Praying for Remission

It's been a while since I've posted an update, especially about Annie's ulcerative colitis, so I thought I'd share a bit about what's been going on lately.  Annie went into remission for several weeks in December and we felt like we had started to see the light at the end of the tunnel after 4 1/2 months of chronic diarrhea, a terrible c-diff infection, and a 6 week hospital stay.  The couple weeks around Christmas were a huge blessing--we had Annie home, she was happy, healthy, and in remission.  However, as the new year rolled around, Annie started experiencing symptoms of another flare-up.  After doctor appointments and phone calls and medication changes, her flare-up continued through January and well into February.

Last week we were desperately hoping and working to get her off the steroids completely.  She has been on steroids to manage her ulcerative colitis for 3 months straight now, which is not safe and causing terrible side effects.  So finally, last week we managed to wean her down to a very small dose and were just a couple days away from having her off the steroids completely when Annie became quite ill.  Of course Annie throws up with any kind of illness, and with the steroids suppressing her immune system, we held out a couple days to see if all the vomiting was just due to a cold she might have picked up at school. (Vomiting with a cold is very normal for Annie since she can't tolerate any kind of congestion due to her inability to swallow normally.)

However, the vomiting continued, changing from phlegm to food and bile.  Her diarrhea didn't increase (she's consistently having about 4 loose stools a day since the beginning of January) but her diarrhea became much more bloody than normal.  She started vomiting blood, most likely due to the stress on her stomach and esophagus from so much retching, and she even started leaking blood out of her stoma (the hole in her stomach where her feeding tube is).  We had no choice but to increase the steroids, this time back to the dose she was on while in the hospital last fall.  We're becoming so discouraged that she can't seem to get off the steroids.  They are not meant to be used for long-term use and are toxic drugs with bad side effects.  If steroids continue to prove ineffective, the doctor will prescribe cancer drugs that will be more powerful in suppressing the immune system and helping the ulcerative colitis go into remission.

After being on this large dose of steroids for about a week now, Annie has seemed to respond.  We're seeing less blood and fewer episodes of diarrhea in a day.  So again, we will be soon working to wean her off the steroids.  We are especially praying that this round will put her into remission because of her upcoming surgeries in March for her salivary gland ablation.  It would be best for her to be off the steroids before having her surgeries, so we will work for that goal and hope that she doesn't start with another flare-up before her procedures.  We prefer to have her off prednisone for surgery, but the alternative (vomiting and increased bleeding) are not good symptoms to have before surgery either.  The prednisone is also causing an increase of fat around Annie's neck and chin which put her at an even higher risk of airway restriction after her surgeries which cause an incredible amount of swelling.  She already has a floppy airway and easily obstructs (she uses a CPAP machine at night to keep her airway open) so reducing the amount of fat around her chin and neck before surgery would be ideal.  So we pray that the prednisone will somehow bring about remission this time around, and that her other slew of drugs will be able to maintain her remission for her procedures.

I'm so excited for Annie's surgeries in March!  I can't wait to have once less thing to worry about, and can't help but wonder if this salivary gland ablation will prevent her from vomiting so easily and help her stay healthier.  We have high hopes and expectations, and hope this procedure brings her a higher quality of life!