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Stories like these make me angry!!!

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Ulcerative Colitis
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Posted 8/26/2015 8:52 PM (GMT 0)
headline: Man poos in public sink while wife is in labour: 'I felt like dying'
This is a real problem for us with UC. Our disease is not "dignified" so the media likes to focus on the embarrassing, gross details. Do cancer patients who have bouts of vomiting and diarrhea get this treatment? -Hell no!
I for one an sick and tired of people treating me like a leper when they find out I have UC, have some empathy!

www.dailystar.co.uk/real-life/461140/Crohn-s-Disease-diarrhea-man-poo-sink-wife-labour
Posted 8/26/2015 9:15 PM (GMT 0)
You go girl! (Or boy, as the case may be😄).

Seriously though, you're spot on. Any diseases focussed below the waist, especially those from the back end, tend to make people uncomfortable, which is why some attempt to place a humorous spin the topic.

I doubt that will change any time soon.

💩
Posted 8/26/2015 9:37 PM (GMT 0)
Wow he was put on pred for 3-4 years?? WTH?

I hate when journalists string together different parts of a conversation for the headline.
Posted 8/26/2015 10:09 PM (GMT 0)
The headline doesn't bother me so much, what makes me mad is the lines down below that imply he got better by changing his diet. I am so sick of hearing the pseudo-science rubbish that giving up gluten and dairy cures UC.
Posted 8/26/2015 10:16 PM (GMT 0)
he said his wife was using the toilet so what else was he supposed to do?? id personally use the trash can since i'm short but hey, whatever works.

but yeah, anything on that site is dumb. no research is in any of these articles.
Posted 8/26/2015 11:28 PM (GMT 0)
They're soliciting money for a website to help UC/CDers.

It's they're story for impact.

q
Posted 8/26/2015 11:53 PM (GMT 0)
I am more annoyed by the dietary salvation too. It makes it sound like you just stop eating gluten and dairy (already do that) and voila....all healed. I wish.
Posted 8/27/2015 12:51 AM (GMT 0)
No where in the article does he claim to be cured. He made dietary changes (as we all have) to see what helps and what hurts. He said it's "helped." Not eating lettuce but eating spinach has helped me. His discovery has helped him.

The title of the article is sensational and makes it sound humiliating.

He is a very brave man. So many times I've wanted to tell people exactly how physically, mentally, and emotional horrific this disease is. I'm too humiliated to say that I pooped in a container in my car once and the postman walked by and saw me.....coudos to him.
Posted 8/27/2015 1:50 AM (GMT 0)
"He researched his condition online and decided to alter his diet. He tried cutting out dairy products, gluten, processed food and alcohol.

He ate meat and fish, fruit and vegetables, and rice, which he found were easy to digest and supported his immune system, which helped his ulcerative colitis."

"I learnt some food was rough, like sandpaper, and went straight through me so I changed my diet and suddenly felt healthier than I had in years," he said.


- not seeing the issue with those statements, all Im reading from this is what a guy tried, and what he thinks helped him, nothing more.

Note that the first paragraph just lists what he tried.
Only the second paragraph attributes what he thinks helped him.

And the last paragraph is sound advice, avoiding rough foods during a flare..
Posted 8/27/2015 10:46 AM (GMT 0)
Worst is the !diot posting the comment at the bottom of that story. May he get the taste of this disease.
Posted 8/27/2015 11:08 AM (GMT 0)

deltaforce said...
Worst is the !diot posting the comment at the bottom of that story. May he get the taste of this disease.

I noticed that too.

Moron. (Him, not you.)
Posted 8/27/2015 12:57 PM (GMT 0)
This is clearly a tabloid, so the stories are selected and written for shock value. Yes, it's mortifying to read things like this, but that is John Q. Public's view of our condition. They don't get it, and won't unless they develop IBD themselves. Some things just have to be experienced to be understood. So to most people, it's just something to whisper and giggle about.

I was also appalled to see the mention of 3-4 years of Prednisone. The man clearly needs to find a GI who knows how to treat UC and the compassion to do so.

