Abdominal Surgery under the lens of chronic central neuropathic pain

[arndog]

I have been out of commission the past 10 days hospitalized for intestinal obstruction secondary to adhesions which has required a midline exploration and lysis of adhesions that have trapped the bowel. I have daily pain for 9 years following my spinal cord injury that have been life transforming and have been the defining factor in my experience of Spinal cord injury. During this period, I have had 12 bowel obstructions with severe abdominal pain, cramps, nausea , and vomiting. All have required hospitalizeation and half of those required surgery. The one handled surgery were evenly treatable with open surgery with lysis of the adhesons, the others handled laproscopically.
This bout was one of the worse and I awoke to a new 7 inch vertical midline scar.
This is a very painful experience even without chronic pain but the combination is a disaster. What normally works to alleviate pain in others doesn't touch me since I take baseline meds to begin with. It doesn't end there. The abdominal distention is experienced me since it is below my level as strange burning, including back pain that doesn't fit into the the common experience of the treating physician - I am isolated by my altered experience of the problem and have no one who has been through this.
My neuropathic pain worsened from this and I am at a hospital away from my pain management doc.
They kept harping on a 0 to ten pain scale and force me to use it even though my experience of this was well above any pain level that any one has had there. I know I can't be sure of this and can't provide any proof.
I just had the staples removed and I had so much allodynia pain that the surgeon was shocked to see that simple staple removal could cause such a thing. He thought I wouldn't feel them at all because they were below my level of injury. The allodynia and dysesthesia have been off the charts. I am back on narc levels of 90 to 100 mg/day that are going to require withdrawal from . I am experience abdominal pain which gets your attention maybe like no other injured organ system. At it's height, I don't think I can take it.......
This week has been a nightmare and still continues with no end in sight. I had developed great physical fitness despite my chronic pain which has been my life savor through out this terrible experience and that is gone. I am just trying to get through the day.

[Bonnette]

This is terrible and I'm getting the feeling that you'll start getting better once you come home and are once again under the close care of your pain management doc. In the meantime, the treating physician where you are now needs to have a telephone consultation with your pain management doc so that, together, they can come up with a treatment plan that is personalized for you. It sounds as if a generic approach is being taken to your pain because the medical staff is unfamiliar with the neurological issues your SCI has imposed; they need to have a better appreciation of your particular medical history and trajectory. I hope that you will begin to experience relief very soon, arndog.

[swh2007]

Hang in there Arndog! I wish I could help. I have had some of the same experiences, on a much smaller scale, and I was miserable to the max.

[smokymtn memories]

Lord save us from the medical community that does'nt have a clue...... What you've been through is no fun for someone AB. My daughter has just done the same.....four weeks later they decide they should have taken out her gallbladder. Now, six weeks later they decide they should have scoped her. Her problems stem from an eleven year old bariatric surgery that was'nt done correctly.......they somehow forgot to leave her a stomach.....the asses.

My last pain clinic appointment resulted in me being told to take miralax everyday. I guess going once a week is a no no. They mentioned blowing out the intestine or bowel or something. I get horrific stomach pains and cramps, which in turn ramp up the neuropathic pain. I can't imagine having the surgery done. Especially with someone who does'nt have a clue about "us"!

I feel for you Jon. I hope you are back home with your regular doctor very soon. I had trouble with AD in the hospital after my kidney removal surgery. They did'nt have a clue about my pain levels and they were giving me the AD which in turn would then raise my blood pressure out of sight.... I even took them paperwork about AD when I was admitted so they would know in advance. They finally found the paperwork and started treating the pain. What a relief that was........

I hope you're feeling much better very soon.........

[bollefen]

Sorry dog, keep the faith

bill

[metronycguy]

