"Things are Good"

I just had an annual checkup with my gastrointestinal specialist this week - and the appointment went well!! 

In the chronic illness world - that is a far cry from 'feeling great'. 

Yes, I have been feeling better lately, but better comes with several asterisks. In fact, it was even stated by him and by me that this the past 6 months I have been feeling better than the 6 months prior to that - so that is fantastic, and he is really thrilled. 

Here's the tough truth about this - the following list of Crohn's-specific symptoms are considered better: 

• bowel movements 10-12x per day, often spending an average of 4 hours in the washroom in a 24hr period. 

• serious intestinal bleeding 1-2x per week

• other sources of bleeding 1-2x per week

• diaphragmic reflexive burping fits once every couple of weeks lasting a minimum of half an hour, usually induced by stress. 

• intestinal pain several times a week, but more intermittent than constant as of late 

• episodes of incontinence every few months

• urgency 

This IS 'better'. I put "better" in quotations because when people hear that 'things are better', it is often accompanied by the belief that there are no more symptoms. That is a major myth that has been difficult to express. "Doing better" does not mean that I feel great! It means that these symptoms are more predictable. I can often predict when my crash days will be, I am less surprised by the severe intestinal bleeding because I have a very good idea of when it will happen, and I can more easily schedule my day around bathroom breaks. When people with chronic illness say they are doing better or that their illness is stable, it does not mean that we are magically healthy and without symptoms. It means that we have a good handle on when our illness will give us the bigger attacks, and that we can predict it well enough to keep ourselves out of the ER. 

I am happy with how things have been lately with my Crohn's Disease in particular. Being able to suppress the burping most of the time has been especially good because we still have no idea why it's happening. Predictability is vital in trying to live as normally as possible. It was really nice to tell my GI that things are predictable for the most part. It was a good appointment and a great feeling. 

It is such an interesting paradox of feeling 'better', which is a far cry from 'healthy'.