Posted 5/8/2008 3:55 PM (GMT -6)
Since my hospital visits and taking medication I had decided to keep a log of my experiences. The reason I found these forums was because I wanted the stories of others to help me through my own experiences. I felt like I was moving in unknown territory and I was terrified. So, I'm hoping that this post will help those that need answers and will prompt others to share their own experiences. I know that most of what we post is for questions concerning problems or a place to vent to others who actually understand, but I really feel that things of this nature need to be said because I know that other people will stumble across a forum like this simply looking for the words of another who has gone down the same path. With that said, here is what I've written of my own experiences so far(please forgive their lack of formality as I wrote it rather quickly):
I'm writing this for those who are going through what I did. It helped me to read the stories of other people who had these things done, but I could never find enough information. I'm writing this in the hopes that I can help others cope and ease any fears from unknown procedures and medicines.
Starting approximately two months ago symptoms from my mystery illness became very severe:
constant diarrhea-2 months straight
losing blood every bowel movement-a little over a month
bowel movements up to 10 times a day not including night-almost two months
sores in the mouth-sporadically
unable to walk or stand for more than 5-15 minutes-a month and a half
weight loss-my normal weight is between 115 and 120. I was down to 100 pounds by the time I had my testing done.
That's the gist of it anyway. I've never felt so miserable or helpless. I was really worried about what was going on inside of my body.
I went in to a GI who gave me an endoscopy and a colonoscopy in tandem.
Monday: Preparation for the procedures. I had to drink 3 ounces of a laxative called phosphosoda(1.5 ounces at night and the same the next day) in order to clean my system out. I was worried about this because I had already lost so much fluid, blood, and weight in general from the persistent diarrhea. I started the phosphosoda at around 7 pm, and hour later than I was told to. The first flavor was the lemon and ginger which I mixed with half a can of regular sierra mist. I have never tasted anything so disgusting in my life. It has that horrible sweet aftertaste you get in artificial sweeteners, but, and this is even worse, it has a thick salty flavor underneath it that clings to your throat and uvula making you want to vomit it right back up(I nearly did i confess. The excess saliva already began). It took me a little while to get the liquid down, but I did and did not finish the entire glass. I had enough to affect me the way that it was supposed to and began having clear, yellow tinted liquid come out right away. I thought this was a good sign but later on in the evening the regular darker colored feces was the result so of course I was frustrated because I was hoping that I would not have to follow through with the phosphosoda the next morning. At night I still saw a cloudy green dust and debris in the latrine which stressed me out just a little bit. I slept on and off and woke up at 6:45 in order to continue with the phosphosoda. FOR ANYONE HAVING TO TAKE THIS: DO NOT CHOOSE THE CHERRY FLAVOR. I don't mean to make such a big deal out of it BUT, the lemon flavor is obviously going to be less sweet and therefore less offensive to the senses while it is in the saline, salty laxative. Cherry is the worst idea. I couldn't finish even half of it. I'm grateful that I didn't need to in the end because**********this should be noted***********the result does not have to be clear like water. The nurse told me that a little bit of debris and coloring is still fine. It just can't be like your 'regular' bowl movements.
I went into the hospital at 12:30 a little bit nervous. My fears were either that I would respond negatively to my sedation and would not be able to wake up OR that they would not properly suppress the pain or keep me asleep enough so that I would wake up and feel everything.
I had read the experiences of other people claiming they remember waking up in horrible pain and asking that the doctor just wait, and I was terrified that this might happen.
What you do when you go in is you're escorted from the main waiting room to a smaller preparation room right before the procedure is done. A nurse will ask you some questions about symptoms, any drugs you're taking, whether or not you smoke/drink/might be pregnant and so on. You are then asked to sign in a few places.
After this you will have a tourniquet put on your upper arm and rubbing alcohol on top of where your vein is. It goes without saying that you will have an IV put into your arm. I am personally not afraid of needles at all so I've never minded this part. It only stings for a brief moment and then it's in your arm. In this kind of procedure you will generally have the needle left in until they remove the entire IV after everything is done.
After these things are done you remove your pants and underwear(I was allowed to keep mine on because I had started my period that day. They simply removed them when it was time for the colonoscopy). You put on the hospital gown and are taken to the room where the procedure is done on one of the hospital beds.
I had to a wait a little while because my doctor was running just a bit late so I had some time to allow myself to become even more nervous. The nurses were extremely kind and talked to me about school in an attempt to distract me and calm me down.
The first procedure was the endoscopy. You are prepped for that by having something sprayed on your throat to numb it. It is very strong and does not taste good, but you have to swallow it and it works immediately. You might think that you are unable to swallow because of it but you can, it's just that you won't realize it because it's numb.
