Intro - My Story, Your Opinions Please

A current flareup has me spending a lot of time on the Internet researching my options. Here is a quick recap of my story, treatment history, and current situation.

I was diagnosed with UC in the Spring of 2003 while in college. I was first placed on Asacol. I was then switched to Colozal. I had mild-moderate flareups every few months, sometimes lasting for several months at a time. I was placed on Prednisone for any of the flareups I had.

Last year (Spring 2008) I had a moderate flareup that proved to be difficult to get into remission but after a couple of months of steroids, things finally improved.

Beginning in January of this year (2009), I was hit with a moderate flareup (diahrhea, blood, urgency to go, etc). Prednisone seemed to help at first but eventually proved ineffective. I was switched over to Apriso in the Spring from Colozal. During all of this time, I had been working out a lot, had plenty of energy, but had the nuisance of the flareup (I recently learned I was anemic the entire time - nurses all surprised I was running 5K and 10K races, still having energy left over).

Then things took a turn for the worse. I had a colonoscopy in mid-June. I immediately began losing sleep - waking up 3-5 times a night with extreme urgency to go, TONS of blood with every BM. By the start of July, I was extremely anemic, run down, no longer had energy to workout, and was not getting sleep. My doctor advised I go to the hospital, so that's what I did. A "few days" quickly turned into 13. While in the hospital I was on high dose of IV steroids (nothing else for UC) initially. On low residue diet. Things were looking good - reduced # BM's, a lot less blood. We attempted to switch me to oral Prednisone. No go. So back to IV, another colonoscopy. No improvement seen compared to June scoping. Weigh pro's and con's - begin low dose Remicade and Imuran. Initial response is good. Go ahead with second low dose (equals to full dose when combined with first) of Remicade. Switched back to 60 mg Prednisone orally. Down to 1-2 BM's a day, no blood. Released from hospital 20 lbs lighter than entering (yikes).

Out of hospital I was to remain on 60 mg Prednisone + Imuran, plus Os-Cal to help with bones from all the steroids.

The first week, everything looked promising. I stuck to low residue diet (and as a note I still am the best I can). After 4 days, flare begins to return. Stick to taper to 50 mg Prednisone. Still having a lot of issues (but thankfully not affecting sleep or ability to work). Doctor says surgery is only option left and says it is the route he recommends. Seeking appointment for consultation of second opinion. Finally, after bringing it up with doctor, go on Florastor probiotic.

We are now starting the 5th week since the hospital. I am down to 40 mg Prednisone. SOMETHING is helping. I am not sure what, but I am down to 2-3 BM's a day. No blood 2/3-3/4 of the time. Very little blood (seems to be rectum only) the other times. On a side note, I am drinking one cup of decaf green tea daily and trying to limit my sugar intake (hard to do on the low residue compared to high fiber, high protein diet I followed while running).

I am going to a CCFA info event on surgery and medications on August 29th in Columbus, GA. My doctor is presently working on getting me in to a surgeon to discuss the surgical option. I have blood work tomorrow to see how the anemia is doing.

So, I am having a difficult time deciding what to do. Obviously, if things keep progressing in the positive direction, I am very reluctant to consider surgery. However, the "dangers" of Imuran and Remicade concern me. I also worry what will happen when I slowly ease back in to a normal diet (I am a runner, so I eat healthily and have read up on some diet items to avoid - I have already avoided nuts and I take Lactaid since I am lactose intolerant). True, surgery is the only cure for UC. But I don't know what true remission is like, how hard it will be to maintain, etc. I am far more involved in my health right now than I have ever been, so I am researching everything and seeking advice. I am going to that CCFA event and I have located & emailed my local CCFA support group to find out about their next meeting.

I am not sure if the probiotics are helping and if so, what about other supplements (Omega-3, Flax Seed Oil), etc?

Wow, so sorry for the long post, but that's my story. If there is anything your GI doctor has had you do that has worked that you think I should discuss with mine, please let me know. Also let me know about the supplements you've had luck with. And surgery or give Remicade/Imuran a little more time?

Thanks in advance for your input!

Thanks, quincy.

I have always been on Rowasa (or similar) suppositories during flareups. Surprisingly I am not on any at this time - I think I may ask the doctor about that today as it is a good point. They had me on a steroid (not mesalamine based) suppository to try for a week (2nd week out of hospital when things got worse). It did not seem to offer any improvement.

