InSoFla

Cult????? NCOT- I am so tired of you bashing anyone and everyone who has a different opinion than your own. I read your posts bashing InSoFla and others who dont follow your choice of treatment and I have watched you deliberately trying stir the pot against them all. Many of us here rely on alternative methods because conventional has either failed or created additional problems above and beyond this disease. Just because you have decided to have surgery and a bag doesn't mean everyone should follow your lead. If that is their decision, that is fine but personally, I will continue to try alternative treatments and wish you would stop interfering in my quest by blocking access to those that are in the same boat as me.

 

Yes, that. Cult.

I haven't actually decided to have a bag by a long shot. Largely because I have Crohn's and not UC I should add. At this stage of my life, I'd actually be grateful to have a surgical cure available to me. I certainly wouldn't be wasting my time on insanely restrictive diets; oh wait, I'm not actually doing that. Oops. Never mind; you get what I mean, I'm sure.

At any rate, I'd like to see all the posts where I'm telling people to get a bag, especially on this board. Because, as you know, I come over to the UC board every single day to tell all you folks with UC what you should be doing. Just like InSoFla didn't do on the Crohn's board. </deadpan>

Why was she banned to begin with? Can anyone answer me that?

NCOT- You said in YOUR own post (on the crohns forum) that you had decided to get a bag. Go review your posts. Now you are bashing "insanely restrictive diets"? SCD has help countless people with this disease. Just because you do not have the desire to try them doesn't mean they are not helpful. You are bitter and have no place deciding what is in our best interest.

Personally, I think you are being deliberately provocative in order to get this post locked. I too hope that this administration can see who the actual problem is because it is certainly not InSoFla!

NCOT- If anyone is "brainwashing bewildered newbies" it would be you. You are taking away the chance that someone can learn about a natural product that may help their disease better than conventional medicine. I would be one of those losing out since I have failed most conventioal medications and am doing well on natural products in combination with a mild pharmaceutical. What difference is it to you if someone talks about natural products? Is it you are simply wanting more people to be in your shoes facing a bag? That would be extremely selfish!

I believe your attacks on InSoFla were a blatant attempt to prevent others from learning something potentially useful in their fight against this DD. This forum is all about learning from one another. Why is it you think it is OK to talk liquid diets and not SCD?

I really, really, really need to go to bed, but I so want to answer these posts before the thread is locked... >_>

Let me understand this, you're saying the best treatment for newbies of this forum is medicine or pharmaceutical drugs?.

You sound surprisingly surprised by this. I know, I know; recommending medicine for diseases is surely the most radical suggestion a person can come up with, I should've realised that. Why, next I'll be recommending antibiotics for bacterial infections!


NCOT- You said in YOUR own post (on the crohns forum) that you had decided to get a bag.

Perhaps I said it once in a mood of absolute fedupness, but changing my mind about that on a daily (or even hourly) basis is an indecisive Crohnie's perogative. >_>

In reality, I'm not making any decisions about anything until I've had my MRI scan and know the results, which won't be until June at least. If my colon has healed sufficiently, it might be possible to remove the stricture without removing the whole colon along with it.

but the tone in the thread you created was singularly belittling and has effectively contributed to a very informative and helpful member being banned. You stated you can't be bothered with any diets despite having tried some form of liquid diet yourself and would rather have surgery and a pouch than try any diet. Great that's your prerogative. What confuses me is why you're so anti one particular one person who might promote a view point and ideas different to your own.

a) I wasn't the only person unhappy with InSoFla
b) I wasn't the one who reported her (all I know is somebody did; it wasn't me)
c) admin/mods can read the posts as well as I can and make up their own minds
d) No offense, love, but I doubt supremely much the sunflower seeds and spinach diet will work where Remicade and liquid diets haven't. The point about liquid/elemental diets is they have been clinically proven to get Crohn's into remisson; the drinks don't even need to be elemental. SCD is unproven; I've no doubt it 'works' for some, just as going on a liquid diet works for some. But if the only way you can stay in remission is by eliminating 95% of everything you eat, then in my opinion it's not much of a remission. Anybody is free to differ with me on that point. I just know personally I like my food and would rather have a little bit of what I enjoy than a lot of what I don't.

