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Ulcerative Colitis
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Posted 3/15/2018 4:26 PM (GMT 0)
Has anyone improved after not doing anything? By not doing anything I mean not taking all those meds. Just keeping stress under control and taking anti inflammatory foods or probiotics.
Posted 3/15/2018 5:03 PM (GMT 0)
Prebiotics Make a big difference, got into remission with them once but only
Minor flare. I have a thread on here about natural medicine, some people on there have given some very good tips, ranging from food to natural medicines.
Posted 3/15/2018 5:45 PM (GMT 0)
I tried, and gave it a really good go, and it didn't work for me.

I didn't work, didn't keep a schedule, I didn't do anything stressful. I seriously spent the days hiking in the fresh air, but not pushing myself to any point where it was stressful. I ate clean, did SCD, ate loads of fermented foods and took probiotics...

It didn't do anything positive for my UC.

Looking back, my lifestyle was a lot better, but I personally love independence. In order to live a life of leisure you have to be dependent on someone, which wouldn't work for me long-term. I am thankful I had the opportunity to eliminate it as the "cure" for me. If you can, you should give it a try.
Posted 3/15/2018 7:33 PM (GMT 0)

notsosicklygirl said...
I tried, and gave it a really good go, and it didn't work for me.

I didn't work, didn't keep a schedule, I didn't do anything stressful. I seriously spent the days hiking in the fresh air, but not pushing myself to any point where it was stressful. I ate clean, did SCD, ate loads of fermented foods and took probiotics...

It didn't do anything positive for my UC.

Looking back, my lifestyle was a lot better, but I personally love independence. In order to live a life of leisure you have to be dependent on someone, which wouldn't work for me long-term. I am thankful I had the opportunity to eliminate it as the "cure" for me. If you can, you should give it a try.

Have you had pancolitis? Is it under control now? What meds are you taking?

I noticed you had a colectomy. How long ago? And how's your life now?

Post Edited (marcell) : 3/15/2018 1:36:29 PM (GMT-6)

Posted 3/15/2018 7:35 PM (GMT 0)

PixieAdalira said...
Prebiotics Make a big difference, got into remission with them once but only
Minor flare. I have a thread on here about natural medicine, some people on there have given some very good tips, ranging from food to natural medicines.

Same question: have you had pancolitis?
Posted 3/15/2018 7:47 PM (GMT 0)
I have a jpouch, so I do not have any problems anymore. I eat whatever, and take no drugs. Things are great for me now, but surgery really shouldn't be considered unless it is unavoidable. I failed all the drugs and I was not a responder to biologics. It's coming up on 3 years since my takedown, and my life is night and day different from living with UC. I don't go to the doctor. I don't take drugs. I don't worry about being able to be independent. In my case it was the best option. The problem with life after surgery, is that you go to the bahtroom more. The colon is where food is compacted and water is removed, so without it, you have more frequent trips. They are predictable though, and you can hold it. It's a weird thing, being on the other side, I definitely spent more time worried about drugs, doctors, monitoring, blood tests, what to eat... than I do about 5 trips to the toilet a day.
Posted 3/15/2018 7:53 PM (GMT 0)
I would love to go off all my meds and see what happens but I'm too afraid I'll flare.
Posted 3/15/2018 8:13 PM (GMT 0)

notsosicklygirl said...
I have a jpouch, so I do not have any problems anymore. I eat whatever, and take no drugs. Things are great for me now, but surgery really shouldn't be considered unless it is unavoidable. I failed all the drugs and I was not a responder to biologics. It's coming up on 3 years since my takedown, and my life is night and day different from living with UC. I don't go to the doctor. I don't take drugs. I don't worry about being able to be independent. In my case it was the best option. The problem with life after surgery, is that you go to the bahtroom more. The colon is where food is compacted and water is removed, so without it, you have more frequent trips. They are predictable though, and you can hold it. It's a weird thing, being on the other side, I definitely spent more time worried about drugs, doctors, monitoring, blood tests, what to eat... than I do about 5 trips to the toilet a day.

Were your flares very intense? How many times did you go to poop everyday before surgery? I ask all that because my biopsies say I have moderate colitis in activity. But the colon healed and it's clean and shining. There was only 1 polyp. And I poop just once per day. Sometimes, nothing happens for 1 day (which always happened, so I consider it normal). When there's a big crysis, there's a bit of blood. But only if I hold it for too long. So it could be the anus, not the colon. Sometimes I feel some abdominal pain, but only after I got extremely stressed. In 2017's colonoscopy, many scars were found in the rectum. After I managed to lower stress, it all just disappeared. But pancolitis is still there. You think my situation could worsen, even if I succeed controling the stress? It all began after my fundo surgery, which gone a little bit wrong and they had to change from laparoscopy to "open skies". It was a life changing stress when I woke up feeling that pain. After that, daily diarrheas started. I had a colonoscopy before and it showed nothing. It was all good. But in the one after the surgery, there it was,along with the scars, which are now gone. And I don't have daily diarrheas anymore. Still, I experience some urgencies sometimes. Do I have a chance that this pancolitis heals?
Posted 3/15/2018 8:27 PM (GMT 0)

Michelejc said...
I would love to go off all my meds and see what happens but I'm too afraid I'll flare.

