Chronic Intestinal Pseudo-obstruction/gastroparesis

[jlmahon]

I've been dealing with gastroparesis for a few years now with an exacerbation in symptoms over the last three months or so. I've suspected a problem with colon motility for a while and today that was confirmed, as I was told I have a condition called pseudo-obstruction, which basically means the intestines are working very slowly. I'm told both the gastroparesis and the pseudo-obstruction are most likely due to the autonomic dysfunction, which we still don't know the cause (autoimmune??). I've been on epogen injections for low bp and fatigue for aboat 5 months now and am doing extremely well as far as energy and bp related problems. I wish I could get my digestive system under control. I've lost 18 pounds and am having problems keeping my potassium levels in check. Domperidone helps some but I'm still only getting about 800 calories a day. Anyone here have similar issues and take meds that help?

[Rachel]

Hi Hanna,

I don't have any answers or help for you. I wish I did.

I do have a couple of questions, though. How were you diagnosed with the pseudo obstruction? Did you have a colonoscopy?

For years motility has been slow for me, but I've had a lot of problems in the past few months. But I don't have any symptoms like gas or cramping that would indicate something like IBS. I talked to my doctor about it and he told me that the slow, almost non-existent, motility is due to autonomic dysfunction. Things have gotten so bad in the past two months that I'm now taking colace and senakot every day. Do you have to do this too? Or is there something that helps more with motility?

Rachel

[juliegee]

Hi Hanna-

Sorry you are dealing with such severe tummy troubles. My son and I (to a lesser extent) have had motility problems related to our dysautonomia. Like Rachel, I'm curious about HOW you got the DX of pseudo-obstruction. My son had a test called an antroduodenal manometry. It showed nerve damage in his small intestine and several 3 hour periods in which the food in his GI tract moved in the wrong direction.

My son takes eyrthromycin to help with his motility. (I also took it for a while after I had my gallbladder removed- my motility was impaired for a 6 month period.) It really helped us. It caused that chronically nausous feeling to be replaced with actual H-U-N-G-E-R! How much domperidone are you taking? I know many have good luck with it.

Are you experiencing lots of nausea? Do you take something for that? How about constipation? I had great luck with Miralax. Once I got my bowels moving, it helped to empty my tum, too.

I wish I had more information...I found great support and information with all of our GI woes from the Yahoo International Gastroparesis Group. Check them out.

My motility problems have spontaneously improved. I pray yours will, too.

Julie

[jlmahon]

Rachel & Julie,

I had a colonic transit study & manometry study done which showed a problem with motility. I've had past x-rays done which showed dilated bowel loops which indicates obstruction, but I had no mechanical obstruction - therefore condition called pseudo-obstruction. I do take miralax 2x per day but sometimes it makes me too full and nauseaus. Domperidone usually helps with the stomach motility but not the constipation part. I wish zelnorm wouldn't have been taken off the market as that did seem to help. I know there are other drugs used off-label for motility issues (tried erythromycin) and I'm trying to find some possibilities.

[juliegee]

Hi Hanna-

I have had the same problem with Miralax. At times, it makes me so full and nauseous that I can't get it down. My GI has recommended a tiny dose of Erythromycin, 1/4 to a 1/2 tsp, prior to my Miralax. I take a little over 3 doses (17 grams each) at one time in one glass. I mix it with something yummy, like pomegranate juice (just an ounce or two) and I stir it really well and add sparkling water to the top of the glass. I pop in a straw and slowly sip it until it's gone. I imagine it's a "treat" as opposed to a med- that seems to help. Talk with your GI and see if you can't take a dose of domp or "E" prior to your Miralax. My GI recommends MOM (as much as it takes) every 3 days if the Miralax isn't doing the trick. The tummy can't empty if it reaches a dam downstream.

It sounds like you've been through lots of testing. It's good to know exactly what you have, but then so frustrating when the doctors have so little to offer to help. Please do check out the International Yahoo Gastroparesis site. You will get lots of support and information there.

Hugs-

Julie

[Guest Mary from OH]

Hanna,

My daughter has SEVERE GI problems, 2 of which you've named and many others. She has had a cecostomy for the last 4 years because her dysmotility is so bad.

CIPS is better described as discoordinated nerve problems in the intestines. It's not just slow, sometimes fast and sometimes absent. It is a very complicated disorder to diagnose and treat.

I KWYM about the Zelnorm... It was the last med left for us. My daughter now takes a medicine called Amitiza. I think it helps a little. My daughter has severe dysmotility which resulted in a cecostomy, dysmotility, gastroparesis, hypomotility, visceral hyperalgesia, GERD, redundant colon, mild neuropathy in sm. bowel (aka CIPS), migraines, abnormal lack of contractions while eating, abdominal migraines, frequently prolapsing cecostomy, EKG changes and POTS .

One of the things with my daughter is that we have to keep her GI tract moving because it doesn't do so by itself. Also, since she is unable to poop on her own, we have to irrigate her every night. The Miralax really helps her. You may not be on your ideal dose. She takes 3, 17g doses every day. And is also on 3 other laxatives.

Sometimes, weight loss can be because certain parts of your GI tract are moving too quickly and your body is not able to absorb the appropriate nutrients. It is really a strange balance between too slow and too fast, especially when different parts of the GI tract move at different rates.

Feel free to contact me if I can help.

Hugs and Prayers,

Mary

[Guest Mary from OH]

Hanna,

I also just noticed that you have mitochondrial problems as well. THAT is likely the cause of your weight loss. What meds are you on for that? Mito is also another difficult syndrome to find that right cocktail for.

Are you seeing specialists that are competent in all your problems? You have a combination of things, each which need to be dealt with by a specialist in that area.

Hope this helps.