I hate my colon

She's Alive!

2010-09-16T11:12:00.001-07:00

It's true, i'm alive! I did end up going through w/the surgeries. Now, i've joined the ever so popular group of "I wish i'd done it sooner". I feel fan.freakin.tastic! Had the surgery on March 11, and the take-down surgery 6 weeks later on April 22. It was absolutely miserable, and I wish it on no-one. I never want to do it again. On the other hand, i'm SO glad that I did.

I had the surgery in UT, which is 7 hrs from where we live. My family is there, and we definetly would need their help. They all fall down! I hadn't had my Remicade infusions, so that my immune system could build up for the surgeries. Naturally i'm miserable. Can't hardly even walk i'm so miserable. The bad part is my husband had his appendix removed the week prior to all of this. I was counting on him to be there to take care of our baby. Not the case... We're in UT, he's not doing well still! The night before my surgery, he's still taking pain pills, and feel pretty miserable. THEN, my mom passes out in the middle of the night, and can hardly walk from lower back pain. THEN, the entire house gets the flu...OY! I'm thinking i've got to cancel my surgery! I've waited so long, and am finally ready, and i've got to cancel. My walls were falling down around me. At 5 am that morning, my dad comes in and wakes me up. Says, you need to go get this taken care of, we'll figure it out here. So, off I go w/ my husband, mother-in-law, and grandma-in-law. Strangely enough, I feel really calm, and not nervous. I'm READY! I think it's great that I didn't have any Remicade because it was do the surgery, or just kill me. haha As i'm laying there to go in, my husband is sweating, and exhausted. He looks green! Ugh...

I wake-up, and vaguely remember people coming in and out. Flowers, cards, loves, I don't remember much of the first few days. I DO remember my husband's aunt coming in the middle of the night, and sitting w/me. She said that my husband had been admitted that night, and is in the room next to me. I just remember saying "oh no.....and going back to sleep" haha He had a HUGE abcess, and they were draining it out. If it didn't go down they would operate. Eventually it went down, and no more operations for him. He did stay in the hospital longer than me though. haha So, we'd each go on our walks w/our IV poles walk to the other's room, push the door open and wave...then back to our rooms. haha It was sad, and miserable really, but of course we can laugh about it now. So, i'm worried about my poor baby w/people he doesn't really know, in a house he isn't familiar with. Breaks my heart. I had the surgeon take a picture of the stupid colon, and I had them tape it right in front of me. So, I could see it. Nasty lookin' thing. I worked in the O.R. for several years, and don't remember seeing a colon look that nasty. It was the talk of the hospital.

I was in the hospital for about 4 days...I think...maybe 5? haha Then went to my parents house. It was great to be out of the hospital. I was doing really well, and walking more and more. The day after I got out, I got a DVT! Ugh again! My left butt cheek was hurting pretty bad, and just got more and more uncomfortable. Then my entire left leg was hurting, and swelling. So, I had my mom call my dad from fire meeting and to bring his friends. They hauled me to the hospital, and got an ultra-sound. That pain honestly was more painful than the surgery. It lasted for weeks. It was from the bottom of my foot up. The ultra-sound tech couldn't find the top...she went all the way to the groin, and lost it. The next day, my dr. said that it's the worst blood clot he's ever seen, and was scared for me. My sweet dad spent the day w/me at the hospital, and hauled me back home that afternoon. So, that added heparin shots to my belly twice a day and coumadin. Getting my blood checked everyday, and all the follow-ups. phew!

I'm not going to talk much about the ostomy because I don't want to scare anyone. In MY case, it was horrible...lots of pain. For most, it doesn't seem to be much of a painful problem. I did talk a fellow UCer into getting the surgery though. I showed him all the stuff, my bag, and he scheduled it and is doing great now too!

Had the 2nd surgery, and am doing fantastic! No accidents, I have all the control in the world. I have a new life! I lived 10 years in misery, and I can't believe it's all over. It just seems like a long distant bad bad memory. haha I go on boats, I go to amusement parks, on walks, vacations, road trips...anything! If you can't tell i'm completely happy w/my decision to do the surgery.

My family was fantastic through the whole thing. My oldest brother came up after work every night, and played w/my baby....helped put on the bag...haha Everyone was involved, and I couldn't have done it w/out them. Through all the "shitty" nights, we made it. Good luck to everyone! If you have questions, please feel free to talk to me.

Say Wha?

