Ulcerative Colitis Diagnosis

I haven't found much time lately to write an update on Annie.  So here's what's been going on lately for those of you who aren't reading any of the updates I've posted on Facebook--those quick one-liners are about all I've had time for lately.

Since Annie's colonscopy in mid-December (which you can read about below), Annie's diarrhea had dramatically improved.  For a few weeks she was only having a BM every 3-4 days and we had to start giving her Miralax again--which was all completely normal for her and we were quite the happy family over Christmas break!  However, a few days after Christmas, Annie's diarrhea started increasing again.  Over the first week of January her stool was starting to contain large amounts of blood and Annie was having 4 diarrhea episodes a day.  She was still on prednisone at that point--we had started a 4 week weaning schedule after her colonoscopy.  Then the plan was to see the GI on January 17th once Annie had been off the prednisone for several days.

However, we were starting to get nervous about the amount of blood in her stool and were also concerned that she might get dehydrated, so we called the GI.  That was the day Annie was scheduled to stop all prednisone.  However, the GI told us to keep giving her 10mg/day of prednisone until we could get in to see him.  We met with the GI on January 13th.  They did blood work and took a stool sample and we were told to continue the 10 mg/day of prednisone until they got all the lab work back.

So now, a week later, we have learned from Annie's blood work that her ESR (a marker of inflammation) is increased, and her stool showed a calprotectin level of 1400 (marker of inflammation--it was more than 2500 while in the hospital last October).  We weren't surprised to see that she has an inflammed colon since she's had so much diarrhea lately.  Also, because of the unique smell, we had been wondering if she had a relapse of her c-diff infection--which can easily occur with c-diff.  So they tested her stool for c-diff as well, although we knew (and the doctors acknowledged) that once a person has a c-diff infection, they will always test positive for c-diff.  However, to our surprise, Annie's c-diff test came back NEGATIVE!  So either it was a false negative somehow, or the 6 weeks of blasting her with antibiotics and other c-diff treatments in the hospital must have totally eradicated c-diff from her system!

So, because of all this, the GI has now diagnosed Annie with ulcerative colitis (UC).  He's not sure what would have sparked another flare-up now, but said the first year can be difficult in managing UC until we discover what exactly works in preventing flare-ups.  So the GI has increased Annie's mesalamine dose, and has added flagyl and VSL#3.  The GI is continuing to treat Annie with prednisone to try to clear up this flare-up, so we all hope she can come off the prednisone soon.  She will stay on the other medications for maintenance, but then require prednisone for each flare-up that occurs.

We realize many people live with UC, but this diagnosis has been difficult for us because of all the other additional health issues Annie struggles with.  This has been a time of chronic sorrow, where we yet again have to face a new diagnosis and try to adjust our lives to new treatments and a new level of care.  I'm sure we'll get used to everything and eventually learn how to manage the UC, but for now it seems overwhelming and unfair that Annie has yet one more health concern to deal with long-term.  It has also come at a time when we have so many other concerns with Annie--her scoliosis check is coming up at the end of the month and we're worried we might be facing the possibility of a spinal fusion which is major back surgery.  We're also trying to plan her salivary gland ablation procedure that we have to travel to Ohio for.  In addition, Annie's new wheelchair seating system came this week.  It doesn't fit her comfortably and it's been difficult to try to get her what she needs for her chair--(that's a whole post right there, coming soon!).  And that's not to mention her regular appointments for neurology, pulmonology,ophthalmology, etc. check-ups that she requires.  Annie definitely keeps us busy! 

Fortunately, Annie has been sleeping well and has been happy lately.  She's recently returned to school where she's enjoying being around her friends and teachers again.  She continues to amaze me with her sweet disposition despite having even more challenges.  She is the ultimate example to me of long-suffering and patience.  I am so grateful for her--she's continuing to teach us so much!  And I'm so grateful for such supportive friends and family.  Thank you to everyone who continues to show such concern and love for Annie.  We appreciate all your kind words and your prayers on her behalf.