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I thought you would live a normal life?

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Posted 12/2/2012 2:40 PM (GMT 0)
Sugarcrave,

Welcome to the forum, btw.

I live a normal life.

My UC is in remission thanks to a variety of different things:

diet modification, certain supplements like L-Glutamine, slippery elm powder, probiotics, various others,  and LDN - low dose naltrexone.

I have my routine now, it's different now than my pre-UC (way way before then) routine.

Instead of gorging on gluten and dairy products - which are inflammatory long term, I concentrate on a gluten free and dairy free diet - Paleo which is another layer of anti-inflammatory as well. Instead of a bagel for breakfast, I have my whey protein shakes filled with liquid minerals and liquid vitamins. And I can tell you that I am much healthier today than way back then.

Do I miss my old routine, not one bit!

I do cheat once in awhile, but make sure to take my cheat remedy when I do.

I don't have to worry about locations of bathrooms anymore since being in remission.

My reason for staying on the forums, even though I am in remission, is to help others... help them see that there are other treatments available other than the ones being pushed by doctors and big pharma.

My suggestion: see what changes you can make to your diet, add some supplements, and look into LDN, low dose naltrexone.

There are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

 

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

 

 

 

Posted 12/2/2012 3:45 PM (GMT 0)
Long story short, I quit responding to Pred, Asacol, Pentasa and Immuran, so took a holisitic approach. I found remission for 8 years, until I got pregnant, and didn't respond to ANY of the steroids the doctors tried. As a last ditch effort to save me and the fetus (and against my will,) they started me on Remicade.

My hair is falling out. I have psoriasis and eczema that never seem to want to go away. I have a giant crack in the corner of my mouth that does go away for a little while, but then I wake up one morning, stretch an yawn, and it's back for another two or three months. I've lost sensation in the tips of my fingers (Great for playing guitar.)

I had to quit looking for the sociological "normal," learn to adjust to my new normal, and count my blessings. I'm alive, I have my colon, and I have a beautiful little girl. Quit thinking about the things I CAN'T do with my illness, and focus on the things I CAN. Maybe I'll never be able to work again, but I can bake. And cookies don't complain about my bathroom breaks.

Normal is what you perceive it to be from here on in.
Posted 12/3/2012 4:38 AM (GMT 0)
When i was flaring: i was far from normal - multiple bathroom trips, fatigue, weight loss, unable to eat much, disinterested in going out and living.

Now in remission: absolutely normal life. Sure i follow gluten free primal diet with TCM modifications. But really, that's easy once you know what to avoid.

Don't worry!!! there is light at the end of the tunnel.

P.S. from reading responses here i think the answer to your question depends primarily on whether you get into remission without strong med side effects. If you do then you are 'normal' again, maybe with some food restrictions and stress reduction strategies. If you don't, well, then you have to find a 'new normal'.
Posted 12/3/2012 5:15 AM (GMT 0)
TCM means?
Posted 12/3/2012 11:21 AM (GMT 0)

I only check this forum when I get a little bored at work, but i've been promoted recently so have a career. and minus a few normal changes my lifes exactly the same, if not a lot better than before my diagnoses.

Sure I've had flare ups, took neigh on a year to get back on my feet from the first and when poorly (2 flare ups in 3 yrs, the second not long lasting) i tire easily. But I eat what I like, drink what I like (no energy drinks though, so no jagerbombs but thats no issue) and go out when I like - which is often.

When I was diagnosed at 23 I remember googling "will I ever eat wheatabix again" as i lived on them and panicked I'd never be normal again. just had my usual 3 for breakfast.

taking things easily can be quite interesting, as can learning your limits, then smashing them all again later.  

have fun.

and id define normal as how it was before. but yes, its subjective

Posted 12/3/2012 1:37 PM (GMT 0)
I think the thing to remember about UC is that it is a spectrum, like autism, with people at each extreme end of symptoms and severity, and every combination you can think of in-between. Not everyone can continue their former diet and routine with the addition of a few meds. By the same token, not everyone ends up running through every medical, biological and diet option without finding relief. I seem to be one of the luckier ones who respond well to the first-line meds, almost symptom-free after two months of only oral mesalamine, probiotics, fish oil supplements and some temporary changes to my diet, despite extensive inflammation and pretty nasty symptoms to start with. I'm starting to resume some of my pre-flare eating habits (whole grains, higher fibre cereals), I have no urgency issues, and right now I can go wherever and do whatever I want without worries (although the UC lingers at the back of my mind, and that may never change). I know things will probably take a turn for the worse again sometime down the road, but for now I'm enjoying and grateful for every "normal" day. Hopefully you will end up being at the milder end of the spectrum, too. If not, I think you'll find many examples on this forum of how there is hope and how people can cope and continue to function even with the most severe, stubborn UC.
Posted 12/3/2012 1:44 PM (GMT 0)
I think my life's pretty normal, but my UC is extremely well-controlled. I think it's very important to remember that this forum represents, by in large, the portion of the UC population that's having trouble managing their disease.
Posted 12/3/2012 3:37 PM (GMT 0)
good stuff missmarple -

and kudos for "turn for the worSE"
Posted 12/3/2012 10:03 PM (GMT 0)
I live a pretty normal life. I certainly do not see UC getting in the way of things for me.

I rarely get flare ups, and when I do they really aren't that bad at all. I've had like 1 in the past 6 months, and it just caused me a little discomfort for about an hour.
Posted 12/3/2012 11:30 PM (GMT 0)
wow, a whole hour of discomfort????
I couldn't handle it.

q
Posted 12/3/2012 11:34 PM (GMT 0)

quincy said...
wow, a whole hour of discomfort????
I couldn't handle it.

q

I know, I read that too... o.m.g. If I had her case, I wouldn't even have found healing well. shiiiiit, I wouldn't have been diagnosed. lol
Posted 12/3/2012 11:46 PM (GMT 0)
I guess I'm getting back to normal - but even when I was flaring really badly, running to the bathroom many times per day, I was still pulling a 50-60 hour work week. That likely means my flare wasn't THAT bad (I wasn't bleeding so bad as to need transfusions, etc.) but I also work in a tiny law firm with a bathroom that isn't far, with a commute that is only about 10 minutes. So in that I'm lucky!

I was just diagnosed in October. It's pretty scary, but I'm starting to believe that we really can adjust.
Posted 12/4/2012 12:18 AM (GMT 0)
"and it just caused me a little discomfort for about an hour."

one yursaman's hour is another yurasman's frickin ........ forever !

sheesh !
Posted 12/4/2012 12:22 AM (GMT 0)
yuraman shouldn't be allowed here. (just kidding)

It's like me going in the chronic pain section and saying:

My pinky finger hurts sometimes,guys. what do I do??!?!one11111!!!

meanwhile people there can't move and are bed ridden.
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