Constant Abdominal Pain!

[mrsdavidson8605]

I have had abdominal pain for 3 weeks straight now! Just came out of nowhere! I was hospitalized 2 weeks ago and they ran a bunch of tests but never found anything. Been taking all sorts of different meds to try to attack the pain but nothing helps. I know there are relationships between pots and abdominal pain but I need to be more educated on what it could be. ANy info is helpful. thanks.

[juliegee]

I have had abdominal pain for 3 weeks straight now! Just came out of nowhere! I was hospitalized 2 weeks ago and they ran a bunch of tests but never found anything. Been taking all sorts of different meds to try to attack the pain but nothing helps. I know there are relationships between pots and abdominal pain but I need to be more educated on what it could be. ANy info is helpful. thanks.

How's your appetite? Any nausea? Bowel changes? Weight loss? I have a few ideas, but need more info.

Lots of dysautonomia patients have slowed digestion that CAN cause severe visceral pain. You'd have other symptoms like nausea after eating, etc.

Julie

[mrsdavidson8605]

I have had constipation. Had some nausia at first but it is gone. I don't have much of an appetite because everytime I eat my stomach cramps up like crazy. HAd a little bit of diahreah but mostly constipated. They have been treating me for IBS but none of the drugs have helped and now they are telling me to just wait until my colonoscopy on August 6th! Can't deal with the pain that long!

[futurehope]

Kansasgirl8605,

I lived through a bout of what you are describing when I was in high school. Anything in my mouth would trigger spasms so bad that I would double over.. I had mucous colitis and diarrhea to begin with, then the cramps, which lasted for months.

I really have no idea what I had, or what you have. I got so thin from not eating. It was extremely difficult.

Maybe you could tell your doctor of your current difficulties, and have them reschedule you?

[juliegee]

I have had constipation. Had some nausia at first but it is gone. I don't have much of an appetite because everytime I eat my stomach cramps up like crazy. HAd a little bit of diahreah but mostly constipated. They have been treating me for IBS but none of the drugs have helped and now they are telling me to just wait until my colonoscopy on August 6th! Can't deal with the pain that long!

Sounds awful- I'm sorry

The constipation goes along with slowed digestion. MANY of us experience that. Are you treating it? Miralax seems to work the best on a long term basis. The trick is to use it regularly. If your digestion is slowed at ANY point (including the colon) everything backs up and the nausea, cramping and pain can occur. I use about 2.5 doses of Miralax daily, taken all at once every night. It doesn't cause a violent reaction the next AM. It just makes me feel normal. It sometimes makes me a little nauseous to take such a large dose. I use a 1/4 to 1/2 of phenergan to deal with that.

Your cramping & intermittent diarrhea are also somewhat indicative of a small intestinal bacterial overgrowth (SIBO). This, too, goes hand-in-hand with slowed digestion. The food hangs around too long in the small bowel and bad bacteria grows and takes over the good bacteria. A balance of both is necessary for digestion. My son and I take Culturelle (a probiotic) daily to add more good bacteria in our GI tracts. That's another simple OTC trick you could try as you wait for your colonoscopy.

Slowed digestion was my son's first symptom of dysautonomia. I learned a lot from a Yahoo Gastroparesis forum in my attempt to help him. Ultimately Johns Hopkins docs found that it was caused by an autonomic dysfunction. Lots and lots of folks on that forum had slow stomaches, small bowels, and colons (any & all combinations) and experienced severe and chronic pain. THAT's what led me to suspect you may be dealing with slowed digestion.

Many need to use a GI prokinetic to help speed the GI tract. The 2 that are considered to be the safest & best are a low pediatric dose of liquid erythromycin (sweet pink stuff) taken 15-20 mins before meals OR domperidone (easily available via computer from overseas.)

Best of luck figuring things out. The Miralax and probiotics are something you can safely start on your own to improve your GI health as you wait for the docs to help.

Hugs-

Julie

[mrsdavidson8605]

Thanks so much for the info. I will try the Miralax tonight. I actually have some bc I give it to my daughter for irregularity. Will also get some culturelle and see if that helps..

