[Rudy]

Hello, I'm a level 3-4 Quadrapeligic, 45 years old and had my accident 30 years ago. I always felt sick on and off but for the last couple of months,I have been feeling quite ill, due to dysreflexia. The dysreflexia is caused by my intestines and bowls. I get pain in my abdomen and some times acid reflux.The doctors told me that there is not much that they can do about it. If it continues,my doctor says I may need a colstomy.Frankly I'm not sure if that would help me feel any better, also, I don't know if I am strong enough to go through one more major surgery. I don't want to live like this anymore. Is there anyone out there who has experienced anything similar?
Please let me know. RUDY

[eBanker]

Rudy,

I would advise you to have your doctor test you for Celiac Disease. Unfortunately, most doctors have never even heard of it. Four years ago, I was having similar symptoms. Because my grandfather has it (it's hereditary), my doctor tested me for it. It turned out that I have it, and the gluten free diet has helped me a lot. I still have some symptoms, but it's much better.

This might not be your problem, but it's probably worth checking. The test involves an endoscopy (which my doc did in the office) and taking biopsies of various tissues in your upper small intestine. For more information, do a Google search for Celiac Disease.

[Rudy]

Thankyou for responding. My blood work is fine,so I dont think thats it. My doctor thinks my intestines are getting slugish and stool backs up causing dysreflexia and reflux.

[Apparelyzed]

Hi Rudy,

As you are a "long termer", you probably know everything I'm about to post, but you never know!

Regarding gas pain and dysreflexia. Gas can cause dysreflexia, and increased spasms in the abdomen. I know this because it has happened to me in the past. Luckily, mine only lasted 24 hours, in fact I wrote about it here: Trapped Wind

With regards to keeping your digestive system moving, how's your diet?

I eat lots of vegetables and salads, and that helps to stop constipation, in fact, in my 15 years, I've never been constipated, and I don't take any suppliments for my bowels.

Another factor in keeping everything moving is to drink plenty of fluids, mainly water. Too muck caffine can cause acid, so it would be worth cutting your intake of coffee back if you drink alot. Also, greasy, high fat foods can also cause a build up of acid.

If you are getting acid reflux when in bed, it might be worth taking an antacid before bedtime, as constant acid reflux can really damage the esophagus, and in some cases, lead to cancer of the esophagus.

That's about all that comes to mind at the moment, and hopefully it will be of use to someone!

Regards

Simon

[DaveP]

I had really bad "gut ache" for years. One dr suggested a colostomy without even doing any test - I asked him if he'd chop my head off if I had headaches!

Look at what you eat and drink, and see if there are things you can do to improve what goes into your gut. Many of us are intolerant to certain foods, especially the food we over-eat. Celiac intolerance is very common in those that eat too much wheat so try not eating any thing with wheat (bread, biscuits, pasta, some cerials, etc) and see if that makes any difference.

A friend of mine stayed with me for a few months and he was Celiac so I ended up eating the same, and felt better in many ways - more energy, more alert and lost some weight.

I also started taking suplements to help my guts, such as Aloe Vera & Actimel daily, and all the different changes have improved things loads. I occasionally get a flare up but that's mainly due to stress - stress affects the gut...

Doing nothing means nothing will change! Good luck.

[wheelz1967]

Rudy, on Aug 14 2007, 03:41 PM, said:

Hello, I'm a level 3-4 Quadrapeligic, 45 years old and had my accident 30 years ago. I always felt sick on and off but for the last couple of months,I have been feeling quite ill, due to dysreflexia. The dysreflexia is caused by my intestines and bowls. I get pain in my abdomen and some times acid reflux.The doctors told me that there is not much that they can do about it. If it continues,my doctor says I may need a colstomy.Frankly I'm not sure if that would help me feel any better, also, I don't know if I am strong enough to go through one more major surgery. I don't want to live like this anymore. Is there anyone out there who has experienced anything similar?
Please let me know. RUDY

