This will be a Too-Much-Information post. Those of you who don't want to know the gorey details might want to skip on down to the next post.
It has been a while since I talked about all my bathroom issues so I thought I would fill everyone in since I'm sure this is a subject you are all just dying to hear more about.
Since I last wrote, there have been lots more tests done. Countless vials of blood and stool samples later - still no idea what's going on. So, the next step was to scope me. They did a colonoscopy and an upper GI endoscopy. The good news is that everything looks fine. The bad news - still no idea what's going on. Interesting side note (and anyone who's had a colonoscopy should appreciate this): Before a colonoscopy, you have to drink this stuff to clean you out. I had heard from people who had had this that the diarrhea is pretty bad. I was really dreading that because I have diarrhea on a good day so I thought this was going to be insane. But, my body didn't react to it like it does to food so there wasn't an additive effect. It was actually WAY better than what I was used to. My doctor said I was the first patient he'd ever had to be happy with the effects of colon prep.
Anyway, since we still don't know what's going on, I officially have irritable bowel syndrome. I really hate this diagnosis on many levels. First of all, a syndrome isn't much of a diagnosis. It is just a collection of observed unexplained symptoms. It means they don't know what is causing it. IBS in particular is even more meaningless as a diagnosis because almost any physical problem down to just being stressed can cause intestinal issues. So unlike say, restless leg syndrome where they don't know what's going on, but it is odd enough that it is most likely the same (albeit unknown) root cause for everyone who has it -- there are no doubt a myriad of root causes among those diagnosed with IBS. Basically, I went to a doctor saying that I had cramps and diarrhea and was told that I had cramps and diarrhea. Lastly, I feel like we sort of do know a cause (the surgery) even though we don't understand how that resulted the mad diarrhea.
That said, Mike found a paper on IBS that sounds a lot like me. They did this study where they measured the gastrointestinal reflect in IBS patients and controls. Normally, when food hits your stomach (and before it gets to your intestines), your intestines start their calm, controlled peristalsis motions which push everything along. In some IBS patients, this normal response was amplified such that their intestines just went crazy. The contractions were stronger and more erratic that normal. Again, still no idea why - but boy does that sound familiar. In fact (and I apologize for the mental image here) I have seen food come out of me less than an hour after eating. At speeds like that - no wonder the process hurts.
The good news is that I am doing better. First of all, as a rule of thumb, I get better as the day goes on. I usually only get really sick after breakfast. After lunch is much better and I'm often fine with dinner. Also, we are trying to manage the symptoms even though we don't know the cause. So, I'm trying different drugs aimed at dampening the muscle or nerve responses along my GI tract. Some have done nothing, some have helped, but we are still looking for that silver bullet that will make things totally better. Realistically, that may never come - but I am still happy to report significant improvement. There is still a lot of variability from day to day - but that variability now includes occasional days where I'm totally fine. I have even had a few solid bowel movements. (Hurray!) And, these days, a really bad day is like a normal day used to be.
A few other random points - I ended up developing a sensitivity to Imodium. I tried really hard not to over use it, but I guess I did. Anyway - it got to where it would make the cramps way WAY worse. As it was hard to enjoy the lack of diarrhea whilst doubled over, lying on the floor in the fetal position - I stopped using it. After going without for about six months, I've started experimenting with using it again in very small doses. The sensitivity seems to have gone away. I'm hoping I can figure out a balance that will enable me to go camping next summer. I was so sad to not be able to go camping (or even hiking!) all last year. This would be a sad thing anywhere, but in the glorious pacific northwest - it is a tragedy.
We went back home for "Thanksmas" this year. (I highly recommend this as an alternative to getting caught in all the awful holiday traffic.) I had been really nervous that this trip - like so many other before it - would include an ER visit. It didn't! Yea! After a few more, I'm hoping I will feel safe traveling again. There are a lot of fun weekend trips we could do from here that I just haven't felt safe doing. (Who would have thought I would one day feel like I couldn't safely go to Canada?) And, I definitely need to feel safe spending the night in a hotel before I can think about camping in the woods.
Well, I think that should have everyone pretty well caught up. Hope all it well with you!