[juliegee]

I had a few other ideas about diet. Like you, my son's diet was sooooo limited when this struck that we tried smoothies and canned supplemental drinks to get ANY calories in him. From his Hopkins docs, we learned that folks with dysautonomia, that experience slowed digestion, should avoid dairy. We were shocked by how much that helped. Also stick to low fat, low fiber: white bread, pasta, rice, lean chicken, turkey, fish, cooked mushy vegs, and pureed fruits. My son uses Rice Dream (as a milk substitute) & often mixes frozen fruit for a healthy smoothie.

Hope you feel better soon-

Julie

[Christy_D]

My son's dysautonomia started with GI symptoms. He would curl in a ball from abdominal pain. He was diagnosed with gastroparesis and takes the Miralax daily. Since starting on doxepin and erthromycin(sp?) his abdominal pain is under control. He still has nausea, but they have determined that is a neurological problem.

They have also discovered he has small fiber neuropathy on his torso. He does not sweat anywhere in the abdominal region, plus, he doesn't have any reflex movement on the right side of abdomin. He can't stand any heat what so ever on his stomach, even sunlight through a car window hurts him.

[potsgirl]

So sorry you're suffering through this....I've had chronic constipation for many years, and a doctor in the ER told me to try 'Senna' tablets. That's generic for 'Senobkot', much cheaper, and you can find the generic at Target or Wal-Mart. I take two in the morning and two at night and am able to go every day, easily. It's terrific. I've been relying on them for about 4 years now, and my gastro and other doctors tell me it's safe to stay on it. I do need to do a colonoscopy soon, too, but I can't seem to drink the gallon of fluid that's necessary!

Good luck, and let us know what works.

[juliegee]

So sorry you're suffering through this....I've had chronic constipation for many years, and a doctor in the ER told me to try 'Senna' tablets. That's generic for 'Senobkot', much cheaper, and you can find the generic at Target or Wal-Mart. I take two in the morning and two at night and am able to go every day, easily. It's terrific. I've been relying on them for about 4 years now, and my gastro and other doctors tell me it's safe to stay on it. I do need to do a colonoscopy soon, too, but I can't seem to drink the gallon of fluid that's necessary!

Good luck, and let us know what works.

Jana-

I couldn't drink the gallon either & ended up puking trying. For my last one, I did a "Half-Lytley" prep where I had to drink a half gallon- basically 4 large glasses- so much easier!!! I didn't chug-a-lug as direction dictated; instead, I drank leisurely while walking slowly on a treadmill. That movement helped it go down.

There is even a smaller prep now, where you just drink a few ounces. It's pretty vile and you have to follow it with plenty of liquid anyways. It gave my son & mother extremely tachy One last thought, there is a pill prep now. I think you have to take over 20 large pills with quite a bit of liquid- sounded really hard on the esophagus to me.... For me, the half-lytley is the way to go .

KansasGirl-

With the Miralax, it takes a while (day or two) for it to kick in. The key to using it for motility is to find the dosage that does the trick & use it religiously. I become very sick for weeks if I even skip a day. One day's food of back-up is all it takes.

All the best-

Julie

[Christy_D]

My son had a colonscopy, and didn't have to drink a gallon of water? He had one the same day they did an endoscopy, all he had to do was clean out the day before.

[juliegee]

My son had a colonscopy, and didn't have to drink a gallon of water? He had one the same day they did an endoscopy, all he had to do was clean out the day before.

What prep did he use the day before?

My son had the same deal, endoscopy, colonoscopy & antroduodenal manometry the same day....then a TTT while the manometry probes were still in place .

Julie

[comfortzone]

This may sound quirky but I'll mention it just the same.... ( I have the gut issues as well - since mid 20's - extensive diverticulosis throughout, chronic constipation - now worsened with chronic pain med regimen, very acidy stomach now on Nexium twice a day...esophageal spasms)

But anyway there is a product on the market that some of my caregivers in my area recommend that's over the counter Natural Calm or Peter Gillham's Natural Vitality Natural Calm or just calm. It states it's a relaxing magnesium supplement. It is a white powder in a cannister - you stir from 1 to 3 teaspoons into water and drink. Hot water and you drink it like a tea -- but it is very effervescent so use a large cup or mug -- Or you can mix it in cold water and it won't fizz too much at all.

