gastroparesis

[kathyl]

I have had Sjogren's syndrome for some time with neuropathy, pleuritic chest pain, lots of other pain.  Then I lost 30 pounds and just found out I have gastroparesis.  Had to eat a radioactive egg and lie under a machine for 1 1/2 hours for that diagnosis.  Is this common?  I feel like throwing up when I eat.  Every time I think I am taking the right medications and doing well, something else happens.  I had never heard of this problem.  I am supposed to eat 6 small meals a day.  I don't even want to eat one.  The doctor did not recommend taking the medications available for this problem due to the side effects.  What do other people eat who have this problem?
KL

[Torsornin]

I know they give my patients reglan - but that isnt always good long term and does have side effects - small meals of easily digested stuff like mashed potatoes and mac and cheese possibly? perhaps you might want to consult a nutritionist possibly consider some protein shakes or something? sorry bout your luck

[Linda196]

Gastroparesis is much more common in Diabetics, and you might be able to find more information is you use diabetic gastroparesis as a search, or look in diabetes support groups and forums.

In addition to Reglan (aka Maxaran) there is a drug called Domperidone, both are called prokenetics. Bonus with Reglan, is it also treats nausea, but if you can manage without medications, it's probably best, because of the possible long term effects. 

Small meals made up of low fiber/low residue (fat) foods, and liquid meal replacements are a good way to maintain adequate nutrition when you really don't feel like eating. Mayo Clinic has a very comprehensive treatment program and some very good hints for diet http://www.mayoclinic.com/health/gastroparesis/DS00612/DSECTION=treatments-and-drugs

[rnathans]

I had severe gastroparesis which improved greatly by treating the underlying autoimmune process with IV cytoxan. Domperidone is also helpful- without the side effects of reglan, is not available in the US but can be obtained from Canada or on-line thru a site in NewZealand. You should be followed by a gastroenterologist who is knowledgeable about gastroparesis.

There is an on-line gastroparesis support group. Try a web search, also try G-Pact. Sorry I don't have the links anymore as I am so much better.They would also have the links to get domperidone.

Ruth

[Leisa]

Hi Kathy! I'm a newbie here too and just finding out all the problems i have concerning Sjogren's. I too have lost 42 lbs since the last year, 30 rapidly. I have a very difficult time eating and have no appetite for the most part. I have to make myself eat something. I just went through 3 days without eating! I find eating softer foods go down easier. Try yo-plus for digestive health, i add fresh blueberries to that. I eat bananas and oranges too. I try to eat cheerios and cottage cheese with cherry tomatoes. I know it's difficult to make yourself eat somedays but i find these foods a little easier to swallow and digest. I hope you find this helpful dear. You have found a wonderful, caring and helpful sight here. Let us know how you are doing. Good luck and take care. Leisa

[kathyl]

Thank you for the suggestions and support.  I did find a diet on-line.  I see a gastroenterologist who diagnosed the problem.  He is very good.  Except that he told me to look up the diet on-line.  I thought he should have given me one.  The diet has been helpful, also smaller meals.  But I lost two more pounds and have been feeling faint lately.  This morning I leaned over to pull a weed and stood back up and fainted and fell onto my right side.  I really hurt my ribs.  I made an appointment to see the doctor again.  I can empathize with you Leisa, I would rather not eat than eat.  When I eat I feel sick.  One thing the diet said to do which is helpful is to drink Gatorade all day.  I get some calories from it and it does not make me feel sick.  Leisa, have you seen a doctor about the weight loss?  That is a lot of weight to lose. 

[Chickpea]

Kathy - I'm really sorry to hear that you fainted and hurt yourself.  I hope you're feeling better today.

I know exactly what you and Leisa mean when you say 'I would rather not eat than eat'.  How long have you both been like this?  I've never been a great eater but I usually managed a pretty varied diet.  Over the past 5 weeks I've found it almost impossible to eat:  I feel full all the time, and nauseous.  Anything I do eat seems to sit in my stomach for hours and then rampages through my gut!  Not a pretty image - sorry!! 

Do you all think gastroparesis is an aspect of central nervous system involvement?  Do you all have other SjS cns issues?

Linda - thanks for the link.  I looked at the dietary advice and it's all pretty straightforward, but they don't explain how you're supposed to make yourself eat!

