Posted 6/15/2014 7:57 PM (GMT -6)
I have somewhat similar problems. I have severe constipation (due to a birth defect that caused a lot of nerve damage). I am only able to go when I do a "purge" consisting of 1/2 to 1 gallon of bowel prep (as used to prepare for colonoscopies) combined with prescription and OTC laxatives. It is hell. I have to do it 2-3 times a month, plus I take daily GI meds, not really sure why--they sure don't do anything. Have you had any testing done? I had (recently) a "normal" colonoscopy, and the doctor said "well, you just have to learn to live with it, and continue taking the meds and you'll need to do the "purges" for the rest of your life". Got a new doc now, and although we are still doing what the previous doc had prescribed, it's only a temporary fix. Until we can get all of the necessary testing done and then I will have surgery to create an ostomy. I'm not at all suggesting that will happen to you!! But, do you have a new GI doc now? You really need one. And one of the tests they have done on me was called ano-rectal manometry. It is painless, but they do stick some electrodes and a balloon like thing up inside you. It measures things like sensation and muscle strength, and the big one--muscle coordination. With me, they were able to figure out that the muscles were horribly weak, sensation was minimal, and my system was not at all functioning properly. When things were supposed to relax to have a bowel movement, the muscles would contract instead, making it impossible to go. I could go on more about that but I'll spare you.
I would suggest though that if you don't have a current GI doc, get one. And if you still haven't heard back about the stool sample testing, keep calling until you get some answers. When you do see a GI doc or even your primary care doc (until you get in to a GI) tell them as much as you can think of about your symptoms and also about how much it affects your daily life. Make sure to be honest with them about what meds you are taking and what you are willing to take/try as far as treatment goes. Keep bugging them about finding out what's causing this, you'll have much better treatment results if you actually know what the problem is. I understand sometimes they simply cannot figure it out, but I would really push them to try to find out. Think of your relationship w/ your doc as a partnership. You need to really work together to find a solution. One last thing--about the diet aspect. Sorry I don't have any good ideas or examples, but you might want to do some research or talking to your doc about finding foods that are easy to digest and kinda bland. Just something to think about.
Most importantly, do not give up. You do not have to live like this. If your doc won't help you, try to find someone who will. I have found a wonderful GI doc now, and he sees and treats the whole person, not just my guts. It may take time to find the answers, and yes, it is frustrating, just keep putting one foot in front of the other. If you want to talk more, feel free to email me sometime.
Good luck and keep us posted.