Update April 3rd, 2014, 6 years anniversary of when my fight with UC began.

Thank you everyone who has found my blog. I've been in the process of keeping things updated. I wrote an abbreviated version of my story with some new pictures at the link. I'm trying to dig myself out the hole of Hospital bills so I've begun a fundraising campaign at Gofundme.com.  I appreciate any help I can get. Here is the link

www.gofundme.com/DavesfightUC

My Mom on my right and my sister to my left. 

Update: April 2, 2012, over a year without a colon.

Spring Break 2012 - Maui Hawaii - Paia Beach 

Yes, time has gone by faster than even I can imagine.  It's been over a year and one month since I had my complete colectomy.  I've been asked the question from my family and friends concerning this anniversary, their questions are many, " Are you glad you went through with it (surgery)?", My quick reply is an resounding and joyful "YES",  And I am so happy that I decided to have the surgery. (complete colectomy: the removal of all of your large intestine from your body.)  I feel like I have my life back.  I have energy again, I have an appetite again and can eat anything I want, I am able to sit through an entire movie at the theater again, I can sleep an entire night with out walking up multiple times, I don't have to take handful of pills to only feel just a little bit better, in fact I don't take any pills at all. Through my surgery I gained my life back, and for this I will be forever thankful. I'm also humbled because I now that my success although maybe wonderful there are many like me that are not as fortunate and still struggle even after surgery.  I am grateful and thankful for having Doc.Whiteford and Doc Sleven of the Portland, Oregon area and all the other Physician Assistants, Doctors, nurses, techs, and countless others that helped me get to where I am now.  And having the support of my family was and still is paramount to my success.  I truly feel blessed from above.

If you are finding my story and are in a similar situation regardless of disease and are facing a challenging situation, let me tell you that you are not alone.  Feel free to contact even me if you need someone to talk too.  I had to take to may others before I came to the decision that surgery was my best option and even then I dragged my feet.  For those that are post surgery I know feel vetted, but yet I still mourn the loss of that part of me, even though it caused me so much pain and almost death. It's an odd feeling, but I'm sure there are those that can relate.

Thank you everyone. As I prepare for the future, which hopefully leads me to my take-down surgery in August, I will continue to look at the positives of my life and enjoy the wonderful joys of having a functional body again. For all others that have not gone through disease and illness of the debilitating kind, please do not take your body for granted.  It is wonderful and amazing more than you can even realize.  Rejoice that you can eat and drink breath, walk, run, think, laugh, enjoy, sleep and use the toilet without pain.

Surgical Update: Part 2 J-Loop Construction Complete

I'm currently back at home recuperating from the my being in the Hospital for the past ten days and it occurred to me that I haven't updated my blog.  Well blog, a lot has changed and a lot has happened so I'll do my best to bring you up to speed.


Recap: Febuary 8th, 2011, I underwent the first of my three surgeries to remove my large intestine completely (colectomy). Just to help aid in terminology the Colon and Large Intestine are synonymous terms.  During that surgery my all of my colon was removed from where the end of the small intestine (ileum) meets up with the large intestine (cecum) and leaving 12inchs of my rectum.  This removal was essential for my to be rid of the Ulcerative Colitis that had severely diseased my colon.  The last part of my small intestine, the ileum was left protruding from my right side as an ostomy, hence I had an ileostomy.


This was the first part of the three part surgery to rid of Ulcerative Colitis completely and yet still retain function of my anus.  This procedure is commonly called the "J-loop" surgery, or Ileoanal Reservoir.  

Here are a links that discuss this procedure and pretty much everything technical about what I'm going through.:
http://www.ostomy.org/ostomy_info/pubs/IleoanalReservoirGuide.pdf

Here is a great diagram of my procedure

Ever since February I've been getting my life back. It's been amazing finally being free from my diseased colon.  It felt like my whole body rejoiced to be rid of it.  Slowly my weight came back and so did my strength.  I got use to having an ostomy bag constantly stuck to my side.  One thing most people don't realized that everything comes out the ostomy, waste and gas, and nothing out of my normal end.  I never had to worry about passing gas.


August 16th 2011, I underwent Part 2 of my surgeries.  This one opened me up again and created the ileoanal reservoir of "J-Loop pouch" and using that 12inch of rectum left to ensure that there was enough tissue so the pouch could be sutured to my anus.  Further up steam of my small intestine another ostomy was formed.  This is necessary so that the newly constructed internal pouch can heal together with out having waste passing through it, which could cause complications.




My stay in the hospital was a little longer than expected sue to a small bowl obstruction.  A common yet unwanted complication that comes with any bowl surgery.  Basically the bowels get shocked from having been manhandled and they take a while before they settle and begin passing fluid and waste through them.  In my case the bowels took longer than the rest of my body was ready for and just like a kink in a water hose, I was clogged up.  I had to have a NJ tube place in my nose down past my throat down to my stomach wear the build up fluid had to be drained.  This tube was very painful and uncomfortable.  I can easily say this was the hardest part of the my whole ordeal that I've had to go through. After a a full 24 hrs of the NJ tube and keeping all the backed up fluids off my system, I removed the tube in my sleep.  Which wasn't planned, I didn't even realized what had happened, I thought I was dreaming.  I was fortunate that  I didn't have to have it replaced because I bowls began to respond correctly and I was able to be  released back to home on the evening of Aug 25th.


Since then it feels a lot like before, I'm tired and weak.  Being in the hospital and with the obstruction I had lost over 20lbs. so I've been trying to eat as much as I can.  I ended up taking naps throughout the day and  generally taking it easy.

