Nightmare Colonoscopy - Stoma Cut and No Doctor Communication

I just had my first "colonoscopy" since my ileostomy surgery in September, and I'm guessing the doctor who did it didn't know what he was doing. First of all, he scheduled me for a colonoscopy and gave me a prescription for a gallon of "golytely", that was my first clue. I knew if I drank all of that I would be dehydrated by the end of the first glass. Then when I got to the hospital and the nurse asked me if I was going "clear liquid" or done going, and I said that I needed to empty my bag because the little bit of the prep that I did drink was still making my bag fill up with "water". When they asked me how much of my large intestines I still had and I told them none, they put me on hold and said they had to get ahold of the doctor because they had to get the proper procedure approved through my insurance. So I learned that it was called an interoscopy, and waited 4 hours for the approval.

Now I have had hundreds of "colonoscopies" before my surgery, and I do know how those go, but this doctor did not come and talk to me before, during, or after the procedure. So I assumed the nurses knew how to handle this, and left my flange on during the procedure, and said that they would put a towel over me and let me put my bag back on when I woke up.

Well, when I woke up my stoma was hurting like nothing I'd ever felt, and my first thought was I don't remember ever having pain in my rectum after a colonoscopy, then my bag filled up with blood, I figured it was just from the biopsies, but again, I never had any bleeding before.

When I got home it was about a week before it was time to change everything, but when I did and had the opportunity to examine my stoma with the bag and flange off, to my horror my stoma had been cut pretty deep, and all the way across. I'm guessing the stupid doctor was so rough when he did the exam that the plastic part of the flange cut through my stoma, and that was 4 months ago, and it has not healed yet, mainly because I have to wear the flange 24/7 and it sits right on the open cut.

Then when I went in for the follow-up I tried to tell him about it, but he didn't even ask to see it. I even put on a clean bag just before he came in the exam room so that he could see it. Then as I was leaving I saw a copy of the biopsy results in my file and asked for a copy, but he never went over any of it with me.

About a month later I got a call from my primary care doctor saying she received something from my GI doctor and needed to see me. I had mild ulcerative colitis, hemorrhagic gastritis (I was on life support for a week after an emergency surgery 3 days after my ostomy surgery when my small intestine tore open) so that explains that. I also have intestinal metaplasia, H. Pylori, erosive, chronic active proctitis hemorrhage, and erosive colitis.

Again, this idiot doctor NEVER talked to me before, during, or after my procedure. My PCP just put me on antibiotics (that's a whole other topic, I've had infections from the tear in my intestines for the past year, and been on antibiotics for the last year, and it has killed my immune system, so I am catching any and everything).

I'm just so frustrated and not sure what to do. Obviously, I need a new GI doctor. But at the moment I am without insurance, and this is what I got stuck with. But should I be worried about my stoma being practically cut in half and not healing? It's not like I can slap a bandage on it till it heals?!?

What a nightmare!! I had to look at your profile to see what country you lived in (although the insurance issue was a tip off). Ordering Golitely was a tip off...I haven't taken that s ^% since my first colonoscopy in 2001. I am not sure what you can do but I would try and find a good WOCN nurse to help with the healing issues. Even if they charge you out of pocket it is cheaper and more helpful than a skank doctor. And, some of the WOCN nurses run clinics for ostomy patients which seems reasonable.

Best of luck!

Lynn

DAMN, and I thought I had been through the mill with less than satisfactory doctors, and what I really mean here is if I said what I really think most or all of this post would be deleted, but as I read on what kept coming to mind was something I had seen in a war film and medicts out in the field and known for there ability to think quickly had to do a quick patch up job to keep the man alive and what they did was use crazy glue to hold the wounds together until they could get this man shipped out of country. So after reading about your dreadful circumstances I was thinking if that was me and was getting that kind of treatment I'm sure I would do something on my own just out of fear of going near any more doctors, hello crazy Glue and if I remember correctly there is no feeling in the stoma. But for christ's sake don't listen to me but surely you could find somebody smart enough to sew that cut up on yiour stoma and get the hell off those antibiotics so your imune system can get back to normal, and I sincerely hope you can get some better information from others on here. I wish you the best of luck and hope this nightmare comes to an end soon, Ed

Hi Ed,

Sorry, it has taken me so long to reply. I haven't had access to the internet for a while. But thank you for your reply. It has been over 5 months since this horrible colonoscopy, and this cut across my stoma is getting worse and worse. The plastic part of the flange is cutting it deeper and deeper, and this last week or so, it has become so painful. My family said I should go to the ER at the hospital where I had the surgery done. I can't go back to the doctors who did my surgery because they don't take the insurance that I have, but the hospital where I had the surgery does take it.

I just uploaded pictures of the cut. It was REALLY hard to get a good picture of the bottom of my stoma, but I finally got a good one where you can see how bad it is.

