Hey all, I hope someone can help me out or at least give me some support. This issue is extremely depressing for me. Sorry it's long but I think details are relevant to the problem.
I dealt with misdiagnosed chronic appendicitis from April 2012-October 2012. Due to this, appendix ruptures without me realizing it 2 weeks before I go to the ER. The infection is too bad to operate so after a week in the hospital on IV meds, I have to wait until Jan 4 for surgery. The same surgeon has taken care of me from this initial hospital stay, to now.
Appendectomy takes 3hrs due to the large amount of scar tissue. Very messy and crazy. He wasn't able to do the surgery laprascopically due to the complexity so after I had 3 incisions, I needed 2 more, one for a JP and the other was an open appendectomy scar.
Recovery is extremely slow. Was in the hospital for a week after and then on bed rest at home. I was in so much agony that I returned to the ER because I was given no pain meds. Ended up getting a very, very small prescription for Percoset 325/5. Ended up having to up my own dose because one percoset was useless and 2 percosets might of well have been baby aspirin.
I developed paralyzing nerve pain around the open wound. Then on the 19, the open scar developed a blister type mark. I popped it and it sounded like a deflated balloon. All of a sudden, drainage CASCADES out. It looked like a water fountain coming from my abdomen with putrid smelling red-thick drainage, same stuff that was in the JP. Pain becomes excruciating and I develop a 102.2 degree fever that breaks quick after 1000mg of Tylenol, and it's extremely messy with the horrible drainage. We call the surgeons emergency number as the office is closed weekends. Surgeon is not in but his associate (surgeon3) tells me not a big deal, wait until my appointment Wednesday.
I end up in the hospital on the 22 because the night before, I was in too much pain to even sit up. I drink the liquid, get a CT. As soon as I get back, fecal matter starts pouring from the wound. I flip out and my surgeon comes by, cleans me up and puts a bag on a sticker wafer on the wound so it drains in there.
Turns out, I have a .5-1cm fistula in the colon, resulting from scar tissue. I'm admitted into the hospital for round the clock antibiotics and I go NPO and put on a TPN. I'm told I will be there 2 weeks. I'm 25 and in graduate school with a job and clinicals so this is all depressing, I took the semester off and tell my boss it's going to be a while. I'm on a saline drip and given pain meds. Percoset is still useless, as is morphine so I'm given .5ml Dilaudid which is so far the only thing to even come close to taking the edge off the pain. Daily blood tests indicate nothing and my temperature never goes above 99.2.
One week in the drainage is slowing down and fecal matter hasn't come out in a few days, the surgeon says he wants to add a wound vac to the healing. Nurses think he's crazy, the outside wound was about 1cm long and it's not draining bad. The next day, drainage slows to a minimum and surgeon decides not to vac it. At night, drainage comes back and its the color of the TPN and sort of thick like diarrhea. I freak and the nurse helps me with another bag. The surgeon sees it the next day and decides on the vac, nurses all still think hes crazy.
I get the wound vac the following night (Jan 31) and I'm told it will only be on 2-3 days. Seeing as the wound was so small, he rips it open in another area with a pair of sharp scissors, no numbing or pain killers. I'm crying because this is the worst pain ever felt, and I had my ear drum burst a few years back and I got kicked in the face by a horse. He packs the gauze in the wound, I'm still sobbing. It's on a few days and it's draining, ends up with 30mL of blood from him ripping the wound, normal drainage and some fecal matter. Yay!
One day later, it stops draining. Surgeon changes the packing which is horribly painful. Again, no numbing or pain meds. He tells me he is going away on the following Monday on vacation for 2 weeks. He tells me his associate (surgeon 2) will fill in for him. Not pleased but whatever. He also tells me that since I'm not draining, I'll be started on foods this week. I get broth for lunch and dinner and neither cause pain or extra drainage. He tells me I can start on soft foods the following week and work my way up the next 2 weeks to real food, and that I will be discharged Monday or Tuesday. Surgeon 2 comes in to say hi for a moment and that he will be back the next few days to get familiar with my case.
