Looking for people with MILD UC only

I read all the time that approx 50% of people with colitis have it mild, who thinks that this figure is true?

To be honest the thing that's keeping me sane at this point is knowing that If I ever needed to have a bag I wouldn't mind that much.

I'm more scared of the side affects of drugs, steroids causing arthritis and liver problems.

I look at it this way.... If people have there colon removed because of a car crash or injury, they live a perfectly normal life afterwards. why should we wait for things to get worse and run a
gauntlet of drugs when we could remove the problem completely? It's not like they leave decayed teeth in your mouth " just because they help you chew".

If it was up to me I'd get the surgery in the near future so I didn't have to worry about all the "what if's".

Does anybody else think like this or am I completely off my rocker here? :)

HLA-B27 is a gene linked to Ankylosing Spondylitis, which is a type of arthritis that people with IBD can sometimes get. You can get AS even without the gene, and having the gene does not absolutely mean you'll get AS. How's that for some solid predictions!

I think it's good that you are on this forum kiwi, so maybe you won't put your head in the sand. I did that for 4 years, would take my meds, feel better and forget, and ignore my mild symptoms, a little blood, no pain, etc. So I feel going on and off meds is not so good, and may lead to worsening symptoms.

I think you're off your rocker! seriously!

I doubt you'd be allowed surgery without being serious anyway. But I don't have any side effects from medication...other than pred...not touching that again in a hurry. I certainly wouldn't have all my teeth taken out if one was rotten.

A friend of mine was diagnosed really late, and lost a lot of his colon, can hardly eat a thing, is really weak most of the time, looks like an ill person.

I take medication and can do what I like most of the time.

I also know somebody who was diagnosed years ago, takes pentasa daily, hasn't had another flare up in over 6 years.

Everybodys different really. Wouldnt catch me having an operation unless it was an emergency.

on another note, my dad has Ankylosing Spondylitis - and not UC. Its a really aweful condition. But he's okay. Yeh my genes are screwed...lol

 

Kiwi,

Removing the colon does not necessarily end UC.

Don't forget UC is an auto-immune disease in which the body sees the colon as a foreign invader and decides to attack it.

BeatUC has posted a couple of threads about the fact that surgical removal of the colon does not cure UC, with statistics, examples of some stories, etc... including one story I remember about someone who had his colon removed and retained a 2 inch piece of it (if I remember correctly) where it attaches to the bag - and in that 2 inch area of the colon still had UC.

I hope BeatUC will chime in and re-post those threads for you.

I wasn't able to  find all the threads, but here are a few for you to peruse:

https://www.healingwell.com/community/default.aspx?f=38&m=1961129

https://www.healingwell.com/community/default.aspx?f=38&m=2023711

And here is the post by BeatUC on this link: https://www.healingwell.com/community/default.aspx?f=38&m=2327564

"Surgery why not?
read this:
http://www.internalmedicinenews.com/specialty-focus/gastroenterology/single-article-page/colectomy-not-a-final-cure-for-ulcerative-colitis-data-show.html

" The widely held view that surgery is the “curative” option in patients with severe ulcerative colitis could not be further from the truth, according to the results of a large, population-based study presented at the annual meeting of the American College of Gastroenterology.

Indeed, colectomy wasn't the end of the story for the majority of ulcerative colitis patients who underwent the procedure in Olmsted County, Minn., during 1940-2001. The cumulative risk of additional gut surgery that wasn't part of a planned multistage procedure was 28% within the first year following colectomy, 53% at year 10, and 63% at year 20, reported Dr. Shamina Dhillon of the Mayo Clinic, Rochester, Minn."

You can look through all the postings and find out all the pertinent facts, should you want to.

 

Thanks for the threads.

The common trend seems to be the healthier you are when you go in for surgery the more favourable the outcome?....

