Snow Day, don't get sick Dave.....

Snow day in Oregon.  Exciting for us Oregonians.  I had to take a picture of my car in the snow. You can really see how thick it piled up.  With all the snow on the ground and cold weather, my mother made a comment about my susceptibility to getting sick that I'd like to discuss.
          I've come across this from others as well, the idea that because I'm stricken with Ulcerative Colitis that I'm in some way more prone to getting sick.  It's a logical way of thinking for anyone who really doesn't understand the disease, but the truth is that I'm just as susceptible than everyone else.  My immune system still does it's job in protecting me from all those nasty cold and flu bugs out there.  It's just in my colon that you'll  find problems and the only thing the colon really does is store your stool.  All the nutrient absorption from your food is primarily done in your stomach and small intestine anyway, and for me those organs are working perfectly fine.  You could debate though that I'm still more susceptible because my diet may be more deficient because I don't eat a lot.  I can see that as a reason for me to be concerned, but I've been able to eat much more foods with out feeling sick for months now.  I take a multi-vitamin too, pro-biotics, and I'm getting a lot more sleep than I was before, which is really the best preventive medicine for avoiding the sick-monster.  So honestly I'm really in good shape health wise, besides the inflammatory portion of my colon, and that I'm still very much under weight, and I've lost a lot of my muscle mass, and I'm probably dehydrated most of the time because I pass so much junk. (just think of my last post!).  So although I'm thankful for people who cover their cough when they're around me, they don't need to do that anymore than they would around anyone else.

Merry Christmas Everyone

The Christmas day post.  I've been thinking a lot about what I what to write about today.  Mostly I just want all those that are there for me to know that I really appreciate the love and support.  This disease is very difficult for me to handle at times and I get very frustrated at it for, what it feels like, taking away my life.  If it weren't for those special people around me to remind me that I'm still the same Dave that I've always been, than I would probably wouldn't believe that.  So thank you from the bottom of my heart for being there for me.  It's the greatest Christmas present I could ever receive right now, well other than a miraculously healed colon that is.

So we are going on two weeks since the last dose of the medication Vedolizamab.  I don't want to jinx myself and say "I'm totally getting better", but I think I've seen some small improvement.  I'm not having the vicious left side pain/cramp as often, it's been at least a week since I've had it really bad.  My body in general feels less debilitated at times and I find myself not thinking so much of my colon.  With that said though, I still have the same amount of internal mucus build up, which leads still to frequent trips to the toilet and having paper towels/toilet paper in my pants for the "Slimmer Squirts" moments. (sorry if that's to descriptive but that's what I've been calling them, still it's funny, right?) So a lot of the symptoms of UC are still with me, which means the inflammation is still turned on high in my colon.  I expect that since I'm a big guy I may have to wait till the third or maybe fourth dose of my treatment to start seeing a response.  At any rate I would just like this to go away.  Which might mean surgery.  Some of my family want me to pursue that course and not wait for this medication to "maybe" work.  I understand that it's hard for them to see me in pain and my life stuck on pause, and surgery is a way to be rid of my tormented colon.  I'm just not ready yet to go there, yet.  I'm not afraid of it anymore, but I need to see if this medication will work, because once your colon is out of your body it's not going back in.  At any rate I can take solace knowing that so many loved ones of mine really want me to get back to that vivacious Dave that I use to be.  I miss him too.

Merry Christmas everyone.  I hope today you may feel loved by those who love you.  I hope you may feel the joy of the season and peace of our saviors love for us.  I've had to rely a lot on my faith to get me through this and I'll continue too because he'll continue to be there for me too.

Dose 2 done, back to the waiting game

Last Thursday Dec. 10th was my 2nd infusion of Vedolizamab (my study medication).  Everyone has been asking me how it went.  As you can see from the picture that the actually infusion is a piece of cake.  All I do is sit there with an IV in my arm for about two hours, catch up on episodes of funny shows on Hulu, and sometimes doze off.  So I guess it's safe to say that it went very well and now I'm all up to date on the episodes of House and The Office.  Of course the big question is if I'm feeling any better or see an changes since the infusion.  It's only been three days so far so I think I need to give it more time.  I really feel the same as I did before the infusion.  My GI doc has said, and I think I've mentioned this before, in most cases it takes 2 or even 3 infusions of these types of medications which are called Biological Drugs for there to be a response.  So it may be even at the end of January that I may start to see a change.

Some of you know that I've actually been participating in this Drug trial for some time. It's true, since August.  The difference is that before I was in the double-blinded study, which means I could have been given a placebo instead of the actual medication.  The study's protocol indicated that if my inflammation had absolutely no change after 14 weeks of starting the study that I would be place into the "Open Label" group. That's where I'm knowingly give the live medication and no chance of getting placebo.  That is what happened and now I'm two does or 2 infusions into the "Open Label" study.