NCOT- If anyone is "brainwashing bewildered newbies" it would be you. You are taking away the chance that someone can learn about a natural product that may help their disease better than conventional medicine. I would be one of those losing out since I have failed most conventioal medications and am doing well on natural products in combination with a mild pharmaceutical. What difference is it to you if someone talks about natural products? Is it you are simply wanting more people to be in your shoes facing a bag? That would be extremely selfish!

Piffle and nonsense, that entire paragraph. The info about LDN; hookworms; different diets - you name it, it's all there in abundance. In past threads, current threads, posts, and sigs - you would have to be blind as a bat to not notice any of it. On top of that, I have even myself (somewhat reluctantly I must admit) suggested the SCD diet as a possibililty to people many times. Diet is always cropping up; I like to be fair, so I mention SCD because it exists and because it does help some people. It's up to the person I'm replying to if they want to try it.

InSoFla did more than just talk about natural products. She spammed them. And not just any old natural products, but only the ones she used. Her protocol was so specific as to be almost useless to anybody who wasn't a fully paid-up member of the 'alternative' cult. She did not need to spam it in 75% of all threads on the UC/Crohn's boards. She didn't even try to tailor her advice to the person she was replying to; it was her ridiculous protocol or nothing. When I give advice, I try to give different suggestions according to the person I'm replying to and what their problems are. Not our InSoFla, oh no.

This thread is probably locked by now, I've spent so long typing this... >_<

This is a forum to discuss all types of treatments. People are asking for advice about treatments; if LDN is recommended based on an experience it should be discussed.

NCOT- maybe if you tried some if the natural products you may save yourself a surgery. How can you be so close minded and disgruntled toward those of us that have good luck with alternative protocols. InSoFla did not spam anyone, she was simply being very helpful by passsing on what worked for her. BTW, how do you know alternative diets won't work? Those of us trying these products are paving the for the future generations who do no want the risks of big pharm. I feel sorry for you because you are so close minded. Enjoy your bag as I continue to try my "cult" drugs in hopes of a cure.

On topic:

Admins, please see sense and reinstate InSoFla.

the end

@Jimbo - Decent meat and fish costs a small fortune. Veggies are very limited for me because of a stricture. But even if they weren't, meat, fish, eggs and veggies are not all I want to eat. There's something missing there; namely potatoes, bread, rice, chocolate, toast, cereal, milk, etc. etc. It's not just a matter of cutting out ice cream; it's cutting out almost everything that 'normal' people eat. No more toast or, worse, milk in tea. No more going out for an Indian or Chinese or restaurant meal of any kind - although to be honest, I can't really manage restaurant food anymore.

If Remicade doesn't work (and it won't - it's been too long), then that leaves surgery. I'd prefer not to have a bag of course - but if it ends that way, I've learnt enough about it to be satisfied that most people cope with a bag quite well. It's not the end of things. And I'd probably feel much better than I currently do with my colon gone.

@pmedic - Nah, I can't see anything truly working. Only steroids have done anything at all and only then at the highest doses. I have very stubborn, refractory disease. Plus to some extent my colon is permanently damaged - 'leadpipe colon', I think they call it. The inside become scarred over and smooth over time. If my Crohn's went entirely into remission tomorrow, I'd still probably have symptoms because of that. Believe it or not, deciding on a colectomy (and thus a bag) is not an easy one for me; it's actually a torturous decision to have to make. I *probably* won't do it just yet; it's something I'll probably end up sitting on for another year or two. I'll either get better or worse, and I know which way it is more likely to go.

I have considered alternative therapies many many times and still consider them. The trouble is, I lack both patience and motivation, both of which you need bundles of if you are to do it seriously. When I read things like you need to do the SCD for up to a year to see results, I know I could never do it. And then how do I choose between SCD, Paleo, GAPS, and 10 other similar-ish diets, all with a differing rationale behind them. I only really know about the SCD, but it insists that you cannot deviate from it by an iota if it is to work. But the other diets do deviate from it; perhaps by not very much but enough so that if the SCD's rationale was correct, then the other diets should fail.