Thanks to all for the advice and suggestions - Chickpea

[Leisa]

Hi again! I hope your feeling better! When i saw the rheumey the first time he said the rapid weight lose was from the onset of R.A. I think i continue to lose because of not feeling hungry especially when i have a flare. This last flare lasted almost 3 months and i lost an additional 9 lbs!! The flare has calmed and now i can eat better and now i have gained most of the 9lbs back. It's amazing though that i can go shop for clothes, buy something that fits but by the time i go to wear it, it doesn't fit!!! Always too big....strange and frustrating!! I think the stores are going to put me on a list for taking back so many things...lol.
Digestion starts in the mouth and i have no saliva!!! So i find it very difficult to eat alot of foods especially meats. I try small bites but it seems to get stuck in my throat as with a lot of other foods...ugh therefore i stick with the softer foods and fruits.
I don't understand it all...i just get frustrated! My body just freaks over weather changes and my poor hubby never knows how to set temps in the house or the car, he just lets me do the adjusting on the thermometers...lol. Poor thing he has been so supportive. He tries to understand but like me he gets a little frustrated too somedays. How can you understand such a weird ongoing disease?
I hope you find this sight helpful, i know i have. I don't feel so weird when i come here!

[hoping]

Also had a rapid 30 lb wt. loss followed by 20 more lb.s  Even after 50lb. wt. loss GP seemed rather unfazed.  This was a bit of a red flag to rheumy though.  I can be regular for a week and then go 4 times in one day followed by little or nothing the next few days.  I use stool softeners, occas. Miralax.  Gastro Dr. wants to try Reglan, but not sure about adding on another med.  Am on Nexium now.  I do eat though feel bloated after and deal with reflux constantly.  Reglan can cause spasms which I already have so concerned about that.  Also have neuro sx's from SjS.

Karin

[kathyl]

Hi Chickpea and others,
In answer to your question, Yes I have a lot of nervous system involvement including seizures that are controlled on medication and neuropathy that is also controlled mainly by medication.  The doctors say that the gastroparesis is nerve damage too.  Right now I am at home for the summer and practicing eating small amounts frequently.  I did not break a rib, fortunately.  I have managed to gain a pound this week.  I know what it feels like to buy clothes and then have them not fit in a week or two.  I went from a size 12 to a size 4.  I had clothes altered and everything.  I put them in the dryer on high to shrink them. 
I was really surprised that the gastroenterologist found something wrong.  I thought they would just tell me to drink Ensure or something.  I had come to terms with the fact that I was not going to get better.  That I would always be on these medications and not be able to remember things.  That I would always be extremely photosensitive (I bought a telescope), that I would tire easily and require a nap almost every day. That I would never be able to meet my goal of hiking the Grand Canyon. But I am having a hard time dealing with the fact that I can still get worse.  That new symptoms can occur and I have to learn to live with another problem. 
KL

[kathyl]

Urgent Care just called and I did break a rib.  Does anyone else faint from low blood pressure.  This is scaring me.  I could really hurt myself.  I did really hurt myself.  This will take six weeks to heal and there goes the summer vacation.  Does anyone do anything to raise their blood pressure? 
KL

[Leisa]

Kathy, i am so sorry you broke your rib! I know how painful that can be, i fell out of the shower once!
I know it gets so scary! You become afraid to try certain things let alone new things! I get really unsteady on my feet most days(not sure if mine is B/P issue though). Do you try to walk short distances with anyone? This may help your B/P get better??? The times when i'm not having a flare i try to increase my movements, taking small walks a couple times a day and up and down the steps more. Do try to have a companion with you as last night i went for a short walk and almost fell because of a crack in the walk!!! Between my hubby and a tree, i was spared!! lol. SOmetimes we just have to laugh at ourselves!!!
I hope you feel better soon and get your B/P in check. Let me know how your doing. Oh and i do have major bowel and bladder problems.....somedays i give up on docs trying to fiqure this out!

[anita]

Hello, First time to post anything on any forum.  I have learned a few things from years of neurological complications of Sjogren's.  I've had gastroparesis for years and take Domperidone from Canada.  It helps, but also good idea to start a mechanical soft diet...in others words, grind up the food.  My GI doc at Johns Hopkins says it helps in digestion by aiding in the process that the stomach can't do any more...breaking down food.  it also helps to maintain weight since more food is digested instead of just sitting in the stomach.

Also saw a comment about low blood pressure.  This is from autonomic dysfunction an can be helped with Midodrine and Florinef...also increase salt intake and water.

[Scottietottie]

Hi Anita 

A warm welcome to Sjogren's world. I hope you find the site useful.

Take care - Scottie 

[Linda196]

Hello and welcome Anita.

It seems you have had lots of experience with some of these issues. I'm glad you've found a routine that helps.

Low blood pressure can be caused by a number of things other than autonomic dysfunction, and before increasing salt and water, especially without a doctor's supervision, all other possible causes should be ruled out, especially heart, kidney or adrenal problems. http://www.medicinenet.com/low_blood_pressure/article.htm

If the drop in BP occurs only on standing quickly, it's more likely orthostatic hypotension; autonomic dysfunction tends to cause a drop in BP after standing for some time. Both are forms of postural hypotension, and both respond to the drugs and treatments that Anita mentioned, but the Midodrine, while helpful with standing BP, also causes increased BP when lying down. One of the drugs used to treat Myasthenia Gravis, pyridostigmine, has been found to be helpful in increasing standing BP but not supine BP.