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Crohn's Disease Forum » Surgery » Strictures & Obstructions » My resection story... (Kinda scary beware)


09-12-2014, 07:08 PM   #1
Kittee
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My resection story... (Kinda scary beware)

I've had a rollercoaster of pain and emotions since the surgery tues morning.
The anesthesiologist came and apologized to me, because my epidural failed, and I woke up multiple times during surgery. (Thankfully I don't remember that.)
Then after, the pcu nurses didn't know that it wasn't working, so when my general anesthesia wore off, I had NO pain control. Took them hours to figure it out. I was screaming in pain. For Hours.
Finally they gave me a pump, which worked well until in the middle of the night last night when my iv blew, I didn't know it, so I just kept jamming the pump. The pain was out of this world. Finally a nurse came and fixed it. Everything was great until 10 am when they insisted on removing the pump and get me going on orals.
Well, I walked around the hallway, came back to bed, woke up 3 hours later in the worst pain ever, like after the surgery.
Took them from 2pm until 6 pm before they gave me something through my iv to help because oxy wasn't working at all. 10 mg oxy . I looked it up. That's NOTHING.
I'M SITTING here sobbing right now because ill have to beg for some more diluadid when the nurse comes back.
To make things even worse, one of the surgeons who was working on me yesterday dropped by, right when I was in the thick of it and said "you don't look like you are in too much pain"
When he had come in, I had just calmed down, from my nurse helping me.
She reported him for saying that but I still feel like a looser or something.
I can't stop crying.

I wrote that a 2 days ago...

I'm still in agony since.

They sent me home once I passed gas yesterday and gave me Diluadid 4mg to take every 3 hours. I'm still in CONSTANT pain. Doesn't matter if I take the pills or not. If I don't take the pills I'm at a 9-10 if I do take the pills I'm at a 5-7. The doctor actually told me that being at a "5" is "acceptable" and I shouldn't expect much better.

I'm also on Gabapentin, which they explained to me is a drug to help my nerves accept pain medication better, but I have no idea if it's helping or not.

Surprisingly, my back hurts almost as much as my front. I don't know if it's from all the stress, the tension of pain and crying or the failed epidural.

What the heck.

Has anyone experienced anything like this before? Is it going to get better???
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09-12-2014, 07:32 PM   #2
Sef0912
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Is there another option, as far as another hospital or doctor, that can treat you in a pinch and at least help to control your pain. You should not have to have pain that cannot be controlled or at least reduced to be light to at least tolerable. Hope that you can get the pain down and send support your way.
09-12-2014, 07:52 PM   #3
Kittee
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It's funny but in my area the hospitals are joined and work as partners. The surgeon is the "Golden" surgeon here so I know she was doing her job, it's just be a really poopy experience.

I had the surgery on Tues, it's Friday night now, I sure hope by Monday I feel better and this can become a thing of the past. If I'm still in great pain by Monday, I'm clearly going to go back in and demand more help.
09-13-2014, 06:20 AM   #4
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I'm in hospital now and was given as much oxycodone as I wanted with a button to push- was told to use it to prevent pain before it started. I was amazed how little pain I felt. When they tried to switch me to oral morphine, the withdrawal was brutal, so much so they gave me the button back. The next day they took the button away again, because staying on it longer would only increase the problem. I just had to go through the withdrawal. I was begging them to give me the button back, not because I was in pain, just because I needed it. I couldn't sleep, couldn't keep still, was hot and cold, hallucinating. I wish they'd never given it to me in the first place. They told me it's second only to heroin in terms of withdrawal.

Pain relief isn't as straightforward as it sometimes seems. Killing pain comes with a cost and giving more drugs is not always an easy decision for a doctor (nurses failing to give prescribed pain relief is another matter though). But I have been in pain also, and I know how trying it is. I hope you heal very soon.

You're still in very early days. This pain will recede - don't worry, if it's surgery pain, it will.

Last edited by UnXmas; 09-13-2014 at 11:11 AM.
09-13-2014, 07:25 AM   #5
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I am really sorry that you have been in so much pain, I hope it is slowly getting better - it does get better.

