Wednesday, April 14, 2010

Counting down the days

This is the first times I got "out" after surgery. We took grandma to Lady Bird Johnson Wildflower Center with my mom and Katie before she left. The day was one of the hottest we have had so far all spring, and I wilted very fast! :) It was still so nice, and all the wildflowers this year are just beautiful because of all the rain we've gotten. David sat with me half the time in the quaint little cafe there while I hydrated and got cool.

It was a special time with my family!

In my last blog update I explained to you the extreme pain has been for me, and wont repeat that in detail. All I can say is that the infection is continuing to grow. It is spreading further down and around my stoma, and changing the bag sometime is unbearable. David has been such an angel and is always so calm and patient with me. I don't think I could have done any better!! Something else that I have been battling is sleep. For some reason my nights have been restless. Often I lay awake for 2 hrs trying to be patient to fall asleep. But once I do drift off I wake up every hour and just can't seem to dose into that deep sleep. On top of it all the pain has its part of waking me up several time at night as well.

We are to the point of counting down the days till my next surgery. Of course though there are pros and cons to everything! The other night when I couldn't sleep I was on the computer reading for a long time about the long first weeks after the Take-Down surgery. I have to admitt that it have got me kinda scared. I am not looking forward to going through it all. I read that in a way it is harder mentally at times than physically. That for the first few weeks after take-down it is a sort of dea ja vue of living with the Colitis again. I know i can't get to the other side without going through it, but I am scared. Even in the know, I say Bring It On!! :) (well you can ask me about that in the middle of all the "butt burn" :) haha)

My doctor has me on some colesterol medicine that I am taking solely for the side effects. It is supposed to help thicken the stool and decrease the acidity. So we will see. My apt with the surgeon is in 6 days, and that is something else I just wish I could sleep through! When your doc tells you up front to take to strong vicaden before the apt, you know its going to be bad! Told David I need him there for me....."I don't want to sit there and watch you be in pain" he says. "Too bad!" I really need the morral support!

I have a dr apt tomorrow with my obgyn to talk to her more about the ovarian cyst they found in the MRI. I am very interested in finding out more about it, and also how much more of an effect it can have on me getting pregnant. I know chances are very low already. The surgeon told us that after 3 major abdomonal surgeries there is so much scar tissue in and around all the female organs it is hard to concieve. Now on top of that I find out about a large ovarian cyst. Its hard! Its so hard! David and I talk about it all the time and how different our lives would be if JoLynn were with us. I miss her so much my heart aches!! Will I be able to have another child to hold in my arms?....Only the Lord know.

Wednesday, April 7, 2010

Four weeks out...

I know that this post has been long in coming! Believe it or not about a week ago I sat down and typed about half of a blog update and then lost internet and lost everything Id written. And after that I couldn't make myself sit back down and type it all back. So here I am :)

Its been 4 weeks since my surgery. I am physically doing very well! I am getting around good, and feel stronger pretty much every day. I had a walker to help me around the house for the first 2 - 2 1/2 weeks, and whenever I would go out I would use a wheelchair or a riding cart to get around since I didnt have much strength or stamina on my feet. I made myself start building strength by getting around my house without any help first. At first it took me a while to walk anywhere, but after time (and lots of pain meds) I am free of all help. When Im out I dont use anything. I do get tired alot faster, but thats ok. I think pushing myself sometimes is good.

My grandma has been with me for the past 3 weeks and it has been such a blessing to have her here helping us! I don't know what shape me or my house would be in if it wasnt for her! I am back to being all alone though since she went home yesturday. Its up to me now! :)

Although everything sounds great up till now, Its really not. I am having some other problems that have set me back alot! I currently have a loop-end stoma which very different from the end stoma I had for the first 6 months. For those of you who really dont understand the difference it would be a waste of my time to try and explain it to you on here. Loop-ends are often much more problematic than simple ends, and...well I am having ever problem in the book with mine. Essentially mine ended up healing upside down. Instead of the bowel opening to be on the top where it can flow overtop the stoma, my opening in underneath, and the stoma is pushing the bowels straight down and onto my skin. Because of this it has been a nightmare trying to get a seal with the bag. I went last week to the hospital to see my stoma nurse. She gave us four different things to try, and every single one only made my infection worse and spead bigger. It has only been four weeks, and I couldnt begin to tell you how bad the infecton is getting. So as each day I get stronger, my skin and infection around my stoma only gets bigger and so much worse. The pain is unbearable at times, and sometimes I don't know how i am going to make it another day. But still the days go by, and still it gets worse.

I could explain the pain as a continual burning of acid, but thats hard for you to imagine. So maybe this...imagine 3 or 4 fire ants sitting on your stomach and it feeling as if they are constantly eating away at your skin and there is nothing you can do about it. You just have to let them hang out there...eating away. Thats kinda what its like at all times, and then at times its so much worse! Like last night. At this point, I have a big open wound that ever day I am trying to clean and then after cleaning (which is so very painful) I try to put glue or sticky stuff on top of it to reattach the bag. This is where the problem is lying. It is almost like trying to use scotch tape on a wet surface. No matter what you do, its just not going to stick. We went through 3 good bags last night....on off on off on off. Finally with the fourth one we gave up. As I sat there and looked at it after many tears and so much frustration, I began to pretty much laugh. I could see and feel the output stream right down and under the seal we had worked so long and hard for. I looked up at a very tired husband and said, "what are we going to do?" Now, I am not typing this for actually feels good to write it out. To put what Im facing right now down on paper.

Maybe you are wondering what the doctors can do for me. That surely there is something that they can do! Honestly there isn't. Its just something I am going to have to deal with till I can have the thrird surgery which is the let-down. Yesturday I had my first post-op apt with my surgeon. He right away agreed with us that it is pretty bad and that he is willing to move the surgery up by a month. This means I will be having my third surgery in apx 4 more weeks. This sounds like good news, and I know it is, but all my mind is wrapped around is the 4 MORE weeks of this pain and misery that I am facing right now. I really dont know how much worse I can get, and how much more I can handle. The pain wears on me so much, and I am finding myself very down every day. I think that right here and right now I could call myself depressed. I just want to go to sleep and not wake up till its all overwith.

Im sorry that this update is all about hurt and pain. It is to you all, though, who I can tell the truth. I know I have so many people out there praying for me and rooting me on. It is those small things, the texts, the comments, the letting me know they are there and praying that really gets me through every day. I really appreciate it!

Ps. I really really do appreciate the comments, so keep them coming! :)