Excruciating abdominal pain

[Ironside]

I am a C5/6 post 20 years. For many years I have suffered abdominal pain. Gradually over the last few years it has got worse. Whereas I could go quite a while withno pain to speak of, I will have a couple of really bad days when the pain is so severe it makes you Cry out in bed. The pain isn't always in the same place. Occasionally it is around my bladder area, other times it is either side of other times it is above the bladder, nearer to the belly button. I'm not kidding, sometimes I think my time is up. Sometimes it feels as if someone is trying to push their hands straight through my body. I will also get a huge buildup of pain. It is always at its worst in bed, late at night. I also get weird hallucinations with it. Honestly, if I haven't already got enough to deal with, I could do without this.

[Cherry]

Hiya I'm so sorry to hear about this. When you go to get your wound check I'd request a CT scan in advance too. To rule anything out........it could be anything from a constipation backlog to harsh nerve pain. Hope you can get it sorted, you don't have to put up with this pain.

[David Berg]

This is a significant change after it sounds like you were pretty stable for many years. I presume you've spoken to your doctor about it, what have they said? What tests have they run and what have you tried for the pain so far that hasn't worked?

It's important to keep your medical team in the loop on changes this serious.

[Ironside]

I am ashamed to say that tomorrow will be the first time I have visited the spinal unit in about seven or eight years. I should go every two years really. Everything seemed to work okay. The bowels are really good and I always drink at least two litres of water a day. I don't get water infections so I have always assumed that my kidneys are working fine. I suppose it is the fear of hospitals. I feel really safe at home and I cannot stand the thought of having to stay in hospital for a long period of time. Well, looks as though my time has run out. I blame myself totally. If I had gone they would have checked the pressures on my cushion and this might never have happened. I have had this pain for a long time and I have thought to myself, I am not dead yet so obviously isn't anything too bad. Pretty stupid eh? They are also going to do the ultrasound tomorrow on the kidneys and bladder

Anyway, this time tomorrow, I will be able to tell you exactly what lies ahead of me. God I hope they have an Internet connection in the hospital wards.

And to think, after spending nine months in hospital 20 years ago, I didn't
want to leave.

Okay, 23 :25 now, better get some sleep

[lynnifer]

I follow the KISS rule .. keep it simple, well you know the rest.

I'm going to harken a guess that after 20yrs of quadism, something in your abdomen has adjusted .. bowels, intestines maybe .. causing gas .. which is felt most when you lie down i.e. at night. Remember we don't have the tendons muscles holding these organs in place firmly anymore.

I suspect something similar is happening to me, but for endo reasons.

Re: not attending the spinal unit - I've seen one once in the 21yrs since paralyzed and I wasn't impressed with any new knowledge so I didn't go back. lol

I wouldn't worry re the pressure sore causing this pain ... if you were feeling pain from an infection or whatever, you wouldn't be alive right now ... but that's just my unedumacated opunyun.

[alan]

It could all be neuropathic pain (as in my case - every test shows my organs are fine, but they all hurt like hell.) Have your parts checked, and see what the test show.

Good luck.

[David Berg]

It could all be neuropathic pain (as in my case - every test shows my organs are fine, but they all hurt like hell.) Have your parts checked, and see what the test show.

Good luck.
That's one possibility I was wondering about, such as a nerve somehow becoming impinged. No telling at this point, but it's definitely a good idea to have it checked out. Glad to hear you have an appointment.

[bob clark]

It could all be neuropathic pain (as in my case - every test shows my organs are fine, but they all hurt like hell.) Have your parts checked, and see what the test show.

Good luck.

After 23 years of SCI I finally got neuropathic pain. I thought you either got it in the early stages of SCI or not at all. Not so. I have a stabbing pain where one might feel a bladder or kidney infection (liver area and around towards the back) and thought for sure it was bladder or kidney stones or something like that. I'm a T-5 so the pain is well below my area of sensation. The gabapentin seems to be working okay but only after having an IVP, abdominal ultra sounds, chest and spinal x-rays and finally a CT scan performed.... all the tests showed nothing wrong except maybe a bit of trouble around where my Harrington rods end via the spinal x-ray. Probably where most of the pressure and weight bearing is at. But with no earlier x-rays to compare the newer x-rays to not much could really be discerned from them. Keep copies of all your test results for later comparison... stupid me just thought the hospital took good care of that info.

If the gabapentin stops working then I'll get an MRI done and see if maybe some addition metal fixation hardware can take the pressure off of that area. I'll try anything to keep the the stabbing pain at bay. I may even request an MRI from my doctor this coming month and see what she thinks about the idea. It seems like they prefer throwing pills at everything instead of getting at the root cause and correcting it. But what do I know???

[David Berg]

Another thing I should mention, and keep in mind I'm NOT saying this is what's going on with you necessarily, is that a lot of doctors don't realize that neuropathic pain can affect the gut. For years it's been thought this wasn't possible, but some docs have finally realized that it is a possiblity. Fortunately, it doesn't appear to be all that common.

[Ironside]

Well, I went to the spinal unit today under my own steam. First of all I had the ultrasound and scan of the kidneys and bladder. Bladder seems okay, kidneys not so okay. My right kidney seems a bit small apparently but that's all they told me, I have to have some more tests done. Unfortunately, they didn't have my x-rays from a few years ago to compare so we don't know whether it has always been like that. Doing my own research tonight didn't help settle my nerves. I could have kidney failure. My left kidney is the correct size but it has whacking great stone in the middle of it (about 1-1/2"). The consultant did tell me that stones were fairly common in spinal injury subjects but it still scared the hell out of me. I've got to go up and have it removed quite soon. Regarding the sore, he thinks there is something causing but is not overly concerned. He said that they will probably just cut it all out and sew it up. It will mean three weeks in bed and three weeks gradually getting up. So, all in all, it could have been worse, but it could have been better.

[teena]

Speaking from experience, that kidney stone can cause MEGA pain, and generally make you miserable. I have had several. They hurt like EVERYthing.

Hope you get on the mend soon!

Take care, God bless!

Teena...who is not SCI, but has birth defect of hip/arthritis...

[alan]

It's apparently not unusual for kidneys to be different sizes. I always discuss such things with the tech while I'm getting an ultrasound.