WARNING: THIS IS A STORY ABOUT CROHN'S DISEASE AND STUFF OF THAT NATURE. IT'S NOT PRETTY, AND I HAVE HONESTLY REPRESENTED THE FACTS.
I had forgotten about this piece that I wrote for a wonderful group that I belong to: The Crohn's Disease Support Network. Some years ago, I thought that I was facing (and who knows, I still may, one day) some pretty major [health] stuff, again. As I researched the particulars of my situation, I wrote this blog and posted it on the CDSN forum, hoping to find someone else who had travelled this road with these circumstances; as far as I know, I am still the only person who may have to jump these sharks. An update: Since I could not get my insurance to agree to this surgery, I didn't get it done, so my J-pouch and I are still roomies. My docs switched me to Humira, which is basically chemo's tough, street-wise cousin, and we are getting along quite well. Maybe I will end up needing to go through all of this again, one day, but in the meantime, life is good, and I can't complain. The boat I'm in has some leaks, for sure, but it's still afloat, and at the end of the day, I'd like to believe that I can paddle with the best of 'em!
That being said, here is a post from approximately 2010 - 2011.
My reason for posting this is simple: I am trying to locate a kindred soul, and it might be you. I have Crohn's Colitis and a J Pouch, which is failing (the pouch...the CC seems to be in high spirits...), and I need to have an ileostomy placed, and soon. Righto. No problem. Been there, done that; however, since my last trip down "Ostomy Lane," alot has happened, and...ok, let's back up a bit.
In a (huge-ish) nutshell: Married '91, baby '92, lalalalala '93 - '94, pregnant sold home bought home fixed home baby #2 moved into home '95, sick ick flu yuck cramp couch weight gone husband injured two-story fall tired pain weak nursing baby ALWAYS sleep sleep (unconscious?) bathroom couch FLU! (Feb) housebound PAIN PAIN CRAMP BATHROOM FEAR FLU hospital RUSH very bad 10 bags saline per hour very dehydrated very delirious (Mar) NO FLU New words: Ulcerative Colitis 5 weeks Room E-41 NPO hush hush procedures pic line veins corrupted purple arms little girl little boy ever going home to them? New words: J Pouch ileostomy surgery (Apr) reversal stoma gone (May) '96, lalalalala ugh. nausea, weight loss malaise ick again pouch closing surgeries to repair X 10 OUCH! sitting an issue BIG issue first abcess big operation very complex (in my case) no recovery time before first fistula surgeries X 3 (Apr - May), New words: Crohn's, you have it 99% sure meds? no not right now '97, fistula fistula fistula hosp hosp near death hosp bowel obstruction...on like that never medicated '98 - '01, pregnant '01, new boy (Aug) '02. hosp meningitis brain damage (!) double pneumonia influenza near death ICU going home ever? (Mar) '03, same old story over and over '03 - '07, continued issues New words: NO Chrohn's mis-diagnosis OOPS YAY no Crohn's? Ok~now what? '08, fistula surgery (Jan) New [old] words: YES Crohn's New words: Remicade '09, fistula surgery (Jan) New words: Crohn's Colitis Remicade effective? New [old] words: Ileostomy '10.
WOW.
Well, I really didn't plan on any of that stream-of-consciousness purging, here, but it brings me (finally!) to my current dilemma (and it felt kinda good, so thanks for sticking with it!):
When I had my first surgery, waaay back in '96, it was before I had a chance to get my "tummy" back (ladies, you know what I'm talking about). So, when the doctor sliced into me (a~standard?~vertical cut just above my navel running to the pubic bone) and then sewed me back up, temporary ileostomy in place, it left me with a...tummy. A lumpy, stretch marked, stapled, scarred, flappy tummy. A tummy which no amount of exercise will eradicate. Mush. Now, it's not pretty, but it's been ok. Well, ok until now. NOW what I have is this: I am very bloated from the Crohn's, and this makes the tum more prominent, and therefore I'm having a difficult time sleeping, being comfortable in any way, wearing any of my clothing, etc... Add to this the fact that I need to have another ileostomy (which means the bag in all it's glory, in all liklihood as a permanent deal, this time), and I have got a...situation.
