Whoops!! I just realised how long it has been since my last blog update...
The last one was 6 months after my "last" surgery for adhesions. I was doing well at that stage and have to say that for a whole year after that surgery I was able to eat well (carefully chosen foods of course) and had very few serious problems with obstructions. Of course I am referring to what we in the PMP community call our "new normal" ... some pain and/or discomfort is expected on a daily basis .. it is only when it increases passed that 'new normal' that alarm bells ring.
Unfortunately the old familiar 'twisting' of the small bowel began again in ernest after that and was causing problems with partial obstructions once again and the odd total obstruction (that luckily I was able to deal with at home). Eating was becoming an issue once again because it was causing a lot of discomfort ranging to severe pain for anything from hours to a couple of days after eating something my body decided it didn't like (it was obviously getting caught in little sections again like before the previous surgery)
It was time to make an appointment for a review with Prof Hewett.
He asked lots of questions and decided to order an barium follow through.
Surprise surprise - that showed no problems.
Just to revamp - in 2010 it took a year of various tests to show anything up prior to surgery - and then there was only a small area of banding showing up which he thought he could 'fix' via keyhole - WRONG - that surgery was the full open incision, very extensive and required three bowel resections where it has burst during surgery. A long recovery time.
This time he said he was ignoring the fact the X-rays didn't pick anything up & wanted me to think about having surgery sooner rather than later while it was still relatively minor - hopefully a keyhole procedure. He gave me 4 weeks to think about it. In his words "I don't want it to get as bad as it was before"
After a lot of angst & thought and lots of discussion with hubby I decided to go ahead with surgery hoping it would be an easy fix.
Surgery was scheduled 2 days after I saw him for my follow-up appointment - striking while the iron was hot as they say!
So on July 5th I was scheduled for a keyhole procedure (with an understanding he would revert to the open incision if needed - he said if he found anything more extensive it would be remiss of him not to deal with it at the time - I agreed)
I woke in HDU to find the surgery had required a large open incision.
When Prof Hewett visited the next morning he explained that the adhesions were so bad that he was unable to see anything with the camera and had to open the abdomen ... he worked hard on clearing the adhesions in the area I was having problems - bursting & resecting the small bowel in two places and then 'bailed out' because it was too dangerous to proceed any further.
He said the Adept Gel he used before finishing the surgery last time in 2010 (to help inhibit further adhesions) clearly did not work at all.
He also said any future surgery is NOT possible!!
I was moving along nicely with my recovery - moved onto free fluids and a day before discharge I had a total obstruction; extreme pain, vomiting, NG tube inserted, emergency CT scan (he thought one of the resections may have burst or be leaking) and I was bounced back to HDU.
In HDU it was decided that a PICC line needed to be inserted because even the ICU doc who specialises in neonatal canular insertions was unable to insert a line. I was put on TPN (fed via the blood) and it then turned into a waiting game to see when & if I would be able to tolerate food.
I was in hospital close to three weeks and kept on TPN until the night before discharge. I was back on ice chips & VERY gradually moved to clear liquids & then free fluids. My surgeon was very reluctant to 'push' the foods as he knows further surgery is not an option.
I finally 'negotiated' my way home on free fluids after almost three weeks in hospital (I had another partial obstruction when they tried to put me on a low residue diet but I believed that I could monitor my food choices better at home)
I have been home a little over three weeks now ... still on mainly free fluids with some tiny amounts of soft steamed fish, eggs, and soft chicken being tolerated and some dry biscuits and toasted white bread (all in small amounts)
I am also supplementing my diet with fortisip ...
I saw my surgeon for a post op check a week ago and he seems to think this may be 'as good as it gets' - I see him again in a couple of weeks & I want to be able to say "you were wrong!" ...(The power of positive thinking!!)
I am slowly regaining some strength and although the pain level from the wound/internal abdomen is still high at times it is improving. There was a section of wound that was not healing properly - that seems to be almost fully healed now too.
So baby steps toward recovery ... at least they are in the right direction at the moment!!!
It is SO good to be home getting the most precious daily "cuddies" from my beautiful granddaughter!!!
I am now looking forward to being given the 'all clear' to get back in the heated pool to exercise with my friends once again!!
Life is good and each day is a blessing - never take it for granted!!
Hugs, Kay :)
I have been asked to tell my story so this blog is being developed to give hope to those who are newly diagnosed with Pseudomyxoma Peritonei ...... please scroll down to read my journey with PMP since 2001. I will - as this blog develops - also share some information about my multiple health conditions & the daily challenges faced when dealing with them - mostly autoimmune in nature. I share this information hoping that it may help others in similar situations in some small way.
Sharing my blog
As I mentioned in the title blurb - I am sharing this blog because I was asked to … NOT to highlight my health problems but to offer hope.
SO- If sharing my journey helps even one person to cope with a cancer diagnosis such as PMP/Appendix cancer then I am very happy indeed!!
SO- If sharing my journey helps even one person to cope with a cancer diagnosis such as PMP/Appendix cancer then I am very happy indeed!!
Life is such a blessing each & everyday!
Treasure each of the small things life brings
- and always remember -
The small things in life are really the BIG things!!!
Treasure each of the small things life brings
- and always remember -
The small things in life are really the BIG things!!!
LIFE IS GOOD!
Sharing a quote from Stuart Scott of ESPN who passed from PMP/Appendix Cancer after a fight of many years. This quote was part of his speech at the ESPY Awards and is good food for thought!
"You beat cancer by how you live, why you live and the manner in which you live!"
Remembering & honouring our PMP Angels everyday - sadly missed.
Magic Moments
Friday, August 17, 2012
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