Most people seem to be very glad they did so and wish that they had surgery earlier by the seems of it. (from what I read in the threads)

Being an Engineer I always think - ok so there is a problem, which is the best way to try and rectify it by protecting as much of the surrounding mechanisms as possible.

eg.. If a bearing was worn in a ships engine I wouldn't keep throwing grease at it just to maybe ease the heat and friction for a while until it blew and destroyed things... I would take it out before it damaged the whole engine!

I suppose I'm struggling with the fact that doctors wait until the very last minute to operate when they could have prevented all the pain and sickness by removing the offending organ.

I'm not naive, I know a bag is not easy and would be very hard to live with and complications could arise but at least the UC is gone! And with that goes the worry,pain,toilet issues and extraintestinal manifestations (if they havn't already started)

Why wait until the steroids etc give you arthritis,diabetes,liver and kidney damage to then get surgery?

As I said, If people have bags through trauma and do well why would it not be the same for us?

I obviously hope I never need surgery but at least the piece of mind that would come with it would be a great relief.

I love my kidneys, liver and bones and want them to remain healthy!! :)

And last of all insofla, if they take the colon its the small intestine that comes through the abdominal wall isn't it??

Personally, for UC....I'd never run the gamut of meds before having my colon removed...I've had too good of a run with 5ASA oral/rectal to be on meds that could have the potential to affect my quality of life for my colon.

q

I wouldn't call it remission...are you on rectal meds as well Lodi?

q

Lodi..which mesalamine oral exactly and what dosage?


do your search and reading. Rectal meds make sense based on one thing rectally...UC starts there, moves upwards, heals downwards and ends there.

So, poo goes through the rectum and anything else that's there when flaring...regardless of how high up it is. Makes sense to help heal that area as well.

Plus, oral 5ASA meds meds cannot heal the rectum.

q

lol....never heard that one before.

As well....since you mentioned you have inflammation throughout your colon, you're not on enough 5ASA med.

If you've had improvement, that's great...it means the med is helping. A gradual progression up with dosaging might help you find the magic amount for treatment.

But....it would be sad if the doc doesn't have you use the rectals....and I stress that the enemas are higher dosage per treatment...just where you need to "rectify" the problem.

q

Hi..what would be awesome is if you created a signature to state you have CD and where it is.
It helps a lot. Where is your CD?


Yeah, so you exaggerated a teeny bit...pshaw...no biggie. Tomorrow is a state of mind..lol.

q

Uncertain Kiwi: i share your sentiment. Im also pro-surgery if it means i can be free of pain and live a normal life.
Tbh im sick of using meds that don't fully work. been on rectals for over 5 months nonstop now and while they help greatly they have not eliminated all symptoms. I still get urgency and cramping, some days are worse than others. Im so frigging up to my nose with this disease i just want something that really works not masks some symptoms.

I've been a 'lurker' at the UC board for a long time, but felt weird about posting here when nobody else with Crohn's did. (Apart from pb4.) Not sure what got me over that inhibition; maybe something to do with the Crohn's board hardly moving for a few days and me getting bored... <_<

I hope the UC forum member is doing okay too. Most of the time, not posting is a good sign - it means the person is doing well and keeping too busy to post. Conversely, if they relapse they are likely to return to post about it.

The stricture massively limited my food intake for a few months, but I've gradually returned to eating most of what I was eating before. I'm not entirely sure if the stricture has widened or if I'm just better at avoiding potential complications, but I haven't had a major, hospital-inducing, obstruction since January. I am still cautious with my diet, but it's lovely to be able to eat fruit and veg again.

I must admit, a large part of me has wanted surgery, even with the Crohn's. Getting rid of the biggest source of inflammation by miles, the colon, is quite tempting. Hopefully the low-grade fevers (which have made a comeback) and the general, near-permanent, grotty feeling would go, along with the inflammation. But... I'm a bit of a coward. I don't like taking risks... :-/

PS: After this post, I am off to bed. Goodnight :p