I've tried everything. I cut the hole in the flange bigger so that it's not so tight and won't rub into the cut. I have leaking problems that ruin my wafers, and I don't have extra to spare. Literally, I have 3 left and I don't know when I am going to get more. When I cut it just right, every time my stoma contracts, it pushes into the plastic, causing extreme pain and a lot of bleeding. I've tried putting extra stomahesive paste, but it just gets all gooey and oozes out. Hopefully, I can make it to the ER this week. It's obviously not going to heal on its own. I'm just scared of what it would take to fix it. I don't know if it can be stitched up, or if they will have to pull it through and cut it off and make a new one. I can't find any answers anywhere on the internet.

I need to go to the ER anyways. I had my surgery in Dec 2011, and 2 days after my surgery, my small intestine ripped open, which caused a lot of infections. It's been over a year, and I still have all the infections. I've been stuck in bed for over a year now because my body is so worn out. I've had up to 9 different infections at one time, running fevers continuously for over a year and a half, and not to mention the pain from kidney infections, stones, the huge cut on my stoma, and just flat out having no energy.

I'm literally sick and tired of being sick and tired. I really thought this surgery was going to make me better, but I sure don't feel any better.

Sorry for venting and complaining. I'm really trying to learn to "just live with it," but it's been a frustrating experience.

Nora

Nora, what a nightmare you have described! If there's anything we can take away from your experience, let's remember that there are as many quacks in the medical world as there are competent doctors. Never, never, never trust your life to anyone you haven't thoroughly vetted. Always go for the best doctor available, even if you have to travel a long distance. The medical world is going to be staffed with assembly line physicians thanks to changes in federal law. From now on, let the patient beware and shop around. Remember, the medical student who graduates at the very bottom of his/her class is still called Doctor.
PB

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi Nora ~ ConvaTec has a no-cut moldable flange. It is soft and flexible — you roll back the edge of the opening like a turtleneck sweater, and after you apply the flange, the part you rolled back begins to unroll until it contacts the stoma so no skin is exposed around the stoma.

Nora, like all the others, my heart breaks for you and I can't begin to express my anger with the way you've been treated.  Please follow PB's advice.   Then, the next time you visit a physician, ER, or other health care person, let them know you're involved with this forum.  Tell them we expect you to report all your medical experiences with us.  Maybe, knowing a few thousand of us might be reading about your treatment, your care might improve.  I pray it does.

Sincerely,

Mike

Hi Nora, I just looked at the pictures of that horrible cut on your stoma and the words that come to mind of the doctor that did this would be deleted, that is out and out negligence, and now we'd like to hear if you've had any hope of a solution. And one more thing, on this forum you never have to say I'm sorry for venting or complaining, that's what we're here for.
Just a thought, do you use any kind of rings on your stoma? what I'm thinking is would two rings come up far enough to cover the cut, if so it might give you some relief until you see a doctor, also I remember my surgeon telling me there were no nerves in the stoma so we hope you can get somebody competent to repair that cut. So please keep us informed and we wish you the best of luck, Ed

PS: Nora, after rereading your first post and it finally sunk in, when this doctor applied the scope you still had your flange on so as the scope was inserted it expanded your stoma and of course the only place it could stretch to was the edge of your wafer. And enough force to cut into your stoma. My sympathy are with you. And for the ass who did this to you, well, we'd best leave it there or this post will surely be deleted.

I just got an appointment with the surgeon!!!! I went to the ER on April 1st (it took that long to get the referral and appointment). I go on Monday. I got the referral because now my stoma is coming apart from my stomach. The ER doctor thought it was a fistula? I don't even know what that is, but not only is my stoma cut in half just below the cut, it looks like a new cut. I can see "the white meat" as I call it. I'll upload a pic in a minute. It looks worse this week than it ever has. Some weeks it was almost healed up, then days later it looks like it's about to fall off!

But the ER doctor only gave me some cream to put on the cut (I looked it up and it is for diaper rash!). I couldn't use it because it burned like hell when I put it on the open cut, or when it would seep under my skin where it's coming up from my stomach)

Thank God after 8 months of this, I only have 6 days left to see a specialist. My primary care physician was trying to get me back in to see the surgeon that did my ostomy surgery, but they keep messing it up, and I didn't want to go to another "unknown" doctor, but I can't wait any longer.

But to make things worse, my stepfather just passed away last month, and my sister and her girls have been staying with us (I have been living with my mom and stepdad since just before my ostomy surgery) and my sister just went to the doctor for a cyst on her spine, and they are sending her to a surgeon to have it removed. I feel bad for my mom; she's about to have both of us going in for surgery around the same time.

