Questions and worries of an UC new comer.

Hi there,

first of all let me share my positive impression about this forum. With so many interesting discussions on specific topics about UC, it's nice to see so many members sharing their stories.

To make a long story short, I just recover from my first nightmare UC (severe) that costs me 2 stays at the hospital (1 week each in a 3 weeks period) and a loss of 10 kg of muscle. Now all symptoms are gone. With all what I used to read, I suspect as cause: air pollution and/or stressful job and/or emotional shock.

Here's what's related to the subject of this post:

DIET:
By reading posts on this forum, I've been impressed on how diet looks important and demanding.
- Does everybody have to follow a specific diet in remission? It looks like I am able to eat (almost) everything by remaining cautious though.
- Does some people feel free to eat anything while in remission without problems?

RELAPSE:
I guess everybody has a different story and it will be hard to get a general answer.
- Does anybody would be able to say how to prevent a relapse or what lifestyle to have to prevent it? and
- What are the good reflex on the first symptoms? Wait few days to make sure it's not benign disease or immediately go to see your doctor?

MEDICATION:
For those in remission, is it possible to get rid of any medicine?

Hope your answers will be useful for all new diagnosed UC disease if not already done so.

Jack

I have also read that Mesalamine is forever and I would prefer that a thousand time rather to re-experience a sever UC again. Thanks for for the advice.

I do not follow a specific diet. I am a food lover and to be on a strict diet is not living to me. So I have just cut back on some things for now, raw veggies, most fruits, nuts, popcorn, soda. I will have my colon removed before following some of the strict bland diets. That's just me though.

Relapses are tough to say what for sure causes them. I truly believe that you could do everything right, be in remission for 10 years and then out of nowhere it comes back and knocks you on your ass. You can help it possibly by remaining stress free and not abusing your body and continuing to follow a path that works for you.

A lot of people choose to stop medications while in remission and then when the problems come back they jump back on them. Some continue to stay on it even while in remission to try and prevent a flare up. The choice is up to you, personally I am tapering off of pred right now. My doctor wants me off of AsacolHD eventually as well. That will leave me with Remicade and Imuran as my maintenance drugs.

Jack,

Welcome to the forum.
Some of us feel diet is very important, and others of us feel it is not.

I started out with SCD diet, but eventually migrated to Paleo which I did great on - and that makes sense to me because it is an anti-inflammatory diet.

But I think supplements are also very important.
And I do believe in LDN. And other than LDN and my supplements, I do not take any typical UC drugs.

But here's what's helped me:
As a newbie to the forum, I think it's important for you to know that you have options, which your doc probably won't tell you about. So let me share with you what's worked for me.

Some meds work for some and not for others.

For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with exacerbating its symptoms!

I found that by doing these things it helped control my symptoms by 75%:
1) adequate high intake of vitamin d3 ( need to get your levels checked first)
2) probiotics are key, are you on any?
3) slippery elm powder to coate the intestinal tract helped greatly
4) l-glutamine amino acid powder for long term colonic repair
5) curcumin is an important anti-inflammatory
6) astaxanthin and omega 3's are also important
7) food combining
8) diet modification as in gluten and dairy free, Paleo diet
9) rectal meds help lots of folks out

Despite the decrease in symptoms, I was still BLEEDING very heavily at every BM. The Last 25% was taken care of by LDN, low dose naltrexone, which put me in remission. Within a week of starting LDN, the heavy bleeding ( too many times to count with blood clots and mucuous) which I had had for 1 1/2 years straight, went down to ZERO. And that is all thanks to LDN!

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

IMO, it isn't one size fits all, and you have to find what works for you, and it may be a combination of things like diet, meds, supplements, etc...

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.

Every GI will tell you that diet has nothing to do with UC so if you find you are able to eat anything, awesome! If you find foods that cause problems, eliminate them. I keep a journal of foods I have found bad for me. Right now it's corn, popcorn, coffee, and greasy foods mostly.

As far as relapses go, I believe they are pretty random. I think someone else talked about how you could be doing everything right, but still get a flare up and I believe that to be true. Sure stress or something could be a small trigger, but I think your body just decides on its own unfortunately.

With meds, I can't really answer because I'm on remicade which you can't stop in remission because once you stop, you can't go back on it. Some try, but most have bad results. I would say it's pretty safe to say if you stop what put you in remission though, that you will go back into a flare without it. Stay on maintenance meds would be my suggestion.

One of the most important things to learn about this disease is everyone responds differently to treatment; no two cases of uc are the same. I eat whatever I want as no diets or supplements seem to impact my uc; while others swear by those things and say they've achieved remission thanks to them. Certainly, try lots of things that do no harm, try SCD, Paleo, or gluten-free diets but just know they don't work for everyone; myself included (can't hurt to try though).

Uc can have an unpredictable course, especially within the first 5 years of diagnosis. Nobody knows exactly what causes uc flareups, so nobody can point to a lifestyle change or anything specific to cause them. Even those among us that play by all of the rules (take our meds daily, follow dr directions) get stung with flareups. Uc tends to spread upward and get more severe in the first few years. That said, you shouldn't run to your dr just because you had a bad day (everyone has them regardless of whether they have uc or not). However, you should be mindful of bad trends and see your dr if things are noticeably getting worse, as those could be the early signs of a uc flareup. Flareups can be hell, and if you can catch them early and intervene early, then all the better.

MikeSoCal said...
I do not follow a specific diet. I am a food lover and to be on a strict diet is not living to me. So I have just cut back on some things for now, raw veggies, most fruits, nuts, popcorn, soda. I will have my colon removed before following some of the strict bland diets. That's just me though.

The strict diet should never have to be forever. That's the thing to remember. You try a diet and if you dont see results after giving it a 6 week trial, you adjust it. Eventually you should be able to eat all the foods you once did.