Frankenstoma: A Gruesome Stoma Revision Experience - Need Advice!

Dear Ostofriends, I just had my revision of the stoma revision, the one I was whining about for the last couple of months, the "cherry in the bottom of a funnel" stoma that was turning out to be unpouchable no matter how hard I tried and you all tried to give me out-of-the-box ideas to jimmyrig a wafer that worked.

I'm kinda freaked out by the result.

Good news is that the surgeon did pull more colon out through the muscle, left the stoma in the same sweet place.

I've never seen a stoma this unsightly though. The topic title says "behold.." but I'm not going to post a picture, it's going to break my phone camera and maybe the entire internet if I post it. Gnarly, scabby, oozy, bumpy, red/black/pink/gray, just gruesome.

Ok, it's only been since yesterday (surgery day). More good things: the first revision pinched and pulled with every move, this one doesn't. And I don't have to dig into my belly to find it, it's right there and will be pouchable. Right now it's bleeding and oozing, the stoma and the skin around it (which got totally fried over the last months because I could never keep poop off it), and that hurts.

There was also a dramatic scene: yesterday, a few hours after surgery (I was awake and feeling quite good) when I looked down at my bag and see it's completely full... of blood! Seriously, a dangerously full load in ostomy bag terms, all fresh blood, and I didn't even feel it come out. My friend and I freaked out. Nurses were called, their jaws dropped, residents were paged and ran to the scene. I'm being a little over dramatic, no one ran but they did come quickly. Turns out the blood came from the stoma seam on the low side, the 6 o'clock position. Nervous resident gets something to empty the blood into and can't get the bag drain opening open; we do it together; blood and a huge clot comes out. Resident gets the silver nitrate sticks and starts cauterizing like mad, saying "we need another stitch" but that didn't happen because she uses a bajillion silver nitrate sticks. Bleeding finally stops, everyone is worn out, slap a new wafer on and clean up all the red. A CBC is ordered and I give more blood for that.

Explanations given is that the outside of the colon is very "fryable" (I think that's the word they used) tissue, easy bleed. But: if that much came out at once, clotted, how can they know there wasn't more building. No answer was given.

Time goes on, I fart a lot and a lot of angry post-bowel-prep juice comes out, mixing with the blood that's coming from the seams of the stoma and the broken down skin (not dramatic amounts, just to say it's what's the norm of now). I ask when the surgeon will do rounds because I have questions. "Tomorrow" Ok. Tomorrow came and a couple of his residents show up. No concrete answers on this. The surgeon will "probably" come later, he never comes early. He didn't. I asked the nurse, when does Dr. K come today?"Oh, he's a surgeon, he usually doesn't come." Great. "Are you ready to be discharged?" Yep, I need to get home to my computer to be able to google stuff. "Ok, we'll just wait for the WOCN to come and take a look at the stoma rim to get the 411 if it's good to go." Fine.

WOCN came, a dude, did not impress me with his ostomy knowledge at all. He put my baggage on weird, got powder and barriers ready but forgot to use them, kept on talking over me when I was sharing pertinent information about this sitch, wasn't helpful in new product selection, and when I asked him (for the 3rd time) how my stoma rim is after the blood explosion, he said that he couldn't tell me because a doctor needed to do that. I tell him that whether or not I get discharged depends on his professional opinion and he said that he thinks it's ok.

After this I'm really ready to get outa there. So I did. After Frankenstoma and I got home, I got an email saying I have new test results. The CBC does show that my counts are quite low. Tomorrow I will contact someone to see about getting another one.. to see if they stay low, are getting lower, or are bouncing back, that should give clues of whether or not the "fryable" tissue is still leaking or if an artery was nicked in there. The right thing for them to do is call me tomorrow to ask me to come in for the next CBC; me having to ask for it is a tiny slice of everything that's wrong with the American medical system. Right now I'm cranky about it, not hopeful that they'll reach out; if they do I will tell you and put my bitterness aside.

