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Enteric neuropathy prognosis
Dear Doctor, and the community...
I am a 26 year old male in australia, recently engaged to a lovely young lady, and looking to start a family.
BRIEF HISTORY:
For 6 months every day and every hour I have been experiencing continuous 24/7 deep widespread abdominal pain from epigastric to periumbilical region, compeltely independent of food intake, sleep, or bowel use.
Pain score 5-8 with no relief- it does not come and go, and it is *not* crampy in nature. it feels like I have been kicked or winded, like a deep tightness.
It is accompanied by constant unremitting nausea, and diarrhoea. no effect from antibiotics, antiemetics (including ondasetron, mirtazapine, amitripylene up to 75 mg, pregabalin up to 300mg BD, fasting and exclusion diets.
Long story short, following extensive gastrointestinal investigation, including scopes, scans, bloods, allergy testing, neuroendocrine tumor markers, and naturopathic assessment, it is concluded that the problem may be neurological, but I am unable to get an appointment with neurologist until january 15th 2009.
The suggestion was raised with my GP that I may have an "enteric neuropathy"... or degeneration of myenteric plexus in my gut
I am terrified- I understand this kind of disease is difficult to diagnosed, degenerative and progressive with no hope of cure!
Doctor, can you help me understand a bit more about this diease? How common is it? how hard is it to diagnosed? what is the prognosis? what are some potential treatment options?
I can't find any decent information about this disease on the internet except for the wiki entry which sounds chillingly familiar and also fairly dismal!
Kindest regards,
Tim
I am a 26 year old male in australia, recently engaged to a lovely young lady, and looking to start a family.
BRIEF HISTORY:
For 6 months every day and every hour I have been experiencing continuous 24/7 deep widespread abdominal pain from epigastric to periumbilical region, compeltely independent of food intake, sleep, or bowel use.
Pain score 5-8 with no relief- it does not come and go, and it is *not* crampy in nature. it feels like I have been kicked or winded, like a deep tightness.
It is accompanied by constant unremitting nausea, and diarrhoea. no effect from antibiotics, antiemetics (including ondasetron, mirtazapine, amitripylene up to 75 mg, pregabalin up to 300mg BD, fasting and exclusion diets.
Long story short, following extensive gastrointestinal investigation, including scopes, scans, bloods, allergy testing, neuroendocrine tumor markers, and naturopathic assessment, it is concluded that the problem may be neurological, but I am unable to get an appointment with neurologist until january 15th 2009.
The suggestion was raised with my GP that I may have an "enteric neuropathy"... or degeneration of myenteric plexus in my gut
I am terrified- I understand this kind of disease is difficult to diagnosed, degenerative and progressive with no hope of cure!
Doctor, can you help me understand a bit more about this diease? How common is it? how hard is it to diagnosed? what is the prognosis? what are some potential treatment options?
I can't find any decent information about this disease on the internet except for the wiki entry which sounds chillingly familiar and also fairly dismal!
Kindest regards,
Tim
Dear Doctors, thank you for your kind repies.
I appreciate the information, as you know I am unable to get an appointment for 3 months
One last question if I may, I understand the definitive testing for enteric neuropathy can be fairly invasive, eg laparoscopy required for biopsy.
Are their any less invasive tests that could reliably distinguish IBS or Functional abdominal pain, from a degenerative autonomic disease? For example antineuronal antibodies.
For what its worth I do not have 'pseudoobstruction- just constant pain and nausea- am I looking at deveoping pseudoobstruction in the future if I have enteric neuropathy? Will I need TPN in a few years? is it terminal?
Thanks again
Tim
I appreciate the information, as you know I am unable to get an appointment for 3 months
One last question if I may, I understand the definitive testing for enteric neuropathy can be fairly invasive, eg laparoscopy required for biopsy.
Are their any less invasive tests that could reliably distinguish IBS or Functional abdominal pain, from a degenerative autonomic disease? For example antineuronal antibodies.
For what its worth I do not have 'pseudoobstruction- just constant pain and nausea- am I looking at deveoping pseudoobstruction in the future if I have enteric neuropathy? Will I need TPN in a few years? is it terminal?
Thanks again
Tim
Hi Tim,
Thanks for writing back.
The main symptoms of tumors of brain stem are unsteadiness and uncoordinated walk, facial weakness, one sided droopy eyelid, double vision, difficulty in swallowing and vomiting.
I do not think it is a possible cause in your case because the symptoms do not match. I understand your anxiety and would like to advise you to try alternative therapies like acupuncture and acupressure for relief.
Keep us posted!
Thanks for writing back.
The main symptoms of tumors of brain stem are unsteadiness and uncoordinated walk, facial weakness, one sided droopy eyelid, double vision, difficulty in swallowing and vomiting.
I do not think it is a possible cause in your case because the symptoms do not match. I understand your anxiety and would like to advise you to try alternative therapies like acupuncture and acupressure for relief.
Keep us posted!
I will let you know when I have this update.
although I am not sure motility studies are available in australia, I think gettting a definitive diagnosis may be a big battle. I was also concerned that a brainstem tumour could be causing my nausea and dysmotility but this would not explain the pain I assume...
once again thanks and I appreciate your information!
kind regards,
Tim
although I am not sure motility studies are available in australia, I think gettting a definitive diagnosis may be a big battle. I was also concerned that a brainstem tumour could be causing my nausea and dysmotility but this would not explain the pain I assume...
once again thanks and I appreciate your information!
kind regards,
Tim
Hi Tim,
I can understand what you must be going through.
