Over the past 2+ months i've been struggling with increased constipation, abdominal distention, and gastroparesis symptoms.
For a little background, these GI symptoms were some of the first symptoms to appear when I got sick. Over the years they've kinda waxed and waned with all my other Lyme symptoms.
When I first began Lyme treatment these symptoms seemed to improve, they didn't go all the way away but they were tolerable. Since i've started this newer med combo they have flared without relief.
I'm on Rocephin, Actigall, Rifampin, Avelox, Plaquenil, Malarone, Nystatin, VSL #3, S.Boulardii, and supplements. The newbies are Rifampin and Avelox. Last month I pulsed the Avelox. It caused greater GI distress and I felt terrible in general on the days off. This month i've been taking it every day. I feel much better on it but my gut is not happy.
I have seen numerous GI docs, including one of the country's leading researchers on motility problems. I've had extensive testing. In the end I was diagnosed with "severe gastroparesis" and "functional vagal neuropathy" which in my case means that the entire GI tract does not respond to stimuli. It just moves when it wants to and doesn't otherwise.
There is no treatment for this. I've been hoping that by treating the cause (Lyme and Co's) my body will heal itself.
It seems as if my new med combo is helping in general but causing a serious GI flare. I've been dealing with sever constipation, honestly cannot remember how long it has been since my last BM. It's been over 2wks. My abdomen is very distended and firm to touch.
I follow a clean, no added sugar, no refined flour/food diet. Lots of vegs, fruits, whole grains, protein (milk, nuts, chicken, fish). I take tons of mag malate (about 2grams per day), triphala, vit C, digestive enzymes, and probiotics. I'm also taking Miralax (at least 2capfulls per day). At this point when I increase the mag or Miralax I get more urgency and gas(only when on the toilet) and maybe a few drops of liquid stool but that's it.
I've also gained about 20lbs over the past 2months, some of it is probably related to this GI problem. My pants no longer fit and I look pregnant.
Do you all have any suggestions? I'm desperate here. Even considering a liquid diet for a couple days along with some fleets. Not liking that idea though because of blood sugar fluctuations and I have to work on wed.
[ 08-06-2009, 07:17 PM: Message edited by: sammy ]
Posted by LittleLymie19 (Member # 15610) on :
Sammy, my experience is nearly identical to yours!
My very first symptom was severe constipation.
My GI issues are so bad now, there's only a handful of foods that I can eat that don't cause me to become constipated. I haven't been able to tolerate treatment either, because bowel action is such a huge part of getting better and healing from this disease.
I do have some tips and tricks that do help though. You have probably tried them all, but I thought I'd just throw them out there anyway in hopes that just one of them may help you.
I take close to 2,000 mg of magnesium oxide (oxygenated magnesium) and this has been the absolute ONLY thing to EVER get my bowels moving. Prescription laxatives didn't even work.
I also found that cutting out ALL allergens from my diet, especially gluten, helped. I cannot "cheat" or even get a crumb of gluten in my food, or else I become constipated for weeks. It's so crazy...but it's true. It sounds like you're still consuming glutenous grains so you may want to consider going gluten (and dairy!!) free. I can't tell you how much things improved when I went gluten and dairy free. I was only going to the bathroom once a month before I did. It was awful.
I also use Senna and Cascara in "emergencies". When I haven't gone in a week, I break out the Senna and Cascara bottles and take them together. They're not very gentle though, and they do cause cramping (if they work, that is), so I don't use them very often. But with our issues, sometimes things like that don't even work..
I'll try to think on it for a little while and come back with more suggestions. I've got a high fever right now and it's really hard to think through it.
I hope you find some relief soon!
Posted by randibear (Member # 11290) on :
my gi doctor recommended "dulcolax" when it gets so bad.
drink plenty of water. it's very gentle and it does work!!!
Posted by Sparrow (Member # 11734) on :
Try castor oil. It has to be pure--no additives.
You can start off with a tablespoon and work up from there. You may have to continually increase the dose as your body adjusts to it.
Posted by glm1111 (Member # 16556) on :
Have you treated for parasites and worms? They play a MAJOR role in Lyme disease. Check out
Little, i'm so sorry to hear that you are dealing with this too. I've tried the elimination diet and avoided gluten and dairy for about a year when I first got sick. I gradually added them back in(under the watchful eye of my ND) and did not notice an increase of symptoms. I still avoid cheeses though because they are known trouble makers.