Yes, I'm sure once things start healing and settling down it will get better. I'll call it a Frankenberry then because I really don't think those weird rivets and bumps will go away (it's a stoma made half of the previous stoma and half of new colon). It is really, really ugly, y'all.

Bellilly. Gosh.. U got my thinking "break the camera, send a pic" but I understand how ugly it could be.. I mean it is still very fresh..

I am a bit more aggressive with nurses and doctors or residents. You have to be your advocate. And if you don't like what you're hearing, get another doctor or opinion..- someone is always on call don't let them tell you otherwise.. cause you can report their asses if they (your doctor) the staff don't get you one.

I do not understand why they kept some of the old stoma tissue.. he should have cut it off, pull the bowel through, then stitch it up pronto.. cutting corners I think.. I am glad though you have something above the skin line.. your wafers should not leak now. But what is leaking cannot be good. Sounds like you're anemic because of the blood loss and that is a lot of blood.. I never had that problem while in recovery..

They removed the entire colon and rectum and anus? Or left a stump? Just wanna be clear what you got now. You mentioned a fart.. which I guess was coming from the stoma..

You also said you had a jaw-dropping facial result from your medical staff?? That is not good either.

You are upset and angry and in need of answers.. I respect that.. Take that anger and go at your doctor. Get your answers. And do your own homework. Also write letters to the hospital CEO and head nurse.. and whoever else you can send a complaint to. Any doctor (or resident) that talks over you is a douche.

Keep us posted.. and hang in there.

Warrior

I also need to confess something.

I stole some silver nitrate sticks.

They left the container laying on a table with a bunch of other stuff that would be discarded and no one got them for over 24 hours. When I was packing up my stuff, I packed them up too. There have been oodles of times throughout the years where I have wanted to have some and didn't have access to a WOCN to get a rim bump zapped.. they are available on eBay with mixed reviews (old, exposed to light, "don't work") so I never felt right about getting any that way.

Don't worry, I'm not going to start madly cauterizing my own stoma, but once/if Frankenstoma heals up and has a weird granuloma, I'm gonna zap it.

I get it.. "It's alive" zap it.. "It's not alive now!" :)

Warrior, I really tried to be the advocate and they're going to hear more from me. I'm a very squeaky wheel and have been so at this hospital on more than one occasion, meaning I'm also walking that delicate line of trying not to get blacklisted ... this is a longer story that goes beyond the effed up stoma revision that brought me to blood exploding Frankenstoma. Five years ago I had a hip replacement there (limited in-network plan, only two providers and I chose the better one of the two) that resulted in way more pain and drama than before the hip replacement. I was very direct, persistent, and squeaky about that and got responses that absolutely blew my mind ("no, we cannot do this imaging you request because it would be unnecessary radiation" - "your issue comes from a preexisting condition" not! - etc..). I talked to lawyers who advised me to give up because this state's laws always favor the docs. I reported to the state's medical board.. nada. Second opinions: no one would touch it, probably because they were afraid of being pulled into litigation and legal drama. So now I limp, greatly decreased mobility, and know I can function in a lot of pain. And I have seen the underbelly of the medical machine; they just don't roll over and do the right thing when prompted.

Right now I'm feeling pretty good, a bit bedraggled, the ostomy site is ouchy, but I don't think I'm losing much blood internally or I would be feeling feebler than I am. In-the-moment advocacy didn't work but that's ok because I can play the long game.

Edit: Y'all, I might be going overboard right now. It could very well be that the blood load really was a one-time thing, that things start healing up and evening out, that this could be the best stoma ever. Geeze, this surgery just happened, I need to give it a minute before I decide whether or not to go on the warpath. Maybe it's leftover anesthesia talking. I don't want to be on the warpath. Y'all pray that all my ranting is just a fun story to share the glory of a properly-sited Frankenstoma.

Wow.. You get them Tigress. Kick their ass. Stinking insurance! Dictators. Let's put them in our shoes and see what they do..

Yep. Keep an eye on the bleeding.. Any lightheadedness, go to ER. Is there someone with you? Someone to help at home?

