Frustrations with Medical Staff and Treatment - Share Your Experiences

I just need to get this off my chest—feel free to do the same if you have ever had trouble with medical or pharmaceutical staff.

After my ileostomy surgery, I experienced more problems with nurses, doctors, and CNAs than I ever have before. Now, I've had a 'nurse' who didn't even know how to administer drugs into my IV and left my medicines on my table to take at my leisure, a doctor who made me feel guilty for wanting—and needing—pain meds, and even a doctor who refused to treat me after I said no to an unnecessary spinal tap....but I have never had more problems or frustrations with medical staff than I have post-op. I'm not very pleased with OHSU, which is supposedly very up to date and a great hospital.

Going back for surgery, they gave me an epidural—a procedure which takes 30 minutes, which they did in 10. They gave me something they said would make me "not care about anything" ... and it didn't work. So they gave me another dose. It still didn't work. So they went ahead and completed the epidural while I sat, NOT numbed, and STILL caring very much that they were chattering on about how I'd have a small tube delivering fluids to my spine. "You'll just feel some pressure" they said... NOPE NOPE NOPE. Now I'm little—it took 3 people to keep me on that table so they wouldn't paralyze me when I leapt off. Ouch.

Then, I woke up with my ileostomy surgery having gone very well. One small problem—my bag hadn't been put on properly and I was leaking all over myself. They stuck a towel under me for about 6 hours until the ostomy nurse was called in to fix it. And therein started my problems and future complications. They didn't use stoma powder on my now burned and raw skin. In fact, I wasn't even informed what it was! The ostomy nurse said it was fine to leave up to an 1/8 inch of skin around the stoma exposed when I put on the adapt ring—and I foolishly listened. Do you know what happens when you do that? The acidic crap you produce eats away at that little bit of exposed skin, as well as dissolve your stitches too quickly. When my stitches dissolved after 2 weeks of this abuse, I had a large, raw, bleeding gap between my stoma and my skin.

I called my doctor in a panic. Their reply? "It's too late now. Just keep it dry." But I was pretty upset...how on earth do you keep this bleeding gap right next to my stoma, which kept filling the gap with bile-ish fluid, DRY? I went to the ER at OHSU, where none of my nurses knew English very well, and the doctor dug into the hole with a q-tip and refused to give me anything to numb that pain. I will tell you now I have never screamed in pain so loud since I was a colicky infant. I was told later that the nursing staff down the hall could hear me at their station. And I still can't look at a q-tip without remembering that one had been dug into my very raw flesh.

My post-op hospital stay had many frustrations as well—language barriers with the non-English speaking staff, student doctors prescribing the wrong things, 9-hour waits for pain medicine, and so on. I can't tell how awful those 6 days were, but I can tell you that I'll be going to a different ER and hospital whenever given the chance now.

Anyways, it's taken a full week, a bag change every 48 hours, and a lot of stoma powder, but my stoma and skin are about 70% healed. After being shown how to use the powder, I have to say it's worked miracles! This stuff could probably shrink a giant hematoma or tumor if applied correctly! But even though I'm fine now, you have no idea how glad I am to have found this site—a full page on ostomy tips? I couldn't get tips like this from my ostomy nurse, let alone surgeon! I'm so happy and relieved to have found a community who can give me any sort of knowledgeable advice on how to care for a stoma or ostomy. It's been so hard to get any sort of information. Anytime I ask my doctor, they say to ask the nurse, but after so many fiascos on their part, I find it hard to trust their advice, not to mention, that nurse is a 45-minute drive away on a good day.

Hello Simiberry,Thank you for sharing this post. I haven't had such things happen to myself with the ostomy staff but I have in the general hosptial. I can quite understand the miriad of feeling that are generated by such experiences.Maybe you ought to forward this post to the Chief Executive of the hospital for his/her perusal. Suing is a modern way of getting such attention but it is usually costly and therefore not within the reach of most of us.Perhaps it's time that people who have these types of experiences found advocates that could take their horrific stories to the highest level within the hospital systems an forced them to put things right. Maybe then someone would address these issues properly so that future patients do not suffer in the same ways. Best wishesBill

