I realize this is long but if someone could read this and help me out, it would be greatly greatly appreciated.
I was diagnosed with pancolitis in my first semester of college, November 2009. Went on prednisone and asacol and that held me for just over a year.
So on January 18, I started to flare up pretty badly. Went right on prednisone but it did nothing. Went to the hospital in mid February for 9-10 days. Was put on Humira and that, alongside prednisone for a bit and still on asacol, seemed to get things under control. My GI doc had told me that my blood worked looked "awesome" and I was finally feeling the best I had in a few months.
Shortly after, I then began to develop upper respiratory symptoms and went to my normal pediatrician, who I had not seen in almost 2 years had been pretty clueless to my colitis history at all. Not knowing colitis or immunosuppressants that well, she put me on a Zithromax (which i of course took because I figured a doctor would know what and what not to put me on) and thats where things went down hill.
As I now know, antibiotics cause diarrhea and abdominal pain so I didnt think much of that while on zithromax. After completing the course, these symptoms pursued and I called my GI Doc and after giving a sample he said I had C-Diff. So then I went on flagyl and that got rid of the C-Diff. However, my symptoms never completely subsided. so from about
April until the end of June, my symptoms were sort of "smoldering along" as my GI Doc puts it. I would have good weeks, then weeks that werent as good and my symptoms were just so up and down.
In mid-May, I went on entocort because I was going on a cruise the first week of June and my GI Doc wanted to try and get me some relief without the side effects of prednisone. This seemed to work a week or so until my symptoms reappeared much as they had this whole time. Still just "smoldering along."
At the end of June we decided that Humira just wasnt working anymore and that I should switch to Remicade. We had the first infusion appointment set up for July 1, I believe but one week before that, I developed a fever and being that I would not be able to switch medicines while being sick, I went into the ER to get this nipped in the butt. My white blood count was high (due to prednisone somewhat but I also had a high BANDS count) but they werent really sure where the infection was so they put me on some GI safe antibiotics, Flagyl and Cipro (they also took blood tests all of which came back negative a few days later). The next day I started to get the worst sinus pain, to the point where I was just laying in my bed with ice bags on my face. Naturally I assumed I had a sinus infection. That occured on a Sunday, so then on monday I developed severe pain in the roof of my mouth and under my tongue along with some swelling under my tongue. The roof pain was as if it was radiating down from my sinuses and did not hurt to the touch. I went into the ER for these symptoms afraid that it was Ludwigs Angina. They didn't think it was that but they admitted me because they weren't sure what it was. They tossed around a bacterial infection, a viral infection, or possibly both.
The mouth pain triggered something in my GI docs mind making him think it was Herpes Simplex Virus (HSV) because he has seen the virus present in a patient on Humira's colon, rather than the mouth and he wanted me on a course of valtrex. So now I am admitted into the hospital for the second time this year with no real sign as to what is wrong with me. Some docs in the hospital decided that (side note: I am not dealing with my GI doc much during this due to the fact that it was not a GI issue) cipro didn't cover as much and wasnt that powerful so they put me on avelox because it was more concentrated and covered more types of bacteria. Well this was a horrible mistake. Remember that mouth pain and swelling, well that was because I am allergic to cipro and avelox (in a class called quinolones). Taking the avelox made me suffer from the worst headache and mouth pain ever. I was giving it a 15/10 in the hospital. I then develop the swelling, but due to the concentrated does, it was much worse this time. Without going into details, I'll leave it at my life was sort of up in the air for a few hours. After realizing that I was having an allergic reaction, they took care of that and released me the next day under the same pretense that I had either a bacterial infection, viral infection or both.
Well about
a week later, I developed ulcers in the back of my mouth that my normal pediatrician deemed to be viral, which was actually good news because that would mean humira had actually been working and I didnt have to switch. My GI Doc said that my immune system just needed to be in the right place for them to develop in my mouth and since everything was all jumbled/masked by so many other symptoms that thats why it was so hard to figure out.
Fast-forward 3-4 weeks to the beginning of August. I ask my GI Doc about
probiotics and he said to try it because there are no ill side effects off them; simply put, it will help or it won't. I started Culturelle Digestive Health pills on 8/2. Had some gurgling, gas, slight pain but understood this was due to my colon adjusting to the bacteria. On Saturday, 8/6, woke up with diarrhea, blood, and pain out of nowhere sort of, called my GI office and the Doc on call said to go back up to 40mg of prednisone (I had tapered to 20mg). This seemed to do the trick; The rest of Saturday and all this past week I felt much better; no more pain or blood or diarrhea and my frequency was 1-2 a day. Then yesterday, 8/12, I had a stomach ache at work (my typical colitis pain) so I took some imodium just to slow things down and get my through the day. It did the trick until this morning, 8/13, when I woke up at 8 a.m. with diarrhea, pain and some blood again. I went back to bed until 11 a.m. when I had another BM with blood, diarrhea, pain, and this time some vomiting.
It is now 3:45 in the after noon and I am feeling pretty good, similar to what happened a week ago.
So the over-arching question is this: What the F@$% is wrong with me???
Some more specific questions:
-Could this still be the HSV hanging out? I know you can be on valtrex long term so why not just be on it all the time?
- Ive read that bacterial infections come on more acutely, like what happened last Saturday and today (8/6,8/13 respectively), and being that I started a probiotic when I was feeling well and a few days later I developed symptoms, could it be bacterial? I know that probiotics are "good bacteria" but they are still bacteria and I am on an immunosuppressant.
- I am not opposed to switching to remicade, I've heard great things about
it, but I want to be absolutely sure that it is the Humira not working and not a virus/bacteria that's making this happen. I assume this can only be done with a colonoscopy and/or blood work?
This is it for now, I will post more questions as I think of them.
If you have heard of something similar happening to you or someone else, any insight would be greatly appreciated. I haven't gone a day without thinking about
bowel movements, colitis, my diet, medicines, etc. etc. for 8 months now. I am sick of revolving my schedule around my disease and my disease ruining my plans. As I just said, if you can help me, i would be so thankful.
EDIT: I had a colonoscopy done around mid-end May to see if the CDiff had gone away or if it was the UC. A biopsy was taken and the cdiff test came back negative.
Post Edited (jleath13) : 8/24/2011 11:22:31 PM (GMT-6)