"Overboard"... honey, you're taking in water like the Titanic. No worries, life preservers thrown and all in good time, you'll be fine. You're "coming down," I think from the meds. It's all good to vent. Writing is good therapy. Just ask Bob. Although he does like a good picture now and then. Peace. Oh, and warriors know warpath!

Hi Bellily, sounds like you have really been through it. Don't worry about taking the silver nitrate sticks. I am sure you ended up paying for them. LOL. I hope you continue to mend quickly.

Hey Belily, you’ve really been through it! You just had this surgery yesterday and you’re home? How tough are you? Warrior is right; you need answers. I’ll add to that. You need more attention from appropriately skilled staff members. My daughters cat was treated more compassionately by the vet and the cat’s problem was nothing like yours. Get the blood work done and get yourself as well as you can quickly then kick some butt. Remember looks don’t have a lot to do with the quality of our lives and when your revised Frankenstoma starts functioning like it should you might want to rename it “Bellastoma” because of the beauty of her performance. A stoma by another name is still F’n stoma. If it works well it’s beautiful.
When you’re up to it, itemize your experiences at that sickhouse. Use bullets and just list brief statements and deliver as Warrior advised to the CEO, head nurse and threaten to deliver it to the major newspapers.
Please keep us posted as things get better and better.
Respectfully,
Mike

Hi Bellili...OMG you have been through the wringer....these bloody so-called professional docs, surgeons, etc. need to smarten the hell up...Hope you get some answers..Wishing you the best during your recovery..take care

Ange

Hello Bellily. 

Sorry to hear about your situation, but I am appreciative that you chose to share your story with us.  ou caught me at just the right time, as I was about to write a rhyme about the results of a medical enquiry and court case and your post prompted me to get on and do it.  The poem is in my blog under the title 'Accomplices' and I hope the message is self-explanatory.

I suppose that I can now put away all my experiments with moulds and skin hugging silicone (none of which were entirely satisfactory!!) until someone else has similar problems.

I do hope that you can now enjoy a much brighter future with your stoma.

Best wishes

Bill

Hi Belilly, I'm amazed the surgeon didn't come to see you and his handiwork. When I had my resection done 2 years ago, the surgeon came in twice a day. And when I needed a pouch change, he did it and not the nurse. He also kept muttering about nice work. I think he was giving himself a pat on the back.

Hi B,

I wrote you up a long reply, but figured it would be smarter to sit on it a bit and calm down. Your experiences pressed a lot of buttons in terms of things I've (and maybe many) have had to deal with involving the medical community, and I was pretty pissed off at modern medicine as I wrote that reply. So realizing what I wrote was out of pure anger and not intelligence, I just shut down my tablet and I'll re-write it and send you a proper reply later. I hope things are settling down and you're doing okay.

Regards,

Bob

Y'all are so nice and supportive. It's the perfect balm right now.

Had a pretty crappy night; I worry about the stoma opening being blocked/twisted/damaged. Had a little bit of output but nothing solid. Surrounding cut-on areas are also very sore and stingy. They told me to stop taking Tylenol, only oxy when I need it. Why? Didn't listen, taking Tylenol and it helps.

Warrior, you're right, I am just coming down from all the anesthesia; hello clarity, goodbye fluffy numbness.

Bill, maybe what you've been working on with silicone will broaden your own ostomy solution set. You must've learned interesting things, don't stop! Because the Trio Ostomy Company shouldn't have the only silicone options for folks. :)

Bob, this whole medical industrial complex pushes all my buttons too; I could rant for hours about it, my own stories, my friends/family member's stories, simply unbelievable stuff. It's full of "swamp" and corporate business ideals, streamlined and compartmentalized to the point that it overlooks the patient in front of them, one hand doesn't know what the other is doing within your own "care team." When I start talking about it I can't reign it in.. It takes a lot of effort to lay those thoughts aside and trust when having to tango with the system because my trust in it has been shattered before.

Right now I don't feel like following up on CBC or contacting any of them. I'm going to take a nap. My sister says that the 3rd day is always the worst, tomorrow could be a brave new day. All I know is that I don't want to look at this stoma; it really freaks me out and makes my stomach heave.

