longer have any symptoms of IBS.

Yes. An imbalance of bacteria in the colon is a major factor, and food probably has an affect on this. However, only to a certain extent. For those who are predisposed to UC (thankfully, not me), the bacteria in the colon can easily become imbalanced. So even if they only consume fruits and veggies, they will still flare.

As for me, I'm not predisposed to this disease. I got it after many years of abusing antibiotics. My imbalance of bacteria in the colon was caused by antibiotics, not food. Yes, food can worsen or calm my symptoms, but it can't stop a flare in its tracts. Only fecal transplantation can do that for me.

Post Edited (subdued) : 9/23/2011 3:45:09 PM (GMT-6)

Posted 9/23/2011 11:19 PM (GMT 0)
Yeah...how can you exercise when you're going to the bathroom 30-40 times bloody D a day and can't even walk due to severe pain that makes you feel like you're dying? Have you ever flared this badly? Because I was sleeping on the bathroom floor waking up every 15 minutes to poop out blood and mucous. So for you to imply everyone should exercise through their flares is slightly insulting and not sound medical advice. When you're sick, your body needs rest to heal. 

I'm glad that diet helps many here...I am simply sharing my experiences with it since you act like it's a cure.

Post Edited (Sara14) : 9/23/2011 5:49:05 PM (GMT-6)

Posted 9/23/2011 11:43 PM (GMT 0)
I am sorry if it seems like I dismiss diet as a treatment option.

I try to consistently make mention of the fact that it hasn't helped me but that I would definitely try it if I were another person with UC.

It is important to try many different avenues and find out what works for each of us. This disease is way too individual to assume that one treatment will work for all of us. If I could treat my UC with diet, I would gladly do so. Unfortunately, after severely limiting my diet for a year (during a massive flare up), I saw no change in my condition regardless of what I ate. Now that I am in remission, I've been eating as I please with no negative consequences so far.

I would try altering my diet again in the future but right now, I eat how I've always eaten, lean meats, no fast food, limited processed foods and lots of veggies. Yes, I eat candy and drink coffee but only once in a while. I have always been a generally healthy eater.

As for exercise, I do it when I feel healthy. Lately, I've felt great and I've been working out 4x a week. When I am flared up, I do not have the energy to work out and I believe, for me, that it is best if I give my body rest so it can heal.

I agree that it is important to keep thinking positive. When I am in that funk, I feel like I will never improve but that attitude probably inhibits improvement. I am trying to work on turning myself into a more positive thinker.

Posted 9/24/2011 2:07 AM (GMT 0)
As for exercise, I'm a yoga certified instructor. I also am a Bharatanatyam and Kathak dancer. I exercise a lot, not for my IBD, because I just happen to be genetically predisposed to being very energetic.
Posted 9/24/2011 2:08 AM (GMT 0)

Sara14 said...
Yeah...how can you exercise when you're going to the bathroom 30-40 times bloody D a day and can't even walk due to severe pain that makes you feel like you're dying? Have you ever flared this badly? Because I was sleeping on the bathroom floor waking up every 15 minutes to poop out blood and mucous. So for you to imply everyone should exercise through their flares is slightly insulting and not sound medical advice. When you're sick, your body needs rest to heal.

That happened to me too. I was so dehydrated and anemic, I was having trouble making it from the bed to the bathroom and back.
Posted 9/24/2011 6:25 AM (GMT 0)

subdued said...

Sara14 said...
Yeah...how can you exercise when you're going to the bathroom 30-40 times bloody D a day and can't even walk due to severe pain that makes you feel like you're dying? Have you ever flared this badly? Because I was sleeping on the bathroom floor waking up every 15 minutes to poop out blood and mucous. So for you to imply everyone should exercise through their flares is slightly insulting and not sound medical advice. When you're sick, your body needs rest to heal.

That happened to me too. I was so dehydrated and anemic, I was having trouble making it from the bed to the bathroom and back.

I was so anemic one year ago that I was browning out / blacking out walking up the hillside Cheyenne Mountain Resort in Colorado Springs with my daughter for breakfast buffet. I had to stop like an old man.

I was just down there doing my taxes with CPA and visited the resort and ran up the steep hillside, about 10 flights - I did so with enthusiasm and was not very winded. This for me was just like skiing the black diamond bumps at 11,000 feet Breckenridge post thrombosis post anemia in the late February.

Very satisfying to see the clear progress from such a low point. Iron pills helped, have not felt the need to take more lately but could use a some bloodwork in another month. Platelet count nice and low :) I feel young I hope it lasts.
Posted 9/24/2011 1:13 PM (GMT 0)
I think we all (Americans) need to eat healthier and exercise more. The current lifestyle is a major contributor to obesity, heart disease, type 2 diabetes, stroke, etc. And the money that is spent on these partially preventable (b/c there are also genetic components) diseases could be spent on autoimmune diseases, which are more complex but lack funding.

My hypothesis is that people with milder disease are able to go into remission by making lifestyle changes; but there are some of us who have more severe disease that only meds (or surgery) can help.
Posted 9/24/2011 8:48 PM (GMT 0)
Actually, I don't find this thread positive at all, and the OP seemingly has little empathy or understanding for UCers globally or subjectively.  It seems only about one issue...food...again.

No one has to justify their treatments or choices....sheesh.

And please don't bother to do the personal itemised attacks on me...a rebuttle without the attack would be much more easier to digest.

q

Posted 9/24/2011 9:22 PM (GMT 0)
Oh, definitely lifestyle change has worked for me. When I work out, I flare. When I'm sedentary I don't. So much for exercise.

As for food doesn't matter what I eat.

Bookworm, I am diagnosed mild to moderate. My disease is mild because I'm taking a lot of meds. I wouldn't trade my meds for lifestyle change just because I have a mild form of UC. What is mild anyway? If I wasn't vigilant about what keeps me in remission, all h-ll would break loose.
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