I don't deny that such diets work, at least for some people. But I suspect they work for probably the same reason the liquid diet works: by eliminating so many foods that the problem foods get chucked out. IBDers tend to have more food intolerances than the general population, so it makes sense that diets which remove problems foods will help them. As far as I know, though, I'm not intolerant to anything - or, rather, no food makes my symptoms miles worse.

The debunking of the risks of 'big pharm' meds are for another time... <_<

PS: There is no cure for UC except a surgical one.

NOTC, Yes I do miss a lot of foods, including those ones you mention and it's tough to follow a strict diet, luckily i have the motivation and support to be able to follow it and i can afford to buy quality ingredients. Ii'm grateful for that. I know not everyone is in that situation.

I also miss alcohol, a nice pint of guinness or a glass of red. I miss applecrumble and ice cream. I miss a good curry too. I will be able to enjoy those again sometime...months from now... I hope.

I wish you all the best in your battle. It's hard to stay positive all the time and I know I can be like a yoyo of emotions purely based on the contest of the toilet after I've been. Crohns and colitis are horrid diseases and I wish no animosity to anyone struggling with them. Good luck to you. I hope you find relief and are able to enjoy your life whichever path you choose. My only motivation here is to have InSoFla reinstated and I bear you no animosity on the contrary I wish you all the best in your journey with Crohns. Peace.

Hi,
I am "new" to this forum. I have been reading here and have decided to sign in. I have thoroughly enjoyed InSoFla's posts. When reading her posts, which contain lots of info for people to consider for themselves, but I also feel she shares compassionate energy from an amazingly huge heart!

The scientifically proven approaches are important in treating any condition, of course. Yet, these do not work for everyone and/or not everyone is tolerant of these options.

Alternative options are also important, on many different levels, for many different reasons. Just one very important reason is this gives some additional options for people to try when they are feeling as though they have no more options to people. People can feel overwhelmed, tired of trying, disillusioned and more when they fail with conventional treatments. This reason, alone, makes offering these alternative options vitally important.

When I read these forums, my heart goes out to each person suffering. These conditions can take such a toll on each life and on the lives around each of us.

Forums can stir drama. Sometimes, this drama is made up of, at least in part, our own emotions (including anger and frustration) about our own experiences with stubborn and debilitating medical conditions. It's something we all want to watch out for and want to minimize. I am sure we all agree on this. : )

In healing, the science is important, of course.
In healing, heart-to-heart interactions are also important. (Dropping or minimizing egoic interactions/responses.)
In healing, goodwill toward self and others is important.
In healing, having as many options (choices) as possible along with a sense of freedom, self-determination, empowerment... these are all so very important to healing.
Compassion for self and for others is also very important in healing.
Support for one another, despite our differing opinions is also vital.

I am "new," yet, I truly want to comment here. (Just politely ignore me if you don't agree with my viewpoint, please.)

InSoFla's posts are full of her heartfelt desires to assist others with their own healing. Her intentions/motivations are pure. She works hard to give info to people requesting info. She does this with sincere concern and with heart!

Her sincerity, her genuine concern, her pure motivations... this is all nurturing and potentially very healing to so many people here. We all need the "hard science" and more. InSoFla offers a prime example of some of the other aspects/qualities so often helpful to healing on many different levels. (Other people here also have these qualities, I do not mean to exclude any one of you sharing so very much with others here.)

We each/all have a role in any community. We each/all are needed to complete the "whole" opportunity to assist one another in our own healing.
All viewpoints are important, of course.

I hope to see InSoFla return to this forum. Her role here is also very important. I hope there is another way, other than banning InSoFla, to mediate any differences. Let's open our hearts, examine our priorities and get on with healing this community issue. Community healing involved finding a way to resolve the issues, whatever they may be. Banning an integral member, one with such a compassionate spirit, hurts both the community and also hurts InSoFla. I believe we can find a way to heal this wound... the loss of InSoFla... and with all wounds, the sooner the intervention, the better the outcome. Hearts wide open, egos in check... we can do this!

I remain hopeful for the healing of ALL.
In Gratitude ~