Tuesday, April 20, 2010

Surprise Caller

Just call me Sarah, I am to young for a Mrs...  It has been around 7 months ( I think) that I have spoken to my surgeon in Cleveland and he pulled out the "hello, Mrs..."  His hands have been in places I don't want to know so I think we can be more personal then Mrs.!  Just a quick 'checken in' to see if I have 'control' of my b.m.'s (I very rarely have nighttime accidents anymore, just deal with the ever annoying urgency with pain and incomplete emptying. Now that I have written that down it is sounding like pouchitis??) and wondering if I was thinking of going to 'the bag'.  Nice!! 

Just want the pain to stop in this darn pouch. I wonder what it would be like to not feel pain in my butt every day!  No solution from Dr. surgeon on that one. It is just a waiting game now. Waiting to get to the end of this raggedy rope and call it quits.  I can hold out some more, I really want this to work...

Wednesday, March 31, 2010

It has been two years...Happy Anniversary!

Two years ago today I had my diseased colon removed! A lot has changed in those two years, physically, emotional and spiritually. Looking back today I feel a sense of loss but with an added excitement for what is yet to come, but I would be lying if I didn't acknowledge that today is kinda sad. Sad because my UC got to the point of no return. My life didn't follow 'my plan' and that I was 'that sick' that I needed to have a major organ removed. Even so I am very thankful for modern medicine that I am here today remembering.

Here's to what lies ahead...


Saturday, March 27, 2010

Hello again

Well it has been almost a month since my last post. To be perfectly honest, I have been avoiding having to tell all of you my latest drama. But I started this blog to chronicle my life without a colon and that means sometimes things get, well pretty shity!

February was a big month of firsts for me. First time to get a full blown partial small bowel obstruction then quickly upgraded to an ileus. First time in U of M hospital with my new GI. First time with the dreaded NG tube. So there ya go. Just when I thought things were going good, my luck showed up!

I am going to give you all the little details like how the nurse missed inserting the NG tube into my stomach and threaded it back up and out the other nostril to only then get stuck before riping it out. And how the pain was so bad from the ileus that I wanted to be knocked out and all of the nurses in the ER were convinced that I was taking to many pain meds at home. *I wasn't on any pain meds I just have a high tolerance now due to the 4 surgeries in 2 years bitches!!!  But tonight I don't feel like going into all of that emotional crap! I will update that story another time with a few more miserable details.

It is definitely challenging my endurance and sometimes I just want to give up this J-pouch. But, long sigh, I am still holding high hopes that this will work and my life will return to some sort of normal.


Wednesday, February 3, 2010

It's Feburary already!

Yay, it's Feb!! Just a little bit closer to spring. Its been busy here on the home front with many birthdays in Feb and March.  Nice to have something fun to plan for during the cold winter months.  Then again it is the perfect time to start thinking about my summer garden as I am getting floods of plant magazines in the mail.

I have decided to start yoga as close to 5 days a week as I can get. I still have to force myself to workout~I hope it gets more appealing as I get more fit.  It has been on the warm side today so I decided to take my youngest outside and pull him in the sled around the yard (2 acres) a few times instead of doing the treadmill. My boots are darn heavy not to mention the over insulated baby in the sled.  It was well worth the sweat seeing my sweet 2 year old smile ear to ear as I pulled him up and down the 'hill' a million times and over to check out our bees and chickens. Definitely the most fun and memorable day of the week!

I am definitely getting stronger, but at this point working out is just that ~work and I don't look forward to the exhaustion that comes afterward. Working out has been less frequent then I had planned thanks to this darn proctitis and the treatments with the flagyl and bactrim. I am on my second round of flagyl and bactrim and it seems that on the 4th day of treatment my GI symptoms have improved but these awful migraines start.  It is really hard to function after the 3rd dose (taking it 4X's/day) of the day and continues to increase until the next morning when I have start all over again.  The results from the first round didn't last more then 2 weeks or so and I am really praying that with this extra boost the freedom of pain and diarrhea lasts.  5 more days of antibiotics, wish me luck ;~)

Until the next time....Sarah

Saturday, January 16, 2010

No more pain!!!

