complications with small intestine resection

Hi- I wanted to share my recent experience with my surgery to remove 8 inches of small intestine due to complications from Cohn’s disease.  Here is a timeline of the events:

 

- Monday Dec. 22nd-  Check up with my Doctor to report that my recent Crohns flare up has not gotten any better despite 2 months of treatment and two 4 days stays in the hospital.  The doctor advised me to get this isolated area (8 inches) removed surgically and that would offer me the best chance for remission.  He stated it would be a 5-7 stay in the hospital and 4-6 week recovery at home.  He called the local hospital and set up a room for me so I could be admitted for surgery

- Tuesday Dec. 23rd- Spent the day anticipating the surgery; still not fully understanding the level of pain I was about to endure.  I meet with my Doctor and the surgeon; they both reassure the pain would be managed great and that I would immediately be put on a PCA of dilauded to treat the post opp pain.  At about 4:00 PM I head down to surgery; moments before the surgery the doctor that knocks me out comes into the room and states that he is doing an epidural to treat the post opp pain, so he totally changed the plans of the other doctors.  I was still ignorant and did not know what I was getting myself into, so I went under for the surgery.  Fast forward a couple hours as I come back to consciousness in the worst state of pain that I have ever experienced.  I was returned to my hospital room in tears of pain; the nurses and round doctors would not do anything to treat the pain because they said it had to be changed by the anastysiologist.  Finally after 3 hours of never ending pain a doctor showed up and hooked me up to a PCA as well as give me a high dosage of delauded to finally give me some relief, but still understandably in excessive pain.  I never fall asleep this night due to the pain though it was now under control

- Wednesday Dec. 24th- Start the recovery process of course with appropriate pain management and light walking and breathing exercise.

-  Thursday Dec.25th-  They take me off the PCA, and treat my pain with Delauded through my IV ever 3 hours and Vicodin every 4 hours.  The pain was still there but each day seemed to be getting better.

-  Friday Dec. 26th-  On this day with the encouragement of my doctor I would attempt to the delauded shots so I could transition to only be on oral pain medication, so I could prepare to go home.  I skip a couple of the shots this day, but did take the delauded shot at about 7:00 PM.

-  Saturday 27th-  The doctor announces she is sending me home to finish my recovery from home.  At this point I had only been post surgery for 3 1/2 days, so I was wondering what happened to the 5-7 days that is recommended.  The doctor set for me to release at 11:00 AM less than 11 hours since being on delauded; and she sent me home with the direction to take one 7.5 Vicodin every 6 hours as needed for pain.  I expressed my concern to her that I was already prescribed a higher dosage of Vicodin (two 7.5 Vicodin every 4 hours as need for pain) she disregarded this and just stated that I appeared to handling the pain so far and to follow up with the surgeon in 10 days.  I came home Saturday morning and still was in controllable pain, came home relaxed took my prescribed sleeping pill and went to bed.

-  Sunday 28th- THE DAY FROM HELL!!!  I woke on this day wondering if I was dying; the pain radiated my body.  It was so intense I could not rollover; I could not get out of bed....nothing but scream in agony.  We paged the on-call doctor; and I explained the pain I was in and the direction I had been provided by the other doctor.  The on-call doctor was dumb founded, she said of course you are in pain and that I should have never been sent home from the hospital, she advised to go the emergency room immediately.  We had to call 911 because I physically could not get myself to the car.  I get to the hospital and they run a few tests to determine I am healing ok, and then put me in my room.  The bottom line is that the pain level was so great that they had to put me on treatments of 3 milligrams of delauded every 3 hours, two 10 mg Percoset every 4 hours and a Fentynal Patch, and this was just to get the pain down to tolerable. 

-  Monday 29th- Continue with the pain treatment; and try taking walks around the floor and to eat a soft diet to keep the bowels moving.

-  Tuesday 30th-  Taper off the delauded treatment, but stay on the Fentynal Patch and Percoset; they increased my dosage on both the patch and the pills.

-  Wednesday 31st-  After 24 hours being off delauded and the pain being managed I was released while continuing the Fentynal patch and the 2 percoset every 4 hours.

-  Thursday 1st- Seem to be on my way to recovery; I'm still having pain but it is tolerable and my appetite is back.  Still have not gotten more the 2 hours sleep any night since the surgery

-  Friday 2nd- about the same as Thursday, but a couple more extra hours of sleep which was nice.

-  Saturday 3rd-  Step back a little pain is not any better today; and I have noticed a hard bump on my right side that is about 3-5 inches long,  I'm not sure what this may be but it is painful when I stand or take deep breaths.  I have a follow up appointment this Monday to hopefully find out.  I’m concerned it might be surgical hernia.

 

I would love people’s feedback about my situation.  I also experienced terrible response time from my nurses through out the stay in the hospital.  There where more than 10 occasions when I was due for pain medication and they would disregard the call light for longer than an hour before the finally got to me.  They give you a letter of commitment from the hospital when you check in that they will respond immediately, but instead it was the extreme opposite.  I would have expected 10-20 min response, but over an hour for a suffering patient! That seems crazy.

 

Sorry I rambled for so long, but this whole process has been so overwhelming for me; and I just want to know if my experiences have been shared by anyone else; or if anyone else has any other suggestions for a quicker recovery.

 

Thanks

Rubin

 

Hello Rubin:

I'm sorry to hear about your miserable experience.

Pain is such a subjective experience -- no two people experience pain in the same way. It sounds as though you were heard and appropriate response was taken when you called back to your hospital. You must be so grateful that your concerns were taken seriously and that you got relief from your pain.

