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Posted 5/15/2012 9:52 AM (GMT 0)
Good morning.

I was just wondering as there are so many terrible stories on this forum, if anyone out there has mild UC and have had a mainly flair free life and normal health?

Do most people with mild UC live normal lives or is this forum typically a bottleneck for those who have it harder?

Sorry to stir things a little it's just I need some kind of reassurance here.

I find it so disheartning when looking on the net that there is no groups or anything like " I have UC but I'm fine" or " I have UC and it's not that much of a big deal"....

All I can find is horror stories and I can't find anyone who has had

it easy.

 

If it wasn't for my small family who I could never hurt and my wonderful girlfriend I don't know what I'd do.

I know I am lucky I have it mild (20 cm rectum/sigmoid - for now) but I know that the probability of it spreading is high and having a colectomy is around 30-45% or so over 25-30 years.

Looking for some hope eyes

 

 

 

Posted 5/15/2012 10:19 AM (GMT 0)
Ok well from what I understand with any forums or questions on the net is that poeple ask when things go wrong.

If id listen to all the poeple on yahoo answer about any symptoms I had in my life I would have cancer many times already.

Many poeple here would have moderate and more UC and they would get into periods of remission.

When I'm worried I ask questions, when I go well I live more my life. Doesn't mean I don't want to support on here but maybe it means I wont be here as often.\

I have now mild UC and even though I was never close to vurulent UC, diarrhea all day, stay at the hospital and stronger meds, I certainly had bad episodes. So when I do I seek for advice here and go to my doctor.
Posted 5/15/2012 10:35 AM (GMT 0)
Everyone says to get a colonoscopy in your 50's and that is what I finally did. That was when I was first diagnosed with ulcerative colitis. I did not know exactly what that met. I had very mild symptoms so I thought UC was a minor inconvenience, like hemorrhoids or something.

Looking back I probably had mild symptoms for 5 years previous to my diagnosis. Then about a year after my colonoscopy I experienced my first severe flare. Everything hit the fan. That was when I finally understood that UC is serious business.

But once I escaped my flare I have been able to get my life back. I am back to mild UC again. I feel that I can control my symptoms very well by monitoring my diet and taking some supplements every day. Diet is mostly avoiding gluten and an eclectic list of foods. Supplements are mostly probiotics. Extra supplements are needed sometimes to help recover quickly if I eat something bad.

Are you taking any maintenance meds? They might be helpful. Some members here find that timely mesalamine enemas keep things from getting out of control.
Posted 5/15/2012 10:44 AM (GMT 0)
Many of us here have had long remissions- I had one that lasted around ten years and I have heard of sme who have had them go on for 20 years or more, or whose flare ups have been short and mild. Its true, most with very mild UC or in multi-year remissions tend to stay off of IBD forums altogether.
Posted 5/15/2012 12:17 PM (GMT 0)

I was diagnosed with uc in 1991, flared for 3 months, responded well to meds and then I was in remission for 15 years.  It was like i didnt even have UC.

I had my second flare in 2006, again, it lasted about 3 months, responded well to rectal meds .

my 3rd  and current flare started in 2008, and still flaring, not responding as well to meds. I belive i am still mild/moderate inflammation.   in 2010 i came here to try and find alternatives/complementary treaments to meds.  I didnt even realize there were so many people suffering and not responding to meds until i came here.  I definitely think this forum attracts mostly  people who are either newly diagnosed or who havent been able to get in remission.  (wow, that seems like a bad combo!). 

yes, There are people out there who have mild uc, or who are in long remissions.

 

Posted 5/15/2012 12:32 PM (GMT 0)
Kiwi,

Welcome to the forum.

I'm glad you've found us.

You'll find this is a great place to vent, get advice, and ask queries.

And IMO, many of the folks on this forum know more than most doctors, as they've been in the trenches.

As has been said before, some here are in unending flare, some are newbies trying to grasp this darned disease, some are in remission, but I will say that many who have achieved remission don't come back too often - so don't take that as a a sign that this forum is just limited to those in the most acute disease phase.

In my case, I had a pretty severe case of UC. I was bleeding very severely for more than 1 1/2 years, and after trying all the traditional meds out there (none of which worked), my doc finally gave me a choice of surgery or biologics. Neither choice was acceptable to me. So I had to find my own way, and have been in remission since (if you're interested in seeing what's worked to put me in remission, you can check out the Resources pages,

please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post).

So yes, there is hope. You'll just have to find out what works best for you - and that will probably be a combination of meds, supplements, and diet.

I will tell you that regardless of how severe your UC is, it is important to have a doctor who will listen to your concerns, is empathetic, and who you feel you can talk to.