I get broth the morning and noon of Sunday but none for dinner. I inquire and am told that the surgeon put an NPO back in. No one knows why. Surgeon comes in, gives no answer for the NPO when asked. There is no new drainage, no pain and I tell him I'm feeling good. I am now told that I will only be allowed clear liquids while he's away and a very, very tiny amount for the next 2-3 weeks. He also wants the wound vac on for the next 4 weeks. I'm not happy but whatever. The nurses don't agree with any of this, they have seen patients in worse condition being able to eat sooner and be off the vac/TPN sooner. Never saw surgeon2.
The day he is leaving, he comes in to see me. Again, no drainage, no pain, no problems. Suddenly and for no reason, I'm complete NPO with the except of ice chips for the next 2-3 weeks. I'm not happy at this at all and my nurse team is now questioning the dr;'s sanity. I'm supposed to see surgeon2 who walks by the hospital room door several times but never stops in or anything. I'm supposed to leave that day (it's monday) but they JUST faxed in the papers to get my TPN/home wound vac sent to my house. The surgeon did everything too late so I'm in the hospital until Tuesday. Never saw surgeon2.
Tuesday rolls around and the wound vac is denied from KCI and I'm not allowed to leave the hospital without it, despite everyone agreeing how useless it is to me. My surgeon is now out of the country. Nurse manager gets involved, gets the patient advocate involved, gets the chief surgeon involved because this is insane. They try to get surgeon2 to come up but he's "too busy". My mom throws a fit because of the constant problems, incompetence and contradictory info we are being told. Chief surgeon has surgeon3 come in, who is another associate of the firm. He's the one who told me not to go to the hospital. I'm warned by the staff that he tends to not listen to patients concerns and he's very arrogant. He was BEYOND arrogant. He said if we couldn't get the wound vac, they would just send me home with a bag and doesn't listen to concerns. He spends all of 30 seconds in the room and goes away. More hassle happens, patient advocate is angry. Case manager tells me I'm not going home today. They call surgeon3 who says he will be back after his meeting, which never happens. All along, nothing new is in the wound vac. One of the higher ranking nurses hints to my mom to sneak me up soup because this is ridiculous. My mom brings me a cream broth because there is nothing else available and if the cream soup would bother me, it's best it does here in the hospital.
The next day, still no drainage, pain or hardness under the incision. I am normal. Surgeon3 comes back for 30 seconds to tell me that despite being better, i still need the wound vac because surgeon1 is out of the country and they are going to follow his orders to a T. Pretty much can't be bothered to take responsibility for me. He tells my mom I might need to stay an extra useless day (it's now Wednesday and I was supposed to be out on Monday really) due to continued incompetence with insurance, wound vac and the staff not knowing what to do with me, I've been discharged since Monday. My mom tells him there is no chance I'm staying and magically, the wound vac is delivered and I am discharged. The nurses remove the remaining wound vac dressing (and after Dilaudid, it's STILL agony) and put a bag on it.
This was yesterday. Nurse came, set up the TPN, showed me how to do it a bit (it's really confusing), my antibiotic. Today, the bag is as dry as it was when they put it on. The wound care nurse comes today to put new gauze on, which will probably hurt terrible. I'm currently in no pain. I'm pretty aggravated. The only reason I'm stuck NPO for 2-3 weeks is because surgeon1 is not here. Myself, and all of the nurses on my case feel this wound vac is useless.
I'm wondering if I should be getting a second opinion. My surgeons firm doesn't exactly have a good reputation in the hospital, which also has a bad reputation.
I'm just so aggravated and depressed over all of this. This should not have gotten to this point like this and I'm feeling like it won't get better and I'm going to be stuck on needless precautions for way too long.
What would you do, everyone? I really need advice and/or support because I'm losing my mind.