Where to begin on this latest saga. Hold on to your hats and glasses, this here's going to be a wild and crazy ride! (If you just want the recap, skip to the bullets at the end.)
Let's see, how about last Thursday (yes, our anniversary). I called my GI and told her I was feeling worse than I had been - blood in the stool -- growing; pain, oh-horrible pain -- worsening; sleep, lovely sleep -- dwindling. She called me back that night and said to come in first thing in the morning for some blood work and then she'd see me in her office at 10:30. Well got there and did the blood work, which is was supposed to include a urine sample, which for some reason took me over an hour to do...CRAZY.
I didn't end up seeing my dr until 11:30 (she was running late) and then she wanted me to go over to the hospital to have a CT scan at 2p.m. As you can imagine, I'm already exhausted and this day was just pushing me over the edge. Long story, long, I drank the nasty barium and went over for the CT scan. They were also running late too, so I didn't leave until 3 p.m.
Finally got home and crashed, until the phone rang and it was my dr at around 6:30. She said that the blood came back showing some inflammation somewhere; my urine was cloudy, had some blood in it and high white count; and the CT showed that a large amount of gas and stool was trapped above my j-pouch. So the gist is, she sent my urine for another culture to check for infection before putting me on the antibiotic for it, because that antibiotic is known to cause C-diff; I needed to drop off my stool samples Saturday morning which would be checking for everything from C-diff to Salmonella; and she said that since I was still having output not to worry too much about the trapped gas and stool; end of conversation was see how the weekend goes and if it gets worse go to the ER.
Well unfortunately things did not get better and I felt down right awful, so here's where the real crazy day begins...Yesterday morning I woke up early and called the doctor she said to go to the ER. So around 10 a.m. I packed up and went over there. They got me a bed and started me on my pain med of choice diauladid and a bag of IV fluids and then began their own blood and urine work up. When I explained my unique anatomy to both the ER dr and the nurse they both looked at me with blank stares, which is expected but always unsettling. The ER dr was going to call my GI and they would consult. The hubs arrived from work and so we sat for the next few hours, I still had a lot of or what I would consider a lot of blood constantly leaking out but they never once wanted to look at that.
Finally around 3 p.m. the nurse comes in with a yellow bag of stuff and says, "We are treating you for a bladder infection and then we are going to discharge you. Oh and here's some pills because your potassium is low too." We ask well, "Does that explain all the pain and what about the blood in the stool, and the trapped gas/stool in the intestines?" He says, "Well the only thing it might explain is some of the pain."
Ok, lets stop right here and let me tell you I have had many a bladder infection in my day (remember the whole cranberry pill discussion?) This did not feel like any other bladder infection I've ever had, but with that said I'm glad they at least figured that out and started treating me for it.
But I'm also frustrated, I know I haven't just been suffering the last 3 weeks with just a mysteriously presented bladder infection, there has to be more to the story. And because I'm "a difficult case" according the ER staff this is the best they can do for me. And my GI just wants to me to follow up with her by phone when we get home.
I'm pissed, about to have an anxiety attack and thank heavens for my awesomely calm and patient husband because he once again talks me off a ledge. By the time we get home, I'm crying hysterically and my hubs calls the dr for me and speaks to the wonderful med assistant. He explains how upset I am, that the UTI can't be the only answer, that we need to figure this out, where are the results of the stool samples, etc, etc,. She says that the dr forgot to order the stool samples stat so they could take a little while, but they are working on getting them sooner and that she will have my GI call us back right away.
Ok, people hang with me we are almost to the end of this awesomely crazy Monday! The dr finally called around 6 last night and spoke to the hubs. She was able to explain that the antibiotic they gave me for the UTI -- Cipro -- would be working towards my bladder infection and my pouchitis. The reason she didn't give it to me after the Flagyl and even before the weekend when she suspected a UTI, was because of the C-diff possibility. But now that it's confirmed that I do have the UTI and still have pouchitis it's the only thing to try to kill both and that I should take a probiotic to try and ward off the C-diff. She said the blood is most likely due to the pouchitis/cuffitis. She also said that she looked again at my CT scans - both the one from May when I had the total bowel obstruction and the one from Friday. Said that it did appear there was a smaller blockage this time but must be only partial because stool was still getting by. It was in the same spot as the May big daddy blockage, probably caused by inflammation or scar tissue. She said she understood how miserable I've been and how frustrating this is. I need to make an appt to see her tomorrow and hopefully they will have the results of the stool studies.
So what can we conclude from this very long winded post, well here it is:
- I'm a difficult case, which sometimes leads people to want to just throw their hands up and fix what they figure out and get rid of me, which leads me to think I'm a complete nut case and maybe it's all in my head.
- I have a UTI and pouchitis and am taking Cipro for that and continuing on the Entocort for the pouchitis as well. Adding a probiotic. And hoping all this combined will get rid of the infection and the pain.
- Hopefully the partial blockage will pass, I think that the IV fluids did help a little with this a little.
- Don't take all new said meds at once when you get home from a crazy day at the ER after taking heavy narcotics, because then you will start tripping out on drugs for the next couple of hours.
- I will have an appointment with my GI tomorrow and hopefully we can figure out the blood issue.
- I'm still going to see the UCI surgeon tomorrow afternoon, and hopefully he won't think I'm such a "difficult case" and provide us with some guidance.
- Once we switch insurance, I will go back to my old GI, who we loved. Who even though I have always been hard to figure out never once gave up on me or made me feel crazy.
Phew, ok that's it. If you actually made it through this post, pat yourself on the back and take a step away from the computer before your eyes bug out of your head.