21 years of crohn's

[e13 boy]

Hi all

My full crohn's history is as follows -

1988-1991 - 7 operations to remove 5 abcesse's & 2 fistulas.
1998 - right side hemi colectomy(lost right side of colon&27"small bowel)
2008 - resection of terminal ileum

Symptons which varied from mild-severe(never had 100% remission)
Gut pain,Dir'h(blood,mucus),anemia(tired,painfully white),erythema nodosum,
weight loss,dreadful beau's lines/pitting of my thumb nails.

Drugs i used Pentasa,steroids(Pred),Azathioprine,6mp(Both horrific side affects).

Following the dreadful side affects of aza/6mp i started looking for alternatives.My life changed forever last september when i read about mucopolysaccarides.I read a section of a research book about aloe.
aloereviews.com-research-aloebook.pdf
The section 'The Healing Properties of Of Aloe mucopolysaccarides'.
I read the article by ivan danhof and what really caught my eye was the small molecules - inflammation & the very large molecules - powerful immune modulating.I thought if this is true i might just stand a chance.

That led me to Serovera amp.
Here i found all the same information
I ordered 3 bottles to give it a go.
Whay happened next still brings tears to my eyes.
Within 7 days i started to benefit as my bowels started to slow down.
Over the next 3-6 months the gut pain went,i went from slimy,loose motions to a100% formed stool,i put on21lbs,i went from being painfully white to a healthy pink,my energy increased beyond beleif.The horrid rashes on my legs which i'd had 21 years faded & vanished.The beau's lines on my nails slowly healed and are now normal.
I watched serovera heal me.During my 21 years of crohn's i used to get colds ALL the time - since I've been on serovera i have not had one.

I've been on serovera 10 months now - i feel fantastic.
I no longer take pentasa/aza/6mp/steroids etc.I have walked away from every problem crohn's gave me - after 21 years of illness i am free of that horrid illness.
The reminders for me are the 9 scars they left me with and the fact that i have a short gut for which i have to take loperamide.

I can fully understand people being sceptical - i was - but i can assure you
i am a normal bloke who suffered for 21 years like you all understand better than any Dr.
Finding Serovera changed it all.
I would NEVER come on a crohn's website & write this if it was not true.

Jettalady - the weblink you have is correct

I wish you all well

e13 boy Serovera amp,loperamide

 

[Crohn's 35]

Welcome to the forum! Wow you have had alot of surgeries and yes, we know about the drugs and their side effects. Not everything works for everyone but trial and error is almost a game trying to figure it out. I have tried something a few years back called Molecure, didnt work and not surprising the website is gone. As you may know people are skeptical, and I am glad it is working for you. Our main goal is to be in remission, I only had remission for 7 years after my first surgery, after my second it has been nightmarish on and off. I will research your website. Thanks for your story and our thoughts. Hope to see you more around here, lots of people here to welcome you!

 

[Astra]

Hi e13
and welcome

Wow, that's some story! i'm really chuffed for you that this is working after everything you've been thro!
I've had a look at the serovera, you can't go wrong with aloe vera! it has amazing healing properties.
good luck and we'll see you around the forum, keep us updated, and keep well
lotsa luv
Joan xxx

 

[Regular Joe]

You know I find it pretty amazing that suddenly "Aloe Vera" has made it's way to becoming the "cure" for Crohn's disease, Ulcerative Colitis, Diverticulosis, Irritable Bowel SYndrome...just about anything relating to the digestive system including GERD seem to get miraculously "healed".

Unfortunately, after browsing through web site upon web site advocating this so-called "miracle cure", there happens to be no independent research handy or available.

Can you tell me e13 boy, where might one find truth about the product you, and others seem to be determined to make into a commercial enterprise.

If this "cure" is so well-known and well researched, then perhaps the CCFA should be made aware of it so that a bona-fide not-for-profit organization that advocates for Crohn's and UC patients can celebrate this miraculous finding. I'm certain that CCFA could advocate this miracle-medicine to millions of Crohn's and UC patients across the US and internationally.

"Skeptical" is not the word that describes the way I feel about spamming a public service forum such as ours. I have no polite words to post about the tactics and strategies used to marketing misleading advertisements that indicate Aloe vera as curing every digestive disorder on the planet.

I don't know if this sounds too drastic, but I think filtering out posts to this forum containing the words "aloe vera" and "cure" might stop this nonsense.