If you go to Amazon. com you can purchase it -- or your local health food store if it's a good one will have it. If you look at the different flavors and varieties (some have added calcium etc.) you'll see that the consumer reviews are outstanding on each and every one of the varieties.

People report help with back and disc troubles, menstrual troubles, menopause symptoms, mom's giving to children for constipation, chronic severe constipation for adults ~ insomnia, nervousness, muscle and joint issues -- you get the idea....

Anyway it's healthful, organic, comes in different flavors - is labeled The Anti-Stress Drink balancing calcium intake and restoring healthy magnesium levels.......

For me it's helped with sleep - not 100% but sometimes it amazes me -- I'm one who can stay up with no sleep all night -- like my engine just will not shut down - this helps.... And also for constipation. I think of it as a milk of magnesia lite... I take the max dose 3 tsp. and the next day I get relief....

So for what it's worth -- you may want to check it out on Amazon for the reviews -- I just bought it because my occupational therapist said it was amazing how helping magnesium levels makes people feel so much better all around....(I pay about $16.00 for a 16 oz canister locally)

Blessings......

[nmorgen]

Hi,

I just wanted to add that I add severe abdominal pain when I was diagnosed with celiac. I hope you feel better.

[Christy_D]

My son had a colonscopy, and didn't have to drink a gallon of water? He had one the same day they did an endoscopy, all he had to do was clean out the day before.

What prep did he use the day before?

My son had the same deal, endoscopy, colonoscopy & antroduodenal manometry the same day....then a TTT while the manometry probes were still in place .

Julie

He had to do several doses of miralax, over like a 2 hour period, plus ducolax(sp?). So, yeah, I guess he drank a gallon of water, but over like a 2 hour period.

Wow, sounds like your son had a fun filled day(ha). My son, Cody had all those tests, but not on the same day, or visit. Plus his probes came out, so he had to stay an extra day to redo it. He was complaining about being tired of being a lab rat!

[janiedelite]

One of my first symptoms with POTS was nausea and I've always had some degree of abdominal pain. I echo Max Mom's suggestions. I was at Mayo and did GI motility testing. The first week showed an intensely slow small bowel, and borderline slow colon. The second week they did further tests, and my motility was normal. Why I mention this is that just because some tests are normal, it doesn't mean there isn't a problem. Just the pain should be enough of a reason for testing.

Have you noticed if certain foods make it worse? Have you tried a liquid diet and does that help? If so, you could also have dysmotility and might benefit from a gastroparesis diet (low in fat and fiber, which slow digestion for those of us with special guts). And I read recently about a research center who is doing GI testing while the POTS patients are on the tilt table. They notice that POTS patients tend to have decreased motility when upright (opposite from normal patients, who have increased motility when upright). When I was really sick with POTS, I could only eat lying down or reclined or else I'd have much worse nausea and pain.

Best wishes that you find some relief.

[bruc]

25 years of constant severe debilitating abdominal pain.

Im also diagnosed with esophageal dysmotility and myopathy, small bowel dysmotility via manometry, severe colonic inertia, dysphagia.

Being treated for extensive SIBO which will be a lifelong re-occurring struggle. Keeping my bowels moving as best as possible with 17grams of Nulytely daily more as needed. They also have me on doxepin.

My neurologist has diagnosed dysautonomia of unknown form and attributes the GI dysmotilities to this.

GI specialist doesnt support a neuropathy cause due to antroduodenal manometry findings suggestive of myopathy.

My clinical and diganostic presentation are atypical, a hybrid.

Very confusing picture.

To date, 25 years later, I cant find any relief from this abdominal pain 8+ constantly and peaking very often.

How is dysautonomia causing this visceral pain?