2010-02-28T16:33:00.000-08:00

After the holidays and a relocation I just disappeared. Other than I really had nothing new to report. Now...that's a different story. The Remicade has made me about 50%. From 15-20 bathroom trips to 8-10. The urgency is the killer though! So, after much nagging from my family (thank you) I went to see the colo-rectal surgeon. He wanted me to meet w/an ultra-uber-goo-roo GI doc. Just to make sure. He said there's nothing like wondering after the fact if surgery was really necessary. Anyway, the ultra-uber-goo-roo dr. wanted to scope me. No surprise there. They all have to see first-hand what's going on apparently. I had a bone density scan and everything was good there. I'm "severely severely Vitamin D deficient." Then the scope! Ugh! I did get to try TriLyte this time around. That is much more pleasant tasting than Phoso-soda. If pleasant can even be used to describe anything connected to a colonoscopy.

Fast forward to the end of the scope because we already know what goes on there. The dr. comes out...looks at me and says "I think it might be cancer" Yup, the "C" word! My heart dropped. He said it didn't feel like cancer, but looked like it. He also said that he was only able to go 6 inches before my colon started to tear. There's so much scar tissue that it's smaller than a pencil. So, who knows what secrets my entire colon holds if the first 6 inches look like that.

The longest wait of my life started and lasted from Friday to Thursday. Luckily though those 6 inches don't have any dysplasia. The bad part...is i'm scheduled for a total colectomy on the 11th of March. In the back of my mind I think i've prepared myself for all of these things to happen, but it was still hard to hear. I walked out of Endoscopy, saw my dad and just started bawling. Something I don't ever want to go through again. My week of waiting consisted of getting things ready for the worst. I have a 10 month angel little boy who is attached to my hip. A wonderful family that means the world to me. So, I smiled and laughed and made jokes. I knew they were all worried and suffering so it wouldn't do any good for them to see how upset I really was. I am so thankful that it isn't cancer.

In a weird sort of way, i'm excited for surgery. I'm going to be able to have a life again! Of course the thought that i'll get pouchitis, or this won't really make anything better are there. I want to stay positive though, and think that it will. I can go on road trips! Not have to look for bathrooms everywhere I go, and spend the entire time in the store wondering if I need to start running. I can take my spare clothes out of the diaper bag! After 10 years of this disease i'm ready to move on! The hospital stay is going to be 5 days if things go well. Then 8 weeks later i'll go back for stage 2. It's going to hard, but i'm ready. It will all pay off and be better in the end....I'm sure of it!

Thoughts?

2009-10-22T12:55:00.001-07:00

I'm back from the eye dr. She does think that my eye problems recently have been from the UC. She also referred me to this web-site -http://www.docjaakkola.com/doc_biocommunication.htm

Anybody ever hear of this, or try something like it? I sent my email to the dr. explaining my situation, we'll see what his ideas for me are.

It burns, it burns!

2009-10-19T13:52:00.000-07:00

Have any of my fellow UCer's had eye problems w/this disease? For the last month my outer lids have been red, so I assumed allergies. I'm allergic to sage-brush and live in the middle of it. So naturally that was my first thought. I would just take Claritin, and put cream on my eyes everyday. This last week it got worse! We are talking, I can't see worse. Saturday night I was in SO much pain, we called an after hours eye clinic. Luckily the dr. had me meet her at her office that night. I have never had my eyes burn as bad as they were. I couldn't even open my eyes. Just writing this they are starting to burn! haha All I could see were lights.

She put the little letters on the wall, and even the astronomically large ones I couldn't see. The skin around my eyes was breaking up and bleeding even. She said that she thinks that it's auto-immune. That as bad as my eyes are, she can only imagine what my colon looks like. So I got a prescription for tobradex, $75 for a tsp....ouch. It has helped!!! Took a few doses, but I can finally stand up, and see things. I honestly was scared I might lose vision. So, have you heard of anything like this, or suffered w/it yourself? Has anyone tried acupuncture?

Baby Talk

2009-10-05T19:40:00.000-07:00

Ali asked about my pregnancy, so here it goes. It actually was really uneventful. I remember my first visit w/the dr. was not very encouraging though. Two docs talked to me about being in an active flare and pregnant doesn't have very good odds of a full-term baby. So for about the first month or two I cried a lot. I felt like it was just a matter of time before I miscarried again. Through the entire pregnancy I didn't let myself get excited, or think about the future w/a baby. I've always felt like if I get excited about something I inevitably get let down.

So, at about 18 weeks when you find out the sex of the baby, they did all the measurements. Everything was normal, and on schedule! After that I had ultra-sounds every month to delivery. Every month they measured everything and it was always good news.

Now for the funny part. I have to drive 5 hrs for my Remicade infusions. That means Imodium. We were on our way home, and the entire ride was SO uncomfortable for me. I was thinking maybe it's pre-term labor or something. Just absolutely uncomfortable in every way. We got home, and I was off to bed. By morning I couldn't move w/out crying. I had a horrrible pain in my lower right side. I thought well if it's terrible enough it may be my appendix. It went all day, and as long as I didn't move I was fine. So that took appendix out of the ruling. Any ideas yet? By night time, I was in tears. Off we go to Labor and Delivery. The nurse asks if i've gone to the bathroom today. I say yes, but that doesn't mean anything because I usually go 10 times a day and it's only been once. I'm not dilated, nothing. We head home, and I LOAD up on fiber, grapes anything I can get my hands on to give me shits. Who would have thought that someone in my circumstance would be constipated that bad!!!