I've never tried Senna and Cascara together, tried them separately but it's been awhile. I'll pick some up from the store tomorrow.
I was also going to try adding a different type of probiotic. Anyone tried Natren's "Healthy Trinity"? Sounds good but very pricey. But again, i'm desperate.
Thank you also Randibear, Sparrow, and Gael. I really wish Ducolax would work for me and Castor oil makes me vomit (sorry) though I know it helps others I just can't keep it down. And yes I have tested neg and treated for parasites prophylactically RX's and months of herbals under direction of an ND.
Thanks again and up for more thoughts!
Posted by SoSublyme (Member # 15185) on :
After a lifetime of severe constipation, I finally found the perfect solution...for me, anyway.
The nutritionist working with my first llmd gave me liquid rhubarb root...5ccs once in a while does the trick. It's very mild too.
Hopefully, you could find it thru an herbal pharmacy or nutritionist. Good luck.
Posted by gemofnj (Member # 15551) on :
sammy,
i am sorry for you. wow, that sounds so uncomfortable. i am just going throw ideas out there:
i am assuming you had a cat scan to rule out a blockage??
is there something natural that you eat that used to help?
how about digestive enzymes such as DIGEST GOLD?
a huge daily fiber intake?
enemas? (there is the kind for testing prep but i would consult a doctor first)
oregano or antifungal products/herbs for yeast?? (they can really clean you out!)
cut down on some abx, especially the offenders--perhaps over medicated?
YIKES!!
Posted by Zebco 33 (Member # 18376) on :
Sammy~ Sorry your having trouble.
Hubby had constipation for years.
Our internest gave us a script for "Polyeth Glycol 3350/527GM.
It's a generic Miralax. Cost is $5.00 w/ insurance. Tasteless and can be put in your juice, water, coffe.
He has finally found something that works.
We find the Miralax over the counter kinda pricey compared to the generic script.
Hope you can find "releif"
Prayers for you~
Posted by Dawn in VA (Member # 9693) on :
Maybe lots and lots of magnesium in the meantime- just to get the bowels flowing?- until you can find something to help the neuropathy. Speaking of which, you may want to inquire about neurontin or getting methyl B-12 shots to help the neuro stuff.
Posted by Lymetoo (Member # 743) on :
I would try a gluten-free diet .. completely gluten free for at least a month and see if that helps!!!!!
Celiac disease made me constipated .. it did not give me diarrhea as is usual.
www.celiac.com for avoid and OK lists
Posted by Buster (Member # 19472) on :
My low GI tract is doing much better but from my stomach up, not so great.
Posted by seekhelp (Member # 15067) on :
I was in the ER a week ago for severe back spasms/stomach tightnes. It was constipation when they did a CT-scan.
My genious PCP thought it was diverculitis. The ER doc dismissed that in literally 2 seconds. How can such difference in opinion exist?
They gave me go-litely. OMG. That stuff is brutal. What a day. That'll clear you out. The bottle said it works in an hour. Two hours later nothing happened. I was going to call my doc. Well, 10 minutes later all hell broke loose. It was a LONG night.
Posted by Tracy9 (Member # 7521) on :
Glycerin suppositories
Fiber Force 6 by Puritan's Pride
Both work almost if not immediately for me.
Posted by kissis (Member # 4165) on :
I dont no what it is but Benadril in the pill form cleans me out,about two or three doses later, much better and way milder than any laxative ever did. I also eat several prunes a day and that helps alot.
Posted by bigstan (Member # 11699) on :
Activia (Dannon yogurt) with Bifidus Regularis is scientifically proven to help with slow intestinal transit when eaten daily for two weeks.
Eat it once a day, this is all you need it tastes great and will regulate you.
I would try this before anything else that was mentioned. Eat 1 a day and your problems go away.
Posted by AmyPW8 (Member # 11504) on :
Black walnut hulls and mag helped me. Vegetable lax tablets help also.