I had one resection and stricturplasty to remove three strictures back in 2003. Thankfully I have a rather high pain tolerance, but I still remember the pain quite well. I was in the hospital 7 days post-op. The first two days I was on IV painkillers, then they said "the sooner you get rid of painkillers, the faster you will heal and can go home" so I tappered down the painkillers to zero within the next 3 days. The pain was pretty bad overall, but 7 days post-op things started to be a lot lot better.
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09-13-2014, 08:56 AM   #6
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My resection was a painful, scary experience. I didn't have an epidural, just general anesthesia. But upon waking from the surgery, they were unable to get the pain under control. Finally they gave me a dilaudid pump, and it helped. I was given Percocet when they discharged me. It feels like it's never going to end. But it eventually did.

Last edited by darster; 09-14-2014 at 12:23 PM. Reason: darn spell checker, it's Dilaudid not dialysis
09-13-2014, 11:26 AM   #7
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Hello, I still think lap is more painful then open. I hope today finds you feeling better. It is a very painful surgery (depending on what is actually done). It can be so individual.
If the pain is being difficult, call the Dr. ~ Do not wait until Monday.
I thought I would never get better, healing was slow and painful. Reduction of pain was more noticeable weekly rather then daily for sure. It felt like torture. I cried too, hug to you. I did get better, it took time. We all like to think we have a high pain tolerance, lol ~ at some point we meet our point of 'are you kidding me?'.

Hang in there, keep in touch with your Dr. ~ Feel better soon!
09-13-2014, 11:42 AM   #8
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Sometimes I wonder if people who say they have a high pain tolerance just haven't felt as much pain as others. How would we ever know? We can't ever feel another person's pain and compare. Even if two people had the exact same surgery, it wouldn't necessarily mean their bodies respond the same and cause them the same pain. Maybe some think they're tolerating pain well simply because they're not in that much pain - or the other way round and think they're a wimp, when actually they just really are in a lot of pain.
09-13-2014, 11:48 AM   #9
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Hello, I still think lap is more painful then open.
I think so too.
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09-14-2014, 02:00 AM   #10
alex_chris
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Sometimes I wonder if people who say they have a high pain tolerance just haven't felt as much pain as others. How would we ever know? We can't ever feel another person's pain and compare. Even if two people had the exact same surgery, it wouldn't necessarily mean their bodies respond the same and cause them the same pain. Maybe some think they're tolerating pain well simply because they're not in that much pain - or the other way round and think they're a wimp, when actually they just really are in a lot of pain.
That is surely possible. However, my surgery was the removal of three strictures in the smaller intestine and a stricturplasty - all of which was first attempted via laparoscopy, but due to the severity of the strictures, they then opened me up fully and removed 24 inches of intestine.

When I was 17, I was skiing with friends and broke my left thumb in three places. It hurt, but I still felt it was just bruised and continued skiing through out the day. I was pretty surprised when they told me about the multiple fractures the next day in the hospital.
09-14-2014, 07:29 AM   #11
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I had a combination lap/open surgery for my resection.No matter if you have a high tolerance to pain,or not,you need to be able to heal.Some pain is expected,we've been cut open! It should not be so intense as you describe..get it checked out asap.
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09-14-2014, 09:09 AM   #12
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Sucks to hear you went through such a rough time!

I also ended up with uncontrollable pain, but was still discharged on the basic run of tramadol and oxy, when neither of them helped. It felt like being hacked at with a serrated knife every time I went to lay down for a week. Couldn't move, could only scream. After a few days of refusing to lay down I had to give in and go to the hospital, and it turned out that lyrica (pregabalin) and a mild laxative were a godsend. 3 months on and I'm pretty much back to normal.

It's a really interesting topic you bring up with the pain and pain tolerances. I've always wondered that. I remember reading a reddit thread full of people working in health and medicine talking about the surprising cases of pain management they've seen. E.g. an old lady essentially shattering her pelvis, and still walking for days whilst taking a panadol or two every now and then. o.0
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09-14-2014, 12:27 PM   #13
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Sounds like my mother. The only time she ever admitted to being "in discomfort", as she puts it, is when she had shingles, and I understood that shingles are/is very painful.

