Missing Forum members ...

I would love to get updates from some of the people from the past. Usually when people are gone, I figure they are out living life, doing well. I haven't seen Pluot or elephantpipe in a while either. I talk to embersglow here and there and she's been doing well with her ileo... most people who have surgery take off and often do not report back. Guess they move on.

I was actually a huge proponent of diet and alternatives when I was asked to be a moderator... although some conspiracy theroists choose to believe we try to sway people away from alternatives, I haven't noticed that at all, in fact, I think we are all open-minded to whatever works for an individual. I don't think any moderator here is against anything in particular - though it would be in their right to have their own opinions, we speak from our experiences. My experience has changed. When I became a moderator I had mild/moderate UC. Later it progressed and responded to nothing. People are free to state diet as an option, or as THE option, but it didn't work for me. If it had, I would have continued eating a restricted diet and i'd still have a colon.

Generally one doesn't need more leeway from a moderator unless they're deliberately stretching the rules, and hoping not to get noticed for it.

I'd prefer it if we weren't labeling or dividing groups of users as pro-med or no-med. What we're all for is syggesting a treatment that might help someone's uc symptoms. Everyone is different on what works for them as an individual, so no"us vs them" mentality is really even needed. Kinda more that we all just throw out a variety of ideas out there, based on our individual experiences, to give someone things to try and they'll see what sticks/works for them.

But I get it, mods are considered to be just "bad cops" and nobody likes us lol.

Not really helpful soy as yours is an incomplete/inaccurate story. All of us have tried alternatives and diets.

This thread is getting off topic. The mods are here to help, and I think this is getting overly critical.

iPoop said...
Not really helpful soy as yours is an incomplete/inaccurate story. All of us have tried alternatives and diets.

This thread is getting off topic. The mods are here to help, and I think this is getting overly critical.

ummm, that WAS the point of my "story" -

I think sherbear & michelejc both use probiotics and supplements... and are cautious with their diets. I don't take anything so it's hard for me to weigh in. The only thing I can say is "It didn't work for me" but I say that about everything except surgery

I think maybe the situation is that the most active moderators are me and iPoop and we both didn't have luck with alternatives/diet so we don't frequently respond to those topics, which may make it look like we are trying to brush them off, but in reality, we just don't have much to say - or much positive, so we say nothing to allow people with positive experiences provide their feedback. I hate to inundate people with negatives.

I wrote the resources post about "mainstream and alternative treatments" and I tried to include anything and everything I've seen people using.. I wasn't trying to be biased toward mainstream - I am sorry if it comes off that way. I guess the truth is, you can't make everyone happy. If it was leaning the other way, people would have a problem with that too. It's always something.

I haven't been here long but FWIW, I think the mods are good about answering a variety of threads and give reasonable, supportive responses, even if it's not their thing. Lol, not like they are getting paid, so good of them to go through the trouble.

Everyone is different and has different experiences. I try not to compare my experience with UC to others, as in wondering if I'm doing enough or if I my medical care is adequate. I am amazed at the frequency of testing and procedures everyone else gets. I was diagnosed well over a year ago and have had only one colonoscopy, the one that got me diagnosed with pancolitus. I inquired at my last GI appt about when to expect another colonoscopy and my doc said down the line but when possible, they like to use less invasive testing, like CRP blood and stool tests. My guess is that's HMO talk for taking care of my UC, cheap AF. 😒 Does that concern me? A little. Who knows, I could have a Godzilla leveling Tokyo situation going on in my colon for all I know. I suppose if I really go downhill or make a fuss, the doc would take a look to see what's going on.

So yeah, everybody is different, has different hang ups about meds, alternative treatments, surgery phobia and whatnot. At the end of the day, we all just do the best we can with the crappy cards we were dealt with this blasted disease.

As for regulars falling off the radar, that tends to happen in forums. These type of message boards are old school and people tend to gravitate towards FB, Instagram and snapchat...although what in gawds name would you Instagram or snapchat for bowel disease? @_@

Aim high girl, after 12 years it should be a fully equipped RV with a tricked out bathroom...with the good toilet paper, none of that generic stuff. 😄

Red_34 said...
Verucasalt - thank you. No we don't get paid to volunteer but after being here for 12 years I'm still hoping for keys to the company car! Lol

What car? I want an airplane....LOL

All we usually get is just flack/complaints from users for either locking/editing/deleting a post or the opposite because we haven't yet done so. Seldom get a thanks…

I post here once in a while but I used to spend most of my forum minutes on one of the more popular MMJ forums. One of the moderators there had a tremendous amount of power and he didn’t have a lot of sympathy for users who used MMJ for medical conditions.

