What to do next... ?

I have a specialist's appointment Tuesday morning that will decide what my next step is. Currently I am on prednisone (30mg, tapering 5mg every 4 days) and Salofalk 1000mg nightly. I had a colonoscopy on June 14th and was diagnosed with ulcerative proctitis. I had a sigmoidoscopy this past Wednesday which showed my ulcer is not healing. The good news is that is hasn't spread or gotten worse. The medications I'm on are pretty much maintaining it.

The specialist that did my recent scope suggested Imuran and I told him I want to wait before trying something like that. I also asked if it was possible to use Remicade and then he said Remicade is usually given with Imuran. I want to exhaust all options before opting for Imuran and/or Remicade.

The only supplement I'm taking is L-Glutamine (just started today). I'm 4+ bowel movements with mostly formed stool but blood sometimes comes out leaking or like in rock-shape. The leaking blood is worse in the morning and stops after 1-3 stools.

If you were in my position, what would you do? I'm considering starting up LDN and other alternatives. My dad doesn't like the idea of Remicade because you are required to get it every 6 weeks. My dad and I conflict on treatment and it's really hard on me. I like my dad, of course, but his views on conventional treatment are bias and he favours alternatives while I don't care what I have to take. I just want to get better.

Since I was awake during the sigmoidoscopy I got to ask questions to the specialist. He said surgery shouldn't even be in my mind right now. He told me that I don't want a bag. My thinking was 'no colon, no problem '

Hey Scope. I'm shocked that your doc suggested Imuran that quickly - you've only been diagnosed for barely over a month?? Imuran and Remicade are usually our very last options (other than surgery, of course). There are a lot of other things to try first.

First of all, what dose of prednisone did you start with, and how long were you at that dose? You may have not given it long enough to start working before you started the taper. (I've done 40mgs for three to six weeks before tapering, depending on how my symptoms are doing, though the longer you are on that drug, the craptier the side-effects are.) Also 5mgs every four days is a VERY fast taper. I wouldn't taper any faster than 5mgs per week. I'm not surprised you are still having symptoms.

If you have proctitis, then your colitis is only limited to the bottom few inches of your colon, which means that rectals are definitely your best bet. Is your Salofalk oral or rectal (I know it comes in both)? If you aren't on a mesalamine enema (Salofalk, Rowasa, etc), you should get on one ASAP. Also very helpful: cortifoam - rectal steroids in the form of a foam. I think for proctitis it is even more effective than oral steroids with none of the side-effects.

The combo that got my very first (very stubborn) flare into remission was oral mesalamine (brand name Asacol) 3x/day, nightly mesalamine enemas, and cortifoam in the mornings... and mine was proctosigmoiditis, which means mine went further up than yours does, so I imagine that combo would work well for you. After a few weeks I was able to drop the cortifoam and just do oral and rectal mesalamine.

If rectals don't get it, then you can experiment with other therapies (like LDN, dietary changes, etc). Many people find probiotics helpful.

Remicade and Imuran definitely work great for some people, but they don't always work (between 40-60% effective in clinical studies, actually), and many of us try them and find that our bodies cannot tolerate one or both. (We have a really bad reaction to the drug.) Oh, and do not believe your doctor when he says Remicade is only given with Imuran. Many people (including myself) have been on Remi without the Imuran. In fact, when you combine them is when the side-effects are the most dangerous.

Most importantly, make sure you are happy with your GI doctor. To me it doesn't really sound like your current one knows his stuff, so I would try going to a different doc if I were you.

Good luck!!

Wow, Remicade was the last thing I tried. I started off with Asacol, then prednisone then back to all the different 5ASA's then prednisone again, then 6mp, cyclosporine (which I DO NOT recommend) acupuncture, diets, I'm sure I'm forgetting something, THEN Remicade. Those drugs should be your last resort because you are newly diagnosed.

I wasn't terrible before the prednisone, that's for sure. The concern was that the enemas weren't being retained and when they were, there was such a minimal amount of fluid I was able to put in that the enemas just weren't going to work out. I don't have urgency, when I feel like I need to go, then I can go. Never had a problem with holding it in. Sometimes it feels like it in the morning but it's mostly just gas. I guess I do need to give the medications more time... I just want to see some improvement though, in the next few weeks. I never had these many problems before my diagnoses, which is what troubles me. Before my diagnoses, I had mild lower abdominal cramps with blood on stool and paper. Now, blood drips in, there's more gas, and of course, the lovely side effects of prednisone.

I want to exhaust all options before remicade. Would LDN be the best first step into the world of alternatives?

This is the doctor I will be seeing Tuesday morning, http://www.zanecohencentre.com/physicians/gordon-r-greenberg

With all that published work on biologics, I don't think LDN will get much praise :|

Zane Cohen is supposed to be an amazing colorectal surgeon. I cannot imagine him having a bad surgeon in his practice. Are you close to his office in Toronto?

The hospital is about 40mins drive.

I havent asked about Asacol. i havent really asked about many medications. im going to make a list before my appt to make sure i clear some things up.