I have spoken to my OB who cleared a sedated scope in the second trimester, unsedated in the first. He also said no to Cipro and okay'd Flagyl--although when I suggested doing an alternative antibiotic, like amoxicillan, he said that would be even better. I actually forgot to ask him about the high dose VSL, but I will probably just hold off on taking it and bring a packet with me to my first appointment so he can actually look it over in person.
I am still drinking Kefir, but I had to stop taking my Floraster probiotic for a few days because it made the gas (which, since I can only clear that by doing weird bodily contortions right now) worse. Gas seems to cause cramping/urgency in the pouch right now.
I have shown some improvements: less pressure/discomfort in my rectum, have passed gas more easily (even once or twice on the toilet), and it feels...less inflamed down there? I can kind of feel things moving through more easily.
But I have also not shown enough improvement to make me feel better about the situation. Several times I have eaten something that has caused urgency/trapped gas, which ultimately led to going to the bathroom more and caused other problems. A big problem was brought on from eating a cheeseburger (with no veggies on it) and fries. I have never had a problem with that before. I am assuming it is grease that caused the problem. Beef stew, with minimal very, very cooked veggies seems to be the most soothing to the pouch at the moment. And pumpkin bread also did well, oddly enough.
I am thinking that this sounds like pouchitis. I can feel inflammation inside--which I know sounds crazy--but it is a similar sensation to what I felt with UC. In fact, that is why I have been so scared. Right before I had my surgeries, I started getting these exact symptoms (except with addition of blood, of course...and the symptoms were magnified by a 100) and that was beginning stage Toxic Megacolon. So, naturally, I am concerned. My hope is that I am just feeling some lowgrade inflammation, like pouchitis. It came on so suddenly that I don't see how it could be severely inflamed? But I guess I underestimate my body' deep urge to attack itself. Can J-pouches suffer from TMC or something like that? I am really hoping not.
Now, everything seems to sit with me. I'm not sure how long I can play the "wait and see" game--how long should I try to go without treatment? How long would it take something to clear up on its own?
I also personally do not want to do a scope. I feel really iffy about this GI--he was condescending when I was fearful/asking questions about rectal exams and pouches. I cannot even begin to imagine how he will react when I start asking for alternative antibiotics for the first trimester and making sure he uses a pediatric scope for the pouch. Any sort of medical problem takes my anxiety sky high, I know I am going to freak out during a scope if I am awake to see it. I know you guys also are not therapists, but does anyone else suffer from this kind of medical anxiety after UC and surgeries? I just feel like...if the scope reveals something terrible, like a serious problem in the pouch requiring surgery or Crohns...I do not know how I will react, especially right now. It has been such a good 2 years. I hoped this healthy life would last longer. I do not want to do the scope for those reasons, but I do understand (deep down, mentally) that if something is wrong, I need to know, and the sooner the better.
However, another part of me feels pretty sure that this is pouchitis, and if it is pouchitis, I don't really think a scope is needed at the moment. Would it be stupid to want to try antibiotics first? To see if it responds?
I know I am asking a lot of questions, but the truth is that I don't have anyone else to ask, and I don't know the right choices to make. I have talked to my husband, to my mother (who has RA and also a doctorate in nursing), my OB...none of them are able to give me a good sense of what I should do. My GI is impossible to reach, and also just did not seem receptive to questions. I tried asking him questions during my first appointment with him--and he kind of just side-stepped and refused to answer.
What would you do? What is the best course of action at this point?