Buck up, we know we're not just disgusting jokes.
Posted 8/27/2015 1:13 PM (GMT 0)
This story reminds me of the birth of my first son. My wife had a c-section and I had to wait in a room for about 30-45 minutes while they prepped her. You have to wear an outfit that resembles a lightweight hazmat suit to enter the operating room. I must have used the bathroom 20 times during that wait...unzip the hazmat suit and take it off...then put it on after I was done using the bathroom. It was ridiculous, had to do that 20 times.
Posted 8/27/2015 7:22 PM (GMT 0)
This is WHY the story was written....I don't get the big deal about how it's written, since this is the goal...

www.ibdrelief.com/

He's flogging that story himself...it has nothing to do with what paper carries it.



www.crowdfunder.co.uk/user/seb.3/

q
Posted 8/27/2015 8:18 PM (GMT 0)
UC really isn't as glamorous as everyone said it would be.
Posted 8/27/2015 8:38 PM (GMT 0)

quincy said...
This is WHY the story was written....I don't get the big deal about how it's written, since this is the goal...

www.ibdrelief.com/

He's flogging that story himself...it has nothing to do with what paper carries it.



www.crowdfunder.co.uk/user/seb.3/

q

I don't understand why they need all that money to create what they are trying to create. I could make that for nothing.


and Gonk, no, it certainly isn't!!! tongue
Posted 8/27/2015 9:23 PM (GMT 0)
Looks like I've created a bit of a stir!!

@quincy is right, part of the reason for putting the story out was to promote what we're doing with IBDrelief.

It was also to hopefully give people with IBD the courage to be open about this horrible disease. It's amazing how much awareness it's actually created. It's been published in the Mirror, Daily Mail, Express, Sun, Star and Huffington Post. It's even more interesting seeing each of their take on the same story!

As for your comments re diet. Unfortunately they weren't going to publish my whole disease management story!

For me I spent 4 years on and off pred, aza, 6MP and pentasa. Nothing was really working except pred which as we all know isn't great to be on for too long. I was potentially looking at surgery.

I had notice things made me better and worse, e.g. stress, certain foods, exercise. I started to do a lot more research into what might work.

3 years on, I'm pretty much med free (low dose of pentasa) and am symptom free. What do I do to do that?

  • Manage my stress
  • Manage my diet
  • Do the right exercise (HIT, Yoga, pilates)
  • Take a proper probiotic (Sympove)
  • Sleep well
  • Relax


It's amazing what your body can do when you actually give it a chance!

As for my diet I avoid -

  • Gluten
  • Dairy
  • Nightshades
  • Sugar
  • Caffeine
  • Alcohol
  • Insoluble fibre
  • Processes foods
  • Red meat (in large quantities
  • Tap water



@notsosicklygirl if you can make all we're trying to do for nothing, please come and join my team!!
Posted 8/27/2015 10:00 PM (GMT 0)
haha, very nice! Thanks for joining and saying hello :)

Congrats on the big idea and on having so much success treating your UC naturally. I am jealous of (but happy for) people who get results like that, unfortunately I never have, but good for you! I wish you tons of success with your UC and your community. If you need help, I may be able to help. I have created a lot of large websites. You can do a lot for very little if you use the right tools. It really depends what type of back-end you're planning.

I was at my worst when I was not working & had no stress about work/money, I exercised lightly at my own pace, I took lots of probiotics (tried different ones), slept a lot, ate gluten free... Of course, eating normal, stressing, not exercising, didn't help either. i believe my particular condition is 100% physical.
Posted 8/27/2015 10:15 PM (GMT 0)
For me I spent 4 years on and off pred, aza, 6MP and pentasa. Nothing was really working except pred which as we all know isn't great to be on for too long. I was potentially looking at surgery.

Didn't sound like you tried any of the biologics, like Remicade.

As for my diet I avoid -

Gluten
Dairy
Nightshades
Sugar
Caffeine
Alcohol
Insoluble fibre
Processes foods
Red meat (in large quantities
Tap water

No offense, but I'd rather have surgery than follow that diet for the rest of my life. That's why - unlike notsosicklygirl - I'm never really envious of those who achieve success the 'natural' way. I'm more envious of those who get a solid remission on meds, tbh. Or people like my brother who had Crohn's in Easy Mode.
Posted 8/27/2015 11:14 PM (GMT 0)

NiceCupOfTea said...


No offense, but I'd rather have surgery than follow that diet for the rest of my life. That's why - unlike notsosicklygirl - I'm never really envious of those who achieve success the 'natural' way. I'm more envious of those who get a solid remission on meds, tbh. Or people like my brother who had Crohn's in Easy Mode.

You make a good point. Who wants to live like that forever? not me. I guess I am just jealous of people who keep it under control by whatever means they consider acceptable. I don't consider that acceptable living, but heck, people live much worse. I don't intend to live that way. I tried SCD diet and it failed for me. Honestly, if it had worked, how long would I have gone on living miserably like that to avoid doing something about it? I mean I can't live on *rice and beans* (insert whatever it is people eat there) forever tongue

and yeah, it's certainly silly to be jealous of someone who lives on *rice and beans*. Thanks for putting that in perspective. That would suck actually!!!
Posted 8/28/2015 1:29 AM (GMT 0)
gonk, boom!
Posted 8/28/2015 1:52 AM (GMT 0)

NCOT said...
No offense, but I'd rather have surgery than follow that diet for the rest of my life. That's why... I'm never really envious of those who achieve success the 'natural' way. I'm more envious of those who get a solid remission on meds,


Meds can have side effects.

