Prednisone

Much to my dismay I am back on Prednisone (steroids). I had been on prednisone for several months and was just hitting my "1 month steroid free" mark when my Dr.'s put me back on. My remaining rectum is not doing so well, actually it is horrible. My GI doctor wants me to get it removed but there is no way that is happening. I am not physically or emotionally ready for another surgery, not to mention the fact that we are moving in less than 2 months. Todd and I have really thought and prayed about it and I think everything will be ok, I am going to take this round of steriods and then see what happens, hopefully my rectum will just heal up. Anyway, so yes I am on steriods and so I will either be getting very moody here in a couple of days, or I will be getting a fat face...hopefully not both. Either way, I would apprectiate any comments toward the fatness of my face to be kept to ones self, I am already paranoid about it and when people come up and tell me how horrible I look (which has happened more than once) it really leaves me a basket case. And if you tell me something normal like "I fed my dog this morning" and I bust into tears, just walk away knowing that I am a nut case on drugs and that it will pass, don't try to comfort me, it will just make it worse. Thanks everyone for your help and support!!

Sick again

I am still out of the hospital and as far as my innards go I am doing quite well, unfortunately I have been stricken with regular person stuff. Saturday I came down with a urinary tract infection, Monday I went to my GI and was told I still have active ulcerative colitis in my rectum and the small part of my colon that is left, so my blood levels are sky high and I need to be treated. Then yesterday I got the flu, sorry to all of you I spoke with Tuesday night, I hope I didn't get you sick. So this really hasn't been my week, but I guess it is comforting to realize that 2 out of the 3 illnesses are easily gotten over. I just feel blessed to still have family in town that can watch Anna so that I can confine myself to my bed.

So about the 3rd problem, my little bit of leftover colon that is causing me big problems. I have the little bit left so that sometime in the future I can get a J-pouch if I want to. This part is still infected with ulcerative colitis and I was assured that since nothing is going through that part of my body it would heal and not cause any problems...I should have known better. So we are treating it and I haven't gotten better yet but I am not losing hope, I think it will take time but things will heal. That's what I keep telling myself anyway because if it doesn't heal I will have to get it all removed and that will kill the possibility of having a J-pouch, which wouldn't be the end of the world, but I like to have open options. Only time will tell.

03-05-08...Where did February go?

OK so I know I have failed on the whole posting thing, I just haven't felt like blogging. I just realized that I totally missed the month of February from being in the hospital, it was a cold one though so I guess that's not that big of a deal.
Well I am out of the hospital again, for the 4th time in a month. This past stay my surgeon decided to operate again and see if he could figure out what is going on with my body. Unfortunately he couldn't. He said he pulled out my entire small intestine and looked at it and it was absolutely beautiful, which made him happy but frustrated all at the same time because now he has no idea what is wrong with me. I met with my GI's on Monday and gave them the update as to what was going on and they said that it is rare but occasionally they have patients that just take a long time to adjust to the ileostomy and the surgery, they have never had one quite as bad as me but they feel confident that is all that is the matter. In time my body will adjust and everything will work normally, well that sounds great but what am I supposed to do until then?!?! They informed me my only job was to gain weight (and stay out of the hospital). I have lost 20lbs in the past few weeks, besides being skin and bones my hormones are all off because of how much weight I have lost. I have been having these hot flashes like crazy, I will be sitting minding my own business and the next thing I know I am drenched in sweat! It is absolutely horrible, I feel for any woman going through menopause and dread the thought that someday I will have to "make the change". So I am recovering from my surgery ok, it frustrating to be recovering all over again but I am blessed to have so much help to make it easier. I still have to be careful with how much I eat and really try to listen to my body, I have thrown up the past couple of nights, but even so I can tell I am getting stronger and things are healing. I still am so glad I had the surgery, I just wish I could be back to normal. But, spring will come and I know everything will someday be pleasant again!

Quick Update

I know that I haven't been very good at posting lately so let me just sum things up quick. I finally got to come home Tueday night, after spending 8 days in the hosptial. I was happy to be home because Anna's birthday was on Thursday and it was important to me to be home for her party. Anyway, that went well and then Friday night the same old story started in, so back to the hospital we go, after some tests and all that I am headed back into surgery today and 1pm. Although it is gong to be kinda like starting all over, I am glad to be going in and getting things fixed. Hopefully I won't have any more problems after this. We will know more after the surgery, so stay tuned!

Set Back

So I wrote this post several days ago but never got it published, now that I am publishing it I realize that I greatly abused the use of exclamation marks, sorry!

I know that alot of you think that I am some sort of super positive person but I think after this post your eyes will be opened to what a whiner I can be. So I am back in the hospital and feeling a little frustrated and discouraged. Sunday night I began to not feel good, the same indigestion/bloated feeling I had the last time I had a bowel obstruction. I immediately began to drink water, I knew that I had already drunk plenty that day, but I didn't know what else to do so I just started drinking. Well to make a long story short the beautiful labor pains came back and Monday afternoon I found myself again being admitted to Mercy. I was less than pleased. So this time we are blaming the pain on scar tissue. I guess scar tissue got on my small intestines and made them less flexible, causing a bowel obstruction. This is the very uneducated explaination because I really don't get it myself. So it has been 5 days and nothing is happening! I am still on pain medicine and just waiting things out, I feel like I am never going to get out of here. I was in and out so quick with my last bowel obstrucion I figured this would be the same way, well I thought wrong! The Dr. is having a PICC line put in today, although I read about PICC lines I really can't explain what it is except to say that it is the mother of IV's. With a PICC line they can give me TPN (liquid food) to buy me another week of waiting before having to do surgery. I love my life! So hopefully things will start working soon and I can get out of here, I just miss my baby so much! Anway, thats the update.