The diagnosis of enteric neuropathy can be made by bowel motility studies as the bowel movement is severely affected in patients with enteropathy. A biopsy of the gut is usually diagnostic as it reveals neuronal degeneration.
Since the abdominal pain is radiating to the back, thoracic nerve root compression is a definite possibility. An X ray or CT scan of spine will help in making the diagnosis of nerve root compression. Please discuss this with your doctor.
Let us know if you need more information.
I can understand what you must be going through.
The diagnosis of enteric neuropathy can be made by bowel motility studies as the bowel movement is severely affected in patients with enteropathy. A biopsy of the gut is usually diagnostic as it reveals neuronal degeneration.
Since the abdominal pain is radiating to the back, thoracic nerve root compression is a definite possibility. An X ray or CT scan of spine will help in making the diagnosis of nerve root compression. Please discuss this with your doctor.
Let us know if you need more information.
Thankyou!
The diagnosis of IBS has certainly been considered, although the pain having no relationship to bowel habit, being constant/unremitting was thought it less likely.
I do not have diabetes, and have trialed pregabalin and amitriptylene each for several weeks at significant doses without effect. As a result life is miserable.
Is this still consistent with enteric neuropathy? is there anythign else I can try? Is a biopsy required for diagnosis?
The other thought was that thoracic spine lesion might be pressing on a nerve root- since my pain is not being centreally blocked and it radiates to the back- could this also be possible?
once again, many thanks
The diagnosis of IBS has certainly been considered, although the pain having no relationship to bowel habit, being constant/unremitting was thought it less likely.
I do not have diabetes, and have trialed pregabalin and amitriptylene each for several weeks at significant doses without effect. As a result life is miserable.
Is this still consistent with enteric neuropathy? is there anythign else I can try? Is a biopsy required for diagnosis?
The other thought was that thoracic spine lesion might be pressing on a nerve root- since my pain is not being centreally blocked and it radiates to the back- could this also be possible?
once again, many thanks
Hi,
I would still say IBS is a possibility in your case since you have chronic diarrhea along with enteric plexopathy.
Also wanted to check with you if you suffer from diabetes? Diabetes can cause enteric neuropathy. Enetropathy due to diabetes causes severe abdominal pain. The treatment of enteropathy is by pain medications and antidepressants like Amitriptyline. I am sorry I checked on the net but could not find the exact incidence of this condition, as it is important to identify the cause first.
I would still say IBS is a possibility in your case since you have chronic diarrhea along with enteric plexopathy.
Also wanted to check with you if you suffer from diabetes? Diabetes can cause enteric neuropathy. Enetropathy due to diabetes causes severe abdominal pain. The treatment of enteropathy is by pain medications and antidepressants like Amitriptyline. I am sorry I checked on the net but could not find the exact incidence of this condition, as it is important to identify the cause first.
2 Comments
Hello, Doctor. It's been years since you posted this, but my son is 29, is Type 1, and has this exact problem. We can't find a doctor who knows what to do about it. He's been going to a gastro doctor, but they seem to be at the end of what they know to do. He has been experiencing chronic diarrhea and pain for more than a year now, and he is miserable. What do you recommend?
Hello, Doctor. It's been years since you posted this, but my son is 29, is Type 1, and has this exact problem. We can't find a doctor who knows what to do about it. He's been going to a gastro doctor, but they seem to be at the end of what they know to do. He has been experiencing chronic diarrhea and pain for more than a year now, and he is miserable. What do you recommend?
Thankyou for your prompt reply.
I havd IBS and tests for IBD are pending but that aprticular diagnosis seems unlikely. Celiac disease and B12 also test normal.
I have chronic diarrhoea not constipation- and certainly severe pain which is constant in the region of my bowel, and as mentioned, completely unrelated to the normal physiology of the bowel, which has lead us to conclude that neurogenic causes are more liikely.
are there any other specific features to enteric neuropathy are are more diagnostic? is it fatal? when you say it is rare are we talking 10 reported caes in the literature... or something more common say 1 in 100 000?
I very much appreciate your help.
Tim
In addition I have not lost weight over the past 6 months
I havd IBS and tests for IBD are pending but that aprticular diagnosis seems unlikely. Celiac disease and B12 also test normal.
I have chronic diarrhoea not constipation- and certainly severe pain which is constant in the region of my bowel, and as mentioned, completely unrelated to the normal physiology of the bowel, which has lead us to conclude that neurogenic causes are more liikely.
are there any other specific features to enteric neuropathy are are more diagnostic? is it fatal? when you say it is rare are we talking 10 reported caes in the literature... or something more common say 1 in 100 000?
I very much appreciate your help.
Tim
In addition I have not lost weight over the past 6 months
Hi,
Thanks for writing in.
Enteric neuropathies are disorders of the neurons of myentric plexus. This disorder is usually associated with irritable bowel syndrome or chronic constipation. It is a degenerative condition with no known cure. However medications are available for the management of symptoms.
Do you have any other associated condition like inflammatory bowel disease or IBS?
There is very little information about this condition as it is quite rare.
Thanks for writing in.
Enteric neuropathies are disorders of the neurons of myentric plexus. This disorder is usually associated with irritable bowel syndrome or chronic constipation. It is a degenerative condition with no known cure. However medications are available for the management of symptoms.
Do you have any other associated condition like inflammatory bowel disease or IBS?
There is very little information about this condition as it is quite rare.
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