Hospital Stay and I have some Questions

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sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 5/9/2010 12:35 PM (GMT -7)   
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  confused . 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.

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 5/9/2010 7:50 PM (GMT -7)   
First off, (((hugs))) this DD is so hard on all of us. I really hope they get you on the right track soon.
I think Remicade is a good option for you- it's shown clear evidence of helping fistulas close and putting you on the fast track to recovery. I understand being anxious about it though...but I really don't think your surgeon would recommend it if it wasn't in your best interest. I say just try to hold off while your surgeon is on vacation and ask her about the steroids. Most floor doctors at larger hospitals aren't very experienced/know much about Crohn's. You're probably tired of waiting by now, but it's just a little longer.

I'm so sorry that you've had to go through all of this, but it's wonderful that you have a doctor that cares about you.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Off every med while the doctors contemplate my diagnosis.


LittleSisSmurf
Regular Member


Date Joined Apr 2006
Total Posts : 164
   Posted 5/9/2010 10:10 PM (GMT -7)   
I dont know if this will be any help but I was on immuran which closed my fistula. I also asked my doc for a rectal foam(sterriodal) which was easier to keep in since I have control issues. I also did the remicade and humira. Im at the last stop now which for me is surgery and and permanent ostomy bag. I wish u the best of luck. Good luck.

sweetnakira
Regular Member


Date Joined Apr 2010
Total Posts : 119
   Posted 5/10/2010 6:45 AM (GMT -7)   
Thank You imissicecream and LittleSisSmurf for your reply.
LittleSisSmurf, they never mentioned immuran at all and I havent heard of it (maybe something I should google). Actually all they keep saying is Remicaid but I wanted to know if there where any other options before I go see the new GI doctor tomorrow. I have had this fistula since last year and I have a feeling that Remicaid is not going to close it and I don't want such a strong medication in me if I can try something else. My body is so sensitive to medications and I seem to get all or most side effects :-(. So remicaid or humira didn't help to close your fistula? I really wish I understood exactly what all this means. I know a fistula is a tunnel but thats all I know. I know that I do have one that is draining but not sure whats draining from it since I was told I didn't have an abscess. I am so confused and frustrated. The doctors are in such a rush that they really won't explain anything to you and the more I try to research the more depressed I get so Im trying not to do that anymore. Im starting to think that once you get one fistula then you get more, is this true? I know you said Immuran helped to close one for you but did you devolpe more? I am so sorry to hear about you having to have surgery and having a permanent ostomy bag, this just shows me that I might be pumping all this medication into my body for nothing and can devolpe something worse (like cancer or what ever else remicaid can cause). I'm a little confused as to why the fistula can't just stay there and drain if it's not hurting me?

I am also really worried about remicaid and humira because I have 5 kids in the home who are alwayd bringing home some kind of virus. I am really wanting to ask the doctor to put me on steroid so the severe inflamation they say I have in the ilieum will calm down and I can stop running to the bathroom so much. I just feel I need a little break from not feeling well while I try and figure out what I really need to do. If I could have at least 2 months of feeling almost normal I would love it. I just want to stop laying in the bed and go out and enjoy some time with my kids and I heard steroids work pretty fast to get the inflamation down. If the doctor agrees to steroids (which for some reason I don't think they will, maybe because Im not screaming in pain) that will give me some time to feel a little better (I think), maybe put on a few pounds that I really need, and be able to go out with my kids and not have to worry if I might end up going to the bathroom on myself. I also heard it takes time for remicaid to get approved and they need to give me something in the meantime. I am also confused because a nurse told me in the hospital that remicaid has some kind of thing that they will give you the medication for free if the doctors let them know everything I have tried and it hasn't worked, well I have been on nothing but asacol for almost 3 years and that doesn't seem to be doing anything because I have had this inflamation in the same spot all this time.

Im sorry this is so long again, I am just really worried. I will see the GI doctor tomorrow and I plan on pushing the steroid until I make a decision but want to know if that is a good idea. I do plan on making a decision soon (because this has been going on for to long with no help) but I would also like to get this inflamation down asap so I can stop running to the bathroom and I can get out of bed and have fun with my kids. I live in New York and my doctor is in Long Island, i was wondering if the only way they will start you on steroids is if your admitted into the hospital or can the doctor write a perscription tomorrow? I am so scared of all these medications but I am at the point where running to the bathroom, weight loss, not enjoying my life, and being tired all the time is really getting very depressing and is also effecting my children.

Can someone PLEASE tell me if my plan could be a good idea to bring up to the doctors tomorrow.....Thank you so much and I'm sorry for sounding like a big baby but this has been going on for so long and must be getting worse if its causing a fistula and mild inflamation up in my rectum.

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 5/10/2010 8:07 AM (GMT -7)   
If YOU feel like it's a good idea- then it is. If you feel like it's honestly the right thing, then you should do it. Put aside your insecurities of what the doctor will think of you- you're trying to do the best thing for your body.
They can prescribe you steroids right then and there. There are two steroids they like to prescribe for Crohn's- Entocort (which takes more time to work, but has less side effects) and Prednisone (which has more side effects but is generally stronger and gets working faster).

I was on Humira for a little bit this year. I can honestly tell you that I didn't get any colds or flus while I was on it. The risk for cancer is minimal...actually, they don't actually know if it's the drug that increases your risks or the fact that you have Crohn's. Humira made me feel SO much better. It took away all of my joint pain, and for once in the past two years, I felt like a normal young person. There are side effects. Most people experience pain at the injection site (which you don't get with remicade), a flu-like feeling that lasts for a couple of days afterwords, fatigue and loss of appetite. Those usually go away within the first 5 days after your injection/infusion.

I know you're worried and this is scary. Things WILL get better. You just have to trust that the doctors know what they're doing and that they're going to take care of you. Just keep hope. You will go into remission.-- that's what I chant to myself in the bad times.

(((hugs)))
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Off every med while the doctors contemplate my diagnosis.

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