Would diet help alleviate this pain?

Open to any suggestions.

[stacdliw]

I have just endured a year long bout with what I thought was gall bladder pain in my upper right quadrant. Had all the tests and they all came back normal. The pain has increased in frequency and severity and when the HIDA Scan came back normal, my GI said it was due to the Autonomic Neuropathy. My neurologist at Vandy confirmed that it probably was AN causing the problem. The pain now has gotten to the point that it occurs daily generally after my first meal, something as simple as a piece of toast. After a regiment of erythromycin for a week and three days of a liquid diet with little change in my pain, I've now been referred to a pain specialist. The doctors don't know if the pain will ever go away or just wax and wane like other dysautonomia symptoms do.

So yes, AN can cause pain in the abdominal region with no explainable reason. If your pain is due to constipation, I agree with others who recommend Miralax. I was so constipated once that when my GI ordered a test requiring a colon cleanse, the cleanse did not move my bowels! Nothing! Constipation can cause horrible and excruiating pain! My GI told me that I could safely use up to 3 doses of Miralax in one day for the rest of my life. Now,Miralax is definitely my friend!

I have had gastroparesis and small bowel dsymotility for over 6 years; however, I am just now undergoing treatment for Small Intestine Bacterial Overgrowth. Talking about a very uncomfortable condition! I never had trouble with this problem before until the abdominal pain problem became quite severe. I know my digestion must be significantly slowered, but I'm not very nauseous-- weird!

I hope you find relief from your pain soon.

Bev Ray

[Kyler]

My son got worse suddenly last year with really bad abd. pn. and nausea every time he tried to eat. He lost 5 lbs. in 2 weeks and couldn't even eat his own BD cake because he felt so bad. His POTS doctor said that most POTS related GI issues are from poor or disrupted (like when you stand up) blood flow to the GI tract. He increased his Midodrine dose from 10mg every 3 hours to 10mg every 2 hours and it fixed it instantly the next day. The crazy thing is that he went from having a BM 5 times a day to being constipated the next day as well so now he takes colace but that's better than having abd. pain and nausea. It also helps when he eats with his feet up. Apparently the intestines require A LOT of blood whenever they want it in order to work properly-so selfish. His doctor feels that the symptoms are POTS related so he doesn't do all of that extra testing because he knows what the results will be from his extensive experience. So far he has been right and Kyler hasn't had to endure any invasive testing at all. Best Wishes in feeling better.

Serena

[PetuniasMom]

My son got worse suddenly last year with really bad abd. pn. and nausea every time he tried to eat. He lost 5 lbs. in 2 weeks and couldn't even eat his own BD cake because he felt so bad. His POTS doctor said that most POTS related GI issues are from poor or disrupted (like when you stand up) blood flow to the GI tract. He increased his Midodrine dose from 10mg every 3 hours to 10mg every 2 hours and it fixed it instantly the next day. The crazy thing is that he went from having a BM 5 times a day to being constipated the next day as well so now he takes colace but that's better than having abd. pain and nausea. It also helps when he eats with his feet up. Apparently the intestines require A LOT of blood whenever they want it in order to work properly-so selfish. His doctor feels that the symptoms are POTS related so he doesn't do all of that extra testing because he knows what the results will be from his extensive experience. So far he has been right and Kyler hasn't had to endure any invasive testing at all. Best Wishes in feeling better.

Serena

I noticed your post was at the end of March, and I was wondering if you would mind if I ask how your son is doing now, and if the larger doses of Midodrine is still controlling the tummy pain? My daughter is in constant pain that increases and decreases but never goes away, as well as feeling nauseous 24/7. We are waiting months probably for our first consult with an autonomic clinic, and I am just looking for anything that might help....

