Tuesday, December 29, 2009

Last Tests of 2009!

So yesterday I had the wonderful sigmoidoscopy with a few biopsy's taken for added pleasure. I was thinking that I would brave the whole thing drug-free but decided to see stars at the last minute. The biggest drawback to the conscious sedation for me is that I feel horrible for the next few days.  The doctor found inflammation but didn't seem to think it is crohn's so she wanted me to schedule a Hydrogen Breath test to check the level of bacteria in my small intestine.  Apparently if the bacteria level is to high it can cause symptoms of IBS and of coarse diarrhea.

This morning I had the breath test at U of M hospital bright and early, 8am. It was not bad at all. Nothing invasive for a change! The only bummer is that it was a 2 hour long ordeal! You check in and someone in a white coat takes you to the treatment room fully equipped with a huge recliner and your very own tiny tv. They ask a bunch of questions and promptly have you blow this bag full of your air. After the first bag they give you a cup of this sugar water mixture. The drink wouldn't be that bad if you had something salty to go with it, but on an empty stomach its gross. ( not as bad as the CT contrast though!!) You need to drink that down within 2 min and then blow in a new bag. They come to you every 15 min after that to have you blow in a new bag.
They take those blown up bags and test for the levels of hydrogen dioxide? and I think sometimes methane. I am not really sure about all the exact details on the test so if you need to know more specifics you can google it. This is just what happened to me this morning. 

I look forward to getting all of my results in 5-10 days and I am really excited to start 2010 with no more tests on the horizon!!!

So for the rest of this Christmas break I can concentrate on my kids! This afternoon I am taking the 2 older boys to the indoor skate park and tomorrow snowboarding, while the younger 2 are having a sleepover at my moms! Then Thurs we will all be going rollerskating~how fun!!! I am tired, but the show must go on!

I am so happy to be ending this year with new hope.  And a little bit more exciting news, my 1 year anniversary from take down and using my j-pouch is fast approaching! Jan 7 to be exact.....maybe after the anniversary everything will just fall into place.


Wednesday, December 23, 2009

Just Thinking...

I think that the saying 'you are being a pain in my ass' was conjured up by someone suffering with some kind of IBD, most likely UC if you ask me! Maybe that person really thought that a certain someone was the cause of the pain they felt inside their ass every time they thought of them. Stress induced pain, probably. But most definitely a pain. Location, ASS.

I am sick of this pain in my ass. I could blame it on a few people, no doubt, but the ugly truth is IBD sucks the big one!!!


Monday, December 21, 2009

Looks Are Deceiving

It sat there looking at me all afternoon. Bumpy and rolled in pure taste bud heaven. It was the biggest one I have seen all season and I could hear it calling for me if I left the room. I couldn't take the mounting pressure to abstain any longer and I grabbed it and shoved it into my mouth with lightning speed as to lessen the chance someone would want me to share. (or maybe wake me to my senses!)  At first I was only going to 'taste' it, just a little nibble~ that nibble idea very quickly was thrown to the wind as I devoured my first massive caramel dipped chocolate and toffee rolled apple in almost 3 years!!! Yes, 3 years!!! Last night I took the plunge and ate 1/2 of a raw apple rolled and dipped in pleasure!

That sweet and tangy treat went down smooth, I made sure to chew my food well.  But I tell you from this sad, disappointing experience~"LOOKS ARE MANY TIMES DECIEVING!!!"   That apple was pure evil and my little 'j' is paying the horrifying price of my moment of madness. 

Oh me, oh my am I in pain this morning! To top it off even better I need to bring a stool sample down to the lab and get my hair did this morning! I have no idea how I am going to stay away from the loo that long. This could be even more devastating then I had thought!  And I want you to know that it is actually possible to have horrible diarrhea yet not be able to go!?!! If I only knew that the symptoms of UC would still be with me even after my mangled colon and rectum were removed!!!

So in a few hours this episode will pass and I will again dive into the holiday spirit, maybe a little wiser and a lot more cautious.

So for me 'An apple a day' is nothing more then a load of painful crap! I will stick to applesauce~Sarah

Thursday, December 17, 2009

A Fresh Look

So today was the day I meet with a new GI doctor, yay! I, of coarse, had my appointment time wrong and showed up 30 minutes late! Luckily for me she fit me in 45 minutes later.  The apt went well, she seems very kind and competent. What I really liked about today is that she had some fresh ideas that didn't include surgery!