Posted by Healing in Santa Cruz (Member # 7798) on :
You might want to read the Pyrroluria posts here. One of the symptoms is big time constipation. I am on the protocal and that is one thing that is getting better. You can do a search here and take the written quiz.Also look at Scotts post on K presentation. Joyce
Posted by sammy (Member # 13952) on :
Wow, thank you all for your thoughtful responses!
You certainly gave me a lot to think about and some new ideas to try.
I was talking with a friend today and he recommended trying papaya puree. He is from India and has worked as a travel nurse in several different countries. He said he drinks a couple ounces every day. It's thick so you may want to mix it in something else. Just thought i'd mention it here in case someone else wanted to try it too.
Again, thank you all! I'll keep you posted on what I find to work for me. And you all keep posting if you run across anything new. I'm sure that there are many others here that will benefit from your sharing too.
Posted by Robin123 (Member # 9197) on :
Mangosteen juice can regularize the intestines like a baby's. It can be powerful when you start it, so go slowly and drink some water.
You can get some in healthfood stores, online, and the strongest is Xango, sold multi-level.
Posted by jessie86 (Member # 20045) on :
Sammy i feel your pain!!besides the pain meds, i also have a prolapse,and also i dont think my gut is working like it should so put all 3 together & it's a mess.
i have tried lots of things,and just so happened i ran out of my cod liver oil i take for omega 3
i forgot i had bought some flax seed oil soft gels ( for the omega 3) so i started using them, and dang if they don't work way better than the stool softeners i have been taking by the handfulls!
that and lots of water.i usually take 3000mg a day, hope your better soon. i know it's miserable! Kat
Posted by lymetwister (Member # 19590) on :
Psyllium Husk is the real deal.
Not listed here, so I thought I would add.
LT
Posted by kelmo (Member # 8797) on :
In an emergency, just a water enima. But, if you can find it, TRADITIONAL MEDICINALS tea, "SMOOTH MOVE" works great.
You can find it at many grocery stores or health food stores. Drink it at night before you go to bed. It will move you the next day.
A homecare nurse recommended it for my 97 year old grandmother. So, it's pretty safe.
Kelmo
Posted by lymeparfait (Member # 14268) on :
First, HYDRATE !!!
Those with constipation, need more fluid, expecially with electrolytes and minerals.
Remember , everything is out of balance...so think balance each day.
I am now using SelectrolytesTM, add this salty solution to my 8 oz of water, and take it 6 x day!
Helps tremendously. Add fiber! Try psylium husk in water two times a day. Eat lots of fiber...but the hydration is the problem.
Your cells are not hydrated, which comes with the territory of our illness.
Also, when needed that extra help...take Swiss Kriss, natural herbal laxative...from health food store. Take before bed. so work on hydration...as it helps you absorb your nutrients and meds....and als helps your body eliminate correctly! it move out all the bad toxins....
Posted by lymeparfait (Member # 14268) on :
Also, I forgot to mention...water alone does not hydrate the cells in chronically ill!
Need mineral water, that's why I suggest the selectrolytes. Energen-C has some dyes and sugar...but also has many good things in it to hydrate and balance.
Pellegrino water has loads of minerals...very valuable for hydration as it has magnesium, potassium and other things that will get absorbed in your cells! It also aids digestion..
It's expensive, but worth it.
Posted by sammy (Member # 13952) on :
I'm still really struggling with this constipation issue. In fact, i'm pretty sure that this is why I recently developed a hernia Posted by Dawn in VA (Member # 9693) on :
Geesh, sorry to hear that! It's been a long while, right?
One other idea I didn't see mentioned- gluthathione+coffee suppositories. Brand name Xeneplex (I think). I've used them long enough now where this doesn't happen to my anymore, but had a hard time "holding them in" at first. Same with coffee enemas.
Posted by Saskat (Member # 20273) on :
Can you rebound? Seemed to "shake me up."
Posted by Robin123 (Member # 9197) on :
Again, I'd like to recommend trying drinking some mangosteen juice. I drink the Ultra brand with 70 minerals. It worked immediately to end constipation when I started drinking it. In healthfood stores and online.
Posted by missextreme (Member # 3610) on :
Definitely try coffee enemas. They help with all around detox and relieving constipation. I use them regularly to help with my detoxing. You can read all about them online and in alternative health books.
