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Can flares start from anywhere in the colon?

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Ulcerative Colitis
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Posted 2/10/2013 4:12 PM (GMT 0)
Hi everyone,
I'm on a role, a lot of questions. Sorry! Once you achieve remission and when and if you experience another flare, does that inflammation start from the bottom(rectum) and possibly progress up or can the inflammation occur anywhere in the colon? I know that this disease is so unpredictable and everyone has different experieces. In my case, I started of with proctisis (10 years) then just recently dx with pan colitis. I do believe that are cells have memory. I guess the other question I am asking, once remission is achieved(keeping fingers crossed) will I possibly be able to keep it in control again with asacol and enemas, or does it just depend where the flares start? I hope I am making sense. Lol. Thank you again. Cindy
Note: my doctor is the one that has me currently on everything. Including remicade. Very aggressive approach. He believes in starting from the top and working down the scale once remission is achieved for at least 6 months. However if remicade. Works for me he does not want me to stop because of the. Risk if I should need it again it may not work. I believe that he knows what he is doing, just concerned that I didn't have the chance to try other lifestyle changes before he hit me with the big guns!
Posted 2/10/2013 4:26 PM (GMT 0)
Hi Cindy,

I am sorry you're in this tough situation. I believe flares always start in the rectum and you can have a flare up that doesn't involve the entire colon even if you have pancolitis. I haven't had any luck with lifestyle changes but a lot of people do so I can understand wanting to give them a try. It sounds like your GI is doing everything by the book, with the exception of starting from the top, some go this route and others do not but it's a common way to treat this illness these days. In my opinion, it depends how you're feeling (are your symptoms improving?). It sounds like you've already started Remicade? If so, I agree with your GI, stopping it may make it ineffective in the future, and as you know, beyond remicade, there are not too many options. Humira, some clinical trials and surgery. The question you have to ask yourself is if you're ready to accept that you're going to move on to those options if you stop Remicade and you're unable to get into remission with lifestyle changes.

I deleted your duplicate posts. I hope you don't mind...
Posted 2/10/2013 5:57 PM (GMT 0)
Hi notsosicklygirl, thanks for the help regarding posting! I'm such a dork! I guess I'm just worried about long term effects of heavy medication. Fortunately,(as of yet) I have never suffered any real discomfort. Just had bloody stoole. Was hoping to at least trying to prolong the heavy guns. I will be attending a conference in MN With CCFA. I'm hoping to gain some inspiration and hopefully some Positive prospects to look forward to in the near future. Cindy
Posted 2/10/2013 6:24 PM (GMT 0)
What meds are you on currently? And i think it usually starts wherever (different for everyone) and will start where it usually starts for you. But again who knows, it may get bored and start on the other side for the heck of it.
Posted 2/10/2013 8:01 PM (GMT 0)
Hi madcat25, lol. My doctor hit me with everything...his approach seems to be quite different.
Current meds: 2 anti biotics(will be done in one week), prednisone 40 mg ( tapering in two weeks), azathropine 75 mg, remicade (first infusion 2 weeks ago, second this week). Goal is to work from the top down to eventually have me on remicade only. Cindy
Posted 2/11/2013 11:29 PM (GMT 0)
Personally, I think this approach is a wrong approach. I will detail soon.

To your first question, in my own observation, my flare always starts away from the rectum. Last week, I checked all my records since my diagnosis of proctitis and I noticed, every colonoscopy shows that my rectum and majority of sigmoid was just fine (except at the time of proctitis Dx and some time around). All the inflammation observed was in descending colon. Everybody's UC is different so this may not be the case with you..

Now to meds approach, I honestly do not think that just because you are in a bad flare, you should just hit a big gun. There are really a lot of medications, Colazal works like charm, unless you are sensitive to sulpha drugs or for any other issue. It will take lot longer to get your flare under control, compared to Remicade but you are on Prednisone as well. I really don't understand how these GI think that Remicade is better all the time. Eventually, it will stop working and then what they gonna do? go under the knife? The probability of Humira working after Remicade is not that high. I am sure in next 4 to 5 years, Cimzia, Enebrel, Simponi all will try to get FDA approval for its use for IBD but they are just cousins. Once you become sensitive to Advil, you are sensitive to all NSAIDs. Same analogy here as well. I don't intend to scare you, just read the posts here, there are so many folks posting about Remicade or Humira stopped working. I am not too sure you can go to Colazal then. My GI asked me Remicade a couple of times but I told her, its my rainy day medication. I will exhaust every option I have to keep my flare and UC under control with other medications before touching to Remicade. Now that you are already on Remicade, you can not really do much about it but ask some tough questions to your GI next time you see him.
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