 

[Guest]

aloe vera has a poor reputation on this forum due to the amount of spammers we've had in the past joining specifically for the reason of promoting their 'miracle' aloe product...

unfortunately, all that spamming can distract readers from the genuine healing properties of this plant extract, and i think we need to bear this in mind.

aloe can be beneficial for many things, and it's quite possible that it has helped e13boy's Crohn's symptoms.

my view on this particular thread is that the member seems to be a genuine Crohn's sufferer, and is sharing his experiences with us - which is fine - as long as our members and readers understand that this info is just anecdotal, and not medically verified.

so - welcome e13boy - i hope my faith in you and your reason for being here is correct, and that you don't start including advertising links to the product once you are able to post links.

 

[Crohn's 35]

I agree with Dingbat, also the mind plays the most important role in our bodies and if you think eating grass will help your crohns and you are convinced of it, who are we to say it wont work? I have tried different things because I'd sooner be off meds, I have been on so many medications and surgeries and it is not getting any better.

The word "cure" is misrepresented maybe for lack of a better word. Some people say remission it all just means something is working for them. wish I could be 10 months symptom free.

 

[Astra]

I agree with Ding, Aloe Vera has been around forever and is fantastic in healing wounds, so I believe we mustn't dis this poor plant in any way! And possibly, Aloe Vera has made some difference regarding inflammation in some IBD sufferers, not 'cured' as such, but healed in some way.
I'm hoping this isn't some market ploy too, and hoping that we wish each other well, in whatever works for them!
Peace xx

 

[Regular Joe]

OK - I'm sorry to be dissing that poor plant. Also, sorry if my post offends anyone.

I get a teensy bit "riled" when I sense "tall tales" and "miracle cures". I have friends and loved ones with this disease. It's no fun losing your colon and rectum, then wearing a stoma. I understand how much discomfort a woman might feel "getting naked under the sheets" with a J-pouch. I know what it's like to look into the commode to see pooling blood and driving your sweetheart to the ER at 60mph across town. I know ER nurses and heard stories until I cry.

That wasn't online BS. I know this disease up close and personal. For some salesman to be joining and going on about the miracles of aloe vera - c'mon now! Talk to someone else who doesn't know Crohn's disease and colon cancer up close and personal.

There are men and women who join us that are scared to death because they have no control over what their bodies are doing, not even to think about why.

I'm not saying aloe vera isn't helpful. But I'd hope that people with a sales agenda would have enough respect for those of us who suffer in real life to stop trying to tell us we shouldn't trust the medical profession. That certain Crohn's drug side effects are worse than the condition they're treating. I'd like to see anyone with a so-called "miraculous remission" to show some respect to those who may never have the same thing happen to them.

It's like saying to a newly diagnosed man or woman, you don't know what you're doing. You're an ass if you trust doctors and drugs that have horrible side effects. And if you use a certain product containing aloe vera "like I did", it will even "undo" those horrible effects of Crohn's disease that happened "to me" over 10-25 years under licensed theraputic care. That's just poppycock for one, and it's plain disrespectful for another.

Tell that to my friend who's had Crohn's for 25 years and nearly lost her home because of a continuing flareup and stricture and see how she responds. I adopted her cats because she is too sick, and now displaced, to care for them. A half-hour ago, I cleaned the poop from their litterbox. That is the REALITY of Crohn's disease for me. I'm reminded of it every day.

Credibility and respect. Anyone who joins this forum who is actually in need of support deserves that don't they? No one needs to be told after 2 months up to ten years that they're foolish because they didn't seek the simple "solution" of aloe vera. Even the darn plant deserves more respect than that!

 

[Guest]

Joe i totally get what you're saying, and where your feelings are coming from - and i actually agree - any obvious sales people coming here, promoting some wonder cure, whether it be aloe or anything else, not only get their advertising links taken down, but they also get banned for spamming the forum with financial gain posts..

however, i think sometimes we have to keep an open mind... if a member appears to be a genuine IBD sufferer, believe he/she has found something which helps and wants to share it, we have to view things differently.

i've actually been on the receiving end of a total dismissive attitude towards anything but traditional medicine - by a hospital consultant!! he almost made me cry - said that the medication i wanted to try was nothing more than a wacky claim off the internet. he was talking about LDN!

so i guess what i'm saying is, sometimes we all need to be a little more relaxed on issues like this, just in case there is more to it than exaggerated claims - except in the cases of obvious spammers of course, in which case nothing gives me more pleasure than zapping them. lol

 

[e13 boy]

Hi all

I have clearly made some of you on here quite angry by posting in my story.
(esp Regular joe) For that i apologise.

