Confused and don't know what to do

[matty]

confused and don't know what to do

hello everyone. Finally saw surgeon yesterday for follow-up from colonoscopy done april 28th/2011. I asked for a copy of report and he gave me a copy of his report and not pathology one. I'll write some of it. Close to the ileocecal valve a number of small ulcerations were seen, not unlike resolving colitis. The rest of the colon is clear and no polyps, growths or any other abnormalities are present. Final dx: small hiatus hernia. moderate erosive gastritis. small segment of resolving colitis close to the ileocecal valve. I asked him which one he thought and he said maybe crohns colitis. In stomach he said he did not get biopsies tested for ibd but for h pylori, which is said was negative. I asked him for meds and he said i don't need any right now becasue its very mild and i said what if it spreads. He said to treat if it gets worse. I'm so confused, i read to treatit so it wouldn't spread and he says no and have faith in him. He does not come out and say crohns to me but when i asked which one and says looks like crohns. But my family dr. who got his report is telling me mild colitis. I just don't know what to do, insist on treating and maybe seeing a gasto dr. I've rread stories here where it was mild and then turned reallly bad. Please some advice please.

 

[Rebecca85]

Colitis means inflammation of the colon- there are many different causes not all are IBD. 'resolving' colitis sounds like something that is/ will get better on it's own (from an infection or similar). So it sounds like at this point he doesn't think it's IBD (but if it gets worse instead of better then chances are it is, so he will treat you then). Did he definately say 'Crohn's colitis' or is there a chance you misheard and it was some other form of colitis he said?

 

[matty]

yes he did say possibly crohns colitis and yes definitely ibd. I did do a first colonoscopy in 07 and was dx with mild uc. I refused pills at that time because was in denial, but did occasionally use steriod enemas. I'm ready for pills now and they don't want to give me now.

 

[Rebecca85]

Perhaps he figures if you've managed without pills for the last few years, and it hasn't got any worse, then you can manage a bit longer! As for whether it's Crohn's or UC, it's hard to tell the difference and if it's only mild then it will be even harder to tell. But they are treated very similarly anyway.

 

[Rebecca85]

OK I have read back over some of your previous posts. It spunds like you need to go and see a gastro dr, or at least someone with a little bit more knowledge of IBD! For a start, Asacol does not have aspirin in, it has an aspirin-like compound that does not irritate the digestive system, instead it has the opposite effect of reducing and preventing inflammation! Besides, it is coated so that the contents of the pill don't affect the stomach. So there is very little chance that Asacol would make your gastritis or ulcers worse. And it looks like your doctor has left you with many more questions!

 

[littlemissh]

If crohns is mild and settles spontaneously a watch and wait approach is ok as it may be many years before another episode. You should be symptom free before you can be classified in remision with mild crohns not needing treatment.
Gastritis isn't always necessary to treat if you have no symptoms either. I had moderate erosive gastritis on my last upper endoscopy but as I have no symptoms from it , my gastro hasn't given me any meds...fine by me as I only want to take meds if absolutely necessary.
So if you have no symptoms and your colitis is resolving the no treatment may be ok, if you still have symptoms though I would question him about them and ask for another opinion if he feels you should put up with your symptoms and not treat them.
Hope that makes sense.

 

[xJillx]

So if you have no symptoms and your colitis is resolving the no treatment may be ok, if you still have symptoms though I would question him about them and ask for another opinion if he feels you should put up with your symptoms and not treat them.

I second this!!!

 

[matty]

thanks for replies. I do get moderate stomachaches and cramps and occasionally d. Looking back to first dx in 07, i have slightly more pain. I am going to ask family dr. to refer me to a gastro dr. The only thing i hate about it is that he will probably want to do his own colonoscopy and i just did one in april.

 

[social me]

My doc did a colonocopy which showed inflamation so he then had me do an upper GI which showed granulomas on my esphogus and inflamation all through the intestines. That allowed him to fully diagnose me with crohns. See if he can do more testing to find out for sure. I wish you luck. This is a frustrating and confusing diease. You are not alone.