I've been a 4/5 level quad for 40 years. For the past year or so, I've had a "pulling" sensation upon awakening. It begins in my head, then travels down to my abdomen (pain) and slowly leaves with passing of gas. It feels just like dysreflexia without the heighten blood pressure.
I got dysreflexia from bowel movements and with anything that entered or left my body. My rehab dr. prescribed nitrogylcerin ointment to use during my bowel program. Still my blood pressure rose to dangerous levels.
A few months ago, while having a hemorrhoidectomy, the lining of my rectum fell and a suspension had to be performed. Ten days later I had stenosis (narrowing) of the rectum where the stitches had been. Well, eventually my rectum closed and I had to have a colostomy. I still have the same "pulling" down sensation and abdomen pain, which I had hoped would've ended with the colostomy.
Those sensations sound like what you described. Do you have it upon awakening? And is there truely a rise in blood pressure?

[Rudy]

Yes my blood pressure goes up and cramping, but not just in the morning. Also get it most days, but still have ocasional good days.

[wheelz1967]

Rudy, on Sep 5 2007, 04:17 PM, said:

Yes my blood pressure goes up and cramping, but not just in the morning. Also get it most days, but still have ocasional good days.

I have since had my colostomy. I no longer worry about dysreflexia, which I got mainly during bowel movements. (The pulling sensation is worse now, which includes a type of cramping in my abdomen. And I still get alot of anal pain and neuropathy.) If you were female, I'd say it could be due to your period. There's something wrong in your system which a colostomy may not solve. A G.I. doctor at one of the major SCI hospitals, who also specializes in SCI, suspected spasms in my intestinal tract and there's meds for that. I don't know if you tried any of those.
Try all options short of a colostomy. A colostomy might not solve your cramping. It's an easy way out for a doctor to suggest the surgery. I know dysreflexia can be scarey and dangerous. How high does your blood pressure get?
The colostomy surgery isn't bad. I'm just having a hard time adjusting to the bulge on the side of my abdomen--body image. And I'm still trying to get help for the sensations that I had prior to the surgery. I'm glad the dysreflexia has lessened when I have bowel movements.
I too was 15 when I was injured. And I have a hiatal hernia (acid reflex).

[Rudy]

I am having spasms in my intestinal tract, but I am worried medication will slow my breathing or bowels. What is the name of your medication?

[wheelz1967]

Rudy, on Sep 16 2007, 02:11 AM, said:

I am having spasms in my intestinal tract, but I am worried medication will slow my breathing or bowels. What is the name of your medication?

It's been awhile since I tried one. It had to be taken under the tongue when the spasms begin. I had my spasms during the night and wasn't about to wake someone to give me the pill. It really dried up my saliva. It's a matter of trade-off, I guess. The med won't slow your breathing and it can only improve your bowel function. Wish I could give you the name of the medication.

[Buehlar]

wheelz1967, on Sep 16 2007, 01:06 PM, said:

Rudy, on Sep 16 2007, 02:11 AM, said:

I am having spasms in my intestinal tract, but I am worried medication will slow my breathing or bowels. What is the name of your medication?

It's been awhile since I tried one. It had to be taken under the tongue when the spasms begin. I had my spasms during the night and wasn't about to wake someone to give me the pill. It really dried up my saliva. It's a matter of trade-off, I guess. The med won't slow your breathing and it can only improve your bowel function. Wish I could give you the name of the medication.

Was the med called Nuluv? A blue, minty tasting pill that disolves under your tongue?

[quad]

I had been a quadriplegic for the past five years and I just recently came across the same problem for the past couple months
I haven't been able to get it under control
causes my catheter to leak that's the one thing that gets annoying I haven't been able to figure out how to avoid it
I have taken some things to get rid of the or helped me release them much easier but I haven't had any luck
But I'm thinking one of the reasons why it happens all the time is because I don't have a fixed meal menu I tend to eat whenever I'm hungry
So I'm guessing I need some kind of regulation as far as my schedule but if anyone has any helpful advice please