How are your flares?
Posted 3/15/2018 9:56 PM (GMT 0)
Before surgery I wouldn't eat to avoid toilet trips. Not eating could limit me to a few trips in the evening. if I ate, I could literally go to the bathroom 20 or more times in a day, many of those times fairly unproductive, with tenasmus, blood, a lot of straining, and pain. You sound like you're pretty well controlled. I wouldn't think the worst. It is nice that you're getting informed, but I wouldn't worry about worst case scenarios. It's pretty rare that people go down that path. You will be okay, but I would recommend you find a treatment path that works for you, and stick to it. Also keep up monitoring, especially when you pass the 10 year with UC mark.
Posted 3/15/2018 10:08 PM (GMT 0)
Yes. I am 100% med free but only with specific supplements.
Posted 3/16/2018 12:56 AM (GMT 0)

notsosicklygirl said...
Before surgery I wouldn't eat to avoid toilet trips. Not eating could limit me to a few trips in the evening. if I ate, I could literally go to the bathroom 20 or more times in a day, many of those times fairly unproductive, with tenasmus, blood, a lot of straining, and pain. You sound like you're pretty well controlled. I wouldn't think the worst. It is nice that you're getting informed, but I wouldn't worry about worst case scenarios. It's pretty rare that people go down that path. You will be okay, but I would recommend you find a treatment path that works for you, and stick to it. Also keep up monitoring, especially when you pass the 10 year with UC mark.


Seems like it is controlled if comparing to most people here, that's right. After 10 years? Why so? Risk of cancer?
Posted 3/16/2018 1:05 AM (GMT 0)
yup!
Posted 3/16/2018 2:37 AM (GMT 0)

eekseel said...
Yes. I am 100% med free but only with specific supplements.

And what exactly do you take?
Posted 3/16/2018 3:10 PM (GMT 0)
Yes, diet only for the majority of the time.
Posted 3/16/2018 5:40 PM (GMT 0)

brucen36 said...
Yes, diet only for the majority of the time.

What diet do you follow?
Posted 3/16/2018 5:45 PM (GMT 0)

marcell said...

brucen36 said...
Yes, diet only for the majority of the time.

What diet do you follow?

SCD, see my signature.
Posted 3/17/2018 6:56 AM (GMT 0)

brucen36 said...

marcell said...

brucen36 said...
Yes, diet only for the majority of the time.

What diet do you follow?

SCD, see my signature.

What's SCD?
Posted 3/17/2018 11:09 AM (GMT 0)

marcell said...

Michelejc said...
I would love to go off all my meds and see what happens but I'm too afraid I'll flare.

How are your flares?

I've been in remission for a few years now. The last flare I had took a little over a year to get under control. I've been good since then. My maintenance meds are 6MP and Lialda.
Posted 3/17/2018 1:37 PM (GMT 0)
The majority of us require medications to manage our UC and doing nothing isn't an option. It sounds like denial to me. You cannot simply do nothing and wish away your uc.

There's always exceptions to everything, there's something called "spontaneous remission" described in the literature for uc. Exceedingly rare but technically possible...

There's a few of manage their uc without meds but they're the minority.

I'd say get serious about treating your uc. It isn't going to disappear.
Posted 3/17/2018 6:41 PM (GMT 0)
Modern medicine does not work on my UC at all. The last thing I tried was Entyvio. It seemed to work and I gained remission but it turns out that was already happening because I later had a serious flare while on Entyvio. The only modern medicine that works for me is prednisone and it only sort of works until I can figure out what caused my flare and stop it.

I think every flare has a reason for happening and if you can be a detective to cut out that reason it will make the flare better. In my case it's almost always stress or diet but a couple of times it was from infection that they couldn't catch but I found out what it was on my own and nixed it.

If you haven't tried modern meds then they are worth a try and I would try them if you are in serious shape. If they don't work then be prepared to dive deep into the alternative medicine world where there are a lot of options but also not a lot of clarity on best methods etc otherwise yeah surgery is probably the only thing you will be left with.
Posted 3/17/2018 9:43 PM (GMT 0)

iPoop said...
The majority of us require medications to manage our UC and doing nothing isn't an option. It sounds like denial to me. You cannot simply do nothing and wish away your uc.

There's always exceptions to everything, there's something called "spontaneous remission" described in the literature for uc. Exceedingly rare but technically possible...

There's a few of manage their uc without meds but they're the minority.

I'd say get serious about treating your uc. It isn't going to disappear.

