Am I Just Lucky So Far or is this typical?

I've been reading this forum off and on for years, more so when I was initially diagnosed with UC almost 2 years ago. It seems that almost everyone has had a significantly worse experience than I had. I'm trying to figure out how typical my experience is - am I just lucky, do I have a really good doctor, or possibly misdiagnosed?

I'm a 37 year old male considered to be very healthy for most of my life. Around Feb. 2008 at the age of 35, I began to notice blood in my stool on a regular basis. Having always heard that when this starts happening to always call a doctor I contacted my doctor who sent me directly to a GI for diagnosis. During this time, it started to become diarrhea and the bloodiness and frequency increased with each passing day. Several tests were ran including ultrasounds, CT scans, C-DIF tests and eventually a colonoscopy led to the diagnosis of ulcerative colitis and a C-DIF infection. By this time, my frequency was up around 12 - 15 times a day with a very high blood content. My GI stated that this was one of the worst cases of UC he had ever personally dealt with but that he was "very good at getting UC under control". This guy is a character, but that's for another day.

So the meds began, it took several months to get under control. Started with Lialda, Prednisone and Flagyl, with Azathioprine about a week later. Things weren't getting better, seemed to be getting worse. I was down 15 lbs., very low iron counts in my blood, extremely pale, no energy, was getting a lot of cramping in my hands and legs, and still going 10 times daily. The blood did get under control though. After several weeks of this, the decision was finally made to have me try Remicade and taken off of Azathioprine. Also during this time, I was given mesalamine rectal enemas and ICAR-C to start trying to bring my iron levels back up. After about my third Remicade injection, things seemed to get much better. I did 5 injections total then was taken off of the Remicade and put back on Azathioprine. This was around August of 2008. Final tally 4 months of Hell, 21 pounds lost, and very thinned out hair.

Since then, I have not really had a problem with diarrhea other than occasionally while traveling - for which the GI gave me Symax to use as needed. I continue taking Lialda and Azathioprine daily and get blood tests every three months to monitor the effects of the Aza and my iron counts. All weight was gained back (plus some ), even the hair came back other than normal receding. If anything, I am at the opposite extreme to where I spend more time constipated. If I forget to take my meds on any particular day, then I usually will have a very heavy bowel movement (sometimes diarrhea) fairly soon after. So it would appear to me that the medicine is doing its job.

But overall, this definitely hasn't affected my life in the way it has for most of the people here. I still eat and drink pretty much whatever I want (never was a very healthy eater). Very rarely have the urgent bowel movement. I am just wondering if my results are typical, is it too early to tell? Or am I just lucky so far? By no means am I trying to brag, I'm just really trying to figure out if I'm living through the "calm before the storm" right now. I truly expected this to be much worse than it has been. Hopefully some of you on here can eventually get to the point that I am at.

Any feedback or thoughts is appreciated. Thank you for your time. By all means if there are any questions that I can answer about my experience which might help you, please ask away.

Yeah, that's the other thing I was thinking. The ones that aren't suffering, aren't on here looking for answers. Not actually knowing anyone else that has this forces me to the internet and books to figure things out beyond what my GI tells me. And everything I've read says that I can expect a flare-up every couple of years. So I keep waiting ...

Thanks for your response. I'll still be on here though trying to offer support and help where I can.

As someone who has had UC since 1998, I can tell you that I have personally had some major peaks and valleys with regard to the illness. I am a 31 year old female now and have had at least 6 flare ups in the last 12 years, so that's one approx every two years, though not exactly...as I have had some flare ups last 18 months to 2 years at a time.
I have gone through incredible frustration with one specialist which I have since stopped seeing--this particular DR. told me that I should look on the bright side, when I was incredibly weak and sick and couldn't keep any food or drink down, that I would lose weight when I was by no means overweight and had already lost 15 lbs due to the illness! But that is just an illustration of what I fear many of you face as well...few answers from the medical community...after seeing my new specialist for several years, though he was much more understanding and compassionate, he couldn't offer much that helped me either. I have been on most of the meds mentioned at one time or another, and found little success. 2years ago I sought the help of a Naturopathic Dr. and was put on an antiinflammatory diet (elimination diet) and had results almost instantly 1st week, and was completely better in 6 wks. It's been 2 years since the last flare up, but I didn't remain on the diet and about 3wks ago I began another flare up, started myself on the diet again, and am feeling much better now, not completely healed but the cramps are gone only 3-4 trips to the BR per day instead of 9-10, and not feeling drained and sore. Hope this information offers relief to someone, from someone who understands some of what you've been through, as we all know it's not something you can really explain to someone. Anyway, God Bless. May you all find relief and health.

How people respond to treatment is different for everyone. Some people get diagnosed, try something and boom, they're in remission. Some, like a lot on here try all the meds and have numerous flares.
So it took you roughly 6 months from time of diagnosis to get into remission? I'd say you were kind of 'lucky'. Like you I don't think I ever had severe symptoms, probably more mild to moderate but I was pretty young so it felt like severe. I never saw blood but I did have mucus, urgency, and d. After a year and a half of pure hell I went into remission and have been lucky enough to stay that way (4 years this month). You'll find others on here with different stories. Its definitely not a black and white disease. I try to keep it in the back of my mind that remission might not last forever, but to be prepared if/when it does come back.
lol don't feel bad though, I gained all my weight and then some back too! :)

callalily22 said...
How people respond to treatment is different for everyone. Some people get diagnosed, try something and boom, they're in remission.

I try to keep it in the back of my mind that remission might not last forever, but to be prepared if/when it does come back.

Yes. Like you said, I got diagnosed, took medication, which stopped working, tried fecal transplantation, and boom, I was in remission. My GI says I'm very lucky. I had a very severe flare. My GI says my colon was like dog meat. He could tell this even from just doing an external examination. He couldn't give me a colonoscopy or sigmoidoscopy when I first saw him, because my colon was too inflamed.

I, too, keep in the back of my mind that remission might not last forever. I watch my diet very carefully and take probiotics. Although, being diagnosed with UC has changed my life, so far it's been for the good. I eat much healthier than I ever had in my life. I do hope it lasts, and I never get another flare.

Zogoflax, how did they know you had c-diff, stool culture? I was treated for C-Diff with no cultured evidence. I suffered a long while because a PCP wouldn't refer me to a GI to get scoped.