Posted 4/24/2018 2:37 AM (GMT 0)
Diagnosed with Crohn's about 30 years ago, most of my life been able to manage the symptoms. Recently ~ 6 months ago went to the Caribbean during the power outage to help some friends try to get their life back together. I must have eaten some bad food as my symptoms really flared after getting home, I was experiencing tremendous amounts of gas and bloating, abdominal pain and loose poop. I had diarrhea the first few days then it turned into my normal, what I can only describe as, homemade peanut butter poop; I would go only once a day but it all literally fell out of me, it was a sticky mess and I was completely emptied and had no energy after going. My butt would hurt until I could get to the shower. I made appointment(s) with my GI, PA at first, and they did a bunch of testing for parasites and whatever else they do and everything came back normal. When I finally saw the Dr. he offered to put me on Prednisone and 6MP, which I have been on before. This concerned me as my white count was fine and my last 2 colonoscopy's showed no inflammation. I declined his offer, after doing a bunch of reading on the effect of an antibiotic cocktail I asked to try it as the treatment seemed merited to my symptoms. They said no, I was so desperate that I tried to order from overseas but could not get my CC to approve the transaction. My Dr.'s office now uses an on-line system so I can check my appointments, see test results etc.; one feature is being able to message my Dr., (probably not actually him but someone reads it). I wrote a pretty angry message, all true, about the symptoms now affecting my quality of life, having so much putrid gas, (which can be fun at times, but gets old fast), I was at the point that no one at work would come near me, I don't blame them, I didn't feel comfortable dating, I was turning into a smelly hermit. This somehow hit a nerve with them and they gave me a 14 day prescription to Xifaxan. Of course I didn't find out about it until the night before I was going out of town for a week so had to wait. Anyway that is my back story, I kept a daily log of the prescription and would like to share it.
3/25/18 - Started my first dose around noon, second at bedtime.
3/26 - Right away noticed that my gas did not have the strong odor it usually had, had a raging headache all day, took some aspirin and at one point took a Tylenol it was so bad, poop was the same, sticky and messy.
3/27 - Still having lots of gas, but it doesn't smell, (at least to me), pooped and for the first time that I can remember, at least a year, when I wiped there was nothing there Woo Hoo. Had a headache after lunch for the rest of the day, took an aspirin. Although there is quite a bit of gas the cramping is less.
3/28 - Did not sleep much, had gas all night, no odor though. Pooped what seemed like a large amount. even for me, a little messy, however I had to push to get started, what's that? I really can't remember the last time that happened. I noticed that when I got home from work I didn't have to run to the shower to get cleaned up, I don't know how else to describe it except that it seems less acidic, although not clean, my butt doesn't hurt and/or itch. Little headache at night.
3/29 - Another night of not sleeping well, lots of gas, some odor. Pooped ok, 2 wipes and clean, who knew? No headache today.
3/30 - Setback, pooped early then later had the urge to go again and it was very loose and smelly. No gas to speak of today except a little late, before bed.
3/31 - Pooped clean today, some gas no odor. Little bit of a headache most of the day.
4/1 - Pooped in the morning, a little messy but not sticky, (Isn't this just lovely?). Made the mistake of eating some raw onions today, gave me some pretty good, smelly gas. No headache.
4/2 - Bad night for sleep again, pooped messy, sticky, did not feel very good at all, didn't really eat much today.
4/3 - Good day today, pooped after lunch which is unusual, small amount of gas with no odor.
4/4 - Great day, pooped pellets today, felt like celebrating, who can I tell? Limited gas no smell.
4/5 - Another good day, pooped early but was pretty clean, didn't bother me during the day and was on my feet walking most of the day. Gas in the afternoon but there were roasted peppers on my sandwich at lunch, so no surprise there. No odor though.
4/6 - Skied today, pooped at the hill, it was all good. Don't think I would have risked it before. Some gas, not bad.
4/7 - Last full day of meds, one dose tomorrow. Pooped in the morning, not good, messy. No gas today.
4/8 - Pooped well today, gassy in the afternoon, no odor.
4/9 - Loose poop today, but was able to wipe clean. Gassy at night, no odor.
4/10 - Setback, the urge to go woke me up went ok, got to work and had to go again, diarrhea. Felt totally wiped out, lower left gut aches, took an Imodium. No gas today. Didn't eat much of anything until later in the day, had to force something down; I actually felt better after eating, that's new.
4/11 - Felt much better today, pooped a small amount late in the day and it was clean. Small amount of gas.
4/12 - Another good day, pooped clean, small amount of gas in the afternoon.
Till today - It has been pretty much the same since then, clean BM's some gas but no real smell to it.
This prescription has been fantastic for me, I was concerned when I picked it up as there was no co-pay, they are giving it away, hmmm? Anyone have any insight into that? Anyway I am happy it's working for me, lets hope it lasts. I have and appointment in a few weeks with the Dr. to discuss my results.
You must advocate for yourself, do not give in, be persistent, make them listen.