Merry Christmas

Merry Christmas and Happy New Year

From my home to yours.

Surgery is over but the wait is not

I spent 16 days in the hospital this time.  My doctor removed my rectum, sigmoid part of colon and resectioned my stoma, a new stoma was made.  Apparently what looked like a hernia was nothing more than a kink in my small intestines just below the stoma.

My doctor cut off the top stoma and made a new one by pulling up the kink unto the tummy line.  It took 14 days of no eating anything including ice chips before my intestines would finally work. 

My GI doctor suggested using a small amount of Miralax to jump start things and sure enough I began going again.  Now I will be using a small amount of Miralax on a daily basis to keep things going.

Been to see my colon surgeon yesterday because of the receding stoma - looks like more surgery is again on the table will know more next Monday.  I am dealing with painful bleeding granulomas as well which makes my appliance's not fit properly.  So I go in 3 times a week for changes.

While in the hospital I found out the my lungs are getting worse - I now have both of my lungs partially collapsed with a COPD diagnoses.  There is a fear that the PH is getting worse I will be seeing my PH doctor on Dec. 23rd to see what can be done.  My oxygen is now dropping to 90 - 93 mark at night - we need it to drop into the 80's before they give you oxygen at night.  Daytime O2 is still at the 96 level which is good.

I had to give up my percussion vest as it was causing more pain in my back muscles than it was helping me with my cough. 

As for Michelle - it had been brought to my attention by one of my followers who read my blog to read the comment section of Michelle's blog.  I learned that our dear friend has passed away on Nov. 3rd.  She fought a hard fight of breast cancer for 3-1/2 years, she is now pain free and resting peacefully.  Please remember to pray for her family.

Talk to you soon, Deb.

Where has the time gone?

I know it's been a few month's since I last posted.  I have been going through a lot.  Been to the surgeon a few times.  Went to the ER 2 times.  And will be having more surgery on the 30th to remove my rectum, last of my sigmoid colon and fix my parastomal hernia with mesh.

The surgery is necessary because I now have the worse case of Active Colitis my doctor has ever seen.  The pain is so severe I jumped 2 times on the table while asleep during my recent sigmoidoscopy. 

Many who read my blog have asked me about Michelle and I too have not heard from her since her trip to Kansas.  If any has heard from her please tell her I said hi and that I am praying for her.  Deb

3 weeks since my ileostomy

I am still trying to learn how to change the appliances.  There are so many products on the market that I have a hard time choosing what one to use.  I am finding ones that don't agree with my skin - skin rashes are now present as well as irritated skin.

I ordered all latex free products from 6 different companies some of the samples have arrived - some are going back not for me. 

I have to use pouches, adaptors, paste, powder, rings and things.  This surgery was my only resort but it is a lot of work to maintain it to prevent infections.

Lilly doesn't sleep at night so I have to set 5 alarms just so I can get up to empty or burp her.  Lilly acts like a new born - she sleeps all day and when I try to take a nap she wakes up and has to go potty - typical baby right? 

Anyway I am doing well and will get through this and it will become second nature to me with the Lord's help.

Surgery is over, now at home

My surgery was on July 10th, was suppose to be a 2 hour surgery.  A cut here, a snip there and wallow a stoma.  Yah right, not me.

I complained for 6 months of pain in my groin area where I knew my doctor originally spliced my 10" of colon to my intestines, but no doctor would listen to me.

When my surgeon went in to do the snipping she discovered my junction was completely attached to my pelvic wall, hence the pain and an extra 1hr an a half more for surgery.   Total time 3+3/4 hrs.  1hr for recoup then up to my room.

I asked the nurses to move me via the slide sheet because I know how sick I get - nope they insisted I move myself (big mistake).  I got sick of course.  I told them bring a bucket and at the same time told them I was moving my bowels already.  They said that was impossible - "I feel it" I yelled.

To our surprise I prolapsed about 6" of my intestines into my new pouch, they had to call my surgeon who was already at home.  She had to travel an hour back to the hospital 9:30 at night to put me back together again.

