Hello all - longtime lurker, first post

Hello everybody,

I've been lurking / reading on this site since late 2014 ( not coincidentally when I was diagnosed with UC / Pancolitis ). First off I want to thank everybody who contributes to these forums. I gleaned invaluable information here that I was able to apply with solid results. It was also reassuring to know that I was not the only one suffering from this horrible "disease".

My background: 41 y/o male with no family history of IBD. Experienced my first flare in early spring 2014. I thought I was just sick with some sort of bug, but it was also the first time I had ever noticed blood in my stool. I was alarmed, but decided to give it some time to see if it went away and it did ( I didn't realize how lucky I was then ). Was in remission until early September 2014 when symptoms came back with a vengeance. Severe abdominal pain, up to 20 bloody BM's per day, severe night sweats, recalcitrant acne, fatigue, etc.... By early October 2014 I got in to see a gastro doc, and was very quickly scheduled for my first colonoscopy. I was ( obviously ) severely inflamed and bleeding. Lab work revealed a c-reactive protein level of over 57 ( alarming! ).

Was Rx'd the standard prednisone therapy and experienced the hellish side-effects that many here are already well aware of the worse of which, for me, was intense cystic acne that was incredibly physically and emotionally painful. Tapered down on pred for 10 weeks, and was able to get back into clinical remission by spring 2015. Side note.... follow up flex sigmoidoscopy revealed a tubular adenoma which was promptly removed before undoubtedly turning to cancer.... so in that sense having my first severe flare probably saved my life as I would have otherwise never had flex sig / colonoscopy. I was literally a dead man walking. Funny how that works eh?

So here I sit now 2 weeks into my third flare.... Symptoms are mild right now with 3 to 5 BM's per day some with visible blood and some without. I previously declined immuran and any other type of Rx, and was planning on staying that way hoping that I had left it behind me.... Waiting to see if I can get back into remission on my own without another round of prednisone ( for obvious reasons )... I take VSL3, curcumin, boswelia, omega 3's, gluten / dairy free diet, etc.....

Now here is the most interesting part ( for me at least ) of my 3 known flares.... Each flare has occurred while I've been training at a very high intensity as part of body composition ( transformation ) contests online. 6 day a week training with large calorie deficits designed to rapidly drop body fat. This is the third time I've done it, and this is the third flare I've had. This cannot be a coincidence. I know that stress is acknowledged as a flare trigger almost universally by those of us with UC, and this type of training ( I'm not jogging for 20 mins and lifting a few weights here.... I'm talking super-intense athletic style training that most people can't really fathom engaging in ) is obviously extremely stressful. So it appears that whenever I do this I induce a UC flare.... not fun. I've been reading about oxidative stress and UC as this type of training creates a huge amount of oxidative stress. I've backed off the training, and increased calorie levels to help with recovery and hoping / praying for remission sans prednisone / other pharmaceuticals. Just wanted to share my situation with the group, and again say thank you to all of you who contribute. This place as an invaluable resource when I was first diagnosed, and it's time for me to give back.

I notice you stated that after going into remission and coming off the prednisone, you declined all rx meds hoping "it" was all behind you.

Unfortunately, this is a chronic, lifelong illness with periods of remissions and flares. Most of us cannot maintain a remission being med free. Also, many of us have experienced worsening of flares and disease progression by going off meds as well as having a much harder time controlling the flare when it reoccurs. Were you ever on oral and rectal mesalamines? They are the mildest and safest of the UC drugs. Many maintain long periods of remission on these drugs. Once you find meds that work, it is best to stay on them because as I mentioned, they may not work again once you go off them. It is especially important for you to maintain remission since you had a cancer scare.

the physical stress may be a trigger. or you could have been inflamed all along, and the stress only raised symptoms to your attention. So you could still have been a walking cancer risk. .. Or, it is coincidence. While 3 for 3 is good odds the stress is the cause, it is odds - not proof. There may also be something besides the stress, something that modified you gut microbe distribution, that co-occurs with the physical stress, but could occur in the future in the absence of physical stress.

BUT, you are betting it is the only trigger, and with lower stress you will never flare. That is the logic of you RX-free plan.

I think you should use a mesalamine. Imuran is usually not the 1st step.

It was irresponsible of your doc to use a pred taper without placing some RX in place.

Thanks all for the thoughtful replies. They are appreciated....

-- Dr. did Rx mesalamine / asacol which made things worse. Heavy bleeding
-- I am aware of the chronic, recurring nature of the disease and the danger of long-term inflammation. Blood work and colonoscopy 3 months ago showed no signs of disease / inflammation
-- Made an appt with GI doc today to explore options but come hell or high water I am not going on steroids again so hopefully he can present other options
-- I take 5,000 iu's of Vit D a day normally ( at 10,000 now ) and blood test showed level of 57ng/dl 3 months ago

I'll follow up after I see the doctor in a few weeks. Thanks again!

Welcome to the forum after so much lurking!

I appreciate your not wanting to go back on the dreaded prednisone. I share the feeling, having been on it for nearly 2 years when first diagnosed! And I, too, have resisted Imuran when it has been suggested to me.... but I am likely headed in that direction now. I am going to study (and also talk with my GI) about the risks of inflammation vs the risks of the medications. I realize that I am a few decades older than you and have had the disease for a lot longer, but at this point I am thinking that I need to get serious about reducing the inflammation in my body. I see my GI in a month or so.

Good luck with your Dr. appointment! I am on Uceris, my first oral steroid since about 1988, and so far have not noticed any systemic side effects. So.... there might be other options than pred for you. And I have had good luck with the steroid enemas, at least for the bottom part of the colon. (The mesalamine enemas increased my bleeding also.)

Your findings on oxidative stress sound interesting. Keep us posted!