Slowly but Surely

This is how I am healing, slowly but surely. I know that I am 100% better now than what I was 2 weeks ago, but I am feeling really impatient to be totally back to normal. Although at this point nothing is really painful (I haven't been on pain medicine since I have been home) my incision is still really sore, especially by the end of the day.

My mom left today after being here for 2 weeks, there is no way we could have done this without her. When preparing for this surgery I really didn't think that I would need the full 2 weeks to recover, ha! If she would have volunteered to stay another week I would have agreed in an instant. Although I am now able to lift Anna I can't lift her alot and I get tired really easy, I rely on my nap every afternoon to keep me going. I am glad that besides mom work, which is alot of work, I am not having to return to a 40 hour a week job. So I guess what I am trying to say is I would encourage people to expect at least a full 2 weeks for recovery when having this surgery.

Home...again!

So I finally got out of the hospital last Tuesday. I was suppose to come home Monday but when they gave me solid food it didn't settle too well. I have to admit that I might have overdone it just a smidge for having just gotten out of surgery, but I was hungry! So when the doctor told me to go ahead and eat what I wanted for lunch, that is what I did. I had a hamburger, french fries, macaroni and cheese, potato salad, chips and salsa, and a piece of brownie cake. Take my example and learn from it, when eating solids for the first time start light! So I had to stay for an extra day and wait for my small intestines to get it together. Coming home was great, I was pretty sore and tired but all and all doing well. Now for the home....again part. After getting home I started to not sleep very well, I was having stomach cramps and indigestion type problems, but it only happened at night so I didn't think much about it. However, Saturday I woke up feeling like my stomach was about to explode. I really thought I had gas and so settled in on the couch, confident that it would evetually subside. It wasn't very long however before my gas cramps turned into top notch labor pains, I was expecting to deliver a 10lb baby any minute. I just stayed in my fetal position and breathed my way through each one until Todd came home (he was helping someone move) and immediately called a personal friend of ours who also happens to be a surgeon. Thankfully our friend was generous enough to come over and check me out before advising me to get an abdominal x-ray to make sure I didn't have an obstruction in my small intestine. Well I was pretty determined that I didn't want to go back to the hospital so we went to a quick care clinic for the x-ray. After waiting a couple of hours and watching all these seemingly perfectly healthy people get called back, all the while squeezing Todd's hand and concentrating on my breathing during my "contractions" it was finally my turn. I have to say that through this whole affair the Lord did have mercy on me, as soon as they showed me back to the room I immediately started to throw up, I was so grateful that I had a trash can to throw up into in private, instead of being out in the lobby and throwing up everywhere. By this point I could hardly walk so I would never had made it to the bathroom had I been in the waiting room, it would have been super embarrassing. Anyway, I got my x-ray and did in fact have an obstruction and a white blood cell count of 23,000 (I guess normal is 5-10,000, so on to the hospital we go. By this point it was 4pm and I had been in severe pain for the past 8 hours, I didn't care what happened I just wanted to be medicated. Todd dropped my off in front of the ER, I stumbled in and practically laid myself on the counter begging for medication. I think the nurses must have thought I was nuts because I know I wasn't making sense, I could hardly think, but they were very kind trying to figure out who I was until Todd got there to explain everything. They immediately admitted me and it wasn't long before I was happily medicated and floating somewhere between la la land and reality. It was blessed. 10 hours of excruciating pain, that is a long time, at least when you are in labor you are getting something out of all that work, I only got sore muscles. The sad thing is it would have been longer had our friend not told us to go. I don't know why I am so stubborn but I just hate going to the doctor, I would rather tough it out. Stupid. Anyway, I was in the hospital for just over 24 hours, I got home about 10 o'clock last night feeling much better! Most obstructions like mine will resolve themselves with time and plenty of fluids, but sometimes the Dr. will have to go in and remove it, thankfully I didn't have that experience. You are probably all wondering why this happened, sadly enough they tell me it's due to dehydration, who would have thunk it. I had heard that dehydration can be an issue after having this surgery because I no longer have a colon to absorbe water so have to drink a lot more; but I thought I would just have the normal dehydration signs, fatigue, dizziness, headache, I didn't realize that my entire small bowel would shut down. People should be more specific when warning about dehydration and exactly what to look for. I guess my first sign came those few nights after getting home when I started having stomach cramps and indegestion. So my good husband has threatened me within an inch of my life if I don't drink so much water everyday. He does love me, that I don't doubt. Anyway, I know it has been a novel but now I am updated and will bopefully be better from here on out. Thanks to everyone for your support!