Okay, here is the part that has made me feel sick... I was originally diagnosed with 'Indeterminate Ulcerative Colitis' which means the pathologists can not say I did not have crohn's and they couldn't exactly say it was 100% UC either. So they call it indeterminate ulcerative colitis. Today when the doc read my latest biopsy report she said I didn't have pouchitis but ileitis (inflammation of my ileum~the end part of your small intestine) She said that is more characteristic of crohn's. Hmmmm, that would explain the constant diarrhea, pain, urgency and why all of the fiber in the world with Imodium isn't helping anything!

Here is our new plan. Suppositories 3X/day, blood work, stool samples and yes another sigmoidoscopy with biopsies! YAY!!!

I am hopeful, maybe this is the answer we have been looking for since 2007! 

Sunday, December 13, 2009

Christmas season is in full swing...

For the last few weeks I have been getting ready for the weekend of endless Christmas parties! Three days, three parties~oh the joy! You know how that goes, shopping, baking, keeping the kids out of the presents and the ever so loved traveling with over tired, over sugared kids! Only to come home to find your house has been totally vandalized by a band of elves drunk on excitement and exhaustion! Oh how I love the holidays!!!

So with all of prep work going on around the house and keeping with a tight time constraint, of coarse my J-pouch felt a little jealous!  "J'" started to create problems once again by deciding to be a literal PAIN in my, ummm, bottom. And with all of this fancy food around I haven't always made the 'healthiest' of choices, now add in the eating way to late~ I am paying for it.  It really amazes me what people with colon's can eat and usually not give it a second thought. That is until the hop on that scale.

So onto running ~ I have either been to tired and burnt out or so swamped to get my rear in gear! I plan on returning to my training tomorrow. I can tell the hardest thing for me is going to be keeping my head in this. That and not crapping my pants as I run! I think pouchitis has reared its ugly head again, accidents and all. YAY!!! I have an apt with a new GI on Thurs, hopefully she gives me a round of cipro then things will start to get better. 
~ I hope~

Wednesday, December 2, 2009

Running To Stand Still

Not only is Running To Stand Still an awesome song by U2, it is something that I am attempting to do.  I have been spending so much of my time in my own little vacuum going over and over the events that have gotten me here, colonless, that one day it dawned on me~I need to get moven or I am going to wake up someday only to find life has gone on living without me! It is a scary realization to come upon, life going on without you. I have 4 beautiful children that I think might want me in the present, enjoying life with them, not mowing over the past.
So I figured a good goal for me to set for myself would be to 'Conquer the things I think I can not'.  Heck, I never thought I could live through the pain and utter humiliation of UC and then a complete colectomy, ileosotomy for 9 months, MRI's, CT scans (I couldn't even tell you how many), PET scans, bone marrow biopsy, lung biopsy and then collapse, testing/waiting for results, cancer?, NO CANCER, ileostomy takedown/J-pouch hooked up, j-pouch stricture, twisted j-pouch, another surgery to un-twist the pouch and recovery!!! I wont even start on all of the colonoscopies and preps, yuck~But I did!!! I did it with 4 kids and an awesome husband standing by me and a lot of answered prayers.
Something else that I never thought that I could be is a runner! Just don't really enjoy it. But when I was at my sickest waiting for surgery I could barley walk up a flight of stairs. I was so weak (thanks to all the horrible drugs, the constant bleeding and malnutrition that comes with going to the bathroom over 25 times a day! UC rocks, NOT!!) I couldn't open the back door to our home and lift my leg at the same time to go inside. I fell and couldn't get up without a ton of effort. So now that I am on my road to emotional recovery and regaining my physical strength the thought can to me~"I want to run like Forest Gump!" Yes, I know, but I am not a runner, YET!
I am registered to run in the Chicago 13.1 (half marathon) with Team Challenge, Race for a Cure in June 2010! (anyone want to join me?) I have many doubts if I can run the whole 13.1 miles, but I am sure going to try! I have come so far in this journey and I will prove it once again that I can Conquer the things I think I can not.

I will keep you all updated on my running progress! The good, the bad and the ugly!  Six months and counting...

Tuesday, December 1, 2009

A good enough day as any to start

So here it goes, my very first blog! So what do I hope to accomplish with this little endeavor? At this point I think its more therapeutic for me then anything else. I want to tell my story. And in sharing I hope to heal the wounds that mortal eyes can't see.  I hope someone out there will notice the foot prints on the otherwise empty road they travel and know someone, somewhere knows the journey of a colonless life.
 ~These are my Colonless Chronicles.