I Can Not Tell A Lie! ~And~ Bloggers Wanted: It’s Christmas Event

Ok so you all know that I have had many many MANY of the dreaded colonoscopy's!!! I've never gotten much sympathy from my hubby during the even more dreaded prep. Don't get me wrong. He is the best at taking care of me before during and after every little, big, and bigger thing I've been through but I can not tell a lie...I've always thought he didn't quite understand how awful that prep is. That being said I've always thought (in the back of my mind) that some day he would have to have one and I would be able to say "See...not so much fun is it?" and "Now you know just how bad that crap tastes and why it gags me with every sip". Well that day has come and I don't really feel like saying those things. I feel so bad for him :( because I KNOW just how awful he feels right now!

Love, Laugh, and Always know where the nearest bathroom is


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Tuesday's Torture

Last Tuesday was torture! A torture many of you will recognize. Jello, broth, tea, italian ice, clear liquid torture...It was prep day!!! Yes prep day for my Wednesday colonoscopy...with my new doctor... Oh doctors & researchers why oh why can't you come up with an easier way??? I guess they are making some progress (very slow progress). In the 30+ years I've had this beast they finally gave me a prep that didn't taste horrible. I used the Dulcolax tablets and Miralax w/ Gatorade prep. The Miralax had no flavor so you just tasted the Gatorade. I'm not crazy about the taste of Gatorade but it sure beats the taste of the other toxic waste. Same results...drink run, drink run, and drink and run some more. The colonoscopy itself went well. The nurse put the IV in a very awkward place in my right hand but she got in on the first try. Apparently my veins are shot. Most likely from the chemo. They never were easy to get but since the chemo its been so much worse. One stick then the wonderful cocktail to put me to sleep. Ahhhh anesthesia you are my friend!!! The Findings: There is a stricture at the anastomosis (the area of resection) and a few small ulcers plus diffuse inflammation in the ileum. Areas were biopsied and I have to call next week for the results. If the biopsy shows active crohns we will consider switching my meds from the Apriso to Sulfasalazine (which may also help my joint pain). Another option is Methotrexate. I was on the Sulfasalazine a long time ago and it worked well with no side effects. Immediately after the colonoscopy I went to radiology and had an ultrasound of my gallbladder and liver. On my last CT scan in 2010 they found a small polyp on my gallbladder that they want to watch. I can't remember how big it was in 2010 but it is 7mm right now. I have to call and have the 2010 results sent to the doctor. And of course they are always keeping an eye on my liver. Now what do I do after a colonoscopy??? Starbucks!!! Conveniently there is a Starbucks in the Lobby of the hospital. I got my Chai Latte and a breakfast sandwich. YUM............ Love, Laugh, and Always know where the nearest bathroom is

Its almost April…why is it so cold!!!

Its because I don’t have any hair isn’t it???? I have to go and sit at baseball games in the cold (30ish degrees) with three hats on and I’m still cold??? (Plus the layers and layers of clothing) But I do love to watch my boys play baseball and so far my crohns beast has been cooperating. If I eat an early lunch I’ve been able to make it through the game. Double headers are another matter! Now that things have settled down after the surgeries and chemo I need to get back to my gluten free diet. That should help baseball season go a little smoother. I still haven’t called to schedule my GI appointment…shame on me. I need to do that soon. I’m wondering what he is going to say about meds. I don’t want to go back on the cimzia (I don’t even know if that’s an option). Right now the Pentassa is working well so hopefully I can just stick with that. Of course he is going to want me to have the dreaded colonoscopy but that’s going to have to wait till all my plastic surgery is done. Turns out I may have to have some touchups done sometime in May or June. That’s ok thou because after everything I’ve been through I want my new boobies to look their best so I’ll do whatever I have to do :)

I’m happy to say that my hair is starting to grow back YEAH. Unfortunately its growing back on my legs and under my arms the fastest!!! BOO

Well no early lunch for me today (no lunch at all). I am off to meet J at the eye doctors and then B has a game at 4:00…Its 32 degrees right now!!! I think I need more hats!!!

Love, Laugh, and Always know where the nearest bathroom is

Here I am

So…..here I am….I didn’t get swallowed up by the couch! As a matter of fact I am happy to say I am spending less time on the couch. I had my swap surgery and I’m praying that all the painful stuff is behind me now. I am slowly, slowly getting my energy back. I’ve started exercising again and I will never complain about dragging myself out of bed to exercise. I actually missed it.

As for my behind (and intestine) I am doing pretty well. I’m back to my normal bathroom runs. The four to six times a day seems like nothing compared to the 12 to 16 times a day during the chemo. I’ve stopped taking the flagel and so far the fistula has been calm. I have started the Tamoxifen which is causing horrible hot flashes…blah!