We are here for you, just let us know how we can help.

 

Posted 5/15/2012 12:40 PM (GMT 0)
Kiwi, I've been frequenting this forum for years and was even a moderator for a while. I can tell you that people come here when they're having problems - new or severe flares, etc. I'll see someone post for a few weeks or months, then not see them perhaps for years, then will see them again when they have problems.

Please don't assume this forum is representative of the world of people living with UC, because in actuality it is heavily skewed to those who are having a lot of problems at any particular time. Some of us have more problems than others. In my case, I flared uninterruptedly for a long time, but now have been in remission for six years. I live a normal life, but I am meticulous about continuing my treatment, as I know it keeps me in remission.

Good luck to you, and remember that a positive attitude is as important as any other part of your treatment.
Posted 5/15/2012 12:57 PM (GMT 0)
I agree that this forum is mostly full of people struggling with their UC - that's part of the reason I stick around, becuase I'm not struggling and I want to show people that they might have the same luck I have. I was in a horrible flare when I was diagnosed with pancolitis in January 2009. I was having 15+ extremely urgent episodes of diarrhea a day, had lost a lot of weight, and was extremely weak. However, that's been my only flare so far. I've been in a rock-solid remission for three years now (zero symptoms) and had a completely clear colonoscopy in October of last year.

I do want to stress that I fully believe I would not have stayed in remission this long had I not been fully committed to taking my meds - I never miss a dose of my oral meds (I've been on Apriso for almost three years) and I still use enemas twice a week. I also take a high-quality probiotic. If I'd been lax about my meds, I expect I'd have flared by now. I do want to say that people who do take their meds like the "should" still flare - that's part of what makes UC so frustrating, but a big reason for flares is non-compliance with meds.
Posted 5/15/2012 1:41 PM (GMT 0)
My UC has been what you could call "mild".  I was diagnosed in 2005 and had only one or two very mild flares.  I didn't know how serious this was for many people until I came to these forums just this year.  I had a bout w/ diverticulitis last year and have been mildly flaring on and off I think since then.  I've only ever used colazal and occasionally canasa suppositories.  On the canasa now b/c I think I really need to be using the rectal meds but would still say this flare is mild.  I didn't even realize that people-a pretty good %-have colectomies with this.  I agree that many people in long term remission or very mild UC never come to the forums.  I too never miss my meds and take a probiotic.  Food has only bothered me in the last year, and I realized that my diet which was HEAVY on the raw veggies/whole grains/nuts/seeds was probably not the best thing for my colon. Stress is probably the #1 trigger for me.

So, yes there are some of us w/ mild UC, but I do still take it seriously.  The info I have learned here has been tremendously valuable.

Chinamom

Posted 5/15/2012 2:06 PM (GMT 0)

Thanks for all the information guys!

It gives me hope that maybe I can live with this thing after all smilewinkgrin

And I should be greatful that it's mild and I'm currently in remission.

I believe that I had symptoms before my diagnosis for 5-7 years or so and if I could live with it then. I can live with it now.

As for the medication side of things my GI doc stated that as I was a very mild case he would leave me for 6 months without meds to see how I get on. So far so good...

I do eat very healthily and take probiotics and get plenty of rest.

Thanks once again.

Posted 5/15/2012 3:56 PM (GMT 0)
People with mild disease or disease in remission are far less likely to seek out a forum on their condition and post about it. I was a poster child for mild disease in the first few years after diagnosis and, during that time, the thought of joining a forum about it literally never crossed my mind. Wasn't until I'd been suffering for a while that I was finally driven into trying to find out more about what was going on and, in the process, discovering HW (a tad obviously).

My brother also has Crohn's/UC. He always calls it Crohn's, but actually it's more like indeterminate colitis, in that his doctors have been unsure whether it's Crohn's or UC over the years. He's always managed to work full-time without any breaks, while being a dad to two boys and taking them out to play sport, etc. He's had Crohn's (or UC, if it's actually that) for 13 or 14 years now. So yeah, he leads a normal life. He also eats, apart from very spicy food, anything he likes.

Anyway. As you are a mild case, the chances are excellent that you will never need surgery. But I have noticed that some folks on this board are extremely negative about surgery, to the point of being quite offputting about it, when in reality it can be, literally and metaphorically, a lifesaver. With UC, you do not even have to have an external bag anymore, but can have an internal pouch. Honestly, I would far, far, far more fear the years of potential pain and suffering leading up to the decison to have a colectomy than I would fear the colectomy itself.

