We had a busy CF day yesterday. Luckily it went well for the most part.
First we had an early morning clinic visit to follow up with the doc about the c. diff and the pain. The doctor that we are seeing now is SO much better than the previous doctor. We talked a lot about the pain issue. The doctor says that Gess is sort of in an in-between phase with the pain---it is not quite chronic pain, but not quite acute either. The pain is more frequent and not necessarily tracking with a specific exacerbation.
He is going to send us back to the pain clinic and ask the pain specialists to look at this as more of a chronic pain issue to see if we can come up with a solution from that perspective. Previously the pain folks said that the demoral seems to be working, so keep up with that. Demoral does work for the pain, but it isn't really a workable solution because it makes him super loopy and also unable to sleep. So we are hoping that there is some sort of daily medication that can help with pain generally and then supplement with demoral when necessary. Gess has a lot of limitations when it comes to pain medication (because of the liver disease and clotting issues, plus a bunch of allergies to pain meds), so this might be a challenge.
The doctor also suggested looking into some alternative therapies for pain. Gess has already started to see a naturopath, and he is open to trying some other treatments, so maybe we can find something that works.
As for cause of pain, the doctor says that it really depends on the person--some people with CF have chronic pain, some never have any pain.
So, the plan for that is for Gess to see the pain clinic and take demoral as necessary now. Also, to start the exercise program with pulmonary rehab and do the sleep study, etc. Maybe the exercise will help. Who knows. I think that I have convinced Gess to join a local gym. We are supposed to go and look at it next week I think and get a trial pass, etc.
Gess also had an endoscopy yesterday. The endoscopy went well and there weren't any varacies that needed banding (he has had bleeding in his esophagus before, so 1-2 times a year they go down in to check things out). He had some pain after the procedure (which has happened the last couple of times), so that wasn't good, but at least things looked good there.
He took demoral yesterday so he has been out of it and didn't sleep well. He is at home, trying to do a bit of work and also get some rest. Hopefully things will start to fall together and he will be feeling a lot better.