The anger you show in your posts i fully understand.I put the post in my story following a reply to a previous post where i put what i took.

I did not use the word 'cure'
I am not a salesman.
Regular joe asks me for research/evidence etc - i don't have that - all i have said is where i read about something i thought might help me.I found somewhere i could buy it and the benefit i have gained from it.

If you wish i will never put another post on this forum.

I wish you all well

e13 boy

 

[Guest]

hey e13 boy - please don't hold back from posting!

our forum welcomes anyone who's life has been affected by IBD, whether it be themselves or someone they care about - as you have said you're a Crohn's sufferer, you are just as welcome as anyone else.

i guess sometimes it is inevitable that people will feel aggrieved if a new member joins and appears to be pushing a particular product, especially if the claims are that the product has alleviated their Crohn's symptoms. we have been plagued by spammers constantly for most of this forum's lifetime, & when you've seen aloe spam after aloe spam, you get to the point where you think "here we go again".... but in your case i believe you are a genuine sufferer and have found something which you trust in, and which you feel has helped you - and that's fine.

i often post the names of things which i think have helped myself or my family members, purely because i want to help others - or at least give them the information to try it if they want to.

i am really sorry that your initial experience on our forum has gone the way it has, but i hope you understand everyone's point of view here, and i hope you will remain an active member.

 

[Crohn's 35]

Come back! I was so interested in your story. I have questions and want you to blog here if you can.

Ding is right, we have alot of spammers and people who "push" things. Does anyone remembe the wonderful Acai berry??? Well, it was proven to not be as affective as first thought. Maybe it helped some, but not for a few I know who tried. Most people hate to spend alot of hard earned money and find it doesn't work and that can frustrate people. I know how Joe feels, I have seen so many posts of "wonders" in my past 2 years. Hang in there and stay here!!!

 

[Regular Joe]

e13 boy,

I apologize. I allowed my skeptisism from past online experiences create strife. I could have been more polite in expressing my apprehension. I've been part to some harrowing experiences with this disease, and it has profoundly impacted my life in more ways than I could ever list. It's also a disadvantage communicating on a forum because there are countless factors in our lives and experiences that we assume everyone knows about and understands, but the reality is countless things that happened to you and me are invisible online.

I'm not angry with you. Like Pen, I'm also interested in your story.

You are welcome here. I'm sorry that my words made you feel unwelcome.

Thanks for joining us.
Joseph

 

[Sue-2009]

Aloe

Tried it...didn't work for me...Glad it worked for someone...Wish there was a sure fire bullet. Nothing seems to shut mine down. Had my collectomy 5 yrs ago...felt good for five years...Am working with 6mp, cortisone enemas and pentasa...so for a few months of being off of steroids...I feel it coming back...So sad....S

 

[e13 boy]

Hi all

No hard feelings.Thanks for your replies.

Reg joe - i've read a few of your other posts on here - and i thought i'd had a rough ride! I would never disrespect anyone with CD/UC.
During some of my worst times i felt so isolated & despondent.Whatever Dr's/family/friends said i felt nobody understood.I thought i was in a world of my own.I kept an awful lot of my misery to myself.
The lady friend you talk about who nearly lost her home - i can relate to every word you say about your friend.I really hope she is doing well.

My only wish is good health for you all

e13 boy

 

[lifesover]

You Know, I would be happy to try anything, being desperate, and this is what people who are trying to make a fast buck play on.

It would be nice to see what others think about this product or if anybody else has used it?

If anyone has tried it or does try it, I'm sure they would post on here and let us all know, and their comments could make or break this product

 

[e13 boy]

On the alternative treatments section of this forum Jeeknee posted about her success with AMP Floracel which is a similar product.
I've got no sales agenda - it was just a simple suggestion.I 100% understand you being sceptical.
As any long term CD/UC sufferer will know what may help one person may not help another person.
I thank god everyday that it helped me.
I apologise if you were offended by my suggestion of something that helped me.

e13 boy Serovera AMP Loperamide(due to short bowel)

21 yrs of CD 9 operations
Failed meds - Steroids,Aza,6mp,Pentasa