[Kyler]

That happened last March and he has been on that regimen for over a year now and it is working very well. Kyer's doctor said that he has apatient that takes it every hour in order to funtion. Kyler still has intermittant nausea but mostly only in the am when he needs to eat. He still has abdominal pain every time he tries to eat a large meal - as a teenage boy that is almost every day. The pain is not severe and it goes away when he sits still in a recliner. After 2 years of his diagnosis he has not had any tests other than a TTT and an abbreviated autonomic lab test that was completely non invasive - he has not even has a blood test from his POTS doctor. He has no signs or symptoms of anything like EDS or anything as well as no family history. I used to wonder if there was any other causative factor after all of the research that I did but now I realize that there is not any - it's the classic presentation of POTS and there is no need to do testing to show that the blood flow in his body is all jacked up and that causes malfunction of all of the other body systems. The brain, the gut, and the skin all fight for blood and oxygen and the brain always wins then the gut gets the leftovers and Kyler always looks like a ghost because his skin always looses. His muscles ache because they don't get the blood flow that they need and that causes fibro like symptoms and the exhaustion comes from the ever present battle to normalize the body and the body always loses because the auto pilot is broken. Kyler's doctor does not typically diagnose POTS pt.s as having FM, CFS, IBS or any other related illness because he has learned from many years of experience that it is almost all caused by the effects of POTS even though the symptoms seem like other illnesses. He must be onto something because people come from other countries just to see him. He has fixed the majority of Kyler's symptoms just with POTS treatments and without involving any other type of doctor (other than his PCP). Sorry for the tangent but I feel bad for people that get every test in the book and get no relief. I hope that this helps.

Serena

[Lovebug]

I have had abdominal pain for 3 weeks straight now! Just came out of nowhere! I was hospitalized 2 weeks ago and they ran a bunch of tests but never found anything. Been taking all sorts of different meds to try to attack the pain but nothing helps. I know there are relationships between pots and abdominal pain but I need to be more educated on what it could be. ANy info is helpful. thanks.

YES! I've had abdominal pain for the longest time, like years. But most recently I had it constantly for about a year. Like you, I was tested and diagnosed with IBS (which I already had). Do you have any symptoms that accompany it such as diarrhea, nausea, vomitting, weight loss? I lost a bunch of weight and would get low potassium when I had bouts of diarrhea. My Dys doctor put me on Celexa (SSRI) and it helped. After about a month the pain started creeping back so I upped my Celexa and I've been doing so much better since November. Maybe talk with your doctor about trying that....start SLOWLY!!!

[4arrynp]

M

My son was just diagnosed with dysautonomia and he was boderline for POTS (he is 12).  It all started with unbelievable abdominal pain and severe constipation.  Anyway 18 months at Stanford with no diagnosis we then went to Mayo and go the diagnosis.  He is doing great on the fatigue part with salt and water and exercise.  But the abdominal pain is still bad even though we have solved the constipation with Sena and dulclax.  I am wondering if anyone has had help with the abdominal pain through medication or other strategies.  The pain dr recommended Zoloft but we haven’t tried it yet.  My son doesn’t feel sick but just the stabbing pain.

[Guest KiminOrlando]

@4arrynp Did they test him for gastroparesis? 

I'm sorry this has happened to your son. Mine started when I was 13. I'm 48 now. I have gastroparesis, so that is what causes my pain. Did Mayo run tests on your son's digestive tract? 

Kim

[yogini]

32 minutes ago, 4arrynp said:

M

My son was just diagnosed with dysautonomia and he was boderline for POTS (he is 12).  It all started with unbelievable abdominal pain and severe constipation.  Anyway 18 months at Stanford with no diagnosis we then went to Mayo and go the diagnosis.  He is doing great on the fatigue part with salt and water and exercise.  But the abdominal pain is still bad even though we have solved the constipation with Sena and dulclax.  I am wondering if anyone has had help with the abdominal pain through medication or other strategies.  The pain dr recommended Zoloft but we haven’t tried it yet.  My son doesn’t feel sick but just the stabbing pain.

Hi I would start a brand new post on this topic as many people might miss your question. Stabbing pain isn’t a common symptom of Dysautonomia itself. I’m guessing your son has a separate digestive Co-condition which isn’t unusual for Dysautonomia.  I would get a full workup with a gastro and try to treat that separately.

Edited August 1, 2018 by yogini