Anxious Much?

Anxiety and my illness were not compatible.  But they did seem to go together.  One followed the other one.  It could have been that being sick caused my anxiety.  And then my anxiety would make my IBD symptoms seemingly worse.  It was an endless cycle.

Eventually things progressed with my Ulcerative Colitis (or stayed the same maybe?) to where my gastroenterologist at the time suggested I move up to the adult gastroenterology department.  She had prescribed all the treatments and medication she knew to try.  And she never was 100% certain that I had Ulcerative Colitis.  It still could be Crohn's Disease.

At 17 (not quite an adult legally but close enough for this situation), I said goodbye to pediatric gastroenterology and moved on to the adult gastroenterology department.  There, I met my current doctor (who had training and further education through the Mayo Clinic) as well as my colorectal surgeon.  I didn't yet need a surgeon, but it was good to establish a relationship with him in case a situation were to arise where his services were needed quickly.  The collaboration between the two doctors made an impression and helped to make a more accurate diagnosis for what I was dealing with.

I got to have yet another colonoscopy in which the two of them were able to look at the results and make a diagnosis and a plan.  My new diagnosis: Crohn's Disease.  And it was said with absolute certainty.  Yep, 3 years of Ulcerative Colitis as my named illness turned into Crohn's Disease.  The "red flags" as they put it pointed my troubles to be labeled as Crohn's.  I don't remember what those red flags were.  Maybe it was due to them seeing that part of the small intestine was affected as well as my large intestine (which we knew).  With Ulcerative Colitis, only the large intestine is involved.  With Crohn's, the whole digestive tract can be affected.

Having a sure diagnosis felt relieving to some degree.  The course of treatment didn't change much however.  There were some other medications to try, but the prednisone was still there as the first line of defense to get the active disease back under control.  This happened off and on for a few more years.

I'd have a flare, go on prednisone, try another medication, wean off prednisone, and my body knew when the prednisone was gone.  Another flare would occur not long after.  Each time this would happen, I'd have to try a new medication.  One involved me injecting myself.  (And I thought swallowing a pill was tough!)  The medication was called Humira.  It came in a pre-filled syringe.  I'd select either side of the thickest part of my abdomen or either of my thighs for the injection site.  The syringe had a trigger button that, once pushed, would set off a spring-loaded needle in the injection site.  It was shocking as it was so sudden.  And the injection burned slightly.  Of course, the first few times I did it, I was very anxious about it.  It's one of those things you can't imagine having to do to yourself.  But I managed to go through with it.  It still caused anxiety, but not as much as the first few times.

By the time I got used to that process of medication administration, it appeared not to be working.  Yet another flare up happened.  I was then put on a medication called Remicade.  This medication was introduced intravenously (every few weeks maybe?)  Anxiety was present there as it was an added item on my healthcare schedule; something I might have to miss more school for.  Plus, it wasn't cheap.  I don't know how much my parents paid and how much was covered by insurance, but at 17, I was aware of the fact that this medication was by far the most costly of all I'd tried.  But I didn't have to be concerned with that long as it didn't seem to work either.

There was a lot of anxiety with the uncertainty of the disease process: whether or not a medicaiton would work, when would my next flare up occur, what damage was the prednisone (and even the disease itself) doing to my body, how much school I would miss.  But a lot of anxiety would come from being alone.

No, I wasn't physically alone.  Many people were supporting me through prayer and emotional strength.  And of course my parents were there through it all.  But the majority of these people had not been through this particular issue that I was dealing with.  They weren't teenagers dealing with a chronic illness.  This isn't a woe-is-me story but a viewpoint that sometimes things can be made a little easier to deal with if you have that someone to talk to that has been there and done that.  They may know tips and tricks to make things easier.  They might have even come through there situation victorious which can provide hope.  At this point, I didn't have that to the extent that it would have been helpful.  That remembrance is part of what has led me to write this blog.  I have hopes of reaching someone like I was while I was sick; helping someone who's walking through the unknown.  Please, share this blog with those you know who have Crohn's Disease, Ulcerative Colitis, a chronic illness.  Feel free to engage here and ask questions.  I'm here to try and be of help and let others know that they aren't alone.