Researching is very important. You don't have to be a doctor to do that. Don't you remember the Lorenzo's oil case? His parents couldn't rest until they found something, despite their lack of a scientific background. He wasn't cured, but his disease stuck and he lived 22 years, instead of 2 (doctors words). So it's not denial. It's people wanting to find something, since science itself failed and all it can do is saying: "I'm sorry. We don't have a cure. We spend trillions of dollars but still we can't cure almost all diseases. We'll give you meds that will destroy your defenses and we hope you don't die of a med related cancer or resistent infection. Next!"

So if we don't do anything. If we don't try and test things and share our results, we'll never get anywhere. Specially considering that most diseases can only be treated, not cured. Remember that a cured patient is not giving any extra buck to any companies. If it doesn't seem logical enough to you, it does to me. So if you haven't tried many combined tactics or didn't have access to what someone outside the US would have, it's ok, I get it. But don't try to say that science is doing all it's able to. Because it's not. So I am interested in not harming my body with very destructive meds and get well. We don't know if it'll work. But we must try. Don't be so negative about it. Or you'll be the one in denial.
Posted 3/17/2018 9:54 PM (GMT 0)

Chiron said...
Modern medicine does not work on my UC at all. The last thing I tried was Entyvio. It seemed to work and I gained remission but it turns out that was already happening because I later had a serious flare while on Entyvio. The only modern medicine that works for me is prednisone and it only sort of works until I can figure out what caused my flare and stop it.

I think every flare has a reason for happening and if you can be a detective to cut out that reason it will make the flare better. In my case it's almost always stress or diet but a couple of times it was from infection that they couldn't catch but I found out what it was on my own and nixed it.

If you haven't tried modern meds then they are worth a try and I would try them if you are in serious shape. If they don't work then be prepared to dive deep into the alternative medicine world where there are a lot of options but also not a lot of clarity on best methods etc otherwise yeah surgery is probably the only thing you will be left with.

I see. And what have you done? Did you go for a colectomy or are you still on meds? Or trying something different? I'm pretty controlled without the meds. Bowel is clean and shining, but at the microscope... well... you know. It's there. So before I dive into meds I'll do my best to make it better by controlling stress, exercising mildly everyday, eating better, taking vitamins and probiotics. After 60 days, if there's no advance at all in my next colonoscopy, then I'll go for the meds, even though my situation is not really bad right now. I'll have to eat some junk for a few a day, as I'll go to France and I'll eat a few crepes. And some wine. But that'll be all. I hope I can get better. I wasn't really wanting to attack my defenses, as I found out I have HPV (no warts, no nothing. It's just there). And I don't want it to surface.
Posted 3/17/2018 11:43 PM (GMT 0)
If it doesn't work then don't be afraid of meds. They're not destructive meds.
Posted 3/18/2018 12:04 AM (GMT 0)

marcell said...

Chiron said...
Modern medicine does not work on my UC at all. The last thing I tried was Entyvio. It seemed to work and I gained remission but it turns out that was already happening because I later had a serious flare while on Entyvio. The only modern medicine that works for me is prednisone and it only sort of works until I can figure out what caused my flare and stop it.

I think every flare has a reason for happening and if you can be a detective to cut out that reason it will make the flare better. In my case it's almost always stress or diet but a couple of times it was from infection that they couldn't catch but I found out what it was on my own and nixed it.

If you haven't tried modern meds then they are worth a try and I would try them if you are in serious shape. If they don't work then be prepared to dive deep into the alternative medicine world where there are a lot of options but also not a lot of clarity on best methods etc otherwise yeah surgery is probably the only thing you will be left with.

I see. And what have you done? Did you go for a colectomy or are you still on meds? Or trying something different? I'm pretty controlled without the meds. Bowel is clean and shining, but at the microscope... well... you know. It's there. So before I dive into meds I'll do my best to make it better by controlling stress, exercising mildly everyday, eating better, taking vitamins and probiotics. After 60 days, if there's no advance at all in my next colonoscopy, then I'll go for the meds, even though my situation is not really bad right now. I'll have to eat some junk for a few a day, as I'll go to France and I'll eat a few crepes. And some wine. But that'll be all. I hope I can get better. I wasn't really wanting to attack my defenses, as I found out I have HPV (no warts, no nothing. It's just there). And I don't want it to surface.

If you have active disease and haven't tried meds like I said they are worth a try. The lifestyle stuff is complicated and not price and it can take forever to figure out. If you can find a med that is your golden ticket then seriously just take it. Honestly I love alternative medicine but if any of the modern meds worked for me I would just stick to them because they are more convenient.

What I find works for me now reliably is megaspore probiotic, probiotic enemas every night during the worst of it, and low dose prednisone during the worst. If I have an infection I use miracle mineral solution and grapefruit seed extract. Kills it dead along with the flare in a day or two.
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