Hello all. Been lurking on forums on & off for several months, & have found lots of info & much needed boosts to my spirits during that time. I have intended many times, to offer my experiences, but often I just run out of steam. I apologize in advance for the length of this post, but hope others can find common ground & yet others may offer insights or ideas I have not come up with.
Having watched my mother struggle with Crohn's for 30+ years, I was more than familiar with many of the emergent bathroom runs & general symptoms she exhibited. In addition, I have been in medical sales for 14+ years, & conveniently, I started in the OR selling an adhesion barrier for, you guessed it, colorectal surgery. I have seen more colectomies/small bowel resections over the years than I could possibly count. More often than not, patients tend to have UC, Crohn's, or cancer. I have great relationships with many of those surgeons, & consider myself to have a greater knowledge of those diseases & surgical treatment plans.
For most of my now 44 years, I have been fortunate to take little more than Tylenol for headaches, & meds for seasonal allergies. As I mentioned above, Crohn's is in the genes, & also have an aunt with UC. The auto-immune shadow looms larger, though, as one of my children, has Type-1 diabetes, diagnosed when he was 2.
Though you are never prepared, I began to notice small amounts of blood in my stool in the spring of 2013. I initially associated it with the occasional hemorrhoids I got, & usually went away with increased fiber & overall better diet. As it persisted, I visited my family doctor in early June 2013 for my yearly physical & discussed it. We eliminated fecal occult blood test, as colonoscopy was really the only sure thing. I had serious concerns that colon cancer might be culprit, but with my job, I probably had seen too much for my own good.
I made the call to my colorectal friends, & they fast-tracked my colonoscopy appointment for later in the week. Fortunately, I didn't have to agonize over potential diagnoses for too long. The Prep-O-Pik bowel prep wasn't terrible, & was set for scope at 7am. Before I knew it, the Propofol was done, & my surgeon came in with a diagnosis of proctitis. He had felt that was the culprit, but wisely kept silent until afterwards. I was relieved, but little did I guess....
I was prescribed Asacol HD & Canasa supp for 28 days, & follow up visit. (Doing my best on details, as some of my roller coaster ride tends to run together.) Within 5-6 days, my symptoms almost completely went away, & I was nearly normal. After about
3 weeks, this was to be far too short-lived. My symptoms returned, & as would quickly become the norm, each flare became more stubborn & acute.
Fast forward to today, 10/19/14. I have been on & off Prednisone about
4-5 times since original diagnosis, but I would have to research to be certain. Max dosage has been 40mg with tapers to 5mg. As I type, I have 3 more days of 5mg, but alas, I'm once again in the throes of tenesmus, & blood in the stool. I have continued on Asacol HD & dicyclomine 10mg, along with a 2nd try of Uceris 9mg. Once again, I'm trying Canasa supp, when I can hold them, & have previously tried hydrocort acetate supp. As for biologics, I'm a veteran there, too. Humira was tried & failed about
90 days ago, & have just completed the 3rd injection set of Simponi 7 days ago, but sad to report that again, it seems to have failed. I was turfed over to GI from surgeons about
6 months ago, & made sense as I wasn't a surgical candidate. Another colonoscopy is certainly on the horizon, & I suspect that I'm likely proctosigmoiditis now, if not full-blown UC.
I'm certain that I've neglected to mention some therapy along the way. Color me an optimist, though. My biggest complaint is the lack of sleep. I can't remember the last time I slept through the night. It may have been near Christmas last year, but not certain. I did have a couple of nights this month where only one wake up per night, & that is miraculous. I would certainly take normal sleep & could survive other symptoms for most part. That's that optimist in me ;)
As for typical BM's in my day, I would guess well over 20 today, & I don't even feel really bad overall. Needless to say, traveling to hospitals over a 90 mi radius every day is a challenge & can recite every quality rest room facility on any given route like a pro. As with many here, I have no shame there.
Diet is a huge focus, & I eat no tomatoes or seeds of any kind. Obviously spicy foods are a huge no-no. I haven't had a salad in 4 months, & eat almost no raw veg/fruits. I do eat bananas in protein shakes, however. Eating almost always precipitates an immediate need for BM, typically as I finish my meal, but sometimes before I finish.
I hope this doesn't read as total stream of consciousness, as I'm a bit delirious, & constant lack of quality sleep is brutal. I average 3-6 hours a night, with 1-4 interruptions, but 3 is the norm when off of Pred. As a lifelong belly sleeper, adjustments have been necessary. As others have described, left side sleeping is almost always verboten. Usually alternate between back & right side with my subconscious sneaking in some ill-advised stomach sleeping.
Though I'm unsure of next steps in treatment, I'm attempting to stay off Pred for long haul, & am looking at accupuncture (why not?) & gluten-free as possible additions to regimen. I do exercise regularly & am avid tennis player (when UC allows!).
Let me add that my wife is a saint, & completely supportive. Although my children worry, they understand that it typically is a major irritant to me, & are equally supportive. I know they all secretly worry, & probably are even more hopeful for a normal quality of life than even I am.
Feel free to ask any details I have omitted. I'm certain it's far from a complete book report. Thanks to everyone else who has posted their stories. This is cathartic for me, & each day makes me hopeful for a better day than the last
Tried:
-Prednisone, Asacol HD, Dicyclomine, Uceris, Proctofoam, Cort Enema, Humira, Simponi, Canasa supp, hydrocort acetate supp
Current:
-Pred (5mg taper), Asacol HD (800mg x2/2xday), Dicyclomine (10mg/3xday), Canasa supp (1xday)