You ever have your GI tell you ,you were the worse case of UC he has ever seen

Hello

Went to the DR today ....he wants to schedule a colonospy in about 2 months ...and told me last one i had which was May 2007 ....which he told me that i was the worse case of UC he has ever seen ...and he is no spring chicken have any of you ever been told this ....or do you think he is trying to scare me !!!!

I don't think he's trying to scare you. My doctor is very frank with me, too. Mine has said I have an extremely stubborn case, but never said the worst. Every time he looks in my rectum, he looks as though he is going to start pulling his hair out, not a good sign... I hope you have improved by now, and if not, maybe you should look into the stronger meds, if you are that bad, it is important to start improving. I kind of let myself go, got off my meds and thought I wasn't that bad, turns out I quickly got so bad that I was risking getting a fistula and my GI said if I got the fistula, I would have to get the illeostomy immediately. Please keep us posted on the results, don't know if in your case I'd want to wait 2 more months though.

Mine has never said that too but has brought up that I'm one of his not so typical patients meaning that I don't respond well to mesalamines plus that I have stubborn flares as well. I don't think he was intentionally trying to scare you, just maybe stating the facts. Maybe it was his way of breaking the ice to the precursor of surgery??? Are you flaring now?

After the colonoscopy that led to my UC diagnosis, the gastro commented that my left-side looked "like raw hamburger". Then I got asked: "Do you want to go to the hospital for a few days?" Of course I didn't-- so the doctor told me to use Cortenemas faithfully-- or else! Thereafter it was never any problem convincing me to take the meds, & , luckily, most of the time they have worked the way they were intended. about a yr after my diagnosis, though, this gastro got a 32 yr-old female patient who could not be similarly helped. Her inflammation had already damaged most of her colon mucosa to the extent that it would not regenerate; she needed several blood transfusions & finally agreed to a colostomy-- very sad outcome. At times I think the doctors give us the sober truth to get compliance, trying to keep us from drifting into a worse state. Then there are tissue changes they encounter unexpectedly in a patient that can shock even them. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

When I came out of my colonoscopy, my GI told me "its such a mess in there, I can't tell where the damage stops and where the healthy tissue begins... I think we can save your colon, but its going to be painful and take a very long time. I think most doctors would recommend surgery."

I don't know if he meant to scare me or not, but it certainly hammered home the seriousness of the situation. Since that time, I have had a number of other GI's tell me surgery is the only option. I told em to get stuffed and went back to the first guy. And you know what? It looks like he has saved my colon. Heading into remission after more then 18 months of flare.

Yes: That's what my doctor told me, that I had the most severe case of UC he'd ever seen. I suspect that he told me that, however, simply to get me to quickly comply with whatever he said. He was a jerk.

Edited: your choice of words......this is a family orientated sight so please don't swear - thank you.

Post Edited By Moderator (Red_34) : 1/28/2008 4:55:33 AM (GMT-7)

I am on my third GI- I do like him, even though he is very busy and sometimes i feel rushed. He did tell me that I have a severe case of UC. He also said that he has seen very few cases like mine that don't end up in surgery.

I have been feeling much better for the past two weeks- hoping we have things under control.

Prednisone- down to 10mg
Remicade- 4th infusion Feb. 7th
6MP- 50 mg
Lialda- 2 tablets twice a day
Rowasa enema- every other day
Protonix- daily
Lexapro
Synthroid

Yes, I was the first UC failure for my GI. He had about 50 UC patients and was always able to get them in remission. I think he felt badly that I had to resort to surgery.

Sue

No, but he did tell me he was extremely surprised at how my disease progressed. He expected me to be one of his lifelong mild cases.

When is it deemed necesary to go to the hospital. I have had UC for 30 yrs but today was the worst I have ever been...couldnt make it to the bathroom...lots of blood too and had a fever all day and not hungry. I dont want to waste anyones time at ER but Im afraid to go out and terrified someone in the house will be in the bathroom when I need to go....too much stress!

My uc was so bad that my potassium level and blood pressure became so low that I was rushed into the hospital and told later that they did not expect me to live. After telling me this my dr. also said that my colon looked like raw hamburger. That's a great description to think about. They put me on 80 mg of prednidsone gradually reducing me to 30, where I am now. I'm still not okay but I do get out and have some sort of a life. I have no idea where this will end up as all the uc meds hurt instead of help me. I will say that on high doses of prednisone my stomach was perfect.....for the first time in my life. I had the best time eating everything.