Posted 9/2/2009 8:15 PM (GMT -7)
I thought I would write to you guys and tell you about my latest trip to the hospital so maybe some doctors out there can learn our perspective a little more.
Background info: I started bleeding in June 2008 after I was off Asacol for about 2 days. Since then I have had blood in my stools. I went through the ER in September 2008, given a colonoscopy, and given entocort. The entocort took the pain away but not the blood. October 2008, I was very weak and felt like I could pass out easily. I was also scared of the blood and wanted some other med other than entocort. So, I end up in the hospital and was given prednisone but that did not help. I get extreme acne from prednisone and from now on I refuse to take this satanic drug. I end up in the hospital a month later and those SOB doctors give me more prednisone but I do not take it. So I decided I would treat myself after I read that entocort can be taken for long periods. I put my self on entocort for about 5 months and I see the GI and she puts me on Imuran. I took it for 5 months and it did not put me remission. Meanwhile, the pain returns while on 6mg of entocort and I get a separate bowel movement of yellow liquid with blood. GI gave me Pentasa suppositories and enemas. They did not help. Then I was given hydrocortisone with steroid suppositories. They did not help, but I feel some thick tissue around my anus (hemhorroids I find out later). I had hemhorroids since I was diagnosed since 2005. When I sit on unpadded seats, I bleed big time. In the summer of 2009, my hemhorroids really begin to hurt. I have to insurance and I did not want to bother my mom with getting help because she screams at me when she gets my medical bills. So, I go to a public clinic in Chicago for free help. The general practitioner gave me dibucaine and triaminoclone for them along with Keflex. I end up flaring even worse under Keflex. My stomach really hurt and my bowel movements were completely liquid. I go back to him and wait from about 9:00 AM to 4:30 PM to see me. He tells me to go to the ER. I waited there until 9:30 AM (17 hours) before being admitted. They kept me in my lobby for most of the day. The first doctor who sees me asks me if I want to remove my colon (!?!?!?!?). I said I was scared. He gave me a rectal exam and said I have multiple hemhorroids. I have 3 (!!!) more painful rectal exams. One of them was by a colorectal surgeon who says it is not a good idea to remove the hemhorroids if you have Crohn's/UC. I had a CT scan while in the ER and they found an abscess, but he says it is too small to drain because it is 1 mm (total BS). So, they send me to the colorectal and GI clinics. The colorectal doc gives me flagyl for the abscess and tells me to go to the GI to fix the Crohn's/UC and if I still have problems, then maybe he can get my fisher hemhorroids removed with bands.
So, I go to the GI the next day. I bring my colonscopy reports and info on the disease but he wants more info: biopsy, pathology and other stuff I do not know much about. He gave me Rowasa.. Then I started flagyl and began to have massive bleeding during bowel movements. The toilet bowl was completely full of bright read blood. This conitues until one day after the massive bleeding I get really cold and dizzy. I went to bed in a sweater and was cold for probably 6 hours and then I get a fever. I tell my mom that I see on the internet it says that if you get bad bleeding from flagyl to go to the ER. So, I tell my mom I need to go to Cook County (Chicago's free hospital) to tell them about this. My mom says that we should go now. So, I get my meds and the next thing I know I am flat on my face on the floor with little pools of blood me. My mom gets hysterical and we go to the hospital by me without insurance.
I am in the ER and get a wash for the laceration on my head and the IV gets rolling. The doctors took my papers and saw my history. I told them I am allergic to keflex, Cipro( I got UC/Crohn's because of it in the first place), prednisone, and now I say flagyl, even though when i had flagyl before I did not have a problem. The doc comes back and tells me he wants to put me on prednisone, cipro, and flagyl. I tell him what prednisone tells me and I tell him that entocort does the same for me as pred. This young little doctor then pulls out his blackberry and I have to tell him how to spell entocort so he can search on it (!!!!!!!!). He finds that it is in the same class as prednisone. I was ready to leave the hospital right there but my mom was there so I stayed. I convinced him to not give me at least prednisone. I had a CT scan and it found that I had one big abscess and lots of other smaller ones. So, they admit. In the room I was rotating in between fevers and chills. It was hell. That bothered me more than the hemhorroid pain. So, colorectal surgeons, GIs, regular docs, and infectious disease doctors (I was surprised why they came in - more on that later). They decide to put me on flagyl and Zosyn IVs, protonics, and another med I am forgetting right now. But now they took me off Asacol and and Entocort. Then my stomach begins to hurt so bad. They put me on morphine. The 3rd morphine shot made me go about crazy. I never used hard drugs, but I would imagine what I felt during that morphine usage was like it. I was thinking wild and creative thoughts. I wanted to sleep but I kept thinking like a madman.
They then give me another CT scan, and this the contrast makes me go to the bathrooom 10 times, meanwhile I am in between chills and fevers and I want to die. The colorectal surgeon then gives me sitz bathes because the hemhorroid pain was so bad. It helped after a few days and now I sort of feel the hemhorroids receding. The colorectal surgeons say they cannot drain the big abscess because it is in a bad spot. The GI then wants me on Entocort and Asacol. After a few days the pain goes away and the fevers and chills do too. They gave me 2 blood transfusions, TCP (some nutrition in IV form), and some white IV with fat lipids I think. I guess it help, but then my white blood cell count drops further to around 7.2. They eventually put me on a solid diet after I felt better. Meanwhile, I still have diarrhea but the blood was almost faintly in the bowl and toilet paper.
So, they send me home with IV antibiotics. Someone came and delivered the stand and the neeedles and all the stuff for (there is so much). The nurse comes in and shows me probably 30 steps to self apply the IV antibiotics. Meanwhile, I am hungry, tired and dirty. I really did not think I could do it and I have not yet. I have to do it every 8 hours. The first one is in an hour. I am worried.
They told me that if the antibiotics do not work then they will operate. It sounds like they would remove the whole diseased part of the colon. I have 25cm of UC on the leftside. Now, I am torn. I would like to remove the colon so I do not have to deal with all of this but I am scared. All of this is under a tight time frame before I go back to school at the end of the month. I have the CT scan and the appointment with the infectious disease doctor in about 3 weeks.
Wow, sounds like a lot. I thought I would tell you guys because I like to read your posts, especially if they are long.
I can give you another story of someone who emitted 1 pound of clotted blood from his anus. One of the doctors there called and told someone on his phone how he gave him a rectal exam and a "crapload" of clotted blood came. Poor guy. Not sure what happened to him.
My roommate came in with really bad ab pain. They were not sure what was with him, but they ended up finding that he had pancreatitis with kidney infection from drinking.
Well, I usually do not post many words but I hope I made up for it tonight while I wait for my next Zosyn IV. I am going to go now and have a sitz bath. Yeh, my mom took the sitz bath from the hospital :)
If you want a moral to the story, it is probably that we all suffer under this bad disease. Some worse than others. I thought I had mild UC/Crohn's, but now it seems like it is bad.
If anyone knows, I am wondering about the flagyl. They sent me home without it. Whatever it was that I was on in the hospital seemed to remove the blood. I have read that flagyl is used to treat flares. I am worried that I might get worse. If I do, I will call the GI and ask about this.
26m - Dx January 2005: UC/Crohn's
Normal medication: 12 tablets of Asacol daily
New: Entocort 9 mg