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.