But that is a remote possibility for you in any case. I'm just mentioning it in case one day things should change drastically, although of course I hope they don't.
Posted 5/15/2012 4:33 PM (GMT 0)
uncertain kiwi, it is definitely possible to just have mild UC. some people are just that lucky. i had a 4 year remission with no meds and then all hell broke loose.

my dad, on the other hand, has UC and has been in remission for 23 years, no meds. he gets some bleeding and diarrhea if he eats his trigger foods, but besides that, he can go back to normal in a few days. he also eats a high fat diet with lots of red meat, dairy, and eggs, drinks like a fish, and smokes a ton. his UC really never really gets out of hand. after he had his first flare (6 months long), prednisone and sulfa. pills got him back to normal.
Posted 5/15/2012 5:08 PM (GMT 0)
I have ulcerated proctitis and mild colitis. I've been in remission for a little over a year now.
Posted 5/15/2012 6:52 PM (GMT 0)
I've dealt with UC for over 23 years. Nothing's been as bad as the flares I suffered before diagnosis.

The first two years were difficult while getting the hang of recognising flares earlier symptoms and maintaining my meds properly.

I've only used oral/rectal mesalamine (5ASA) meds.

q
Posted 5/15/2012 11:35 PM (GMT 0)
Hi kiwi, I take it you're in NZ? If so where? I'm in Auckland myself.
There are a number of support groups around the country that meet every up every other months or so. So if you do actually want to 'meet' some fellow UCers and chat/network/listen to guest speakers etc I'd recommend looking up the Crohns & colitis support group in NZ and find out when your local get-togethers happen.

This forum is great too, but I tend to agree with the above posters saying that people who use forums by and large do when they have (or have had) a more pressing problem and are less likely to when there is no problem or mild symptoms. The good thing about this one is there are so many users with different experiences and contributing loads about a variety of treatments and alternatives. If it exists it's probably been discussed here or soon will be.
Posted 5/15/2012 11:41 PM (GMT 0)
Kiwi, my mom has UC. She had one big flare, took sulfazine for a few years, then went off it and has been med free and in remission for 30+ years. It can happen. She'd never even think of posting on a UC forum :)
Posted 5/16/2012 8:54 AM (GMT 0)
Hey Jimbo!

Good to see another Kiwi on here, doesn't seem to be any!

I'm living in London at present but my home town is Tauranga.

I have been in touch with the BOP support group for when I go back home and It will be nice to meet up with people who have this.

The hardest thing at the moment I suppose is the fact that I have not met anyone else who has this and seen how they get on day to day so I just
assume that it's the end of the world..

Do you know of many people back home with UC Jimbo?
Posted 5/16/2012 9:37 AM (GMT 0)
No way. My home town is Tauranga, and I just returned from 10 years in London. So I guess we have a bit in common. In fact I'll be back in the BoP next weekend. I don't know many people back here with UC yet but I'm sure it's not that uncommon these days unfortunately. The Auckland group has 120 members and I'm sure that's only the small proportion.

I think it's perfectly reasonable to expect to live a normal life with UC especially if you have mild UC. I probably fit that description though it's maybe a bit more stubborn than mild as I've had it for 13 years now and haven't really been symptom free for any decent period of time for a few years , but I'm at my best now and am currently controlling it without drugs and instead use diet and supplements to keep it at bay although I would not say I'm in remission but am down to 2-3 fairly hassle free BMs a day. It IS working for me and I expect to continue to see improvements but it will take time.

I am able to hold down a decent career job and have only had 1 day off work this year apart from a few doctor visits. I fish, I scuba dive and exercise, i have a fairly normal social life. I have made some sacrifices though and I don't drink much anymore and I am disciplined with what I eat ( no alcohol, sugar, junk food, processedbfood in the last 2 months and I expect to keep that up for at least a few more).

I think it is very important not to put your head in the sand with the disease - I did that for the first 4-5 years I had it. Find a good GP, have a colonoscopy every few years, research a lot, try diet modification as well as using medication.

I'm also lucky to have a supportive fiancé and that helps a lot.

Having said all that there are times when the disease can kick you hard and it's important to recognize those signs early and (through trial and error) work out what works best for you to get through flares and tough spells. It can drain you emotionally and physically. Getting enough sleep is a big deal for me and I suffer when I don't get it.

But yes you can have a good life with UC. When do you return to NZ?

Post Edited (Jimbo NZ) : 5/16/2012 4:03:43 AM (GMT-6)

Posted 5/16/2012 1:44 PM (GMT 0)
I have UC, an active social life, a job, I climb sometimes, I run, I cycle and many people wouldn't even know. I don't drink too heavily compared to my friends as I can't but that might have happened anyway. And still love a good curry.

 

So fret not. Plus I've told people before who've said "i have that" wouldn't have had a clue.