After this the doctor came in and I remember the nurse saying she was going to put the IV in my arm. As soon as she said it I was out. For my IV they used versed and fentenol. These keep you under a conscious sedation so you don't have to worry about being completely out. The procedures, I was told, took only about 30-40 minutes together. As I remember things though I fell asleep immediately and woke up right after in the recovery room where my mother was waiting with my things. I was given my clothing back and given a wheel chair. They gave me pictures of the affected areas of my small and large intestines and explained that I most likely have Crohn's and a little bit of a hiatal hernia. The doctor prescribed 40 mg of prednisone once a day and mesalamine which I had to take three pills twice a day.
I slept the entire day when I returned from the hospital and was instructed to eat only liquids at first and then progress to soft foods. I had a lot of water and then tried eating chicken noodle soup though I only managed to drink the broth for the most part(I put crackers in it and allowed them to soften so I might have something more in my stomach). I was starving really, but I also had a sore throat so it was extremely difficult to eat. I had this before I went in for the procedure and I was told I might have one because of the endoscopy. It's two days later and it is subsiding so I'm hoping to be better from that soon.
The day after the procedure.
9:30 am-I ate scrambled eggs with american cheese and organic apple sauce on the side. I took my mesalamine with this meal and then went back to bed.
approx. 12:00-I woke up and ate some more chicken noodle soup with crackers while watching La Vie En Rose. This is when I started prednisone. It's difficult to swallow at first I will confess. The mesalamine is very easy, but prednisone has no slippery coating and dissolves quite quickly so you will taste it. The taste is not pleasant at all but you will get you used to it.
******NOTE****** May 7 is the first day I began taking these medications. I felt 99.9% cured by 8 pm I kid you not. I was well enough that my boyfriend and I were able to go out WALKING for the first time in two months. We went to Wasabi and ate some of the most delicious sushi I've ever had. They put cream cheese and smoked fish in it and then lightly fry it(not enough to make you sick).
9:30 pm-I took my mesalamine again feeling absolutely wonderful. I ate more scrambled eggs later at night and also ate three butter pecan cookies(wheat and gluten free from Pamela's. DIVINE) throughout the course of that day.
Later on at night I had the second bowel movement of the day. Emphasis on the second in comparison with the usual ten a day. I was worried that constipation had set in immediately and that I was still going to have trouble with eating, but it simply took a while and the result was semi-solid stool(in comparison with months of pure red and brown liquid). It's still a little bit painful to use the restroom, but I can't expect 100% recovery in only one day. I was so happy that I had to keep myself from crying because of all of the things I was able to do. I know that steroids can be potentially problematic, but I am very happy with the results so far.
9:45 am- I ate half of one of those cookies and some apple sauce in order to take my three tablets of mesalamine and then went back to bed. I had a a few bowel movements, but I had eaten a lot more than I was used to so I imagine that it took my body a little bit to get used to getting rid of it.
12:45- I ate scrambled eggs and more cookies. I took my prednisone again but it was much easier. The taste is not good, but I would much rather deal with that than Crohn's. I felt a little pain because I had to use the restroom, but I am over that and am feeling great again.
***POTENTIAL SIDE EFFECTS SO FAR***
Hiccups-I did not know that this was a side effect of prednisone, but I am having them sometimes. They last longer than usual and are a little bit uncomfortable. If this continues for the next two weeks I am told I can go in to the doctor and they can fix it.
It's only been about two days so I can't say if there are any other side effects. I'm extremely hungry of course but I attribute this to the fact that I've been living primarily of of broth, crackers, water, and some noodles and chicken in my soup.
I really don't want to get moonface. I took a picture of myself today to use as a comparison on a week by week basis to see if there is much physical change. I need to gain weight but am worried about gaining too much so I am going to be very careful about the content of what I eat.
Everything is wonderful so far. I know some people do not like prednisone and I can't say too much yet because I've barely used it, but from what I've heard from people in my own family it works wonders and I have to agree. I have not felt like this in months. I can actually walk around in my apartment, open the car door by myself, make my own meals, clean, read(working on Cormac McCarthy's 'The Road' at the moment), and so on. I know that you will read a lot of negative testimonials online, but I want mine to be taken into consideration as well.
I haven't gotten my biopsy results back yet so I don't know the full extent of what I have. I'm not going to allow myself to get my hopes up very high, but I am feeling positive and I know that this mentality will help me get better. I hope that reading this will benefit someone in need of information, or someone is simply afraid of the procedures or taking the medication. I wish the best for everyone else sharing in this experience and I hope to have results within the next few weeks to give others an idea of what to expect.
I'm putting a few pictures below for record's sake and for those that are wanting more pictures of what certain conditions look like. I know that I wanted more when I was researching on the internet but could not find any.
The shape of my face at the moment:
I will try and have the endoscopy and colonoscopy pictures up a bit later. I will also attempt to keep a good update as far as side effects and diet trial and error goes.