Hi B,

Yeah, I felt the same way about my stoma when I got home. I was like "How the hell am I gonna touch THAT?". No wonder nature buries our intestines deep in our body... they are god awful to look at. Think I need to go get a sausage sandwich now.

;0)

Bob

Hi again B.  You probably know that oxy can contribute to blockages.  It would be great if you didn't need it.

Respectfully,

Mike

Bob, my previous two stomas were nothing like this one. They were quite attractive compared to it. This one is mangled, has spots that look gray and dead, others bloody and tough, crevices, with a little ground beef texture thrown in. A "normal" new stoma should have a little smoothness to it, you know, inverting the inside of the colon like rolling up a sleeve and exposing the smooth pathway tissue. This one looks like the gnarly outside of the colon is being stuffed into the opening hole. I keep trying to identify the opening with my finger through the bag and feel a lot of resistance, like the actual hole is minuscule and unable to expand.

Just got a call that I am to meet a new "care team" next week: a general doc, a pharmacist, and a care manager. The hospital system has instigated this as a new system for anyone who has had surgery. That means new docs who probably won't read my chart carefully before I get there, more confusion to add to the mix, more repeating myself, and another checkbox the hospital can check off to showcase how patient-centered they are.

Lordie, I sure am bitter. Thank you for reading, dear reader/s. I truly am open to my present bitterness being transient, just surgery after-effects, with me truly loving and appreciating the outcome as it settles in. In the meantime, I am thankful for you all and having this venue to vent.

I know, Mike. That's why I'm taking Tylenol.

Oxy and all opiates slow down the GI tract, so stool gets hard, stuck, difficult to pass because the bowel is not active enough to move it on out. Not having that issue, stuff's coming out, syrupy phlegmy stuff, and my bowel is certainly active. I'm more concerned about blockage caused by the hole not being big enough, which it might end up being after the swelling calms down.

Interesting thing I recently learned: Imodium is an opiate. Apparently, there are folks out there taking 40+ Imodiums at a time to get high. Crazy, huh?

So B, if anyone said they were getting high on immodium, would it be accurate to suggest they're full of crap?

Mike

Hehehe.. That sounds accurate. Maybe a little misleading because they would be high and full of crap.

Hi B,

A new care team, eh? I long ago got tired of having to repeat my history, current meds and supplements, etc, to every doc, nurse or intern I dealt with.......so I wrote up my history and meds list and give that to everyone who gets involved with my medical care. I keep the file on my computer and update it after every doctor's visit, so it's always current. This way every doc I see has a copy of my info in my file and I don't have to spend the first twenty minutes of each appointment repeating all that crap over and over. I also keep a copy of it in my wallet just in case I end up in the ER someday. Sounds like things are settling down a bit for you......so glad to hear that. Sounds like between you and me we need to start an "Ugliest Stoma Club" on here and have folks post pics to see if they can top our monsters.

Regards,

Bob

Warrior - I totally agree with you! When I had my initial surgery and my reversal six months later, my guardian angel surgeon came in twice every day to check on me!

I'm sorry you have to go through all of this! After my surgery, I took Tylenol and it worked quite well. Hope everything straightens out for you!

Hey Bob, I do the exact same things with the records of my meds.  At the bottom I also list the medical attention I received in the last year or so.  You're so right, it saves lots of time and aggravation.  

Mike

Hey Bob, guess I am lucky. My doctors and hospital are all in the same system. We can go online and after every visit, the information and test results are posted from every visit. It is called MyChart, and all information is posted after each visit. It includes what problems you were treated for, what medicines you are on, and all your past information. Each visit is recorded, and all past visits' information is kept. If you forget something like what year you had a certain procedure done, you can look it up. Also, I get a copy of all information about a visit at the doctor's office when I leave.

Hi, friends!

What a great idea keeping a file of all ostomy-related visits to hospitals and doctor's visits. I'm going to start a file. It's such a pain, like you say, repeating yourself over and over again about your condition... Cheers!

Ange