Thanks for the advice, Bill. I'm afraid I did already contact patient advocates for that hospital. I got a more or less reply that went along the lines of, "You were on a lot of pain meds and might have been too sensitive to everything, but your complaint is still somewhat valid and will be noted." Suing never crossed my mind—like you said, it is way too costly, and from what I've seen, not worth the effort unless the settlement is for a hefty sum and I happen to have all the required 'proof' and then some. But I did make one small difference in that hospital! There was a CNA who did her job so badly, it was a bit gut-wrenching. She did a lot of things that just seemed wrong, and a lot of things that even went against protocol...things like not making the bed with a top sheet or blanket (that was a cold hour before I could get a blanket!), refusing to empty my urine bag for several hours even though it was full, not cleaning the site for injections, lying to me about protocol at the hospital to get out of trouble, etc. I usually avoid speaking with the charge nurses so as to preserve a good reputation among the nurses, which I've learned is a good idea since they gossip, but I did finally complain to the charge nurse as I was being discharged. I wasn't surprised to learn the charge nurse was already pretty pissed at her for doing her job so badly he had to clean up after her messes, and that she was already going to be given her notice the next week. All I can hope is she didn't harm anyone with her negligence... I know it sounds silly, the little things she did that bugged me, but it was so many little things all the time I constantly felt uneasy and unsafe. To me, if she couldn't do the smallest things right, what if she didn't do something more important, even vital, that resulted in an injury to a more helpless patient?

Hello Simi,What you describe sounds horrific but sadly not unusual. Sometimes the most effective complaints are those lodged after the person has left the establishment. This gives the (correct) impression that the complainant is doing so for and on behalf of other potential 'victims'.Keep up the good work. Best wishes Bill

Wow, what a bad hospital. It's your right to report all the nurses who are supposed to help you with your stoma and your care. You have a lot of rights that they don't want you to know about. Don't let them bully you, so someone else doesn't get the same treatment or worse. Trust me, my doctors and nurses know that when they hear my name, they can't bullshit me. I look up everything they tell me and then come back with questions. If they can't answer me, I tell them to find someone who can. Even before this surgery, he remembered me from 8 years before when I yelled at him for being too rough on my open wound. I could feel him digging into me and causing pain. Then I asked him how would he like it if I were to hit him with a baseball bat and tell him the pain is in his head, so quit being a wuss and deal with it. Back then, he was my other surgeon's puppet, so I went to him and wasn't very nice about it. After that, he changed his ways and listens and is more careful. Well, at least with me. He asks me not to get mad at him. I tell him, "Don't lie to me or use words I don't understand. I didn't go to school for big words to look smart when there are layman words he can use so I understand, and we will be good. You lie and I find out, I will return and everyone will hear me yell at you." He knows, and so do his nurses. They aren't gods to where we bow to them because we go in hoping they know what they are doing and have trust in them, then to be treated like someone lower than them. That doesn't work with me. Well, good luck on the rest of your life and take care.

I am sorry your stay and care was disgusting, Simi. I too had not had as bad a time as you, but the day after my stoma surgery, a night nurse came into my room, saw my bag, and called me a freak before she turned and walked out of the room. I have been told since that I was the first ostomy patient she had seen and that her English was limited. That is all well and good, but 6 months on, and I still see myself as a freak. That is down to her not-so-good English. Sometimes medical staff should just think before speaking. I was also put into the care of a young nurse who had never even heard of a stoma, and it was another patient who showed me where supplies were kept, etc. I have come to believe now that sites like this one are the places we can get advice and tips from the people who really know how it feels and what we are going through. Good luck on your journey and health. I wish you well in all that you do in your life.

