Thursday, March 31, 2011

Good/bad day? - 31 Mar 11

Yesterday was an unusual day for me.  Finally was able to attend my own gong away/retirement luncheon.  Held at Kelly's Bar in Nob Hill I was surprised at the amount of folks that showed up.  Practically the whole directorate.  Without any sarcasm it was heartwarming.

But then, my wife has me drive her to my coumadin appointment.  I passed the driving test and am now allowed to drive a vehicle once again.  We will leave it there.


Coumadin was at 3.1 so doc decided not to change anything and see what it will be in 2 weeks. Small victory.

Sunday, March 27, 2011

GI Doc...

Been too lazy to post.  Went to GI doc on Friday.  Still the same bedside manner but no big deal.  Changed the type of probiotic I'm using.  He emphatically stated what I was using was worthless.  Good enough for me.

Told him that I have had 6 out of 9 days in where I have went to the bathroom 5 times or less during the day, he seemed to like that.  All due to the change of narcotic (codeine Sulfate) and Lomotril.  Picked up an iron supplement at Pharmica  (Culturelle)on his suggestion, hopefully it will digest and be absorbed much quicker into my system.

He will now see me in two months.  Which is OK.  Since, once again, it will be another year and a half before I approach some resemblance of normality.

Ended up going to the mall and bought 2 new shirts and a pair of Levis.  Funny but a 32" waist is now my size, instead of 36-38" prior to the operations.  In reality I think a small would be OK for the shirts but the wife said the medium looked good.

Then ended the day up by going to  Subway and having a soda and some kind of cold cut sandwhich, which by the way was heavenly.  Had olives on my side of the 12 incher and sure enough 3.5 hours later they went right though me.  Still did not detract form being able to somewhat normal for a while.

Enough for now.

Wednesday, March 23, 2011

Not a happy camper today

Damn sure not in a good mood today.  Again up most of the with gurgling intestines then dealing with a butcher this am draing blood and then on top of that I find out that I am going to have to have an iron infusion.......  This crap never ends.

Tuesday, March 22, 2011

Tuesday the 22nd

Had a decent night, up and in the bathroom at 1:30 AM.  Since starting the Lomotil and a different narcotic the bowel movements have drastically changed. Am starting to become more secure in knowing that I have time to get to the bathroom once the pressure starts.  Instead of going to the bathroom 12 to 15 times a day I'm now down to 5 or 6, a major improvement on just a month ago.

A picture of my buddy (who is now sitting on my lap as I type this.)

Monday, March 21, 2011

Miserable Sunday night

Once again had a rotten night.  Woke up about 2:15 AM, sour stomach, intestines gurgling beyond belief, finally went to the bathroom at 2:30 and tried to eliminate as much as possible.  Damn near threw up.  Didn't work.  Took a Zantac 150, didn't help.  Ended up just sitting up in bed until around 4:30.  Slept until 6:30.  Now 8:05 and stomach/intestines still gurgling like mad.  Tried to research on the 'net but to no avail.  Screw Web MD and all the other sites.  Unless you have a "popular" disease or problem you are screwed.  Gonna try and take a nap.

Sunday, March 20, 2011

Sunday-not much to say

Spent yesterday, Saturday, trying to see if I can still do yard work.  Flat wore my butt out.  Did de-thatching, running the lawn mower, hooking up water, etc etc.  Now this stuff sounds easy but when one goes from a big strapping guy to a walking corpse in less than 6 months it does present a problem.
  Lost a smidgen over 70 pounds and damn near all my muscle.

Slept for almost 10 hours....sheesh.

Friday, March 18, 2011

Chicken Fried steak

Well, the primary care doctor's appointment went off well. We discussed the low iron and she will speak with the blood doc once again and let me know if I really need to go see him.  (See bottom)

On the way home stopped at the Village Inn for dinner.  My wife, as typical, had a salad.  I, on the other hand, had Chicken Fried Steak, Tomato/basil soup and mashed potatoes. This might have contributed to the horrible night I had because of the dairy products involved.

Went to bed at 9PM, out like a log, and woke up at 11:15 PM with my intestines gurgling beyond belief, pressure so bad I did not think I was going to make it to the bathroom.  I did but it was all water.  Went back to bed and fell asleep immediately.

Woke up once again at 2:15 AM with the same symptoms.  But the pressure would come and go.  I tried to out last it but had to go to the bathroom at 2:30 AM., then could not go back to sleep until almost 3 AM.  Intestines continued to gurgle so loud at times I'm surprised my wife didn't hear it in the next room. 

Oh yeah, I forgot to mention but after coming home from the hospital we found out that if she was going to get any type of quality of sleep she would have to sleep in another bedroom so that is happening.  Been married for 36+ years and always slept together.  Kinda sucks but I get it and to be honest am getting used to it. 

Woke up a little before 7 AM and a 7:30 AM had breakfast of Chicken noodle soup.  Did not go to the bathroom again until 10:45 which is kind of a long time since the last one [2:30 am].  Still tired.

Damn... just got off the phone with the PCP nurse.  They went ahead and are setting me up for an IV transfusion for the low iron.  Damn... Damn..  They say it will give me more energy.. why the hell do I need more energy to sit on my ass and do nothing.  Called the wife since she has the appointment book and dumped it on her to call and make the appt.

Thursday, March 17, 2011

Coumadin clinic and other thoughts

Went to coumadin doc yesterday.  For the second week in a row I have been at 2.5......A minor miracle.  Now stretching it out to 2 week period and see what happens.

This afternoon have to see my primary care doc... she is allotted 40 minutes to talk to me and make whatever decisions she needs to make.  I have the un-pleasure of telling her I've cancelled the hematologists appointment and see what develops.  My iron levels are low, nothing new there, but with this last blood test I must have dipped a little lower than normal.  I'm gonna see if I can't correct it with a further change in diet.