He didn’t put them down directly; he would just allow posts that disparaged MMJ to remain untouched. Those who disagreed had their posts deleted for bickering and he threatened to ban anyone who complained too loudly about it.

So an unscrupulous moderator can pretty much determine the direction a forum takes especially if the administrator has a “hands-off” attitude.

Veru, I like your thinking lol

the reasons for folks not posting on the forum anymore, are as numerous as the causes and treatments of UC -

I am away for more than a year, occasionally checking the forum. I am doing good. My resistant starch experiment is working beautifully so continuing that.
Feels depressed at a times, but that is going on since UC was diagnosed.

I haven't posted in a long time because I have been doing well, had nothing more to offer, and the moderators were too focused on taking poison as the answer to Ulcerative Colitis (yes, Remicade, 6MP, ... are poisons).

I recommend the SCD or Low FODMap Diet. I adhere to the Low FODMap Diet, but then I also have IBS in addition to UC. The SCD diet may be more suitable for those who have IBD and not IBS. Anyway, you should give both of them a try.

Also, I recommend:

* Homemade yogurts (to replenish the colon with probiotics, I use A2 milk, which is easier to digest than regular milk)
* Fermented foods, such as kimchi and sauerkraut (to replenish the colon with probiotics)
* Homemade bone broth soups with vegetables (to build tissue and get vitamins & minerals)
* Oily fish (for omega-3)
* Chestnuts & macadamia nuts (for protein, other nuts are high in FODMaps and/or omega-6)
* Liverwurst (for iron)
* Juiced vegetables (to get a boost of vitamins and minerals, do not juice fruits)
* Vegetable (smoothie) soups (to get a boost of vitamins and minerals and heal the colon)
* Low fructose fruits (especially bananas, berries, coconuts, and citrus)
* Herbal teas (for a variety of things)
...

I do not consume any cane sugar, corn syrup, or similar sugars. Basically, I get my sugar from rice, fruits, and vegetables (such as carrots). I stay away from gluten, lactose, high fructose, legumes, caffeine, additives, artificial ingredients, omega-6 oils, GMOs,... I make everything from scratch, including ketchup.

I believe my Ulcerative Colitis was caused by antibiotics and poor diet. The way I'm staying in remission is by replenishing the good bacteria in my colon, avoiding anything that causes me diarrhea or gas, building up my vitamins and minerals. It's a slow process, it takes commitment, and it means using food/beverages as medicine instead of as enjoyment.

Sure, meds can get you into remission a whole lot faster than healthy living, and meds may be necessary in the short-run to save your colon or even your life if you've lost too much water, blood, and/or electrolytes. However, many of the meds for Ulcerative Colitis are poison and destructive. What would you rather do: adhere to a very strict diet, practice stress-reduction techniques, and listen to your body, or take the poison?

Here is a great recipe for a vegetable (smoothie) soup:

1 tablespoon olive oil
1 (3-inch) piece of ginger, peeled and minced.
1/2 teaspoon ground coriander
1/2 teaspoon ground turmeric
3 tablespoons water
2 zucchinis, thinly sliced
2 cups water
1 1/2 heads of broccoli, broken into florets
1 bunch of kale, chopped
1 large handful of arugula
1 small handful of parsley, cut into pieces
2 cups aged, hard cheese, cut into small chunks (aged, hard cheeses are lactose free)
juice of 1 lime
ground black pepper, to taste
1/2 teaspoon salt

Heat olive oil in a large pot and saute ginger until tender.
Stir in ground coriander and turmeric and toast for 30 seconds.
Add 3 tablespoons of water and sliced zucchini and cook 1 minute, while stirring occasionally.
Season with salt and add 2 cups of water.
Mix in broccoli and kale.
Cook for 7 minutes, while stirring occasionally.
Remove from heat.
Stir in arugula, parsley, and lime juice.
Transfer to blender and blend until smooth (may have to do this in batches).
Remove smoothie/soup into large bowl.
Mix in ground pepper.
Mix in cheese.
Transfer to blender and blend until smooth (again, may have to do this in batches).

You'll have enough veggie (smoothie) soup for about three days.