I often say it feels like waiting is a symptom of IBD. How frequently do you feel like you are just… waiting?

Waiting for appointments and a diagnosis

We wait for an appointment to see a specialist in the first place, just to get a diagnosis. Some of us are luckier than others, and the diagnosis is pretty quick. Then, there are other people who wait for years, pestering GPs intermittently about symptoms; fighting to be heard.

When we actually have a specialist, we wait for follow-up appointments with them. We send emails or make phone calls when we are experiencing symptoms, and we wait for a response. Then we may have to wait for the appointment to actually see the consultant before any action is taken.

Waiting for test results

Tests get ordered, and then we have to wait for test day to actually arrive.

Then, we wait for the results. Sometimes this is just a few days, but other times it can be weeks!

All of this waiting is incredibly frustrating when we already know that we are experiencing a flare, and we just need a test result to confirm it.

When results day finally arrives, a plan of action can finally be formulated. If we receive a prescription, we wait at the Pharmacy to collect it. If we need injections (B12 etc.) we wait for that appointment. We may need further diagnostics, so we wait for those to take place.

If we need to start biologics, we wait for more tests to be carried out to ensure we are safe to have them. Again, we wait for the results. If all is well and we get the go-ahead to start, we wait for that first appointment, whether it’s in the hospital for an infusion, or for a nurse to show us how to administer injections ourselves.

Waiting for treatments or surgery during a flare

Finally (or is it?), we wait some more. We wait to see if the new treatment is going to be effective. We probably wait a little longer than we should, in the hope that it will, even if it looks like it’s not. If it doesn’t, we contact our IBD team and we do it all over again!

If we’re admitted to the hospital, it’s still a whole lot of waiting. We still wait for tests and to start treatment, and we wait for our meds, and our food, and to see a doctor who might actually tell us something useful. We wait to get out of the hospital, hopefully feeling better than when we went in!

Of course, treatment doesn’t always work, and surgery may be needed, so we wait for all of the appointments in preparation for that. Pre-operative appointments, appointments with surgeons and/or stoma nurses, tests, and finally, the actual surgery date. Then, again, we wait for doctors and meds and food and for our bodies to start working more like they should.

The waiting with IBD can feel relentless

When we get home, we wait to recover. We wait to feel more like ourselves again. We wait to feel better.

When we feel better; like remission has actually been achieved, after what seems like a relentless battle, we wait to get sick and start all over again!