ARGH!!!!!!!!!!!!!! The start of school has NOT been smooth. My son has been having more of his bouts of feeling terrible (tired, slightly queasy, pale, dark circles under eyes, sometimes sweating but no fever, occasional flushing of cheeks, low appetite, abdominal pain of varying degrees, and sometimes a headache). When he feels like this he looks terrible and he is unable to do anything except veg out in front of the TV. He has bouts of these symptoms every week lasting anywhere from 1 - 3 days, this past week he had 2 bouts back to back and was basically not able to function the whole week.
Docs say his Crohn's is under control. His CRP and ESR keep coming back normal. He had a fecal calprotectin done in April that was normal and we just did another one and are waiting to find out the results. His BMs are formed. He has no blood in his BMs. His perianal abscess healed a long time ago. He is gaining weight and is now above his pre Crohn's weight.
I got super frustrated this week as our GI keeps saying it is IBS in addition to Crohn's and there is nothing that we can do, well there is no way I can just accept that he will be lying on the couch for the rest of his life. So this week our lovely GI nurse (and she really is lovely) got the full brunt of my frustration with a very tearful phone call. I really had begun to feel like we had been given no hope of any of this getting better. My tearful phone call resulted in an appointment the next day with a different GI (ours was not available at the time). New GI and GI resident were a fantastic change. They finally listened to us! They still think it is functional abdominal pain but they are now starting to lean towards abdominal migraines. Once I got home and googled abdominal migraines I couldn't believe how well his symptoms match those of abdominal migraines.
I am a little disappointed that the first line of treatment they have given us is for IBS and not abdominal migraines. They want us to try a specific probiotic for about 4 weeks and see if that helps. I told them I wasn't willing to wait 4 weeks if it wasn't working and they said to call in 2 weeks if we see no improvement. The more I read about abdominal migraines the more I think that treating the actual migraine is the way to go but maybe I'm wrong and the probiotic will work and he can avoid more medication so I will give it a try.
I finally feel like we might be starting on a path to solve/manage all this!
Docs say his Crohn's is under control. His CRP and ESR keep coming back normal. He had a fecal calprotectin done in April that was normal and we just did another one and are waiting to find out the results. His BMs are formed. He has no blood in his BMs. His perianal abscess healed a long time ago. He is gaining weight and is now above his pre Crohn's weight.
I got super frustrated this week as our GI keeps saying it is IBS in addition to Crohn's and there is nothing that we can do, well there is no way I can just accept that he will be lying on the couch for the rest of his life. So this week our lovely GI nurse (and she really is lovely) got the full brunt of my frustration with a very tearful phone call. I really had begun to feel like we had been given no hope of any of this getting better. My tearful phone call resulted in an appointment the next day with a different GI (ours was not available at the time). New GI and GI resident were a fantastic change. They finally listened to us! They still think it is functional abdominal pain but they are now starting to lean towards abdominal migraines. Once I got home and googled abdominal migraines I couldn't believe how well his symptoms match those of abdominal migraines.
I am a little disappointed that the first line of treatment they have given us is for IBS and not abdominal migraines. They want us to try a specific probiotic for about 4 weeks and see if that helps. I told them I wasn't willing to wait 4 weeks if it wasn't working and they said to call in 2 weeks if we see no improvement. The more I read about abdominal migraines the more I think that treating the actual migraine is the way to go but maybe I'm wrong and the probiotic will work and he can avoid more medication so I will give it a try.
I finally feel like we might be starting on a path to solve/manage all this!