Now every time I cough I have to press on my stoma so she doesn't prolapse again, if she does you guessed it more surgery.  I was supposed to go home 5 days later but Lilly as I call her wouldn't cooperate so I had to stay 8 days.  Now I am home learning how to work with her. 

Ostomy Training

My Stoma Nurse is very nice, she was late and kept apologizing, she said it was one appt. after another. We told her it was okay not to worry.

I will be getting a two piece appliance because of my neck fusion, I can't see to empty it so I'll just remove it - empty it - attach it and away I go. Piece of cake.

Frieda told me that I am a lucky one as for supplies because I will not have to keep getting upgrades from other companies. I'll be able to stay with one company thanks for having a Latex allergy.

I am sorry to say this but bring it on - I am tired of "trying" to go, I am ready to get this over with.

Wednesday seems so far away.  After my surgery then I keep her until I learn how to do all the care by myself.  She said I will be coming to her on an outpatient basis once in awhile to see how well I am healing.  This shall go well I am not worried in this least little bit.

My friend said, "where's an update?"

I can't agree more with her - time sure flies by when one is having so much fun, LOL. 

I will begin with my results of Cardiopulmonary Stress Test:  
  
     I saw my cardiologist on April 16th,  I was told I have an Interstitial lung disease called Bronchietasis, which is restricting my airways and causing exercise induced PH (mild), I was to make an appt. with a Pulmonary specialist for more testing.  I already knew this from a year ago from my trip to Mayo Clinic.

     I finally got into my new Pulmonary Doctor on June 5th.  He confirmed everything and said at the present time since the PH is caused by the Bronchietasis he needs to deal with that so I do not progress to a higher level of PH.  I was told that there is no cure for Bronchietasis just treatment so that is what we will work on.

     He further said that I need a percussion vest to help in breaking up what is in my lungs.  But with my insurance they are saying I must meet all 7 criteria before they let me have one.  I meet all but one - the need for 3 different kinds of antibiotics for the lungs within a year at 3 different times.  Due to all my antibiotic allergies I have been able to only take 2 kinds, so now it's fighting with the insurance company.  I will see the Pulmonary Doctor in September for a follow up.  He said if I can't get the vest he'll have to go into the lungs directly to help clear it out.  I am praying the insurance allows me the vest.

Okay now unto the intestines:  A  problem that will be fixed soon.

     Changed my diet drastically but  no changes in bowel habits occurred even after my 10 days of antibiotics so my GI doc said it was time to go see the colon surgeon again to see if she had any suggestions.  I saw her on May 30th.  She ordered another defecography to confirm her thoughts.  which it did.  Rectal prolapse with rectal damage to the muscle, Pelvic floor dysfunction.  Nothing was working right.   She called me on Friday, June 21st and said to come in on the 25th to discuss my options, really there was only one. 

     On July 10th I will be having an Ileostomy done.  It is similar to a colostomy but only using my intestines for the Stoma because I do not have much of a colon left. 

     I am not upset with this at all as I have been in so much pain and my stomach so distended I look like I am 5 months with child.  Hospital stay is based on my body and how it responds, I will be going for  Stoma training prior to surgery but that still needs to be set up.  I will try to post more often as my friend says she checks my blog for updates on a regular basis. Talk to you soon, Deb.

Colonoscopy Completed

I had my colonoscopy done today - more problems than I thought but at least I am getting somewhere.

They only slightly opened up the stricture with the balloon.  My major problem was what the small intestines looked like.  Many areas of the small intestines were enlarged and full of fluid specifically in the area of the liver.

I had to do clear liquids for 4 days prior.  Then on Sunday did the entire colon prep.  Emptying took a total of 12 hours before I was done.  On Monday had to repeat the whole process again, I thought I'd start the colon prep at 3 in the afternoon so I could sleep all night.  Nope 12 hours later I thought I was cleared out, was not according to the surgeon.