So the question then is: was I getting the live med or just placebo in the previous part of the study? If I could know that I was indeed getting the live med instead of placebo then I would know that this drug probably isn't working for me.  I would then move on to other treatments. (at this point that means surgery, Colectomy) Colectomy Explination Link.  But the study won't tell me what I was given during that first part.  It's against there study protocol.  So that's why I'm stuck in this waiting game to see if my colon will respond to this Vedolizamab medication.  I sure hope it does because I would really like to have my full healthy life back. My weight now is at 157 lbs. A little better, at least it hasn't dropped any.

Round Two This Week. Keeping My Figures Crossed.

On Thursday of this week I'll be having my 2nd dose of the medication I'm on.  It's called Vedolizumab .  Go to this link because it explains everything about the trial I'm on and talks specifically about the drug.(trial study info link)

I hope most of you read that page about the drug and trial I'm undertaking.  It's neat to think that my experience is helping the medical world in a small way.  I really hope this medication will put my colon into remission and I can live pain free again.  I've been told from the research assistant at my clinic that the others with in the same study really started seeing a significant response after the 2nd and 3rd dose.  So with doses once a month I'm excited to see how dose number two does to my angry colon.

So like I promised previously I would post up a picture of what my colon and it's inflammation looks like.  I wanted to find a good picture of what a healthy colon looks like too so you can compare how severe my inflammation is.  To be honest looking at my inflammation is one of the hardest things for me to do, because it shows the reality of how bad my case of UC really is.  I hope those with UC who are reading will understand that UC has it's ranges of severity. Those on the low severity seem to have a difference experience than those on the higher severity.  Almost like it's a different disease.  So be grateful if your UC is just in the Mild range and you can control it with Asacol and sometimes Prednisone, your lucky, because life in the Severe range sucks.

You can see in the picture how in the Normal colon mucosa you can see the small veins and is relativity a soft soothing pink color.  In the Severe colon mucosa it's an angry red with a sheeting appearance of the inflammation (the white coating).  So now you can compare what the insides of my colon look like and judge for yourself where I fall.

 "Click on the picture to make it big"

Those are from my November 9, 2009 Flex-Sig.  They're the most recent pictures. So now you can see why it's hard for me to look at my colon.  I guess in some regards it helps me understand why my experience with UC is so dramatically different than most and how life altering it's become for me.  I'll get some better pics on my colon soon too.  I just need to scan them.  In another set of pics you can see where the inflammation starts and stops in my colon.  That's pretty cool to see.  Also I'll have another flex-sig probably in January I'm guessing and hopefully it will show some signs of improvement.  Feel free to ask me any questions you may have or voice any requests on certain things.  I hope everyone reading is getting into the Christmas spirit.  It's one of my favorite times of the year. When we think about our loved ones and our savior Jesus Christ.  Merry Christmas.

Ultrasound results are in.

Some of you that are following may remember that last week I underwent a Ultrasound to look at my upper right quadrant for any abnormality.  Guess what........there's nothing abnormal at all.  That's great news right? Sure it is but it still leaves the question unsolved about the excruciating pain I had two weeks ago. (I wrote about that a few posts ago).  So really the pain could have been a couple of things, but I think it was probably really really bad indigestion and my stomach flared up.  I've been taking Protensa, an anti-stomach acid, since my doc appointment and the pain has not returned.  I had to get all jellied up on my chest for them to use the ultrasound on me, but the jelly was really warm so it actually felt kinda nice.  The procedure was really quick too,just about 15 - 20min.  The US-Tech told me that he does so many of these types of ultrasounds a day that he could almost do them in his sleep.  Here is a picture of me with the ultrasound machine. Yep you're right I do have my shirt off.

Post Thanskgiving: taking the good with the bad

Holidays are wonderful times.  I love the holiday festive cheer and being surronded by love ones, it's always a good time.  But I never really realized how much food is involved with these holidays until my UC took over.  This Thanksgiving marks the 2nd one I've had while being inflicted with active severe inflammation and this time around I think my UC was a bite more tolerable.  With any type of family feast where I know that eating is the main activity I prepare by keeping my colon basically not active prior the feast.  So I fast, but I keep my fluids flowing though with my favorite Gatorade.