Well today I have very exciting news to report! Since starting the flagyl and bactrim antibiotics I have seen a drastic change for the positive in my reported symptoms. When I started the meds I was running to the loo 10+ times a day and having accidents at night and the constant pain in my bottom. Just a few days after starting the cycle the pain was noticeably less and I was able to 'hold it' and walk to the bathroom instead of run. At first I didn't want to get my hopes up to high as this slight improvement has in the past only lasted a few days, but everyday I seemed to be feeling better! I continue with the nighttime canasa and this morning finished my last bactrim. I had to stop the flagyl a few days early due to horrible migraines lasting the whole 7 days I was on it. Migraines and the metallic taste, dizziness, insomnia and slight nausea for 7 days while trying to keep up with kids was more then I could take. After calling my GI several times she agreed that I could stop it (flagyl) and continue on with the bactrim until it was gone. I am still praying that the 7 days was long enough to get rid of the bacteria overgrowth!

Thanks to all of you (some complete strangers!) who have supported me and held my hand through all of this trial and error! I know that everyday brings new obstacles but also new joy, for everyday is a gift! Thanks for walking with me and reminding me that I am not alone. I feel that this journey is one that I would not have chosen for myself but that has challenged me and changed me in ways I could have never known. I would hope that if you find yourself in a place of uncertainty at what a colonless life could bring that you would gain a new strength and a little hope in reading my story. My life has been great, and even though I have found myself in a rough spot it is getting a lot smoother. Actually, I LOVE my life and can't wait to see what tomorrow brings!

Hey, you know that song 'my eyes don't cry no more', I'm singing it a little different today.~ "My Butt Don't Hurt NO More!!!" Yea, I know dorky! But it don't and I am so darn happy about it!  


Thursday, January 7, 2010

One year down!

Happy Anniversary to me and my "J"!!!
One year down, a lifetime to go!!!!!

Tuesday, January 5, 2010

TMI, Not nice but necessary

How exciting~! I heard from my GI's office today on the results of my breath test! Apparently the test was positive for high levels of bad bacteria in my small intestines, yay!!! I know that sounds strange to be excited over a positive test, but we can fix! Tonight I started a 10 day, yes 10 day, cycle of flagyl (anti-fungal) and bactrim (antibiotic) and that should do it! I am happy to tears and full of hope. I can hardly remember not having pain in my bottom (j-pouch) and watery diarrhea! I think its been close to 3 years ago since I have used the loo without fear and pain. Its funny how time seems to race by and yet it seems like yesterday that I saw the mucous for the first time closely followed by blood, pain and then the dreaded diagnosis, ulcerative colitis.

Just to update you on my biopsy results, they came back as chronic proctitis and some kind of pouch deformity. Proctitis is an inflammation of the anus and the lining of the rectum (I don't have a rectum. I think for me its the area between my j-pouch and where it is connected to my anus~a few inches maybe?), affecting only the last 6 inches of the rectum.  Symptoms are ineffectual straining to empty the bowels, diarrhea, rectal bleeding (don't have that) and possible discharge, a feeling of not having adequately emptied the bowels, involuntary spasms and cramping during bowel movements (and all the time), left-sided abdominal pain (don't have that either), passage of mucus through the rectum, and anorectal pain (and add a fissure for me while we are at it!).  Yea, I know nice! I thought I got rid of all that when they removed my colon and rectum....they did take it all out, right!? So suppository city here I come! I now have added Canasa suppositories to the nightly regimen. Not to bad and I think after being on them for 5 nights now, something feels different. I can't put my finger on it exactly. I still have all of the symptoms just maybe a little less pain?  I still can't figure out what this deformity is all about. My apt with my GI isn't until March so I guess I will have to wait until them for someone to explain it to me. Hey, its only my body you know! I guess I can wait.

On to training for this 1/2 marathon in June. What in the heck was I thinking!?!

I started yoga in the a.m. and p.m. and am using the run/walk training schedule to get ready. I have a lot of time to train my body (and mind) and a ton of support so for #1 I can't back out now and #2 I will finish. Some good friends have registered to run with me and my husband and I am still trying to recruit anyone who shows interest so watch out! Really though this is a journey of accomplishments, I am excited to be healthy enough to participate!

Walk or run, maybe even wearing a diaper, I will finish this race. And when I do I will be surrounded with people who love me and have cheered me on since the beginning. ~Sarah