One colon prep is all one is suppose to need, not me.  I was diagnosed with  Intestinal Pseudo-Obstruction.  This goes hand in hand with my Autonomic Dysfunction.

See site:  http://en.wikipedia.org/wiki/Intestinal_pseudoobstruction
or go to:  http://digestive.niddk.nih.gov/ddiseases/pubs/intestinalpo/

This means changing my high fiber diet to a non or low fiber diet.  No more wheat, Metamucil, my psyllium capsules.  I have always ate a high fiber diet to keep my diabetes in control and to help bulk up the stool, this will be interesting see how my new food plan works on my diabetes and my emptying.

The doctor also found that a have a bacterial overgrowth so I'll go on some strong antibiotics for 10 days then go back to see him in 4 weeks to see how I am doing.  If things in my intestines don't improve in the 4 weeks I'll be facing more tests and/or surgery to help relieve the pressure that is building up. 

My Cardiopulmonary Stress Test is finally in my Dr's hands I will get the results on April 16th.

Now We Wait For The Results

I had my Cardiopulmonary Stress Test on Friday.  A test I hope to never have again.  Not fun at all.  All they told me was it didn't look good. "We will send the test results to the ordering doctor, Dr. S. my cardiologist.  He should contact you for a follow up and let you know what to do next".  They did not say how long it will take to process the results.

They also told me to have my primary care doctor request to see one of their PH Dr's.  So Dr. K will also get the results.  Dr. R.  is booking out into June.  But that is okay with me I have been waiting for years for the proper diagnosis I can wait a couple more months.

While I was on my way to Madison - my GI doctor called to tell me my results of my small bowel follow through test were not normal for a few reasons.  Apparently my small bowel muscles are not working at all.  The other problem is at the junction where my small bowel was reattached to my colon there is an obstruction as well as it has narrowed in a few spots.  There is also a rectal prolapse that is in need of repair.

I have to call the office on Monday and schedule a colonoscopy so they can insert a balloon to try to stretch the colon enough to help things pass through.  My doctor said there are many risks involved and I might end up having emergency surgery on the spot.  I am not looking forward to this procedure.

Once this procedure is done we will then see what can be done to help the muscles work in my small bowel.   At the present time I have no clue what I am up against.  I keep telling my friends and this too shall pass.   My new nick name from my girlfriend is "abbynormal".

Now We're Getting Somewhere

You guest it the people who were suppose to do the test since Jan. kept giving me every excuse under the sun.... you have to wait a month after a cold, I'm sorry the computer to the equipment is broken we have to send it out for repairs (that took 3 weeks),  the doctor is still on vacation (for 6 weeks?) yeah right, the latest one was over a week ago we don't have a treadmill (might be able to schedule her next week, we'll call her). I never got that call. Anyway how can they not have a treadmill? And where are they getting one from?  Another state?  This test is set up in a rehab dept.  Enough excuses already I will go elsewhere.

 My Cardiopulmonary Stress Test is being done on Friday the 22nd at 2pm at another hospital in Madison, WI.  Same hospital where my new PH Dr. works out of.

I had one of my tests for my intestines last Friday, the 15th - it took 6 hrs and the doctor said I probably had to stay another 3 hrs so he halted the test and said he had enough info for my new GI Dr.  2 more tests are needed - I should get that call soon - then we can decide what path I take.  My test came back abnormal my autonomic dysfunction is causing me a whole lot of problems.  Talk to you soon, Deb.

Yes, there are more tests

Yes, there are a few tests I haven't had.  UGI - Upper GI test then a test called small bowel follow through.  I've been scheduled for this Friday the 15th.  I have to swallow barium and take pictures until it goes all the way down and out.  Can take as long as 6 hrs, depending on how long it takes for the small intestines to work.  My case due to hypo-motility issues most likely 6 hrs.  There is also a breath test where you drink some stuff and they test your breath for bacteria.

I saw the new GI Doctor - we like him very much.   He had said based on my recent test results my problem can be caused by adhesion's from my colon surgery or could be caused by my autonomic dysfunction and in that case no treatment is given.  If it is adhesion's then surgery is needed to correct the problem.