I started using this forum as I had a bad flare recently, and probably still do, but I feel fine, so not too fussed if I bleed and such. Pain comes and goes, got more interesting things to think about. (and take meds religiously)

When I was first diagnosed I freaked out by looking at forums, I think they're a really BAD idea when you're finding your feet. I remember once googling "can I eat wheatabix" and crying down the phone to my parents "i'l never be normal", I still eat wheatabix daily. I don't eat junk though.

Everybodies different.

Posted 5/16/2012 5:15 PM (GMT 0)
Hi Imjustagirl215.

I think your right in saying that too much internet use with this disease is probably a bad thing.

If I didn't have a computer I wouldn't even have known this thing was that bad!

I have to be thankful that I am in remission and the colitis is mild and distal, it could be so much worse!

And Jimbo it's a small world! I miss Tauranga so much, my family are there and I havn't been fishing in a year and a half!

I'm glad to see that you are trying to go med free as I want to take the "free range" approach for as long as possible too.

Planning on coming home by the end of the year for a nice hot xmas, to take strolls along the mount beach and spend time with my family.

Stay in touch Jimbo!
Posted 5/17/2012 3:15 AM (GMT 0)
I'm glad this topic was created, because I feel out of the loop sometimes. I was diagnosed severe ulcerative colitis/crohns, but since getting on prednisone and getting off (along with modifying diet and supplementing) i've been not great, but 'mild' compared to what others experience on the forum I guess you could say. I've never been in the hospitals either.

I'm sure it looks just as terrible inside there as it did when they inserted the scope almost a year ago, but I'm just barely 'breaking even' most of the time, sometimes getting on the edge of 'active colitis', but then again, isnt that how alot of us are anyway?

I have a question for all of you diagnosed with mild colitis: Did you ever experience the excruciating pain prior to diagnosis? And the massive amount of blood loss?
Posted 5/17/2012 9:53 AM (GMT 0)
steriofidelic89,

When I had my first flare 5 years ago I had some pretty painful cramping and 3-4 bouts of bloody D but it only lasted about a week.

I took myself to hospital and just had some rehydration fluids given to me and imodium and went back to 100% shortly after and remained that way (in perfect health)
for the next 5 years. The last flare that got me diagnosed was over this last xmas which started with 3-4 loose stools with a bit of blood. No pain just a bit of weight loss and
lethargy.

After taking a short course of asacol and cortifoam I came right after 3 weeks and have been in remission since....

I do eat very healthily and have cut out all processed food and carbonated drinks which I think may be a huge help to staying in remission?
Posted 5/17/2012 11:02 AM (GMT 0)
Hi there..(I'm also a kiwi - living in Wellington)...My UC started out as mild to moderate and I now have pan colitis and on the waiting list for surgery. 
Posted 5/17/2012 12:01 PM (GMT 0)
Stereo, I wasn't diagnosed with a "severity" of UC - my GI at the time didn't do that, because he found that the apperance of the colon/amount of colon that was affected rarely correlated with the severity of symptoms. I was probably in the category that most GIs would call severe, as I had pancolitis, was having 15-20 extremely urgent BMs a day, and lost a lot of weight. However, I didn't have blood just pouring out and I had no pain. I did experience big cramps that would sort of double me over when I was having a BM, but they didn't hurt. I seem to have a pretty high tolerance for pain, though. My GI was shocked I wasn't in pain.

As for most of us being on the edge of active colitis, I think a lot of people on this board are, but I don't think the majority of the overall UC population is. I've been in a stable enough remission for a long enough time that I don't feel right on the edge at all. I know it's entirely possible for me to flare at any moment, but I'm certainly not worried about it right now.
Posted 5/17/2012 3:12 PM (GMT 0)
stereofidelic89

I was diagnosed with really serious colitis so was in agony. but, I was a moron who persuaded herself that bleeding was normal for two years, it just steadily got worse, I got paler and skinnier until rumours of anorexia had spread and then the sporadic urgency was daily, then hourly, then bam, hospital. my folks had "a weird feeling" and drove for two hours to find me grey with the NHS phone number written down my arm in eye liner. when they asked why i hadn't called and ambulance i said "the NHS number said 'emergencys only' so i hung up" - not my proudest moment i must say. Still amazed that they came just because my mum couldnt shift this weird feeling...whoah totally babbling now...anyway...was just meaning it got worse slowly. 

I was diagnosed on an x-ray, it was amazing, they showed me an outline of how big it should be and I was more than double the size (anything else was too painful back then)

But now, the pains just a mild ache for about half hour after going to the toilet, and the bleeding doesn't bother me too much. its not so bad these days, it was really heavy a few weeks back though. THAT hurt.

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