Newly Diagnosed Help!

You clearly have a very mild case, but (not to scare you) that can change at any moment. BUT, if you take your meds religiously and dont take your disease for granted, you should be ok. I know its tough to hear this now, but you should consider yourself lucky!

^^ +1

garylouisville said...
Yeah. The worst thing about having a mild case is getting cocky and quitting your meds because you're feeling better. This disease is forever and each flare usually gets worse and worse so the very best thing you can do is take your meds religiously forever, even if you have been feeling totally normal for thirty years. UC waits in the dark in the bushes just waiting for you to get complacent and then it rears it's ugly head and what worked before often doesn't work again, causing you to have to take harsher and harsher meds. The goal is to never let yourself flare again by taking those meds forever.

total rubbish for many !

I have not had terrible disease but I would say that for a few years "mild" was not the right word. I had, like you, rectal inflammation and also inflammation in the cecum. I'd be interested to hear what your GI says about that. It is not a typical presentation for UC.

Hey Teddy, reading these forums can leave you in fear of what you read when you see all the negative it depresses and worries you, but just remember the majority of UCers don't post on these forums and one of the reasons is because sure they may have the odd flare but it is perfectly controlled with medication and they go on living life with barely any issues related to the UC.

Unfortunately if you're like alot of folk here once you've had a little taste of information you cant just leave it alone and want to know more and more to the point that it kind of becomes obsessive over this disease even when you are showing no symptoms and the constant worrying can do you no good so just relax, maybe smoke some green and enjoy life.

Post Edited (Virdent) : 2/28/2015 11:29:47 PM (GMT-7)

One of my numerous docs (good chap - good looking too ... Not relevant but made appts more fun) once said to me he did not deal with people based on the medical severity of their disease. Rather he dealt with them based on how it impacted their lives. So sometimes someone with 'mild' inflammation may struggle on a day to day basis more than someone with a severer case.

So to some extent i suggest ignoring the terminology and if it doesn't adversely impact your day to day life, well get on with life and enjoy. I know a number of sufferers who had one flare once and that was it. So it's not all doom and gloom. Here's hoping you have no use for this forum 😊

Yes really! My understanding is once you have the disease you kinda have it forever ... It's whether you get any more flares. So no flares is as good as it gets. One friend had one once probably 20years ago and never suffered again. Lucky, rare, common ... I don't know. But true... How we'd all like to be.

Hi teddylaw ... This is not exactly a balanced survey so not something to draw too many conclusions from (but a bit of positivity is fine 😊)... I know only 3 people personally inc me with my disease (I was originally diagnosed with UC later changed to Crohns dx) and other two had minor issues that never reoccurred. Both were on no special diet that I was aware of ... But neither took any medication after the initial flare (one had trouble for about a year only). Sorry don't know the detail ... But not everyone ends up on the increasing drug circuit.

Personally I think diet is key in helping the disease... So may be worth (if you haven't already) looking up foods to avoid. There are some pretty standard ones ... But you'll see from forums such as this we all have our idiosyncrasies... I can not have coffee, peanuts or coconut ... Yet others on here have no prob.

Enjoy Costa Rica and don't get too bogged down by the forum. It's great but does appear to attract those with, and focus heavily on, one end of the disease.

Sorry what I meant is that they no longer needed any medication after the initial flare ... Both ceased taking it and had no reoccurrence. No prob with questions just sorry I don't know detail. Both had their flares a long old time ago now ... Not something that therefore remained a significant event in their lives.

Teddylaw, I tend to be a person who ignores a lot of medical stuff, so while I did treat my rectal inflammation with the right meds, I never got to the point where I had no symptoms, and I just didn't pursue any other options and chose to live with the rectal bleeding, mucous, indigestion and urgency.

That worked until I started developing joint pain. I think that years of chronic inflammation was just not a good thing - it never is - and it took my bossy GP basically lecturing me, plus a flare-up of joint pain so severe that I couldn't walk, write or chew my food without pain, for me to get serious about getting my IBD into remission.

If you read my signature you can see how long that took - about 10 years. I think a more focused approach would have shortened that by a lot. So I never missed work, I never had to be hospitalized and I never needed a blood transfusion or anything like that, but I did have enough pain and fatigue to stay home most weekends for a bit and to end up on 60 mg/day of prednisone for a month to get everything under control.

I liked what Duffle said above about quality of life - for me this has been primarily a quality of life disease. I enjoy my life a lot more when my bowel is not inflamed. I am not anemic. I do not have joint pain. I do not have indigestion (mostly). I have a restricted diet but it isn't that hard and I appreciate it for making my life better.

While I hope you never get worse, and do not have any food problems. (Who wouldn't.) You should be learning and planning to take something to keep inflammation at bay, and be prepared for some more serious flares.

Hope is good, but denial is bad. You need to walk the line between the two. You are almost begging people to tell you that this flare will remain mild, that any future flares will be mild or non existant, that you might might have to take meds regularly, and that you do not have to watch out for any foods.

Some or a lot of this may be true. But you would be best advised to wait until you are in a long remission before assuming this is you. Many/most people begin mild, and accelerate over time. Often with periods of complete remission, but some simmer for years and have occasional serious flares.

Your current mild symptoms are a blessing. They are however not highly predictive of the future. Sorry.

Learn, stay insured, pay attention to your body.

well, a betting person would say the odds favor getting worse. on average the do. but there is always hope that you are a lucky person who will never have a serious flare. some don't.

I'm just saying mild symptoms now are not highly predictive of the future. but, having caught it early may be the best reason for hope.