The doctor will call me with the results and let me know what is the next step.  He said that my problem is not normal and he will try to find the cause - might not be able to fix it - but he'll at least get to the bottom of the problem.

All my blood tests from my primary doctor came back just saying I have had past infections recently.   No word on the Cardiopulmonary Stress Test - that doctor is supposedly still on vacation.  Yeah right since the last week of January. 

Can any more tests be done?

In the month of February I have had countless number of tests done: Ultrasound, Xrays, HIDA Scan, CT Scan, Endoscopy, stomach emptying study just to name a few - all saying the same thing: gaseous distended of the stomach and duodenum but no small bowel obstruction. Gallbladder is functioning normally,  I had a blockage at the junction where the large colon and small intestines are sewed together - which is fine now.  3 tests also showed my right lung is partially collapsed.  They think it could be caused by a forth of my intestines are up under my liver and diaphragm into the chest area. 

Have had many different kinds of blood work done - checking for muscle and heart problems.  Still waiting for those results to come in.  Some were sent out could take 10 days I was told.

I was sent to a pain management doctor for shots in my stomach to stop the pain and the muscle cramps but the only thing they did were numb me for 2 days then the pain came back in the RUQ with charlie horses.  No relief from the shots.  The GI Dr who sent me said I had Costochondritis but my primary care doc said no and so did the pain doc.

I have been referred to another GI Doc who specializes in conditions of the small intestines - that appt. is on the 12th of March.  Not sure what he will do - all I know is I look like I have a basketball inside the upper part of my stomach and a portion of my chest.  I have pain all the time, charlie horses every evening and my water pills are not helping with that area of my body. 

As for the Cardiopulmonary Stress Test - that has never been done either.  I have called that clinic on 3 occasions in Feb. asking to be scheduled and they kept telling me the only doctor who does this test is still on vacation.  It's been a month now and clinic has told me not to call them anymore they will call me when he gets back.  I called my PH Cardio Doctor who ordered the test and told them what was going on - they called the clinic and was told the same thing "he's on vacation" and they don't know when he'll be back.  My doctor is looking into another location to have it done - he will call me back tomorrow. 

I'll update so soon as I know more.

Further Testing on Hold

I was told in December that I need a Cardio/Pulmonary Stress Test before going forward with the Pulmonary Hypertension.

I saw my PH Cardio Dr who got me in touch with the Dr who does this special kind of testing.  All plans were set, I was to have this 2-1/2 hr test on Jan. 7th.  The only thing that would prevent this from happening is a cold.

Well at Christmas time, everyone in our building came down with something and of course so did I.  I got a cold that wouldn't quit.  Turns out it was severe bronchitis.  I was put on antibiotics and cough suppressants.  I had to put the test on hold.  At the same time the clinic returned my call to reschedule the test telling me their computer for the equipment was down, it needed to be fixed.

I waited a week called back and was told they needed to get a new computer and have it programmed could take more time and I have to wait a month after the bronchitis to be well enough to have the test.  So we were going to plan the test for the second week in Feb. 

My plans are again on hold because my bronchitis came back with a vengeance.  This time I was given Prednisone, antibiotics and stronger cough suppressants.   The test will have to wait and so will my RHC because I am also having problems with my gallbladder. 

If the Gallbladder has to come out I'll have to wait an additional 6 weeks, been in testing for the gallbladder for the past 10 days.  Endoscope and ultrasound.  Final test was the HIDA scan.  Which took 2 days thanks to some complications.  7 attempts to get the IV in, then an hour into the HIDA scan my IV clotted off and they couldn't get the second part of the meds in.  Since I could not have any more attempts at the IV I was told I had to go back the next day and have a pic line put in to do the whole test over again.  I look like someone strangled my arms, they are covered in bruises.  The Dr should get the test results of the HIDA scan on Monday or Tuesday and will let me know what's next.  I'll try to keep you updated.