You see my UC has changed how I look at eating.  Eating starts you peristalsis motion of your guts.  So for me that means poop coming down the ol' poop shoot right where the nasty inflammation is which results in pain, aching, and field trips to the toilets.  So to enjoy myself with everyone before the feast I fast and my colon stays relativity calm.  But about ten bites into the awesome Turkey that K made I could feel those guts a moving and I had to take a time-out on the court to relieve myself (pretty typical).  Everything tasted so good and everyone was having a good time. Pics to follow of course

Afterwords came the rumble in my colon.  I just sprawled on the couch with the football game on while my guts moved up and down and around and around.  Uncomfortable.......... yes,  but good news was that I was able to get to a good enough spot  to enjoy a couple games of settlers with the family.  Overall I could say that I had a much better Thanskgiving than last year.  That makes me happy more than you can know.

New Pain leads to Doc appointment.

I'm see my GI doctor today.  GI stands for Gastroenterologist. Web site about GI docs. My visit today is an unscheduled due to new symptoms I've been experiencing.  It was last Thursday the 19th when what felt like a pretty common stomach ache turned into a full blow stomach attack of pain.  I woke on Thursday feeling this stomach ache which began at the bottom on my sternum and ended at my navel.  All the the day it persisted with varying degrees of achynes.  I remember around 5 it grew to pretty uncomfortable levels and I began messaging my tummy.  I felt it odd that the typical area of pain associated with my UC, the lower left quadrant of my abdomen, was pain free and I wasn't having any butt pain like I've described before.  Nausea grew and although I was hungry but the very thought of food upset my stomach even more.  I had been taking my usual Tylenol and took another 1000mg at this time.  This seemed to help a little, however by the time I got to bed around 12am the pain/ache returned with greater force.  It took me by surprise really.  It felt like someone had been punching me repetitively in the abdomen or like I had done a thousand sit ups.  The achy area now seem to encompass my entire abdomen with it's most tender area being below my sternum and above the navel and to the right of center.  I tried laying on one side and then the other to get comfortable, sitting up, on my knees, and even  hunched over a chair but nothing would dissipate the pain.

Most of you need to realize that I've been living a life for the past year and a half with a continuous level of pain, so I feel I have a pretty well developed high threshold for pain/discomfort. So when I tell you all that I honestly was scared about how painful my abdomen was that I thought of going to the emergency room, you can imagine it was pretty painful.  The nausea was horrible at one point I knelt at the bath tub wanting to vomit thinking that in some way it could bring relief but neither came.  It was 5am and I had been struggling with this pain since 12am.  I decided that I would take some Zantac (Heartburn Med, OTC).  I keep some around for the rare occasion I get heartburn.  I wasn't feeling any heartburn pain but I thought maybe it would help somehow. It must have because in 20min I found myself asleep and when I woke up 2hrs later the pain was gone, but the ache was still there.

The rest of the day Friday seemed as though I had just been in a boxing match but only getting hit in the abs. I called my GI doc and explained everything that I experienced and he couldn't squeeze me in but that on Monday first thing he could.  I haven't experienced that same excruciating pain again since Thursday night and the ache "just hit in the stomach feeling" has dissipated too, but not entirely.  I hope I get get some answers to what or where this pain came from. Maybe it can be explained by really really bad indigestion?  I'll post to you all what my GI doc says after our appointment. So keep posted and if you're following please sign up as a follower.

Why I use so much toilet paper.

I do use a lot compared to a normal person.  Just from the the number of trips to the toilet I take in a day (10 - 12 avg) would account for plenty of TP usage, but there is also another reason.

I was with my buddy Matt the other day having a good time talking about cars and stupid stuff when like clockwork my bowls began to grumble.  I knew it was gas trying to make it's way down to the exit shoot.  Problem is my exit shoot is angry with inflammation and like an old crotchety old man doesn't like to be bothered.  But my bowls couldn't take the increasing pressure from the build up of gas anymore.  I realize that it's normal to pass gas, everyone does it everyday, but for me passing gas hurts and is usually messy.  Messy because in order for my colon to protect itself against the inflammation copious amounts of mucus coat the lining of the inflamed areas.  So when I pass gas I usual pass the mucus too.  It turns out to be a really juice fart, literally.  Matt was particularly impressed with how juicy sounding it was and with a concerned look on his face asked if I just goobered my pants.  I hadn't and not because I didn't pass any mucus but because I had prepared by stuffing my underwear with TP.  This way the TP catches all the mucus junk and I don't soil myself.  I explained this to Matt and he asked me if I always had a wad of TP down there and I realized that stuffing my underwear had become such a daily routine that I indeed always had TP in my pants.

