Posted 3/13/2013 11:15 PM (GMT 0)
I'm on GI # three. Nothing we've tried has worked so far. We're trying to get me off of steriods now, because we think we're headed for surgery this summer. This is the first time I've compiled my UC story.
I wasn't expecting a life changing illness. I'm just now starting to deal with anything more than physical symptoms.
I don’t remember any symptoms prior to Spring 2011. I have no prior doctor’s visits for bowel issues.
Lent 2011 – March 9 – April 21, 2011
I had eaten shrimp at Lenten Fish Fries on several Fridays.
I developed diarrhea sometime during Lent, which lasted for a few weeks.
I do not remember having a fever during this time.
April 14, 2011
When the diarrhea was not abating and I noticed blood in my stool, I went to see my Primary Care Physician.
April 20, 2011
Primary Care Physician sent me to GI #1.
Diarrhea had resolved by this point.
Blood and mucus in stool.
Loud bowel sounds and a lot of discomfort.
I got colestyramine.
April 29, 2011
GI #1 performed my first colonoscopy.
For whatever reason, I was not told I had “Ulcerative Colitis” from this colonoscopy.
Pathology report showed “Active Colitis”
Concurrent “IBD Panel” result “Pattern Not Consistent with IBD”
Most of the rest of the summer / fall was spent testing and retesting.
Leg cramps – I had intense leg cramps at night for most of the next year.
September 2011
We did a Celiac test and a breath hydrogen test, which they said was positive and I was put on antibiotics. I was still under the impression this might “fix” my persistent problems. The antibiotics made me feel terrible, and I did not feel any improvement in my symptoms.
I took colestyramine, Lialda, and then Apriso.
Apriso may have had some effect, but I was not taking it religiously because I did not know or understand that I had UC, so I felt this expensive medicine was a shot in the dark rather than a targeted treatment.
December 2011
I was still not improving, still experiencing multiple trips to the bathroom to pass nothing but
blood and mucus. GI #1 wanted to do another colonoscopy, but I did not want to do
more “feeling around” testing. According to the report from the April test, we should have known I had UC, but I did not feel I was being treated for a specific diagnosis.
I started working with GI #2.
I continued taking Apriso and added Symax Duotab.
I told GI #2 I did NOT have UC, because that is what I believed at that time.
May / June 2012
I was passing a lot of blood at this time, and feeling quite weak. I was no longer able to make it
to the restroom at all times, but I was usually having bloody accidents, not stool accidents. I was not able to keep food down for the first time. I was only able to eat a few things, and I lost weight.
Finally Primary Care Physician did a CBC which showed a hemoglobin of 9.4. She also pulled the colonoscopy results from 4/2011 and said the pathology showed I did have colitis. She and GI #2 spoke and decided I should be admitted to the hospital on June 5, 2012. I went in through the ER that night. They did a CT scan that night, showing pancolits.
GI #2 did a colonoscopy on June 6, 2012. IBD. I learned from other testing later in my hospital stay that it is UC, not Crohn’s. Finally a confirmed diagnosis.
I had to have two units of blood on June 8, 2012.
I left the hospital on Prednisone and Imuran.
July 2012
My vacation was cut short by a serious illness. I had a fever, multiple styes in both eyes, cold symptoms, extremely painful and frequent bowel movements, and crushing pain in my sinus area.
Around the 4th of July, I can feel my transverse colon – it feels bloated like I’ve not experienced before.
The facial pain remained and intensified after the cold symptoms abated.
I took a z-pak for a “sinus infection”, which didn’t really do anything.
The pain increased to the worst I’ve felt in my life. I could only take Tylenol because of my UC. I did cheat and take Aleve more than once just to make it through the day.
I had facial x-rays to verify nothing was wrong with my sinuses.
August 2012
GI #2 determined the facial pain could be caused by my Imuran. We did Prometheus testing. I was taken off of the Imuran and signed up for Remicade.
I was still taking Prednisone. My dose was moved back up until the Remicade kicked in.
My first infusion was 8/30/12.
September 2012
Second Remicade infusion 9/13/12
Prednisone down to 20mg / day by the end of the month.
October 2012
Third Remicade infusion 10/11/12
Finished Prednisone taper 10/19/12
Feeling somewhat normal for the first time in a long time. Not much blood anymore, and much more normal bowel activity!
November / December 2012
I started getting symptoms back about the third week of November. I was bleeding and having to go to the bathroom much more often. I was sick again for Thanksgiving. I asked GI #2 if eight weeks was too long, and we moved Remicade back to 6 weeks after my December 6th infusion.
January 2013
Consistent symptoms over the Holidays continue into 2013.
I tried the Specific Carbohydrate Diet for two weeks. I kept a journal of food and bathroom
trips. I noticed I was in the bathroom a little less, because I was starving! I found the diet
difficult to manage, especially while my family ate regular food.
I developed intense pain in my left lower teeth / jaw. Since my experience with Imuran, I worried that this could be related to Remicade.
January Remicade 1/17/13 (6 weeks). My jaw pain was intense on the day of and after my infusion.
Dentist appointments 1/23, 1/30, 2/6 – the dentist says I have “TMJD” and he did occlusal equilibration and I got a night guard. He does not know the cause.
I got some Vicodin from Primary Care Physician to help with the jaw pain. I was finally able to sleep all night.
Hemoglobin 14.0 1/28/13
February 2013
I feel as bad as I did before I went into the hospital in June. Multiple, painful trips to the bathroom. Completely unformed to ropey stools. Consistent, non-stop bleeding. Not as much mucus as I had last year. I can feel my descending colon – it aches or feels “solid” in my abdomen. I have waves of pain after every BM that last for 30 minutes to an hour. It is pain that causes me to lie down or hunch over if I’m not able to get into bed.
I did not go to my Remicade appointment on 2/28. I don’t think it is doing anything. I am as sick as I have ever been and almost go to the ER.
March 2013
60 mg / day Prednisone started 3/2/13.
GI #3 – first appointment 3/12/13.
Confirmed Remicade is probably not working.
Switched from Prednisone to budesonide (orally and enema). Budesonide enema will take a few weeks at the pharmacy, started hydrocortisone enema until it is ready.)
Imuran – 100 mg / day