That situation is this: I need to have an abdominoplasty (tummy tuck) prior to the surgery for the ileostomy placement. I need this procedure, not for cosmetic reasons (as sexy as I'll be with surgically-enhanced abs of steel from which is hanging a BAG OF P**P), but rather so that my surgeon can have a solid platform upon which to build the thing. Why is this such a big deal? Very simply put, because, sadly, as I grow older *SIGH*, gravity will not be my friend. This saggy baggy tummy will droop, and create unhealthy and unwanted amounts of pressure on the stoma which I will have, and that, my friends, could lead to untold complications and further corrective/maintainance surgery. The Tuck must be done first; it cannot be done after the ileostomy is placed.
And while we're on the subject, may I please tell you, The Tuck is not for weenies. Seriously~I am not particularly wimpy, but I would rather chew colored glass than volunteer for this surgery for anything other than medically sound, necessary reasons; we'll get to that later, though.
For now: The Appointment with The Plastic Surgeon...A Brief(-ish) Highlights Playlist...
I was ushered into a beautiful office, a lovely waiting room, a comfortable exam room with a nice comfy chair, a fabulous fuzzy purple robe...and a connected studio where my glamour shots (NOT) would be shot from every imaginable angle. Suddenly, those...other exams...they don't seem quite so bad...
The doctor explains the surgery while looking at (and grabbing) my belly:
"Hmmm... This is...significant amount of flesh... (poke schmoosh jiggle squeeze)." Thanks for that, Doc.
"I think I need to make...BIG cut...will be big cut, big scar." WHAT??? You mean, a scar to take out my OTHER scars???
"Many staples. First (pat poke schmash stretch pinch lift), I core out (!!!) belly button to create new one for you...here, I think. My concern, after other previous surgery, is that the blood vessels, they have been cut. They stop...this old scar. This old scar...the new navel, we don't want the skin to die (!!!): that is possible complication for you."
Right...dead skin = complication; complications = bad. Got it.
"This request is first for me...(POKE!)" That does NOT make it better. "I need to think...how will this cut (yes, I know, the BIG one) heal for you? We need to be sure it heals...tight. It must be firm for Dr. ***** to cut, for his cuts to heal on inside. There will be many staples, it is a big cut (!!!). This surgery, it will be MAJOR hit for you...for your abdomen. I think...extra recovery for you. And the Remicade...? We must be sure (squeeze jab pinch pat jiggle). I think...we will cut...here...and STREEEETCH the skin and muscle down and we staple. You will lose, I think, most of this (indicates old blood-vessel-stopping-scar from previous surgery). We must be sure of healing. I think at least three days, maybe a week in hospital."
To sum up: Cut staple cut staple cut staple...CUT!!! I get it, I get it! Big cut, big scar, big pain, big recovery. BIG! Until the stoma is placed, I may or may not have a brief career as a recovering belly-button model, except that I may or may not leave the hospital with a belly-button.
And PS: I understood the concept of "stretch" without all the extra "E's!!!" That was just arbitrary scariness!
SO...
Insurance:
They say: "Cosmetic." They say: "Medically beneficial, but not medically necessary."
I say: "Cosmetic my..." I say: "Since when are beneficial and necessary exclusive of one another?"
They say: "We're insurance, and we don't have to, so there..."
I [want to] say: "Look at these lovely photos which my plastic surgeon took."
They [would say]: "Ugh. Who should we make the check out to?"
Doctors: They are conferring and coordinating, writing letters to my insurance company, and overall taking a lot of thier own very valuable time to argue my cause, fight my case, march my march!
Remicade: Abhors, obstructs, delays, hinders and just plain out doesn't-believe-in the healing process.
Recovery: Will take up to 6 months, but the doc may consider me "healed" at 3 months if I have been a good girl and none of my flesh has died (!!!). I cannot have the ileostomy placed until I am judged completely healed from The Tuck.
My quest: YOU. I need you. You must be out there somewhere; another person who has faced this particular set of circumstances... C'mon, universe! Help us to meet! I just want to know what it was like for you. Was it worth it? Are there questions I should ask? Pros? Cons? Regrets? I can't believe that I'm the only person who has ever had to have this done, and if you, or someone you know, or even someone you may meet someday has had any experience with one or both of these surgeries, please tell me!
Lastly, let me say that even though I speak lightly and poke fun a little, I am blessed with my very own Medical Dream Team, from start to finish, and I would be lost without them. And that is no STREEEETCH!