Posted by TX Lyme Mom (Member # 3162) on :
The article above has some practical suggestions at the very end of it. However, the main value of the article, authored by a well-respected LLMD and published in a GI medical journal, is that you might find something in it which will help you persuade your doctor to take your gut issues seriously.
I know of one Lyme patient who went undiagnosed for 11 years, since childhood, and who didn't have any bowel movements for the entire time, until her Lyme was finally treated with antibiotics. After starting antibiotics (oral amoxicillin, to be precise) and also taking high doses of turkey rhubarb (an herbal remedy), she was finally able to have normal bowel movements for the first time since childhood.
Eventually, she no longer needed the amoxicillin, but she continued taking turkey rhubarb -- 10-12 caps daily. I don't know what became of her because she was lost to follow-up after Hurrican Katrina when her family evacuated from LA. I assume that she is doing well though still.
I know of two other Lyme patients who have had gut paralysis that lasted for an indefinite period of time.
Here's a link to an article about celiac (aka: gluten intolerance) which might also be playing into the picture since any number of events can act as "triggers" for the development of active celiac disease, including Lyme disease of course, also.
You might want to try to find a copy of this month's Sci Amer while it is still available on the newsstand because it contains beautiful color illustrations which help you to visualize the details about "tight junctions" and "leaky gut" which are part and parcel of the development of active celiac disease.
There is a lab which offers a home test kit for diagnosis of celiac &/or gluten intolerance. Here's the link:
Read the patient feedback testimonials and then take a look at the professional credentials of the lab director and you'll see that this is a well known and highly respected lab. The advantage is that you can order the test kit without a doctor's lab order - except if you reside in NY or MD, in which case you might need to find a friend or relative who lives outside the state to order the kit for you instead since those states have laws which do not permit residents to order their own medical lab tests such as this.
The Comprehensive Panel with Genetic Testing is the best value ($369). It's the first panel of tests in the list on the left side of the page if you click on Prices for Lab Tests in the sidebar on the left side of the home page.
After you read the two articles (links above) you will begin to understand how Lyme can set a person up for "latent celiac" to become activated into full-blown disease. If you need more info about celiac, then look for a recent topic entitled "Celiac Help Please" here in the Medical Forum.
Posted by randibear (Member # 11290) on :
my doc gave me dulcolax, very mild and it does work.
also if you drink milk, which i can't tolerate, but i do for constipation, you'll go within an hour or so.
i have a glass in the morning and have to absolutely stay home for the next two hours.
Posted by lpkayak (Member # 5230) on :
i use magnesium-the kind dr b says to get" mag tab sr
i take 1-4 a day ...what ever it takes to stay regular
also smooth move tea if i am really bad from pain meds after surgery-its senna
Posted by pepperspeck (Member # 18837) on :
Slippery elm tea can be helpful. I have a motility disorder that involves the entire digestive tract. I have tried a gazillion things to help speed up stomach transit and then from there on out. Here is a list of things that I have found to help, in no particular order. Nothing helps/ed 100% though. I do the *'d ones daily.
slippery elm tea* magnesium* vitamin c* daily prune juice* hot water first thing in am* stomach massage jumping (rebounding) low to no fiber* aloe vera juice* staying hydrated* miralax daily homeopathic remedies acidolphilus* hot water bottle hot bath
I also have to be very careful what I eat. Fiber does not work for me. It clogs everything up. I know this is because of the motility issue, but thought I'd mention it.
Have you talked to your Dr.? I was prescribed a medication to help move things. I had a reaction to it though, most likely because it took way too long for it to get to my intestines, where it is supposed to work.
I feel your pain and hope that you can get some answers.
Posted by ping (Member # 6974) on :
Geez Luuuueez, sammy. With all the drugs you're taking, it's no wonder you're body is freaking out. No offense to your doctor implied and I don't know what co-infections you have, but you might want to sit down with your LLMD and see if you can't find a way to eliminate some of these rx's. You're also likely to be allergic to some, if not most of the supplements you're taking. Just my uneducated and unhumble opinion.
I agree with lymeparfait that the first problem you likely have is one of hydration. Someone on the AI thread struck a cord with me when they recommended watermelon. It has really done the trick for me. Can't use sparkling H2O cuz it pushes up my BP. Back to the melon though; it literally gave me loose bowels when I ate too much yesterday. Anyway, whatever the method, you need to hydrate yourself.