I’ve shared with you many times how much I HATE needles! Well before my swap surgery, when the very nice pre-op nurse came into start my IV she said the words I dread “You have very small veins”. This is never a good sign. So after tap tap tapping my arm and hand she gives it a try in the side of my left hand…strike one! She tries in my right hand…strike two. Sorry Ms. Nice Nurse today rule is two strikes and you’re out. She goes to get another nice nurse who isn’t very confident either but she does get it into my left hand on her first try. Ughhhhhhh!




At least this surgery was not as uncomfortable as the last. My new perky boobs are in and hopefully once the swelling goes down and everything falls into place they will look great (at least under my clothing :)

I am due for an appointment with my GI doc. During my last visit, before all the cancer stuff, he wanted me to have a colonoscopy in March. The last time I talked to the nurse I told her it was going to have to wait. I need a break from poking, prodding, and removing things. She completely understood.

Well it is March already and March for us means BASEBALL. J already went to FL for his spring baseball trip. His team did very well. He has a DH today but it’s away. His first home game is Friday so I’m looking forward to that. B however has his first scrimmage game today Yeah! I am very very excited. They will be playing on the brand new high school turf field.

I’ll let you know how that goes!

Love, Laugh, and Always know where the nearest bathroom is

Good News and Some Other Stuff:

First things first…Thank you to all of you who kept me in your thoughts and prayers while I went through my prep and colonoscopy. Your support means the world to me and helps me get through the tough times.

So I made it through my prep day although I must say I almost did not keep the phosphate toxic crap down. I’m gagging right now just thinking about it. Also a friend just enlightened me on the dangers of drinking this horrible stuff so guess what my dear GI doctor…I will never drink it again. So unless you come up with a better way (which my friend has already told me about but don’t tell my doc) you better enjoy this peek inside me because it might be your last…. In case you are wondering I WOULD LIKE IT TO BE HIS LAST!!! Okay to the good news… The scope went well from beginning to end hahahaha no pun intended. What I mean is the nurse had no problem starting the IV. I was a little worried when I heard those dreaded words “Your veins are so small”. In my experience those words are usually followed by a traumatic needle experience. She flicked and slapped, and rubbed, and flicked and slapped, and rubbed my right arm then went over and flicked and slapped, and rubbed, and flicked and slapped, and rubbed my left arm. So I held my breath and prayed and she did fine, got it in on the first try (sigh of relief). Then my favorite person came in…the anesthesiologist woop. She talked to me for a bit then did her thing and the next thing you know I woke up and it was over (another sigh of relief). Then the doctor gave me the good news…Normal mucosa in the whole colon! The ulceration, granularity, friability and congestion at the resection area that was seen on my previous scope has healed. The Cimzia is helping PTL!!! I have been so discouraged lately with all the fatigue and joint pain that seems to be a side effect of the Cimzia (for me) and not really knowing if the Cimzia was helping. Now I at least know that it is helping.
So here is the plan…

More blood work to re-check B12, and CBC, and check Vit D level to try to resolve the fatigue issue.

Since I still haven’t heard from the Rheumatoid Doctors office about when he can see me my GI Doc is going to contact them to see if he can get me in soon. He is hoping the rheumatoid doc can help me with the joint pain and find out if it is a side effect of the Cimzia.

I am also going to see the Nutrition Doctor again for help with diet and vitamins (B12, D, and whatever else I might need).
I hope I can get some quick answers because it is March and if you know me you know what that means!!! It’s almost baseball season and I NEED to go to ALL my boys games….PLEASE!!!

Which brings me to the other stuff…..BASEBALL. The title of this blog really should be Crohns and baseball lives with me. Like I said its March so here we go. J will be headed to FL for his spring training and his first game will be on Saturday. I really really wish I could be there. He is so excited because Coach R wants him to pitch more this year. He always did a lot of pitching from little league thru high school and for his summer travel AAU teams, but he was recruited as a 3rd baseman so his coach wasn’t even aware that he pitched till the end of last season. I hope he does well in FL.
B’s high school season is due to start with his first scrimmage game on March 18th. There’s only one problem. There is still 2 feet of snow on all the baseball fields in the area??? I did get some other good news today though. Mr. FF (use your imagination) will NOT be helping with the team (jumping for joy). It’s a very very long story but Mr. FF is someone that I hate. Yes I Hate!!! He has done some awful things in the past (as a so called coach) and therefore I do not want him anywhere near my kids. Long story short, even though everyone in this baseball area hates him no one has ever had the “hardware” to tell the man NO except my husband (a few years back). So when Mr. FF didn’t get his way he spent the next 2 years trying to keep my kids from playing baseball and my husband from coaching baseball. Now he has wormed his way into the coaching staff at the high school but it appears that the head coach has come to his senses and is not going to have him be a part of the varsity teams staff as originally planned. (Jumping for joy again). Well that’s all for now. I will be sure to keep you posted with updates of both J and B’s seasons!!!