Last edited by darster; 09-14-2014 at 12:28 PM. Reason: spell check
09-14-2014, 01:19 PM   #14
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Now I'm wondering if my latest surgery was abnormal. I've had extremely painful surgery in the past (the most painful a laproscopic colectomy). The most pain I ever felt was with post-surgical ileus, when a doctor missed the diagnosis, and gave me a laxative (the worst thing he could have done!) plus for some reason I was unable to vomit, and the bile built up in my stomach 'til I looked nine months pregnant, plus I was allowed no opiates... so I know that I can feel pain and feel it badly.

A couple of weeks ago, I had an emergency non-laproscopic surgery to fix a perforated bowel, had some bowel removed, a new stoma created. As I said, at first there was not much pain but I think I was on a lot of painkillers, but even off the strong ones pain wasn't much of a problem. Now I'm already without any painkillers, and I'm getting the odd twinge and sometimes some gas moves around inside and makes me flinch for a minute, but I'm otherwise pretty much pain free. Is that normal?

Come to think of it, the perforated bowel wasn't all that painful either, not as much as I've read in other people's accounts. I definitely felt very unwell, but in a general way, and more than anything I had this sense that something was seriously wrong (I know that's vague, but it's the only way I can describe it), but the pain was bad, but always bearable.
09-14-2014, 03:09 PM   #15
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My colectomy was an open surgery and required a lot of digging around due to adhesions. When I woke up, I had a morphine pump, but was experiencing no pain. I had some weird heart issue going on which was believed to be a result of unrecognized pain, so the nurses insisted that I use the morphine pump. It still didn't help my heart and I had no pain, so I stopped using it. I was sent home with Vicodin pills, but never used them.

I don't know why I had no pain with this last surgery. It was a big operation with many complicating factors. Maybe due to repeat surgeries in the same area, enough nerves have been damaged so that no pain is elicited? No idea. The heart issue was never defined, but the thought now is possibly the vagus nerve got beat up and made my heart wonky. (This ultimately resolved after 6 months.) I also couldn't cough without passing out for about a year after surgery. It is all very interesting.
09-14-2014, 04:16 PM   #16
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Maybe sometimes in extreme physical stress some adrenalin kicks in or something and we don't feel pain because our bodies want us fighting and not distracted and distressed by pain?
09-15-2014, 11:05 AM   #17
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Wow, that had to hurt Kittee.

I had the general anesthesia during my resection surgery. Being my first, I turned down the epidural before the surgery. When I woke up I realized that was a mistake and they gave me the epidural. I thought I had a high tolerance for pain but that felt like a 12 on the scale of 1 to 10. Morphine was the only other painkiller they gave me.

When I was discharged they gave me percocet. The first four weeks were painful. It does heal but it takes time. The longest healing was my abdomen which took about a year. Get a handicap parking tag, you will need it. Sneezing and coughing HURTS! Simple tasks like getting up out of bed or walking the stairs was an ordeal. I didn't realize how much we use our abdominal muscles until that surgery.
02-03-2015, 12:29 PM   #18
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It's not a competition none of you should have to tolerate severe pain makes no sense because modern medicine is much better then we think you need to yell out at them and tell your health care team how they would feel if they were in your shoes feeling that level of pain shouldn't be happening and seems like it's lack of care and just bad practice. I believe it is manageable and have had multiple surgerys and from my experience depends on the care being provided and I can clearly see the medical mistakes made by some health providers, you should not have to suffer in that much pain, its simply is a lack of care, treatment, and responsibility of your doctors. They have put you threw engough already and to any one else reading this put your foot down and get the help you deserve, engough already to many people out there just not being heard or getting the attention they deserve. Pain management is all about timing and delivery, it should be a dedicated profession! Yes someone that specializes in that individuals needs, hope you all get well and are better soon, be strong
02-03-2015, 03:46 PM   #19
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It's not a competition none of you should have to tolerate severe pain makes no sense because modern medicine is much better then we think you need to yell out at them and tell your health care team how they would feel if they were in your shoes feeling that level of pain shouldn't be happening and seems like it's lack of care and just bad practice. I believe it is manageable and have had multiple surgerys and from my experience depends on the care being provided and I can clearly see the medical mistakes made by some health providers, you should not have to suffer in that much pain, its simply is a lack of care, treatment, and responsibility of your doctors. They have put you threw engough already and to any one else reading this put your foot down and get the help you deserve, engough already to many people out there just not being heard or getting the attention they deserve. Pain management is all about timing and delivery, it should be a dedicated profession! Yes someone that specializes in that individuals needs, hope you all get well and are better soon, be strong
I found oxycodone withdrawal far worse than major surgery without painkillers, and that was after just a few days of oxycodone. In any future surgeries or other episodes of pain, I plan to refuse strong opioids. Addiction and tolerance develop quickly, and painkillers can have other side effects as well. Limiting or refusing painkillers can be the right decision for a doctor to make. Sometimes pain - even severe pain - is necessary, as the alternative is worse or potentially dangerous. It's not a simple decision for doctors to make, and it's not due to doctors being uncaring.