Hi again Nora it appears you're getting closer to a solution for your problems and I can empathize for you seem to be going down a path I had the misfortune of enduring and you're being tested to the max and after this is all straightened out you will be a stronger person for it and hopefully any problems you encounter down the road you will be able to look back and say if I managed to put
up with all this I can handle anything. It has taken me many years to control the anger I've had for all the screw-ups that has gotten me here, and believe me here is not a place I ever wanted to be.
I wish you the best of luck and hope you will let us know how everything works out. Ed

To all you guys,
I am completely baffled by your comments. I had a colposcopy about three months prior to my colostomy and the results were fine, but I had a mishap in the E.R. where they pierced my colon while giving me Lovenox. But after I had the surgery, the colposcopy doctor called me and said it was time to schedule another test. When I told him that I no longer had a colon, he said "Oh well, we'll just cancel your appointment. I thought that once they took your colon, there was no further need for a colposcopy exam? I am not arguing, just had no idea.

Hey there old buddy I must have just missed you as I checked the time of your post and I was probably walking around trying to make these old bones come to life.
As to this procedure that Nora had where they put the scope into her stoma without removing the flange and of course the scope would cause the stoma to expand, and it did right into the edge of the flange causing the stoma to get a real nasty cut and of course you can imagine how that cut is going to heal in that environment. Man oh man if I ever have to have a scope done like that I'll make damn sure I take the flange off myself. This must be a nightmare to Nora and I sincerely hope it gets taken care of and real soon at that. Hang in there CD, when I get my computer back I'll email you, Ed

It may help to know that I have an ileostomy, not a colostomy. I have no colon, the procedure they did was through my stoma, and they left the wafer on during the "colonoscopy" and the doctor was really rough with the camera I'm guessing and cut my stoma almost in half. I posted pictures on my profile. But because the cut is on my stoma, and the corrosiveness of the stool that keeps the cut infected, and now my stoma is coming apart from my stomach, and the stool is getting under my skin when it leaks through the bag (I have H. Pylori infection in my stomach causing me to have "diarrhea" (which is nothing but water in my bag" so I have a lot of leaks and blowouts. So because of where the cut is, and because of the infection, and the risk of serious infection and sepsis, the doctors can't do anything about it. Not yet anyway.

Hi Ed,

I saw the surgeon today, and just as you stated, because of where the cut is, and because of it "soaking in watery stool" 24/7, it won't heal, and the infection won't go away. The Dr. gave me a cream to put on the cut and around the base of my stoma, hopefully this will help the stool from getting under my skin, and he gave me 3 different meds including Metamucil (just powder fiber) to get the "diarrhea" under control since Imodium doesn't do a thing, even when I take 3-4 at a time, every 3 hours or so. Mostly at night I'll take up to 12 Imodium and have to empty my bag every 1-2 hours to avoid leaking.

The surgeon wants to see me back in 20 days to see if relieving the diarrhea will clear up the infection and the skin around my stoma, then will discuss surgery to close the gash in my stoma, I guess he uses a laser to "weld" it back together if you will. He is also getting me a referral to a reputable GI Dr to get me on preventative meds for the Crohn's, and to take care of all the other problems, like the H. Pylori, gastritis, infectious colitis, proctitis, etc, then once all of my other infections are cleared up, like the kidney infection I've had for 15 months, yeast infections, thrush, chronic ear and throat infections, eye infections, I can't think of what else, I'm basically head to toe infections that NEVER go away. I'm waiting for a referral to an infectious disease Dr for all this. I've been bedridden with all these infections and fevers since my colectomy surgery in Dec 2011 (Well since I got out of the hospital in Feb 2012)

He said I will need to have my rectum removed since it is "diseased" as he put it. He said that with having Crohn's and with having proctitis for 15 months there's probably no chance I'll get to have a reversal surgery with a J pouch, or I'd end up with no intestines left and it's not worth the risk. But I have to get better from all this other crap before I can think about another surgery.

I'm gonna upload more pics while I'm online tonight, old pics of what I used to look like before Crohn's took my life and ravished my body, and pics of after surgery, how I've steadily gained 5 pounds a month since my surgery (I weigh about 80 pounds more than I did before surgery!)

Thanks Ed for your support through this nightmare. I really appreciate it. Next month I'm going to pay for a membership so I can email. I'm in the process of getting my SSI disability back, and living with my mom who takes care of me, God bless her, she's a saint.

Talk to you soon,
Nora

Hope you caused hell over it doctor should be struck off for that, heavy-handed is an understatement for doing that to you. I have them every 6 months through my stoma, just cut a cross in the bag and go in. Never had a problem.

Hi again Nora, I just checked your new pictures and it makes it all the worse what you are going through and all I can do is curse the doctor who did this and meanwhile the wait to see the surgeon is going to take its toll on you, as if you needed more, I will be anxiously waiting to finally see that stoma put back together, so hang in there Nora, we'll be thinking of you, Ed