Here is me pre-surgery just hours before going into surgery

Here is me post surgery.

Here is me with my NJ tube I had to pump liquid contrast through it  before going to get a CT scan.

Here is a close up of my belly post surgery. On the left is my ostomy  and on the right is my abdominal drain.

Here is me finally able to move around the Hospital floor.

Here is me before I was released.  I really did get that skinny.

Surgical Update #1

February 8th, 2011 I underwent a colorectal surgery.  Surgery began around 10am.  I had a complete colectomy (removal of my large intestine).  Surgery went well.  It lasted between 5 to 6 hrs.  Most of my procedure was done laparoscopicly.  This method is much less invasive and has helped me in my recovery.  I'm currently at Providence of Portland Hospital.  It's now three days after my surgery.  I have progressed to being able to get out of my bed and walk around the hospital wing.  I've been progressing my diet from just clear liquids, to full liquids, and beginning this evening I can now eat soft smooth foods.  Pain has been very manageable.  I was on a PCA pain pump and now I'm on oral pain medications.  My belly is swollen still and I have pain around my surgical sites.  My shoulders feel achy a lot.  This is do to referred pain from the laparoscopic procedure, during which my abdomen is blown up like a balloon with CO2.  This exerts pressure on the phrenic nerve which also steams across the shoulders.  So pain from my abdomen is expressed in my shoulders.

It's been long over due update........

It's been quite a while since I've posted.  My only excuses for my absence is my lack of motivating due to difficult times.  Since my last post almost a year ago much has happened in my life that has been very heavy on my heart.  I've have gone through a painful break-up, parents divorce, unexpected passing of a very close uncle, lost my best friend, financial issues, and even emergency surgery (*I'll go into this in more detail later on).  It has seemed that each month came with it own set of difficulties that drained me of any enthusiasm to blog about.  No body likes to share the bad news. But through all this there has been wonderful bright moments to celebrate such as, my UC symptoms have improved, I'm working once again, and I've been maintaining my health and weight.   But I digress, it is now that I feel I must share my experiences with those around me to share lessons I've learned. So please welcome me back to my blog world and stay tuned, because I'm back.

-Dave

Somedays I feel like this:

and other days I feel like this:

but most of the time I feel like this:

Happy New Year 2010 and Whats in Dave's Black Bag?

It's already the new year and the it seems that time is rushing by.  I can't believe it's all ready the 12th.  12 days into year 2010.  I love the holidays but with them behind us the swing of life seems to be back on track.  For me that doesn't mean much because it's not like I have a job to return to, (I haven't been working since Jan, 2009), but everyone around me is back to their normal routine.

Updates on my condition:  I had my third dose of Vedolizamab on 01/06.  I'm very hopeful that after this dose my body will start to show signs of response.  Which I guess would mean I would have fewer trips to the toilet, less mucus, less painful cramps, less heaviness on my anus, less painful poos, less interruption from sleep, more weight gain, more energy, more appetite, more feeling normal.  I haven't had any miracles yet, but I do feel like I'm having more good days as of late.  With that said, however, I'm reminded of the four+ times I was awoken from my sleep because I had to go the toilet to strain and push all the crappy crap crap mess of poo and mucus out of my rectum.  For all of you normal people out there be grateful that when you poo it doesn't hurt and that your poo just comes out with minimal effort.  I have to do a lot of straining and pushing for sometimes up to 15min a time.

Enough toilet talk.  I wanted to share with you all the meds I take.  Some of you know that I carry a black bag of meds where ever I go.  I do that because I take a lot of meds through out the day that help me feel better.  Here's the list:

Asacol (Mesalamine): 4 pills 3 times a day total 12 pills.  These pills are designed to make their way to my colon and then release their medication.  The medication is believed to reduce the inflammation caused by the UC.  I've been on this med for over a year now.  It's an expensive med but I was able to receive my prescription from the Drug company through there patient prescription hardship program.  I otherwise would not be able to afford this medication.  I'm truly grateful.

OTC Anti-Diarrheal *Costco's version of Imodium (Loperamide HCL): The way this med actually works is by slowing down the motility of the guts which allows the stool to stay in the colon longer.  Although stool that remains in my colon on the inflamed portion results in great discomfort, this medication calms the overall motility of my colon which greatly helps in the overall comfort.

Tylenol Extra Strength (acetaminophen): 500mg.  I take about 2pills twice a day.  This helps with the painfully cramps and other aches that I have associated with UC.

Hyoscyamine: This medication I take maybe once a day.  It is as need med.  It dissolves on my tongue.  It is a anticholinergic, which means it suppress the involuntary movements of the smooth muscles of colon.  Also helps reduce the spasm like feelings associated when I fart and poo.

Celexa (Citalopram):  20mg One pill a day. This is an antidepressent and anxiety medication.  I've found it to be very helpful in maintaining my mood.  Even before UC I was always a very anxious person.  This medication has helped me feel more stable and easyier to feel more "ok" about things.  It has also helped me avoid those depressive feelings from the effects of UC.

Zantac (Ranitidine) 75mg:  I carry this with me in my bag just in case of heartburn.  I don't usually get heartburn that often but when I do I'm glad to have a Zantac to make it go away.

 I bet you didn't realize how many pills I'm taking everyday.  Now you see why I carry my med bag where ever I go too.  It's just one of those things I've gotten use to while being subjected to this UC life.  I can't wait till the day that I don't have to take so many meds everyday.

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.