I can indulge in red wine. Corona is the one beer that doesn't affect me, maybe it doesn't have gluten? But I can no longer drink enough beer to float a battleship. Moderate amounts of chocolate are OK too.

But most of the food I have to avoid are junk foods that I probably shouldn't eat anyway. I don't know how many massive amounts of donuts, cookies, beer, pizza, soda, and gummy bears, etc., that I have avoided snacking on over the past 5 years. Knowing that I will soon pay for junk food with UC symptoms is an excellent boost to my willpower.

Overall this is probably a good thing since I have cancer, heart disease and diabetes in my immediate family. When I monitor my blood work now it looks pretty good.
Posted 8/28/2015 2:15 AM (GMT 0)
SebTucknott: Welcome! I'm interested to see how your website and purpose come along. But since we're now on the topic of your diet, would you mind sharing what you do eat? Maybe an example of your daily meals and beverages?

Thank you.

P.S. Perhaps in a new thread you could also speak of Symprove? I've never heard of it, but am on the site now. Just wondering your experience.

Post Edited (U B Tough) : 8/27/2015 8:29:48 PM (GMT-6)

Posted 8/28/2015 6:01 AM (GMT 0)

notsosicklygirl said...
haha, very nice! Thanks for joining and saying hello :)

Congrats on the big idea and on having so much success treating your UC naturally. I am jealous of (but happy for) people who get results like that, unfortunately I never have, but good for you! I wish you tons of success with your UC and your community. If you need help, I may be able to help. I have created a lot of large websites. You can do a lot for very little if you use the right tools. It really depends what type of back-end you're planning.

If you wanted to help that would be great, in whatever capacity. Drop me an email, seb at ibdrelief dot com

notsosicklygirl said...
I was at my worst when I was not working & had no stress about work/money, I exercised lightly at my own pace, I took lots of probiotics (tried different ones), slept a lot, ate gluten free... Of course, eating normal, stressing, not exercising, didn't help either. i believe my particular condition is 100% physical.

Out of interest, when you say no stress, were you still worrying about your UC? E.g. having accidents, going out, what might happen etc. For me one the biggest successes over the past year has been being able to overcome and remove that kind of stress.

NiceCupOfTea said...
Didn't sound like you tried any of the biologics, like Remicade.

They were never offered to me. I think at the time they were pretty new on the scene also seemed be available for Crohn's before UC. But to be honest I'm much happier doing what I am than on a biologic.

NiceCupOfTea said...
No offense, but I'd rather have surgery than follow that diet for the rest of my life. That's why - unlike notsosicklygirl - I'm never really envious of those who achieve success the 'natural' way. I'm more envious of those who get a solid remission on meds, tbh. Or people like my brother who had Crohn's in Easy Mode.

Honestly it's really not that bad once you get the hang of it, it's one of the reason for coming up with IBDrelief to show recipes and meal plans that are actually really nice.
Also for me it's a sacrifice I'm more than willing to take know how well I feel now. In fact I feel better now than I've ever done in my life. No fatigue, have more energy and so on.

I see it all as a balance. You have to make changes to overcome the "bad" stuff in your life, what ever that is. For me I still have a lot of stress in my life from running my own business and having a lot of financial strain.
I feel that I have to make more changes and sacrifices to overcome that stress. If one day I can remove it then I won't need to be as strict.

I'll post some of my meals later :)
Posted 8/28/2015 8:20 AM (GMT 0)
I agree with those who find this to be an empty, misleading story.


Seb, you claim to have been diagnosed in 2008, yet you also claim that biologics were never offered. You say that was probably because they weren't around at that time, and you presume they we're mostly used for Crohns.
That is nonsense.
I looked at your website, and really tried to find any actual information, but there was none. There is a blog that mostly talks about your site and yourself, and about fundraising. And there is the promotion of Symprove, the probiotic you take. I searched the Symprove website but again no information about what strains are being used, or how many cfu's are present for each strain - no real details at all.

Telling people that lowering stress, sleeping properly, changing their diet (and claiming that fruit and vegetables are easy to digest rather than red meat) is overly simplistic and misleading.
It seems that this is more about self promotion of your story of your own limited journey with ulcerative colitis and your personal approach to feeling better.

Good luck of course, but many do not find relief with such broad panaceas and vague concepts.
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