Remember:
Love, laugh, and always know where the nearest bathroom is

Some Random Thoughts:

Some random thoughts while I prep for my Colonoscopy!!!!
I hate colonoscopys
I hate Crohns
When people find out I have Crohns they usually say “Well you look Great”
I wonder if healthy people ever get told “Well you look horrible”???
Making Jello
JELLO…JELLO…JELLO…JELLO…JELLO…JELLO…JELLO…JELLO…
Crohns makes a Friday crappy!!! & Sat. & Sun. & Mon. & Tues. & Wed. & Thurs
Orange Jello
How can a somewhat good day go so bad so fast??? Crohns thats how!!!
A Clear Liquid Diet:
Clear liquids consist of water, apple juice, black tea, black coffee, gingerale, bouillon, broth, gelatin (i.e. Jell-O – not red), and Popsicles (not red). No solids or dairy products. Anything not appearing on this list is not allowable and, if taken, may lead to the cancellation of your procedure
How long a minute is depends on what side of the bathroom door you're on.
Drinking Tea
When you have crohns a surprise is not always a good thing…just saying
Just the thought of drinking this toxic waste cleans me out!!!
Drinking it…………….
Nausea, burping, pooping, Nausea, burping, pooping, Nausea, burping, pooping,
Nothing says "you're a loser" more than owning a motivational poster about being a winner.
Ohhhhhhhhhhhh be right back!!!!!!!!!!!!!!
Lemon Italian Ice
If a pretty poster & a cute saying are all it takes to motivate you, you probably have a very easy job.The kind robots will be doing soon
Chicken Broth
There are No Stupid Questions. But there a LOT of Inquisitive Idiots
Sponge Bob is on
So if I laugh my ass off will my Crohns go away???
Laughter is the best medicine
Thank you God for laughter
More Jello
More Broth
More Italian Ice
Dear Crohns: Don't be mine
Dear Crohns, You are such a pain in the A@#
Ahhhh chai tea always makes me feel a little better :)
Dear Crohns Disease: Why do you hate my guts???
All that I’m after is a life full of laughter As long as I’m laughing with you
I Hate Needles
Isn’t this day over yet??? 6:30 pm argggggggggggggggg
I’M HUNGRY FOR SOLID FOOD
Did I mention that I hate Crohns????

Love, laugh, and always know where the nearest bathroom is

An Update and a Special Request

I am happy to report that this week I am feeling a little better. Still exhausted but the joint pain is not as bad, I have less nausea, and I think I went an entire day without a headache. I am hoping the next three days will continue to be good ones because, are you sitting down, on Sunday I have to prep for my colonoscopy!!! Blahhhhhhh!!! So think of me in my corner sipping my clear liquids and toxic waste but try not to picture me running to the bathroom.

I am also happy to report that I (with the help of my wonderful husband) made my first loaf of gluten free cinnamon raisin bread last weekend and it is very good. I am so happy to have some bread in my life again and I am looking forward to finding/making other wonderful gluten free foods.

Now I would like to ask a favor. If you happen to have an extra $5.00 or are looking for a wonderful cause to support please consider making a donation to a fellow crohnie who is participating in the Take Steps for Crohn’s & Colitis walk this summer. You can donate online at:

http://online.ccfa.org/site/TR/Walk/Chapter-SouthwestOhio?px=1957383&pg=personal&fr_id=1797

More than 1.4 million patients across the country suffer from Crohn’s disease and ulcerative colitis. Beyond raising money for research, Take Steps brings together the community in a fun and energetic atmosphere. Participants are encouraged to make noise and be heard—raising awareness of these little known diseases.
If you are able to please consider supporting their efforts by making a tax deductible contribution.

Your support of even $5.00, will help fund important research and raise awareness of diseases that affect millions of people.

Another way you can help spread awareness:

If you have a twitter account on 3/14 please use #Crohns at the end of all your tweets in hopes of a trending topic to spread awareness.

Thank you so much

Love, laugh, and always know where the nearest bathroom is

Another crappy day….pun intended

This is not a good day. Dragged myself out of bed this morning. Two hour delay for the school district so I crawled back to bed. Dragged myself out of bed again. I started off with just joint pain but its joint pain that is off the charts. Almost brought me to tears today. The monster in my gut seemed to be sleeping but now it is stirring too. GO BACK TO SLEEP!!!

I scheduled my colonoscopy (woop) for March 1st. I am anxious to see if there has been any improvement since being on the Cimzia. I have a bad feeling that the Cimzia is what is causing the horrible joint pain. I have had joint pain for many years but never ever this bad and earlier this month when I had to postpone my injections because of my head cold I noticed my joints were starting to feel better. When my head cold was gone I got my injections and a few days later the joint pain was back. I tried to get an appointment with the rheumatoid doc. today but silly me I called during their hour and a half lunch time. I couldn’t call back because I had to drag myself to the high school and work the concession stand, although if it weren’t for my commitment to help the coach I would probably never leave the house. How sad is that! So I will try to call the doctor tomorrow. Better days are coming…..Right???

Love, laugh, and always know where the nearest bathroom is