I know what your thinking, Dave why just get Depends and wear those around.  To be honest with you all, I have and occasionally I will.  But I still have huge reservation for wearing them all the time.  It's hard to explain why I don't. Partly the reason is that for me to wear them means that I've let the UC beat me one more time,  that it's winning.  I'm some small way I've let my UC get the better of me. I guess me not wearing an adult diaper gives me a little victory against my UC.  I can say to myself, "at least I'm not that bad that I have to wear Depends all day long." Plus I associate adult diapers with old dieing folks that live in stinky old folks homes.  So that's why I stick with the TP stuffing.  Lately I've tried to a great success folded up paper towels and stuffing with super absorbent paper sheets the kind used at hospitals as a barrier.  They all do the trick most of the time from having to change my underwear and pants.  Although I keep an extra set in my car with me all the time and yes I've had to change many times.  Sometimes I pass so much mucus that the TP just isn't enough. But most of the time I can make it to a toilet or in desperate times out in the beautiful wide open.  There are some funny stories to tell about that, but I'll save those for later.

Another frusterating night.

It's 3:30am and it's been six days now since my infusion and I don't want to jinks myself but I do seem to feel, and I'll put it this way, less miserable.  But whats six days really.  My doc, Doc Sleven, has told me that these biologic drugs really take a good 4 weeks to really start showing any response.  With that said, I'm sitting here in my room and my butt hurts and with a little bit of annoying left side pain.  It just sucks because I'd like to go to sleep but this pain just won't dissipate.  My normal tactics of siting on my heating pad help and laying on my left side help.  Interesting fact is that by laying on your left side as opposed to your right, your bowls actually relax more.  So tonight is another sucky night.  If it gets real bad I'll take a real hot shower to relax those butt/gut muscles.  I do take Tylenol too and that helps with the crampy achy pain.

4:00am The feeling now is like a heaviness on my anus and it won't go away.  I've been tossing from side to side on my bed and using the heating pad directly on my bum and still I just can't get it to go away.  It's so uncomfortable. If I lay on my left side I hear my guts rumble and sometimes I can release some gas.  It feels better to do so but it also strains my smooth muscles down there to the point that they feel clinched up and that just hurts.  Finally I go into the bathroom to use it and I'm able to relive my bowls after some coaxing and straining.  I'm in there for probably 15+min but it changes everything in my guts.  All that built up pressure is now released.   I'm now able to sleep, well at least for a few hours.  Until I'm woken up because I need to pass gas or something.  But the worst of it is over for tonight.

I'm going to get my last colonoscope pics scanned and posted up here.  Then you all can see how bad my inflammation is.  Untill then, I hope you all are getting a better night sleep than I.

Taking my Ulcerative Colitis (UC) seriously.

I would be lying to the world if I said that my life has been great or even "just ok" since April of 2008.  UC has changed my body and my life to such an extent that to deal with it I mostly force the reality of my situation out of my mind.  I've delayed with starting this Blog about my UC story because of this very fact, but I'm compelled right now to write about my experience and fight to share it with others.  Not just with my friends and family, but hopefully with others that are also fighting against UC or other inflammatory bowel diseases.  My hope is that others will be able to have a better understanding of this disease and that maybe some can find support through my fight.

Hopefully at this stage of my recovery I'm more towards the end of the tunnel.  Rather than talking about the last year and a half, I'll interlace the past through out my posts to give a full picture.  For those whom are unfamiliar with UC I suggest going to this link: www.mayoclinic.com/health/ulcerative-colitis/DS00598 there you'll get a better idea of the disease. Short answer is however: inflammation of the large intestine (colon), add pain, cramping, explosive mucusy diarrhea butt and you got UC.

This past week I entered into a new study drug group with my GI Clinic.  Which means I get a novel drug for UC and all the office visits and subsequent colonoscopy on the study's tab.  A small perk too is they actually compensate me like $45 bucks each office visit.  This new drug is called Vedolizamab and I get it by infusion once a month.  This week last Wednesday (Nov. 11) was my first infusion and I'm very hopefully that this will end the voracious inflammation inside me.  The good news is that others in this same study have seen wonderful improvements in just 4 weeks of there first dose.  It's just been 4 days for me so I still have to wait to see how my body response.

I'm going to monitor my weight and post this.  Before UC ravished my body I was a constant 205 lbs, now I'm 155.7lbs (Nov. 11).  I should begin to keep more weight on as I get better, but if drops it means I'm getting worse.

Update after a long winter..........

So finally it's a nice sunny day here in Portland Oregon. We saw 70+ degree temps and blue skys. Finally no rain or snow. My medical condition (Ulcerative Colitis) has improved greatly, although it's still hanging around in my colon. My last scope shows signs of healing and I feel a lot less cramps. But I'm not out of the woods just yet. I hate talking about it, because honestly this condition I'm in has consumed all parts of my life. At times I get depressed because I want to have my freedom but I must stay positive and be rest assured that all your prayers are being answered, because I am improving.