wow really sucks man, i have the feeling they are not giving you any answers on why this is happening? just put up with he pin as long as possible, have no life and than they will slice you open for a look see. i also know how hard it is to do your own research when your in pain like this, so you have to depend on your doctors and it iisn't affecting their life.
are tou getting obstructions? strong narcotics add a secondary problem that has nothing to do with the ci injury, but it has same effects. i have that problem, it took me 3 or 4 doctors to finally explain it to me. the methadone jams up my colon at the ascending and transverse. my injury causes problems on the descending side, everything went downhill for me once i went on fenatyl and methadone. the doc said he has done more colostomy's because of the effects of those drugs.
luckily i found a PIE provider that was also knowledgable in a lot of stuff that was opposite of what all the gastro docs were telling me.
no wheat, no dairy,no soy, and as little gluten as possible, should be gluten free.
i don'tdo the PIE as often as i should still since it still is taking me a long time and i ned energy to do it, but just stopping the dairy and wheat fiber and most glutens has made a huge difference.
i also use a old sharper image two headed hand held massagers , i run that clockwise following the colon and it makes a big difference in what comes out, it is like massaging, but easier on the body. i learned the massage routine when i had a PIE technician working on me, even after the session when i was in the bathroom emptying, i would get bad cramps , i started working the area by hand where the cramps were and it was like i broke the dam.
this gastro massaging and treatment by a technician imo should ne mandatory medical coverage for sci that are jammed up.
i have to make a contraption so that i use 8 to 10 gallons when doing the pie, the 5 gallons doesn't enough, When oi had the technician doing it they found that out, luckily they had a high colonic set up with a big waste tank and could do 8 to 13 gallons on me once a week any less and iwas going a lot the next day every couple hours. it is such a life changer, hopefully the new kit ,peri??will be approned son and that will help people.
my biggest improvement , and i fought it, was giving up all wheat and bread made with wheat . i eat a lot of quinoa, a brazillian gluten free grain, i make my own gluten free bread from a max, but it is more lioke cake ,than bread.

[dejerine]

arndog

very sorry about your repeated surgeries. I don't like to hear of it because as you know, the bowel shifts, and a quiet adhesion is no longer quiet. i have heard that going mostly to a liquid diet, such as milk shakes, is a help but there is no long term proof of this. I certainly hope you don't have to have any more surgeries.

as to the pain, I can just imagine the allodynia from staple removal. One of the very most common things is "delay with overshoot" which means the threshold for sharpness is raised, but once it is reached, overshoots wildly. Delay with overshoot is a classic sign of injury to the spinothalamic tract.

Delay with overshoot is fairly easy to demonstrate with temperature, but the allodynia to sharpness is so severe that it is hard to find anything blunt enough to demonstrate it. Von Frey hairs or similar filaments have been used, but nearly anything metal which is the least bit sharp is already past the overshoot threshold. No wonder staples hurt.

As to what meds to take, i suspect you know, or can figure out, better than anyone, but I doubt they are going to listen to you. Maybe something you are not tolerant to, such as ketamine, might be considered.

metro may be onto something with his abdominal massage. I have never heard of that before, but it sounds interesting.

[arndog]

The reason I have small intestinal obstructions is simple. My L1 compression Spinal Cord Injury was only one of many things that went wrong the day of my injury. I had a open pelvic fracture that separated my pubis bones by 6 inches, cracked my sacrum like a bread stick and tore my rectum off my colon and created a new traumatic opening in my perineal region that was the size of a human fist. Sorry to spoil anyone's sunday brunch with that. But I had open contamination within my abdomen and this required an emergency colostomy which has and can can never be reversed and I am a set up for adhesions big time. Due to fecal contamination of my perineal cavity and pelvic fracture, I went on to septic shock and ARDS. My SBO (small bowel obstructions) start with a trapped loop stuck in some band like adhesions but then take on a life of their own. I have had small bowel death due to delay (lost a few inches), and then a big time ileus to perpetuate the problem. This has happened 12 times since my injury and I have no reason to suspect it won''t happen another dozen times in the next decade. Adhesions get worse over time and after each open procedure. I can manage chronic neuropathic pain, but gut pain is a special breed of it's own and I feel like dying when this hits with its full fury.
3 days now at home and only slightly better. I put everything about life on hold and just try to get through this. I am very lucky this did not hit on my recent sitski traverse of the sierra mountain range - a 3 day, 2 night snow camping trip.. I would have been hosed. I did go on a low residue diet prior to the trip so I could get out with less stool production. No fruits or vegetables , no fiber, only white bread, rice, plain eggs whites and chicken. It did work, BTW.

I should puree all fruits, salads , and vegetables and maybe I will from now on.

I am so exhausted from all the suffering, I don't know what to do or who to turn to. All I can do is what I usually do, soldier on.

[Bonnette]

Words are inadequate to express how much I wish it were possible for you to heal completely and never - never - have a return of this condition. May strength come to you, may you have some relief, may this particular siege resolve in a way you can live with, and soon.

[thehipcrip]

Oh Jon, my heart is breaking for you having to suffer so from so much pain and from the lethal combination of your surgeon's arrogance and ignorance. That "if I've never seen it or heard of it, it can't possibly be true because I'M A DOCTOR" attitude combined with them treating you (if I read this correctly) as though you were opiate naive leaves me aching for you and wishing like hell I could do something for you beyond typing my condolences for your misery on this page.

I'm thinking of you and sending a call out to the universe to help you heal quickly and give you some way to escape the nightmare of hurting so badly.