Hello Everyone and Happy Mothers Day to all us wonderful Mothers,
I am so sorry in advance if this turns out to be a long post but I really hope I can get some answers. After having a colonocopy about 4 weeks ago I was told to see a surgeon. I found a GREAT surgeon (I wish she was a GI doctor). I went to see her last week and she tried to do a rectal exam with some kind of long tube but it was very uncomfortable. She was able to see about 10 cm and really wanted a better look but didn't want me uncomfortable. She did see that I have a fistula that has been draining since about september of last year when another surgeon cut a slit because of an abcess. I explained to her since I had the colonoscopy I have been running a low grade fever on and off and right after the colonoscopy my fever went up to 104 but the hospital just sent me home. Two days after seeing her my fever went up to 101.6 and she told me to come right to the office because she was worried there was another rectal abscess. When I got there she didn't see anything but thought it would be a good idea to get admitted into the hospital so I can rest, get IV fluids, and antibiotics. I live in Queens, NY and hate all city hospital because of bad experience and was very happy to know she worked out of North Shore Hospital in Manhassett. It was Friday and I asked her if I could go home first and get things organized with my children and go Saturday morning and she said that was fine unless I started to feel pain or anything unusual. So, I went and got admitted on Saturday but when I got there the ER doctor didn't want to admitt me even though I was still running a fever. They sent a surgeon to see me and my husband and I explained what what my surgeon had planned. The medical ER doctor said they didn't want me admitted on the Med floor so I was finally admitted on the surgery floor. Besides that one ER doctor everyone in the hospital was GREAT. I suffer from very bad anxiety and panic attacks and I didn't have any severe anxiety attacks because everyone was so friendly that they really made sure you was comfortable.
OK, sorry....I am trying to get to the point. I saw my surgeon on monday morning in the hospital and she told me that since I was there that she wanted to bring me to the OR so she could get a good look at my rectum while I was under sedation. I really trust her and had no anxiety about telling her ok. Tuesday morning I went to the OR about 8:30 and they decided to give me general anestisha (sorry, spelt wrong) instead of sedation. Before I had time to have a panic attack I was knocked out. One thing that scared me was a hour later when they were finished I heard someone calling my name but I couldn't breath. I remember yelling in my head "I can't breath" and then I felt something being pulled out of my throat and I felt like a new born baby taking my first breath, "Thank God". I was brought to recovery and given something because I felt like I was going to throw up (and it worked). I found out that she put a seton in where I already had the slit that never closed from the previous surgeon last year. She said I had some inflamation in the left butt cheak and wasn't sure if an abscess was trying to bru. She also told me that she doesn't want to do surgery on the ilieum (where I have sever inflamation) because that will be the last option if nothing else works and I have been very under treated for crohn's for the last couple of years (I have only been on asacol).
So, I was allowed to go home on wednesday and besides having so much D (that I have had for almost 3 years now) I felt ok. Unfortunatly, that night I started running a low grade fever again. I rested Thursday, drank fluids, and took tylenol. On thursday night the fever was 101.6 so I called my surgeon but found out she went on vacation for a week. I felt really crappy so went back to the hospital and explained everything that was going on. I was told that I was probably going to stay again but then found out it was up to the surgeon after hours of laying there. I was pissed because this had nothing to do with a surgeon and I wanted to see a GI doctor (I never seen one while I was admitted in the hospital). They told my husband that the GI doctors will rarely come to the ER. My husband and I think it would be a good idea for me to start some steroids to at least get this inflamation down but all they keep talking about is remicaid. I have lost about 60 pounds and am under weight which is not good because God forbid something happens I can't afford to lose one pound. They say that they don't like to start steroid in case of abscess or infection but I have read the same thing about remicaid.
I am still getting very low grade fevers on and off and noticed yesterday when I didn't take Tylenol that it just went down by itself (very strange). My first appointment for the GI doctor (in the hospital clinic) is this tuesday. I have so many concerns about
starting the remicaid. Plus I heard or read that it takes time before you can start it. They did a TB test while I was in the hospital but I don't know what other things they should check. My white blood count is good but red blood count is very low, I'm confused about
that. Should I demand them to start me on steroid untill I decide about
the remicaid? Is remicaid the ONLY medication that will help for rectal fistulas? I have mild inflamation in the rectum, can't the give me a steriod enema medication? Does anyone know if 6mp would help with my condition? I am really really scared to start remicaid and would like some time to think about
it and maybe find out about
other option. One thing about
me having crohn's is I haven't had pain (even though I have severe inflamation of the ilieum) but am always running to the bathroom, haven't had a formed stool in over 2 years, and have had so much weight loss and fatigue
. I know I have more questions but this is already as long as a book (sorry). I just wanted who ever reads it to know as much as possible. Thank everyone in advance for any answers and for taking the time to read this very long post. I am just very scared and want to go to the GI doctor prepared.