When someone is in severe pain, it clouds their judgment; all they want is for the pain to stop. The doctor may have to be responsible for making sure they don't take a dangerous amount of painkillers, or from taking them for long enough to develop addiction and tolerance issues, by deciding what is appropriate pain relief on the patient's behalf.
02-03-2015, 07:54 PM   #20
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Agree painkillers are extremely addictive I know because I've been there and it's going to be a life long battle for me. Thanks to certain modern medicines that aren't popular and little more expensive, there are effectives ways to come off addictive pain killers in particular opaites, should be more education of the effects of it and how dependent you can become. Having a disease is enough of a battle as it is. There are lots of non addictive pain killers out there that I know work and wish I would have known sooner unfortunately I trusted what I was being told which lead me down a dangerous path. Ask what's out there for you and what the side effects are is what I learned and ask if there is an alternative that is just as effective without the side effects and you'll be surprised what's out there, a lot of these drugs I found are not being prescribe and pushed like some other drugs maybe because of incentives.

Everyones idea of pain Is different I get that and for some it's chronic, which leads to severe pain if not managed, which some don't ever have to experience! Ask and speak with professionals that have delt and have experience with pain mangement is the best advice I can give I'm no expert can only share some of what I've experianced, hope it helps
02-04-2015, 07:17 AM   #21
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AndyL, I've been addicted to codeine for a long time. I don't want to stop it, but at times I make myself stop taking it for a while to make sure I can do so and to keep my addition in check.

If you know of medications that I could take instead which do not result in addiction or tolerance I'd be interested in hearing them. Though I don't take codeine to reduce pain; I take it because it gives me energy (I know it's a sedative, but for some people it has the opposite effect), it gives me a general sense of being well (I'm sorry that's such a vague way to put it, but I can't think how else to describe it), and sometimes it has a positive effect on my state of mind a bit too.

I saw pain management specialists when I had the experience with oxycodone, so I'd have some doubts about seeing any more: I had the oxycodone via IV, which I could control by pushing a button, and one of the specialists told me to press it all the time; she stressed so strongly that I must press it and press it, that I shouldn't feel any discomfort, let alone pain. So I did what she said.

Then I had the awful awful withdrawal when they took the IV away, and made such a fuss they put it back (and I felt so much better, I felt ok again ) .

Then another pain specialist came to see me and said there was no way I could get withdrawal after such a short time. So they took it away and I just had to go through the withdrawal. I asked if I could come of it gradually and they said no. I asked if they could give me something to help with the withdrawal, and they asked whether I was in pain without the oxycodone. And I told them the truth: that I wasn't in pain. Stopping the oxycodone did not mean I felt more pain. It meant I got a lot of other severe withdrawal symptoms. But they said that wasn't possible and so they said no to that too.

And I don't take codeine for pain either, so it's not really a pain specialist I would need. I'm not sure what I need.
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