Three days later I went into labor 3 weeks early. Needless to say I pushed for 4 hours straight and didn't get anywhere. I had a horrible fever. The doc came in and checked me, he said "wow, your vagina is really hot".... So I say, "why....thank you..."

Had a c-section, everything went well. They had to start an IV on little man because of my fever, had spread to himm and he needed some anti-biotics. Sad part is the IV was in his head. They'd tried everywhere else, and he was bruised all over.

The last 3 months were heaven! I was going to the bathroom like a person w/out UC. I'd go 1-2 times a day, and it wasn't liquid. BONUS! Didn't take long for me to go back to the old ways though. BOO

That's the pregnancy. Thankfully nothing eventful.

Yes please!

2009-09-30T19:50:00.000-07:00

I'm getting my long awaited Remicade infusion tomorrow! Who knew that having an IV in your arm for 3 hours could be something to look forward to.

The Remicade has gradually gotten less effective over time though. I'm completely horrified of surgery, but know that is my next step early next year. I worked in the assisting in the operating room for 4 years. The more I know, the worse off I am. When I had my c-section in April, I knew what was in the O.R. and on the back table, I just didn't want to see it. Every instrument they called for every noise they made freaked me out! I honestly am just better being left in the dark on certain things.

So, tomorrow at 10 am sharp I will be there w/my book in hand ready for the juice. Fill 'er up!

Cured?

2009-09-28T18:07:00.000-07:00

I was lurking on the j-pouch community site the other night, and a topic caught my eye. Once we get the colon removed are we cured? I've always thought yes. We are cured of UC, but not of our genetic tendancy to welcome auto-immune diseases. So it's safe to say we are cured yes? A guy said "no." He went on to say that they remove the organ that is being affected by UC. Well isn't UC affecting the colon, not your hand? Something about since they can't tell you what causes it, there's no cure. Well, we can't really pin-point what causes a lot of diseases... Basically a colectomy is the current treatment not cure.

I'm so confused by his statements. I feel like I just walked in a big circle. Where else would UC be a problem once the colon is out of the picture? Yes, the rectum but most of the time that is removed also. I plan on keeping my rectum, so I guess i'll always have UC, and never be cured...

Thoughts?

Where

2009-09-23T21:26:00.001-07:00

Do you ever wonder where you would be in life if you had never gotten UC? I've never really thought about it before... The weird thing is I was a different person before I got this disease, a different person 4-5 yrs into the disease, and a different person now. Not some drastic mutiple personality type of person.

Before I was on my way to bioch city. Everything I wanted was lining up beautifully, and I was getting an attitude to go with it. So in a way, I can be thankful to the UC for that. Thankful...ha! Then I came out of remission, and got mean. I was pissed! The depression came on. It just wasn't fair. I don't know exactly when it happened but I decided that I was over being mad, and tried very hard to find something to get out of this. I still definetly have those days where i'm mad, and wishing someone else could take a turn. Strangely enough this disease has made me more patient, understanding, and compassionate.

So where would I be w/out it...

I need a fix

2009-09-23T12:35:00.000-07:00

My Remicade infusion is just over a week away, and I want to die!! I started Remicade April of '08. It's the last ditch effort. Right after my colonoscopy was over, the dr. had the nurse start my first Remicade infusion. He said "you are so sick, I can't send you home w/out starting now." It has helped to the point of I wouldn't NOT get it. As far as being my saving grace...no. I was scheduled for a total colectomy last July when we found out I was going to deliver something other than a colon. So now that my sweet little baby is here, it's looking like early part of next year to deliver Lucifer. That's what I call "the colon"

I get the highest dose, as often as they'll let me. They've even tipped over the highest dose to give me 11 vials every 6 weeks. It takes a good week to kick in, and is gone at least a week before. I still RUN to the bathroom constantly, and don't dare go anywhere because of the urge. On a positive note i've gone from blood, mucus, 15-20 times a day to 8-10 not much blood, and no mucus. When the Remicade is actively working in those 4 weeks.

Ya know, I think I could live with going to the bathroom all the time, but the urgency is too much. Nothing sucks worse than getting up at 3 am to make a screaming baby a bottle, and shitting yourself. Luckily my fan-freakin'tastic husband was there to take over.

Blank

2009-09-22T21:46:00.000-07:00

I've been reading UC blogs for about a year now. They always have something profound to say. Yet, I have nothing... I love that others can express their feelings about this disease though. It is a tremendous help to me. So thank you UC bloggers!