Mg also helps greatly with the constipation, esp. transdermal MgCl. If you're researching, try:
ping "We are more than containers for Lyme"
Posted by ping (Member # 6974) on :
sammy - I know your note is dated 6/29, but pls check in with us and let us know your condition, or pls PM me. Thx
ping "We are more than containers for Lyme"
Posted by randibear (Member # 11290) on :
just at tip. i can't do enemas as i have hemorroids pretty bad so the doc said don't even try.
Posted by ping (Member # 6974) on :
sammy,
I was thinking about some of the things you said on the way home from the office (no computer available to re-post) and got real worried.
No BM for the timeline you give means that food has putrified in the bowel and you could be in serious trouble. If you have an impaction, that could mean surgery.
Also, the one class of drugs that almost no one lists when giving us info. is narcotic painkillers. I can tell you that they are a primary cause of constipation, even if you don't have constipation to begin with. If you're also unknowingly allergic to them, you get a doubling effect. Then, after you added additional meds and report even more problems, I'd say that you're way past colonics at this point. I speak from experience; it's really nasty.
Please let us know how you're doing, sammy. I noticed a thread you posted about hernia, so I'm going to read that next; maybe that's what's causing you such added troubles, but I can tell you that if you're taking Vicodin or any of the other pain meds, you'll likely have to stop them in order to get things moving again.
ping "We are more than containers for Lyme"
Posted by sammy (Member # 13952) on :
Thank you for your concern ping. Thank you all for your thoughtful responses.
Sorry it's taken me so long to get back here. I felt really terrible thurs-sun, major flare of flu like symptoms and joint pain, etc. Hadn't had a flare that bad in quite some time. Then I worked all day today so i'm totally spent.
Although I didn't post much over the weekend, I read all your responses, did a lot of thinking, and I reread Dr. Sherr's "Bell's Palsy of the Gut" article.
That article really describes me. Severe GI problems were the first symptoms that I developed when I fell ill with Lyme. They were so terrible that my doctors though that I had picked up some kind of tropical/foreign virus or parasite that just wouldn't go away.
After over a year of very thorough work ups I was eventually diagnosed with gastroparesis and "post viral vagal neuropathy". By the time I was diagnosed with Lyme I had other problems with neuropathy involving my eyes, arms, and legs.
I did test positive for Lyme and several coinfections so that is why i'm on all the meds. Besides the gut problems I had been feeling much better in general. Makes me wonder if i'm finally addressing the infections properly which is causing a herx, increasing inflammation, and aggravating my GI symptoms.
I'm also wondering if the hernia might have been forming for awhile and if it might be contributing to the increase in my symptoms.
As I said earlier, i've been struggling with bloating, abd distension (firm to touch, protruding), nausea, pain, and constipation. Since increasing the miralax i've had a couple very small stools every couple days (picture a child's handful of soft raisins). No real BM in a long time.
So, after much thought i've decided to take ping's advice and drop a majority of my supplements/herbs. I've tried adding everything under the sun, it didn't work, so maybe I need to simplify. This way I can figure out what's really helping and what's not.
As for changing medications, I have a follow-up with my LLMD in a couple weeks (he prescribes all of my meds). He said that we will have to figure something out if things don't improve soon.
Unfortunately I can't blame it all on narcotic pain meds. That would be too simple of a fix. I've never taken them, I simply can't because of my job. Good point to consider though for anyone else reading this thread and struggling with this issue.
So if you all have any more advice or opinions please let me know. I just really need to get these symptoms under control.
Posted by ruggie100 (Member # 21415) on :
Constipation has been nightmare for me. I have literally tried everything. I was doing enemas three times a week for years (imagine the distress!!!) sooooo sick.
Finally, when I purchased lumbrokinase (blood thinner) and THEN took activia, aloe vera, phillips mag, hydration, etc. Things started to move. In addition, I notice after my methyl B12 shot (i get two a week), my bowels move a ton the next morning.
For me, I was having terrible swelling in my intestines, liver and terrible pancreatic attacks.... the blood thinner has FINALLY calmed it all down. If I start to feel "full", I hydrate, detox, take blood thinner, b12 and probiotics and then start abx again.....
