Who is writing on forum and reading things about UC on internet my thoughts.

I'm currently in remission (1 bm a day without urgency), so it's definitely not a myth. It took me 2.5 years to achieve remission, some have taken a lot longer.

I'd say the regular posters on any disease forum are often the most difficult cases, those struggling for answers. It's a generalization, that we don't represent a random sample of those who have uc (that there are uc people in remission that don't think about or have a need to post here). Seems to be some truth behind it as we have many who return here and post once their uc flares up again. Some in remission (like me) still hang around, to give others hope. In the end, it's mostly guesses and speculation.

Let's hope we can all one day forget about uc, and return to those activities we enjoy without worry

hmmm, I post, I google, and am not a most difficult case. It's a mixed bag of who posts here....and don't forget spammers, repeat IDs, etc.
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I have no one to share my pain with because they all think that because I look fine that I am not really sick, so I come here to share my pain and anger, but also to share things that have worked for me to others who may benefit.

I come here because the people in my actual life all suck and I need to come to this forum to find real human beings with feelings and kindness and understanding and support so that I know the whole world isn't selfish, self-entitled, self-absorbed, narcissistic, mean and nasty like 99.9% of the people in my life are.

I'm in remission and yet I still come on here sometimes, mainly because I like the people, its nice to find out how folks are getting on, whats new and whats happening etc and I really try to help others if I can as well. I also feel like if something horrible happens I can ask on here for help and receive really good advice and that's important to me because I often feel like I'm in the "wilderness" with not a great deal of support where I live.

This is my first post. I joined an hour ago or so. I was diagnosed with UC 5 years ago. I'm 35. Have never had any real serious symptoms until a month ago. Basically forgot about or kinda didn't really believe I had it. Four weeks ago I started pooping blood and having nasty abdominal pain. I've been freeking out and searching for all the information I can find. So, I'm the type of person who posts in forums. Makes sense.

That's ridiculous that your doctor would make you wait that long! I would be infuriated.

Omg Ewa and Pb4 you both rock!!!!!!

Don simple advice change your GI. UC is lifetime disease and you will need a GI through all your life.
Do you think this guy is good for that?

I am so sorry for those of you being held up by your poor medical service. It happened to me too with my second flare. If you have a UC diagnosis already, please don't wait weeks just for them to look. Get on mesalazines at least if you tolerate them. Rectal meds in particular to at least help with the urgency.

I can say with confidence that I have had years of remission although now thinking about it, the fatigue never fully lifted so perhaps it was always there a bit for me but please don't let anyone tell you that remission is a myth or impossible.

My first flare age 18 pre the internet (think I'd had it brewing for a few years though) I was given steroid enemas and off I went. Everything cleared up quick, all good. No advice as to what to do or expect, no internet to check things on. Mesalazines were not prescribed routinely for maintenance then. In some ways this was really good. I was back to normal with no urgency unless I drank coffee and had no problems with it for another 4ish years. I am glad that I was ignorant in some ways because I was adventurous in those years and did not suffer from anxiety about relapse which could have contributed to a relapse. In other ways I am not glad because when I had my next flare and treatment got put off and off, I probably would have been fine if I had been able to explain what I had and got some steroid enemas again instead of ending up with pan colitis and scarring.

After that bad flare, still pre-internet, and with little advice from doctors, I went off and lived a life full of travel again. I put up with a terrible flare once over a period of 18 months as was living in a country with little medical help at that time. Reading this forum some might think you'd never recover properly from a flare like that, I did though, and had a lot of years with only mild symptoms no worse than those of someone with a bad case of IBS.

These last two years have been my worst, probably due to exacerbation after c diff but I am almost in remission now, although suffering bad side effects from thioprines that are lasting beyond having given up the drugs...my GI though is not optimistic that remission has been achieved this time.

The net is a double edged sword. I am so glad to be able to share with others as so few understand how the disease is to live with. I am reassured by the lack of any common diet cure that I am not doing something "wrong". I enjoy reading about all the new research although it if frustrating that it is all "so near yet so far". Some tips on here are really helpful. However, I don't think I'd have felt so free and easy about what I could do in life if I'd have been a part of all this aged 18.

oh, and I'm amazed by how high my post count is on here. Doesn't feel like I have talked that much! I do remember though when on steroids I was posting non-stop

Don't forget about the silent majority. Lurkers!

For example there are 20 comments on this thread, but nearly 400 views. I know each view is not a unique visitor but still that is a big difference. There are tons of people like who me who visit here all the time but rarely/never comment.

I have been flaring on and off for about a year and I come here for advice and support all the time, but no one knows because I rarely post. I become informed, soothed, and reassured about my illness by reading about other's similar problems and the all the helpful responses they get.

Not sure how that would affect the numbers in the OP, but we lurkers are out there!

Poor medical service seems to be the norm around here, man can I relate. I was diagnosed with mild to moderate UC just about a year ago. It's been "try this, try that, this will work, this will help-see you in three months" from GI doctors, with next to no followups. It takes his nursing assistant days to call me back after repeated messages to their voicemail. Meanwhile- the colitis has gotten worse.
Very very frustrated here. I feel like if these doctors had been competant and had a plan, they could have caught this in the bud months ago and helped me get into remission while I still only had left sided colitis. Instead the flareup continues and I can tell by the way I feel that the colitis has progressed.

I gave up on those quacks and am currently seeing a GI at the Mayo Clinic, who seems to at least have a good strategy. He says I should have been given the Uceris from the very beginning  right after the colonoscopy to bring down the inflammation, THEN transitioned to Lialda to get this in remission. This guy is not any easier to get in to see either, though. Really, really hoping that he is going to be the guy but it is hard to stay positive with this.

 

Post Edited (DJB387) : 3/27/2015 2:51:50 PM (GMT-6)