What's the ONE thing you wish someone had told you when you were first diagnosed?

Hi all,

As part of my master's in design work I've decided to create a "starter kit" for UC patients. Many patients aren't given any literature at the time of diagnosis, and are left to sift through the Internet or CCFA resources.

My goal is to create a cohesive, accessible printed guide to communicate some vital information about the disease, as well point people to great resources like HealingWell.

So my question for you,

What's the ONE thing you wish someone had told you when you were first diagnosed?

Thanks!

Thanks, Red! That's a great resource.

My doctor was pretty thorough. Also, I'd already done a fair amount of reading about UC before I was offically diagnosed, because he had mentioned it was possible I had it when we were doing all of the testing to rule out other causes for my symptoms. So I already knew a lot about it. I sort of wish he'd immediatley prescribed mesalamine enemas, but I started those the next week (after learning about them on here), so that wasn't that big of a deal.

I would say that it would have been nice to hear that chances were pretty good I'd be well-controlled with meds, but I understand that's not a promise a GI wants to make.

I was just sent home from the colonoscopy with some pictures and a note written in the margin "looks like ulcerative colitis. pancolitis with focal sparing"

I was even unsure about scheduling a followup appointment or with who - my primary that had ordered the scoping, or the GI I had met for 5 minutes that morning, who had presumably written the note.

I eventually sorted out that the GI would treat me, and got some prescriptions phoned in, and got a first-available appointment for about a week later.

So yes, I wish I had been told a lot more. I would have liked an info packet that described exactly what UC was (and was not, e.g., result of nerves). I guess it is difficult to give exact information since I did not even have an official diagnosis of idiopathic UC until after I met with the GI and he did some other tests (e.g., rule out c-diff). Still, explaining that 1) UC was one type of IBD, that 2) further steps would be taken to indicate exactly what type of UC (or even IBD) I had, 3) that this was likely chronic lifelong issue, and 4) that finding the right treatment usually involved working through a list of increasingly stronger drugs and therapies, and 5) some lists of books and online resources that might be useful for me or my family.


IF I had to pick the ONE thing, I guess it would have to be some understanding of autoimmune - all I knew was that I had ulcerations.

Post Edited (DBwithUC) : 3/8/2012 3:59:57 PM (GMT-7)

Gastroenterologists are not gods. They make mistakes and do stupid things and botch colonoscopies, and they don't necessarily give a darn. They were already as busy as they needed to be when you showed up. Educate yourself. Defend yourself. Speak up. If they're arrogant jerks, fire them. Make use of the ratemds site. That can pay off big time. Did for me.

lol@ darn :o)

Maybe a list of meds and alternatives that show the protocol and progression in which there used...disease severity and flares.

My GI did a good job of explaining what type of UC I had when he diagnosed me. He prescribed Lialda and told me it had the possibility of being Crohn's.

I wish he would have told me what to expect when a flare started and to contact his office immediately. I waited far too long before contacting his office when I first started flaring.

If I didn't get the GI that I have now originally...I would have gotten the other who told me (when I had to see him when my doc wasn't there) that he would have put me on prednisone immediately than wasting the time with the oral/rectal mesalamine.

UHhhh, mmmmm, well, your treatment and experience will ONLY DEPEND on the doctor and his/her philosophy of treatment.

Being proactive in one's care is a must....and I don't think that doing research via books, internet, personal interaction or sifting through information is a bad thing.  Information today is at our very fingertips...the information is endless.  Sifting allows one to form questions to ask the doctor on subsequent visits about treatment, etc...ultimately to get a better understanding of the disease itself..

I would suggest to ALWAYS GET COPIES of biopsies and blood tests.

Ulcerative colitis isn't diagnosed visually...it's suspected.  A process of elimination should be done with testing/biopsies, etc.  

Colitis doesn't mean ulcerative colitis.

q

I really wish that they would have told me how big of a deal this disease can be, and not make it sound like it was no big deal. I got the impression that I would just have to take some 5-asa and all would be well. I had no idea the severity, scope of the disease, nor that it was life long. Thank goodness for Google!

bananagirl said...
I would say "Try fecal transplant first before any medical treatment!"

Although I have never done it, I talk to so many people who have cured themselves and I just wish I knew it was that easy when I was first diagnosed.

I just do not know how to take this. There is a very high success rate for c-diff colitis, but even FT advocated like Dr. Broady say the results are uncertain for UC, and when it does work seems to take multiple doses and possibly a maintenance schedule.

How could you have spoken with "so many people" if Broady seems to have seen lower rates of success? Are You talking to c-diff people? Confusing c-diff colitis and idiopathic UC?

I really wish some one would have told me how serious this disease is and how much it would affect me. I had to figure out a lot on my own. I didn't even know it was an auto-immune disease until 3 or 4 years after I had the disease. When I was first diagnosed I was not in a flare and was considered "mild" so I didn't really think much about it. In fact, now a days I wish I could go back to that because now I am considered "severe". So I wish someone would have told me that the severity of the disease could change.

These days, I am researching a lot on my own about the different medicines that are out there to try. My doctor wanted to put me on 6mp or remicade but my blood results came back "intermediate" and therefore, I may not be a good candidate for these types of drugs. I wish someone could have told me about all of the different types of drugs that people use who have UC and their side effects.

But what I wish most, was that there was a complete cure for all of us that someone could have told me about that didn't involve surgery. Of course, the cure needs to be created first though...


________________________________________________
10+ years of Ulcerative Colitis
Diagnosed at age 17
Currently taking Lialda 4x/day, Mesalima Enemas every other night, fish oil pills, probiotic, multivitamin, and B-Complex vitamins.
Coming out of a recent flare that lasted 3 months (wish me luck!)

OH YEA...AND HOW TIRED I WOULD FEEL ALL THE TIME!!!!!!!!!!!!!!!!!! I wish someone would have told me that to because I feel lazy but I just don't have the energy to do the things I used to when my disease wasn't as bad.
________________________________________________
10+ years of Ulcerative Colitis
Diagnosed at age 17
Currently taking Lialda 4x/day, Mesalima Enemas every other night, fish oil pills, probiotic, multivitamin, and B-Complex vitamins.
Coming out of a recent flare that lasted 3 months (wish me luck!)

That it's only temporary :_(