Thinking about my stuff yesterday I realized that I went to sleep on July 9th, 2010 and did not wake up until almost 3 weeks and 3 operations later.  Have no idea, other than what has been relayed to me by my family, of what happened.  I can't imagine the grief my wife went through during that time, let alone the rest of the family.  What I do know is that they prepped for my death based upon the doctor's prognosis.  When I finally came home my home was not my home.  Some of the items accomplished I am grateful for since I still don't have my strength totally back and not able to do.  Some stuff like totally redecorating in preparation for the sale of the house just sucked.  We still have not returned the house to as it was before me falling down and playing dead.

Today started on Codeine Sulfate and Creon.  Stopped using Vicodin which I had been using to slow down bowel motility.  Crapping ones brains out is no fun at all. 

Wednesday, March 16, 2011

More about me

Originally from NE Ohio small town named Kinsman.  1900 people at the most?

Was a Federal Civil Servant working for the Air Force Research Laboratory at Kirtland AFB, NM as a Procurement Analyst until 7 jan 2011.  Prior to being here was stationed/worked at Anderson AFB in Guam, Vandenberg AFB in California, Bergstrom AFB in Texas, and a few other places (non-govt) in northeast Ohio.

Been an Air Reserve Technician teaching munitions to AF reservists.  Lord how I wish I was more mature in those days but a lot of times ammo troops just don't seem to have it all together until later in life. I guess we all have regrets in one form or another.

What is SBS you might ask........

Your small intestine is the longest part of your digestive system—about twenty feet long! It connects your stomach to your large intestine (or colon) and folds many times to fit inside your abdomen. Your small intestine does most of the digesting of the foods you eat. It has three areas called the duodenum, the ileum, and the jYour small intestine is the longest part of your digestive system—about twenty feet long! It connects your stomach to your large intestine (or colon) and folds many times to fit inside your abdomen. Your small intestine does most of the digesting of the foods you eat. It has three areas called the duodenum, the ileum, and the jejunum.


Short bowel syndrome, aka Short Gut Syndrome, (SBS) is a condition in which nutrients are not properly absorbed (malabsorption) due to severe intestinal disease or the surgical removal of a large portion of the small intestine.

SBS is a group of problems related to poor absorption of nutrients that typically occurs in people who have had half or more of their small intestine removed. The small intestine and the large intestine, also called the colon, make up the bowel. The small intestine is where most digestion of food and absorption of nutrients occur. People with short bowel syndrome cannot absorb enough water, vitamins, and other nutrients from food to sustain life.

The bowel is made up of the small and large intestines. The small intestine includes three sections—the duodenum, jejunum, and ileum.  Never have been clear on what was taken out of me.  But I do know that I have approximately 6 feet of small intestine left.

Diarrhea is the main symptom of short bowel syndrome. Diarrhea can lead to dehydration, malnutrition, and weight loss. These problems can be severe and can cause death without proper treatment.


Specific nutrient deficiencies may occur depending on what sections of the small intestine were removed or are not functioning properly. Sites of nutrient absorption in the small intestine are

• the duodenum, the first section of the small intestine, where iron is absorbed and where I have a lot of problems.

• the jejunum, the middle section of the small intestine, where carbohydrates, proteins, fat, and vitamins are absorbed

• the ileum, the last section of the small intestine, where bile acids and vitamin B12 are absorbed.

How is short bowel syndrome treated?  Time only time will take care of this.  At least that is what I get told over and over ad nausiem.

The main treatment for short bowel syndrome is nutritional support. Treatment may involve use of oral rehydration solutions, parenteral nutrition, enteral nutrition, and medications. Oral rehydration solutions consist of sugar  (Ahhhh mexican coke sold in Sam's club-I'm hooked!!) and salt liquids. Parenteral nutrition delivers fluids, electrolytes, and liquid nutrients into the bloodstream intravenously—through a tube placed in a vein. Enteral nutrition delivers liquid food to the stomach or small intestine through a feeding tube.

Specific treatment depends on the severity of the disease:

• Mild short bowel syndrome treatment involves eating small, frequent meals; taking fluid and nutritional supplements; and using medications to treat diarrhea.

• Moderate short bowel syndrome treatment is similar to that for mild disease with the addition of intravenous fluid and electrolyte supplements as needed.

• Severe short bowel syndrome treatment involves use of parenteral nutrition and oral rehydration solutions. Patients may receive enteral nutrition or continue normal eating even though most of the nutrients are not absorbed. Both enteral nutrition and normal eating stimulate the remaining intestine to function better and may allow patients to discontinue parenteral nutrition. Some people with severe short bowel syndrome require parenteral nutrition indefinitely.

What is intestinal adaptation?

After removal of a large portion of the small intestine, the remaining small intestine goes through a process of adaptation that increases its ability to absorb nutrients. The inner lining grows, increasing its absorptive surface area. Intestinal adaptation can take up to 2 years to occur. Researchers are studying intestinal adaptation and ways to help the remaining small intestine adapt more quickly and function better.
http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&query=short+bowel&x=17&y=16

http://www.oley.org/lifeline/Dietary_Management_SBS.html

http://www.ncbi.nlm.nih.gov/

www.nlm.nih.gov/medlineplus/ency/article/000237.htm

A first attempt.

Am not a gifted writer, don't pretend to be.

Since I have a lot of time on my hands, I figured on creating an area to vent some of my anger and anguish. Maybe even an attempt to explain, to myself, the feeling of hopelessness I have on ever feeling "normal" again.

I thought what better place than in public (so to speak) knowing that no one, or maybe just a few anonymous folks, will ever really see it.