Reply to aTraveler
Bless you, sir,
Thank you for posting your experience!
Clearly, your journey has been a challenging one; I hope that you are finding the blessings of being finally outside the hospital environment - for in this respect we are the fortunate ones. A three-month inpatient stay, including rehab, in pretty well one stint, must have been tough - both for you and your family.
Although I am not a medically trained person, like many folk with a long timeline of medical history, one becomes more informed over time - but usually, only by degrees, following the actual 'latest' experience.
This is why, here within MAO, the patient perspective is SO SO SO valuable: Particularly, for us to participate in a firsthand sharing exchange BEFORE an upcoming phase of treatment. The balanced, more extensive view from the point of empathized reality of another, who has lived the consequences - following the clinical explanations - THAT allows for more of an INCLUSIVE UNDERSTANDING :-o
Thank you so very much for taking the time to document your own experience - it endorses my own concerns but also may help put them into perspective too.
My current surgeons are being openly upfront and do set out the outline of risks that I must consider - and for that, I am grateful.
Please, are you able to give an update in any way as to how your experience has affected your ongoing life now that you have left the hospital environment?
From what you have written, you and your wife have an ongoing challenge.
I can fully appreciate the scenario of 'learning to walk' again - having done so myself - for back in my twenties when my bowel perforated, I too experienced numerous challenges - some of which, like replacement ankle attempts and the like [- many years later -] have implications far beyond the events of even small holes/bowel perforation.
In your own case, I am thinking that your prior bowel history was the setting when upon resection your problems with fistula formation/fecal discharge began.
In my case, I have, generally, been most fortunate for forty years of having a Brooks stoma following my proctocolectomy, for whilst life had its challenges - there was a 'clean' management of a single well-formed spouted stoma. And although one's lifestyle was a 'measured one' - I have lived a pretty full life.
I am now at the stage where unfortunately, whilst I have experienced - eventually, following legal recourse in order to ensure the same - good private surgical repair following the explantation of my TIES device and subsequent problems attendant thereto, I now find I am faced with the need for further surgery in that repair ....
..... So as I have extensive adhesions [scar tissue] the net result is a very VULNERABLE BOWEL which with the utmost surgical expertise being employed, there is a very real likelihood of bowel puncture and the all/some/most of the complications you have so experienced within your own situation.
I wonder, therefore, "How is life now that you have returned home"?
As you appreciate, our circumstances are different and I have far less of my tract remaining than yourself - but, nonetheless, your own experience of discharging fistula management is particularly insightful for me ..... and may, should this occur with me ...... be helpful to know more.
A separate discourse would probably be needed for full appreciation of what wound management was employed - for even within my own deep sinus network discharge around quite an extensive parastomal area .... I only had a consultation with a consulting dermatologist clinician, and practically, was left pretty well to my own resourceful home - house/bedroom confines - to air manage my air healing and applied tapes protections whilst continuing to experience the pain levels that went on for many, many months.
Over time - and I would be interested to learn of timelines - have your fistulas finally healed altogether? Or do you still experience consequences therefrom?
I also appreciate - from your own narrative, that you have had the benefit of specialist wound healing treatment - such professional specialist knowledge and experience must have been so valuable in progressing your healing. For I hear loud and clear the home management challenges too!
So often we have so little understanding PRIOR to events - WHAT OUR AGREEMENTS/EXPECTATIONS POTENTIALLY HOLD FOR US.
It is the patient who lives on through the reality of life - long after interventions within the operating theatre.
Naturally, I am very concerned, for my personal application as regards my upcoming surgery, because I do understand the very real possibility of bowel puncture - and also the possibility of fistula complications following that ..... not to mention the fact of possible loss of further bowel to the point of vein feeding becoming a necessity.
You have mentioned your bleeding, and blood clots, and indeed the consequence of these. Not something to dismiss!
Whilst what we are exchanging here is tough call stuff, your very sharing of it provides me with a balance for my concerns - as you appear to have come through .....
Hence, I enquire how you 'travel' your journey today?
Thank you so much,
with much gratitude,
I send you - and your wife, blessings
~ ~ ~ ~ ~ waves ~ ~ ~ ~ ~
from the Welsh-Mid UK hills
BW
Jayne
... BTW ... I love the 'We're in it together' image of your profile - the cycle of love, care, and connection says it all! :-)
PS I am not a premium member at present - so my exchanges are all in the public forum - and I do appreciate this and hold no expectation for details ..... So please, do accept my sincere thanks for that which you have shared - I am particularly grateful. TY again.