It is distressing that you were sent home so early from hospital, but early discharges are not abnormal. Most surgeons overstate the length of stay so that the patient isn't distressed if their stay is longer than expected. There are chronic bed shortages and a lot of pressure to reduce costs. Add to that the very real risk of acquiring a hospital-based infection and you've gone a long way towards explaining the push for early discharge. That doesn't excuse it, however.

In my experience -- and after seven major surgeries, three natural childbirths and 30 years living with stricturing crohn's I have a lot -- my health professionals response to my pain is determined in part by how I present it. My natural instinct is to intellectualize the experience of pain, not to describe it in emotional terms. My tendency has been to minimize -- I am a stoic -- and to endure. The result has been some episodes of incredible -- and unnecessary -- pain.

I remember waking up in the night 10 hours after a major surgery in pain. When the nurse responded to my buzzer, I told her I was "uncomfortable". Instead of giving me a shot, she patted my hand and asked if I wanted to readjust my pillows. When the resident arrived next morning to remove my packing, it was evident that I was in an incredible amount of pain and he could not continue. He simply couldn't believe me when I told him it had been at bedtime, 9 p.m. the night before. A shot was ordered and I felt the blissful relief from grinding pain -- but up to that point I had just accepted it. That was 20 years ago and it took many more episodes for me to finally understand that I needed to change.

My last experiences after surgery have made me realize that I am part of the problem, and now I have a completely different way of approaching my physicians regarding pain. When I say I'm part of the problem, I don't mean that what has happened to me over the years comes under the umbrella of "good medical care". I happen to think that health professionals should understand that not everyone responds to pain the same way. I think pain is incredibly under-treated in the acute care setting. But I finally realized if I was going to get appropriate care I needed to change how I approach it.

That's my experience. I wonder how it stacks up with yours?

It sounds like you are on the road to recovery now. I'm glad you used the forum as an opportunity to vent. the worst part about the experience you've just gone through is the sense of impotence you feel. They have all the power and it is awful.

I hope you can let go of your frustration and concentrate on recovery. There will be time, six weeks down the road to deal with your concerns about care. For now, the most important thing is for you to get better.

Thanks for both of the quick responses.  First and foremost I want to congratulate Gail your pain free recovery you were truly blessed; I would not wish what I went through on my worst enemy.

There has not been any redness or pink tinge around the incision; that portion is healing great.  I was considering going to the ER to have the hard bump checked out as well, but both my sisters who are nurses thought that waiting until I see my doctor tomorrow would be ok. 

My surgery was also open, so I have 15 staples going down the middle of my stomach and around my belly button; kind of looks like a zipper going down the middle of my stomach.  Well thanks again for your response and your words of encouragement; I will update you tomorrow after my doctor’s appointment.

 

Belleenstein- Thank you for sharing your experience; and I can totally see how your situation could occur.  I think my situation is a little different because I tend to be an over communication as well showing my emotions pretty effectively in terms of pain, happiness, etc...I also I have several health care professions in my family so much of my frustration has been getting there feed back on how poorly it was handled.  I was only found to have Crohn's just less than 2 months ago in November, and have been extremely healthy and active my whole life, so this has been like the being in a head on crash but there no other driver to point the finger at; just the diseases that seems to have as many unknowns as knowns to it.  I really am more hopefully and positive than my post may appear.  Also in terms of Hospital's trying to cut costs by getting patients out of the hospital sooner; that may make sense for someone with out insurance, but I have amazing health coverage as my wife is a government employee, so they have already billed and been paid on nearly $200,000 worth of hospital bills.  In terms of care of the nurses; I was frustrated when I found out I got my pain meds over an hour late because my nurse was at lunch; especially when the hospital has a specific patient standards that lists "immediate response"as one of their key goals.  Sorry to continue to rant; on the positive note my surgeon was great and I'd say 75 percent of the nurses showed compassion and did their job appropriately.

 

Thanks again for the support, this website has been great; I've been reading the posts regularly over the past month, so I'm glad to be apart of this.  God Bless

 

Rubin

 

Rubin,

I really admire you for being able to get through that, it takes alot of strength to not strangle the medical personnel sometimes! My resection was supposed to be lapro but ended up being open, I had the zipper too! I had been on vicodin for months and was using alcohol to supplement the pain relief (stupid, I know, but I didn't want to ask for stronger pain meds, stupid again, I know). I let the surgeon know that my tolerance to pain meds was a little high, and the surgical nurse, and the anesthesiologist, the floor nurses, nurse aids, the housekeeper. The epidural worked great for me, I am so sorry that it didn't work for you. I think that an epidural is pretty standard with open abdominal surgery, maybe they just didn't bother letting you know, or only did it if they changed from lapro to open surgery? Anyway, after really good treatment in the hospital, the oncall surgeon who discharged me wouldn't prescribe me much pain meds. I told him that the percosets worked well and he said 'I know, that's why I don't use them'. I begged very nicely and he sent me home with 10 pills. I'm not ashamed to say that I was hoping he would have some sort of accident that would be very painful and he wouldn't be given pain relief! I made it through but I know that if I need surgery again (likely at some point, I've been 15 months since that surgery, humira isn't working, and I can feel the pain and hear the rumbling) I will have a plan with my surgeon and be sure that it is written in my charts for any other doctors to see. I refuse to be in more pain than I can function with, life is too short. I spent way too much time in pain already! I'm hoping for an uneventful recovery for you, and hope you will feeling better soon.