Hi, my name is Jason and my Wife, Jane, was diagnosed in 2000 with Crohn's disease after 3 or 4 years of misdiagnosis.
We have been through many surgeries including 5 re-sectioning. Three resulting in colostomy bags and one ending in a 3 week coma brought on by septicemia after the re-sectioning leaked into her stomach cavity and into her blood stream. Just to rub salt into the wound, this was following surgury on the 24th of December, meaning Jane was comatose for Christmas and New Years, not realizing she had missed the lot until weeks later.
Maybe 4 years ago we were having a pretty good run so decided to sell one of our investment properties to help fund a nicer house for us. With in weeks Jane suffered another serious flare up requiring months off of work, eating up any money we made from the sale.
Being the youngest child and most responsible by a long way we have also taken on the care of Jane's late 70's parents. This meant selling our home and our last investment to fund a larger home with annex for the parents. Days after moving I was made redundant, as if that is not bad enough Jane was hospitalized with in a week of the move for yet more surgery. A few days after returning home she bent down to pick something up and felt a strange warmth, her stomach staples had ruptured due to yet another bowel leak filling her stomach cavity with fecal matter.
Needless to say this disease has been a physical, mental and financial struggle for us for over 15 years now and we see no end in sight. As I write this Jane is again in hospital after getting an infection in her pick line (used by me to administer fluids at home via a Baxter pump) and maybe her 6th bout of renal failure.
Just to top it off they are now saying it is time to take the plunge, the plunge being total removal of her anus and lower bowel, due to happen on May 22nd.
Now, we have resigned our selves to the fact that we will not "grow old together" and that Jane may not see 50 (currently 42), this is something we have not discussed with our 14 year old son as yet but we really would love just a few years to enjoy what we have struggled and worked so hard to never get. Some down time. For over 10 years now all our annual leave and sick days have been spent in hospital, hell it would be 5 years since we had a weekend away.
Just because, I guess, the disease has decided to bless us with a fistula that has been feeding an abscess for over 3 years now that has been draining though a wound near her bottom.
This is not a life, this is barely and existence.
I didn't mention the drugs and I am sure you all know the stuff I am talking about even if my spelling is off;
Humira, lofexinal, Azathioprine, Infliximab, Metronidazole, Steroids, Remicade, Prendisolone and even Imodium
Will this ever end, if Crohn's does not go away what will happen? What is the prognosis? Are we waiting for colon cancer to finish the job or is there hope?
One goo think we have found for Jane is the energy drink V it seems to get absorbed okay and have a few vitamins in it. Everything else is in the bag with in 15 minutes.
Sorry to drop this on you but I was searching, found your site and really need to vent.
Cheers,
Jason
We have been through many surgeries including 5 re-sectioning. Three resulting in colostomy bags and one ending in a 3 week coma brought on by septicemia after the re-sectioning leaked into her stomach cavity and into her blood stream. Just to rub salt into the wound, this was following surgury on the 24th of December, meaning Jane was comatose for Christmas and New Years, not realizing she had missed the lot until weeks later.
Maybe 4 years ago we were having a pretty good run so decided to sell one of our investment properties to help fund a nicer house for us. With in weeks Jane suffered another serious flare up requiring months off of work, eating up any money we made from the sale.
Being the youngest child and most responsible by a long way we have also taken on the care of Jane's late 70's parents. This meant selling our home and our last investment to fund a larger home with annex for the parents. Days after moving I was made redundant, as if that is not bad enough Jane was hospitalized with in a week of the move for yet more surgery. A few days after returning home she bent down to pick something up and felt a strange warmth, her stomach staples had ruptured due to yet another bowel leak filling her stomach cavity with fecal matter.
Needless to say this disease has been a physical, mental and financial struggle for us for over 15 years now and we see no end in sight. As I write this Jane is again in hospital after getting an infection in her pick line (used by me to administer fluids at home via a Baxter pump) and maybe her 6th bout of renal failure.
Just to top it off they are now saying it is time to take the plunge, the plunge being total removal of her anus and lower bowel, due to happen on May 22nd.
Now, we have resigned our selves to the fact that we will not "grow old together" and that Jane may not see 50 (currently 42), this is something we have not discussed with our 14 year old son as yet but we really would love just a few years to enjoy what we have struggled and worked so hard to never get. Some down time. For over 10 years now all our annual leave and sick days have been spent in hospital, hell it would be 5 years since we had a weekend away.
Just because, I guess, the disease has decided to bless us with a fistula that has been feeding an abscess for over 3 years now that has been draining though a wound near her bottom.
This is not a life, this is barely and existence.
I didn't mention the drugs and I am sure you all know the stuff I am talking about even if my spelling is off;
Humira, lofexinal, Azathioprine, Infliximab, Metronidazole, Steroids, Remicade, Prendisolone and even Imodium
Will this ever end, if Crohn's does not go away what will happen? What is the prognosis? Are we waiting for colon cancer to finish the job or is there hope?
One goo think we have found for Jane is the energy drink V it seems to get absorbed okay and have a few vitamins in it. Everything else is in the bag with in 15 minutes.
Sorry to drop this on you but I was searching, found your site and really need to vent.
Cheers,
Jason