Posted by imagine2 (Member # 3136) on :
Whole Foods carries a magnesium product called "Calm"...powder, I think. Haven't tried it but heard from a friend that for a "jump start" its awesome.
Posted by dmc (Member # 5102) on :
I use a product called Klenz Tea you can google it.
It was part of a colon clense program I had done. Loved the tea so I just order that now. It's very helpful without being harsh for the constipation due to narcotics.
Posted by alliebridge (Member # 9103) on :
I've used Colosan. It's Magnesium, as others have mentioned, in powder form and totally natural.
Sometimes you have to do it a second time for it to kick in. But it will work and is completely natural and most importantly gentle on your body, which is great.
Posted by MY3BOYS (Member # 17830) on :
would use fiber with CAUTION with consitpation issues this severe. when adding bulk (fiber) without motiltity you make bricks!!! making the situation even worse, then if you factor in hydration the fiber can make you much worse, not better
hydration and movement (excersice in whatever way) are most important.
neuro supplements for vagus nerve/gastroparesis. so,b-12 shots daily and any other neruo supplements
for any internal inflammation zyflamend is excellent supplement ,.
best wishes
Posted by ping (Member # 6974) on :
quote:Originally posted by MY3BOYS: would use fiber with CAUTION with consitpation issues this severe. when adding bulk (fiber) without motiltity you make bricks!!! making the situation even worse, then if you factor in hydration the fiber can make you much worse, not better
This is true.
ping "We are more than containers for Lyme"
Posted by Marnie (Member # 773) on :
Stimulates peristalsis (wave-like motion that moves stool= BM thru the intestine).
As a former nurse...docs would often Rx this (one time as IM shot) post op to prevent paralytic ileus.
It really works.
Posted by ping (Member # 6974) on :
Hey sammy - Lots of people interested in what you do (do). LOL! I believe you're going to be okay. Might ask if your doc can see you sooner than, I think you said a couple of weeks?
ping "We are more than containers for Lyme"
Posted by DeniseNM (Member # 11182) on :
Someone posted about Magnesium Calm. It's a powder. That stuff works wonders for me. I can tolerate up to a tablespoon daily, which my doc says is a lot, but wishes he could tolerate that much! I don't go very well without it!
Posted by sammy (Member # 13952) on :
Someone else recently posted questions about constipation so I thought that it would be good to bring up this thread again. Thank you all for contributing such a wealth of information
I figured it would be good to give an update too since it's been awhile.
I have since found out that I am hypothyroid, treating with Synthroid but my last levels were still borderline low. This may be contributing to the increased GI symptoms/constipation.
Overall, I did simplify my supplements as I said I would but I have since added HCL along with my digestive enzymes. I also avoid beef and eat less meat in general as i've noticed that these things are more difficult for me to digest. These changes have helped to reduce the bloating, discomfort, abdominal distension, and general gastroparesis symptoms (though they still occur to varying degrees daily).
My LLMD also changed a few of my medications last month, these changes did not seem to help much for the GI symptoms or my overall condition. Had another f/u a couple days ago and he drastically changed my medications again. It is too soon to tell how this will affect me. I'm hoping for some positive results.
I'm still taking Mag Malate 2g, digestive enzymes, HCL, VSL#3, S.Boulardii, and Miralax to help control the constipation symptoms. I'm also on Metanx (B12, B6, folic acid) for neuropathy symptoms and Zyflamend for inflammation. My doctor recommended adding Cytotec(RX) if things do not improve soon (i'm supposed to make the antibiotic changes first).
I'm hoping and praying to see some drastic improvements overall this month Posted by IckyTicky (Member # 21466) on :
If you have no obstruction, have you tried drinking Epsom salts? It's sure nasty, but it cleaned ME out.
Posted by imagine2 (Member # 3136) on :
Hi Sammy, The product that was recommended to me by my holistic pharmacist is called Citroma (cherry flavor) by Swan.
It worked for me when nothing else did. It might be worth asking your dr. about.
Hope you feel better soon.
Posted by METALLlC BLUE (Member # 6628) on :
1,000 to 2,000 mg of Magnesium Oxide. It'll get most people's bowels moving.
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