Hi all. This post turned out to be longer than I planned. I hope some of the vets will give this a look.
The basics:
Misdiagnosed w UC x decades.
Crohn's diagnosis made 3 yrs ago.
Horrific surgical history.
No gut. Not short gut, no gut.
On Humira almost 3 yrs.
The Humira 40mg x 14 days is going to be increased.
I'm staring at the Imuran bottle I'm supposed to begin. I have questions for those of you with Imuran experience & will find a Imuran thread next.
Last surg was over 20 yrs ago. I have been told repeatedly to GUARD STOMA bc there is not enough intestine to create new one. What have I said to drs/techs all these years? "Please please be careful. Remember, there is a kink just inside the stoma which makes entry difficult. There's not enough to make a new stoma, please be careful."
Five days ago the GI performed an ileoscope. Inside the stoma and into the 9" or so of remaining intestine he found new ulcers. One is 12mm.
That's bad enough. Here's the part I'm insane with worry over. The day after the scope I changed the bag/appliance. The stoma was 2/3's BLACK. BLACK.
Immediate call to GI, he says it's necrotising, get to ER. (Will save for another time how appalling it is that these many years later the ostomate is the only one who knows ANYTHING about the appliance, never mind the stoma.)
The Emergency Dept. drs were at a loss and got the GI to the ER. The conclusion: He "thinks" it's "like a hematoma." He had to force the tube and the camera inside and in doing so, caused the trauma. "Why did you force it? Did you forget/not believe me about the narrow and kinked passage?"
(FYI: He's been in there twice. And other GI's in that dept have been doing my scopes for 14 years, without complication.)
"Did you use a pediatric tube? Is my stoma dying - is it just going to fall off? WHAT is going to happen?" Again, he "thinks" it will "take time to heal but that eventually it will be alright." I've heard that a million times but that's for another day.
I am allergic to and/or have adverse reactions to multiple medications which includes, and this is important to me right now, pain medications. There is nothing I can take but about a 1/4 piece of vicodin. It's the acetaphetemine (sp) that makes me ill.
My worst fear at this moment is doing the change tomorrow and having to see it again. Will it be in worse condition? What else is happening there now? Are there more surprises? I'll find the appropriate thread to look for feedback about stoma conditions and others who may have had experience with this.
I knew I was in a serious flare because I have never been in remission. But with this acceleration, the "don't move don't eat" treatment I've used over the years was not working.
I am horrified. Petrified. In a rage over the fact that there is no real improvement in treatment of these diseases even with the technology and that in fact, not all, but the majority of drs are still clueless. It's all about research and academics and making a name.
The facility I'm seen at IS the "best." I have been everywhere. I have been over the country. I have "found" the surgeons who "fix botched surgeries and aren't afraid of a challenge." Because of ALL of them, I ended up here. Again, at the alleged "top facility." There is NO such thing.
As patients we are lucky when and if we find the excellent physicans and surgeons and nurses, techs, who are as kind as they are skilled and brilliant. Who work WITH patients; who know that patients know their bodies, who listen.
Sadly, they are quite rare. Patients, ostomates, are still being ignored, mishandled, mistreated. If a patient "gets better" and doesn't ever bother the dr, the dr is happy.
If there is the slightest problem, if the spiked temp/the new pain/the increased pain/the patients' complaint of continuing problem which turns into a full blown infection, abscess, rupture, gangrene, peritonitis, whathaveyou - it is still the patient's fault! You weren't a "good patient" - if it doesn't compute in a drs textbook-mind, it doesn't exist and the patient suffers along from med/surg crisis to med/surg crisis.
If you're still reading, thank you. As you can tell, I'm beyond angry and fed-up. Will search the forums now that you guys have available.
Kate
(I'm sure there's a spellcheck somewhere, I'll find it.)
The basics:
Misdiagnosed w UC x decades.
Crohn's diagnosis made 3 yrs ago.
Horrific surgical history.
No gut. Not short gut, no gut.
On Humira almost 3 yrs.
The Humira 40mg x 14 days is going to be increased.
I'm staring at the Imuran bottle I'm supposed to begin. I have questions for those of you with Imuran experience & will find a Imuran thread next.
Last surg was over 20 yrs ago. I have been told repeatedly to GUARD STOMA bc there is not enough intestine to create new one. What have I said to drs/techs all these years? "Please please be careful. Remember, there is a kink just inside the stoma which makes entry difficult. There's not enough to make a new stoma, please be careful."
Five days ago the GI performed an ileoscope. Inside the stoma and into the 9" or so of remaining intestine he found new ulcers. One is 12mm.
That's bad enough. Here's the part I'm insane with worry over. The day after the scope I changed the bag/appliance. The stoma was 2/3's BLACK. BLACK.
Immediate call to GI, he says it's necrotising, get to ER. (Will save for another time how appalling it is that these many years later the ostomate is the only one who knows ANYTHING about the appliance, never mind the stoma.)
The Emergency Dept. drs were at a loss and got the GI to the ER. The conclusion: He "thinks" it's "like a hematoma." He had to force the tube and the camera inside and in doing so, caused the trauma. "Why did you force it? Did you forget/not believe me about the narrow and kinked passage?"
(FYI: He's been in there twice. And other GI's in that dept have been doing my scopes for 14 years, without complication.)
"Did you use a pediatric tube? Is my stoma dying - is it just going to fall off? WHAT is going to happen?" Again, he "thinks" it will "take time to heal but that eventually it will be alright." I've heard that a million times but that's for another day.
I am allergic to and/or have adverse reactions to multiple medications which includes, and this is important to me right now, pain medications. There is nothing I can take but about a 1/4 piece of vicodin. It's the acetaphetemine (sp) that makes me ill.
My worst fear at this moment is doing the change tomorrow and having to see it again. Will it be in worse condition? What else is happening there now? Are there more surprises? I'll find the appropriate thread to look for feedback about stoma conditions and others who may have had experience with this.
I knew I was in a serious flare because I have never been in remission. But with this acceleration, the "don't move don't eat" treatment I've used over the years was not working.
I am horrified. Petrified. In a rage over the fact that there is no real improvement in treatment of these diseases even with the technology and that in fact, not all, but the majority of drs are still clueless. It's all about research and academics and making a name.
The facility I'm seen at IS the "best." I have been everywhere. I have been over the country. I have "found" the surgeons who "fix botched surgeries and aren't afraid of a challenge." Because of ALL of them, I ended up here. Again, at the alleged "top facility." There is NO such thing.
As patients we are lucky when and if we find the excellent physicans and surgeons and nurses, techs, who are as kind as they are skilled and brilliant. Who work WITH patients; who know that patients know their bodies, who listen.
Sadly, they are quite rare. Patients, ostomates, are still being ignored, mishandled, mistreated. If a patient "gets better" and doesn't ever bother the dr, the dr is happy.
If there is the slightest problem, if the spiked temp/the new pain/the increased pain/the patients' complaint of continuing problem which turns into a full blown infection, abscess, rupture, gangrene, peritonitis, whathaveyou - it is still the patient's fault! You weren't a "good patient" - if it doesn't compute in a drs textbook-mind, it doesn't exist and the patient suffers along from med/surg crisis to med/surg crisis.
If you're still reading, thank you. As you can tell, I'm beyond angry and fed-up. Will search the forums now that you guys have available.
Kate
(I'm sure there's a spellcheck somewhere, I'll find it.)