In my early diagnosis, it was the lower/left-side colon and rectum. More recent scopings have indicated it has gone up a good bit higher based in inflammation they saw.

Honestly, I feel exercise has always done the opposite for me in a flareup. It is almost as if my body focuses on rebuilding the broken down muscles instead of attacking the colon. It is this odd reaction/observation that makes me wish I had done medical school at times.

I used to use Syntha 6 protein supplement when I was working out, which is a great protein supplement and also has a high amount of soluble fiber. I would also take Benefiber twice daily. Once I get the clear to leave the low-residue diet and begin "taxing" my colon a bit more, I will resume some form of fiber supplement. Since most of the protein supplements are also higher in fiber, I am avoiding them at present. I know Ensure is an option, but being a young adult male, I do not want to be ingesting a bunch of soy protein, especially when my testosterone production is already reduced thanks to me not being active and working out. If anyone knows of a good protein supplement that is "safe" for a low residue diet that is whey/casein protein based, please do let me know (preferably low in sugar and not awful tasting lol).

Thanks.

Yeah, the thought of being able to live a "normal" life without medications is tempting for the surgery. But since they cannot guarantee a successful j-pouch surgery, the thought of being in my mid-20's trying to date and be active in sports with a permanent ostomy bag freaks me out. That being said, my age and overall health are supposedly good things when it comes to the success of the surgery. Still though, 5-6 BM's a day after surgery is higher than I am seeing now that this flareup appears to be getting under control. It is a lot to process and hard to weigh the pro's and con's. A lot easier when the flareup was bad and showed no signs of hope - surgery seemed like light at end of tunnel. Now, it seems so permanent and risky. Not that the medications don't pose their own risk.

And I know what you mean - I have literally asked about bathroom locations when I haven't needed it. Always planning, knowing how I can excuse myself from a meeting or whatever if it hits me. Not a healthy mental state to be in all the time!

I see from your signature that you did a food sensitivity test. I am thinking about this (doctor had checked blood reaction to gluten and some others apparently in the past though). I see my primary care doctor in two weeks and intend to see if he can get me setup to be checked (I feel like it would be better to go through him since I am doing so much else through GI doctor right now).

Definitely ask for success rates.

Also, diet-wise: even when you're 'normal' you'll probably have foods that still bother you. For example, I can't really have caffiene unless I want to suffer the next day, and whole grains that are too heavy in fiber are pretty hard on me (but I can handle fruits and veg fine). Just keep an eye on what you eat and how you feel the next few days. You can use foods that color stool, such as beets or spinach, to determine the transit time through your GI tract, and then use that to determine how long it'll take for the food to affect your colon. Average is 1-3 days.

just to add uc_man....suppositories aren't really the best treatment option....the retention enemas are what you should have been prescribed.

q

I just picked up the best locally available option I could find for Omega 3 fish oil supplement at Walgreens. I'll consider ordering something "better" online at some point down the line possibly.

As for the diet, I have already been keeping a log of whenever I try something "new" (even on this low residue diet) and watching for a few days to see how things go. As I am allowed to progress back into a "normal" diet I'll continue doing the same. From experience, nuts and raw veggies are a no go. I've read a bunch of diet information (and reading a book now - forget the name) on what to avoid, what nutrients we lack during flareups and other times, etc. Very informative. I know nothing is a miracle fix sadly but if the medications can get me to remission I am willing to tweak my diet to keep me there.

quincy: I was mostly on the Rowasa enemas during flareups but suppositories when tapering off as a flareup got into control or on an "as-needed" basis. It is hard to keep track of everything and repeat it all accurately sometimes.

Yeah it does concern me. First I want to hear what the surgeon says and get the info from the CCFA event. Then I will definitely be wanting to talk to people who have had the surgery.

Well, I don't think fish oil is going to get you anywhere with your case. I can't believe that all that pred isn't clearing you up, it's an unsustainable dose in any case. Rather scandalous that you weren't already on a Imuran/6MP, in my opinion. For me, it had half its effect after four weeks and the rest in three months total. That being said, I don't know if it will take your symptoms low enough. I guess give the Remicade+Imunan three months? if can't get the steriods at least to ___(20mg?), it'd have to be surgery. Just IMO.