October 20, 2009
I love the peace of mornings. I've got my coffee by my side, Django is laying on the floor and I can hear the rhythm of his breathing. The back door is open (as we often leave it in the morning so Django can come and go as he pleases) and I can hear the fountain in our backyard and the wind chime dancing around. I still feel heavy with sleep and a bit disturbed by my dream last night. Every single night I have incredibly vivid dreams. So vivid that I have a hard time knowing if I actually had certain conversations with people or not. Hopefully when my coffee kicks in I can shake all that off.
I have a GI appointment with Dr. G coming up in a couple of weeks here. Already I'm compiling my list of questions. I tend to get pretty anxious before those appointments, though I think as time has gone by that reaction has lessened. At my last appointment with him we talked about the Cipro I take. He said that if it was helping me then taking it long term was okay by him. He said that ideally taking 250 mg of it a day would be a good therapeutic level to shoot for instead of the 1000 I take. I've tried to go off it a number of times with dreams of being able to be pregnant but that just didn't work. I got too sick. But the last few days I've tried to decrease my amount to 500 mg and I'm noticing an increase in my bowel movements already and that they are more diarrhea-like than when I'm taking the 1000 mg. I hope that's okay.
I just now remembered part of my dream from last night. There were a number of women around me who told me they were pregnant and I broke down weeping when they told me. Everyone looked at me like I was some heartless person, but I couldn't help it.
I don't know what to do with what I'm feeling right now. I don't know how to cope. I so desperately want to be mothering a child. I don't know how long I'm going to have to wait, and I don't know how to reconcile that in my mind. I don't want to deny the desire and pretend that it isn't there. I keep saying, "I'm just going to have to learn patience," but those are just words to me. I don't really know what that means. It could be years. We could be waiting years for a little one. What am I going to do with myself?
I was telling one of my friends that it would be so much easier for me if I were to be told, "You have to go to this class one day a week until you get your baby." I would go to that class religiously for years and it would help me. I would feel like I was doing something. But there is nothing I can do right now. Nothing (that I can think of anyway). I feel so helpless. So incredibly helpless. I have no control. And damn it all, I'm tired of not having control (or at least the illusion of control!).
But this is my lesson, is it not? To be content when I am helpless? To be at peace when I feel desire so deeply? Yeah. And for now I feel like I'm at the whimsy of the universe. I guess I'll keep trying to learn these lessons though. At least it's something to do!!
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Re: the Cipro @ 1000mgs and diarrhea. I think many j-pouchers are given the expectation that eventually the small intestine will adjust and compensate for not having a large intestine (I know I was) and they expect their bowel movements to be like or at least similar to how they were prior to the colectomy. And this is a disservice because those expectations are false.
ReplyDeleteIs it that once you start to lower your dose of Cipro that you really have pouchitis or is it just that your stool is less formed than while on Cipro? I'm a long-term j-poucher and once I figured out that my poop was going to be watery for the rest of my life -- that's NORMAL when you don't have a large intestine to re-absorb the water -- I started to understand that things were working exactly as they should. It is perfectly normal for a j-poucher to have VERY watery poops (mine are mostly like water) but you must compensate by either eating bulking foods or drinking more water to keep from getting dehydrated and it is normal to go 7-9 times a day, but hopefully less. The "average" is 5 - 7 times per day and once per night, but like anything, some people will go a few less and some will go a few more, and it will change with your hormones during your monthly cycle and with the foods you eat. It doesn't necessarily mean that your j-pouch isn't working correctly or that you have pouchitis.
Does your doctor see inflammation when scoping you? That should be the hallmark of pouchitis rather than just watery and more frequent poops. Inflammation as seen during a scope, bleeding of the rectal cuff, fever, elevated white blood cell count, elevated SED rate, elevated CR-P level -- these can all be related to pouchitis. I'm wondering if in fact you really have pouchitis -- totally possible -- or if the expectations for what is normal need to be realigned.
As for pregnancy, there are other meds you can use besides Cipro that are considered safe or safer than Cipro during pregnancy, especially foams and rectal suspensions (enemas) that could see you though until it would be safe to use Cipro again.
I'm just trying to determine if in fact you really have chronic pouchitis, as it really is rare (but possible) to have it all the time. Early on, I thought I was going to be in that "chronic pouchitis" camp, but I was just misinformed as to what was normal. It wasn't until my GI asked me why I was bothering with BRAT diet, eating fiber bars, taking Immodium, Lomotil and still complaining that my poop was watery and not formed. I didn't realize that it wasn't ever going to be formed again, as the surgeon's nurse had implied by saying the small intestine would eventually learn a new job and pick up the slack of where the large intestine left off. That's just not true. I don't have a large intestine anymore, so I shouldn't expect anything formed. I had also read what everyone else on j-pouch support sites had been saying -- the quest for solid poop! Later I realized that slowing it down and thickening it was doing a disservice to me, as it would then sit in my pouch -- small intestine tissue that isn't meant to be used as a storage device and has a very fast transit time -- which was causing an overgrowth of bacteria and creating pouchitis. Now that I don't slow it or thicken it -- it is out of me as soon as possible, I have less bacteria overgrowth and no more pouchitis.
I'm curious as to your answers -- please post them if you don't mind.
Many good wishes to you, Abby.
I had one biopsy that confirmed pouchitis which is what started me on Cipro. Whenever I stop taking it the same symptoms start again. The symptoms aren't just diarrhea-consistency in bowel movements. They are also an increased frequency (from going once every three+ hours to once every hour to hour and a half - including throughout the night), increased urgency, this type of bearing down feeling accompanying the bowel movements, and a general sick feeling where it's hard to even get out of bed. My bowel movements on Cipro aren't as they were "before." They aren't fully formed, though they are definitely more formed than when I'm off the Cipro. It's like water going through me when I'm off the Cipro. I also had a biopsy confirm that I had cuffitis, so I currently do nightly enemas to treat that. When I stop the enemas I bleed. When I stop the Cipro but do the enemas, I don't bleed.
ReplyDeleteI totally understand what you're saying though. And I will talk with Dr. G at my next appointment (Nov. 2nd) about the importance of confirming whether this in fact chronic pouchitis we are treating or not. I have to say, I think I was given a pretty accurate description of what to expect when I had my surgery. I wasn't told that my system would ever get back to what it was before. I was told I would probably always have diarrhea type bowel movements, but that over time they might thicken somewhat - which they have. And I was told the frequency would slow down too and that I might get to 4-6 a day - which I'm still a little over, but it has definitely gotten better in this year that has passed since my j-pouch surgery. But I'm still not even a year post take-down yet either. So maybe I'll just keep getting better! Right?! Thanks so much for your concern and input. I greatly appreciate it.