I know the frustration of bad care in the hospital as I too had numerous leaks and at one of the rehab centers one nurse walked out and said I have more important people to care for! Also, I had something on my butt area which of course I could not see but they put barrier cream on it and a patch. I was diagnosed with C-diff, MRSA, UTI, and the CDC was involved and I was in isolation for a week--upshot none of this was going on and finally after having a complete ileostomy where the anus, rectum, and colon were removed my severe diarrhea was due to Crohn's and colitis which my mother had. I feel had anyone asked me about whether or not anyone in my family had digestive issues we could have eliminated a lot of hospital stays, rehabs, and loss of 30 pounds. It has taken nearly a year for me to feel really good and while I will not and cannot eat the way I used to (major leaks) being alive is a huge plus! I suggest when putting on a bag blow into it so it separates (this has helped enormously with leaks) and use stoma powder around the stoma so it doesn't get sore. I have ordered bags that have the strongest adhesive on the sides (Duraplast I think it is called) and this has helped a lot. I use the 2-piece bag which has been better than the one piece but the one piece for some reason or another doesn't last that long even with the Duraplast. If you can't see an ostomy nurse, get the phone number of an ostomy nurse and see if they can assist you that way. If you ever have the burning and itching, get something called Fluconazole 200 MG from your surgeon or primary doctor and this will clear up within about 7 days the awful burning and itching! Thankfully, now that my incision is nearly healed, I haven't had to use this in months but when I needed it, I had to have it as the stoma powder and ostomy barriers did not help. With an ileostomy, you do NOT have the freedom like with a colonoscopy as you go more frequently so I find myself generally emptying the bag at least every 2 hours unlike with a colostomy which was easier to deal with and I could eat most foods. Stay away from a lot of sweets, NO SODAS OR DRINKS WITH FIZZ and now wine may be a no-no. A lot of trial and error and eat small meals frequently which will help with the leaking. I hope this information, which is a lot, will help someone reading this and good luck.

Thank you so much, everybody, for sharing your stories and advice! Rumbletumble, I can't even imagine how horrible you felt after that nurse said something so awful. To me, there is no excuse for saying such a thing. In any language, calling someone that is extremely rude and hurtful. I'm sorry you had that happen. Sweetdreams, I'm familiar with duraplast--it's VERY strong. I, for one, found the 2-piece bags from Convatec to be too much of a hassle, and the square shape of the adhesive doesn't fit my body type--it would wrinkle and get wet subsequently, leading to me changing the whole thing out anyway. I also find it interesting to learn the difference in output of an ileostomy compared to a colostomy--I was never told this and was just assured I shouldn't have to empty my bag more than 4-5 times a day. So far, I have to empty it every 2 hours like you described, which for me is physically and mentally exhausting. The smell! The clean up! Trying not to splash poo water on myself...ick. It's tiring...but less painful than my UC was. So I view it as a win/lose situation......but what's this I hear about sweets??? They've been one of my sole comforts! I was never told they may increase output.

Ahem. Win/lose. Though I'm a bit miffed about having to avoid wine now.

I can relate to your story as well, rumbletumble. I came out of surgery with a urostomy wearing a bag and was horrified because I was hoping they would have been able to rebuild a bladder for me as I was told chances were high, so when I woke up from surgery the first thing I did was feel my waist and felt the bag and it killed me. I was sooo disappointed. Then a young nurse came in to change my bag and give me a lesson on how to do it, and I was looking down at my stoma for the first time in disgust thinking if I think it's gross, how am I ever going to date again and have someone accept me with this. So at this point, I've hit rock bottom mentally and the nurse says, "Oh, that's too bad you didn't get the Indiana Pouch" (not a bladder rebuild but an internal pouch inside your abdomen) done instead because it would have been WAAAY better than the bag and having a stoma. You should have had your surgery done by Dr. Black instead. What a shame!... I'm thinking, "WHAT?!?! Did my surgeon just screw up and give me a stoma and a bag to wear forever when I didn't have to?!?!?!" I was in shock by what she said because I was already feeling bad about it all, and to hear that just made things worse. Nurses have to be careful with what they say and do because to this day I still remember how devastated I was hearing her say that. It took everything in me to not break down in front of her. In the end, I feel the pouch was the best option for me as I hear there are many issues with infections with the Indiana Pouch. I've now come to accept my stoma/pouch and realize it has saved my life. I've gotten used to it and have adapted to it, but still haven't met someone who has an ostomy. Simiberry, I'm so sorry you had to deal with awful nurses and medical staff... I feel your pain!

Dear Uro2011, I had my colostomy put in April 2012. I thought, "How am I going to deal with this? I'm a nurse." I'm a 3x muscle cancer survivor. I feel my stoma (bag) is a part of me and my journey. Hope this helps a little. Thanks for your share and for looking at my profile. I have no pics on my profile because I don't know how to put them on yet. You also have a great smile, so keep on doing so!