randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i think i may have found my problem. it's called "paralytic ileus" basically the bowel is paralyzed.
i have every single symptom -- no urge to defecate, bad breathe, severe abdominal pain, no bowel sounds, etc.
i was on flexeril for muscle spasms and this is a side effect. also i did that nutrisystem diet and got severely constipated.
i can go 2-3 weeks without a bowel movement and finally i take a laxative. the pain is horrendous. it's the walking floor screaming rolling in the floor type. i finally will have a bowel movement 2 days later and i will feel somewhat better but eating cause pain again.
the pain is mostly on the left side.
my gastro has said i have diverticulitis but i'm not so sure. after all, the other docs have been wrong about everything so why not this?
can lyme cause bowel paralyis? anybody heard of this?
if i'm not better, looks like a trip to the er is in order. this is not something i want to mess with. egads, i would hate to have a colostomy!! that's all i'd need now.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Diverticulitis is certainly something to consider. It can cause severe attacks of pain, indeed.
. . . Constipation severe enough to cause fecal impaction can occur. . . .
=================
Porphyria can also cause severe problems with the colon - of all kinds - even alternating very suddenly. Cramping and constipation, as you describe with such intensity and pain, is one sign. ---------
PORPHYRIA Thread -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yeah but not going for 2-3 weeks. i mean absolutely no urge. i sit on the toliet for at least 30 minutes and nothing.
but when i take a laxative the pain is like when i had that abdominal cyst that ruptured, only i think this is worse.
but damn, i'd hate to go to the er AGAIN and be told "oh it's JUST IBS."
and i don't dare mention lyme.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, lyme can cause ileus. It happened to Dr. Virginia Sherr, a psychiatrist who found out that she had lyme disease.
She told how she traveled to Japan, I believe, and did not have a bowel movement for a month, despite eating like crazy. She had absolutely no bowel sounds.
She once wrote a long article about her experience being diagnosed with lyme. This ileus was part of the story.
Now, she is a lyme-literate psychiatrist. Here is an article she wrote about what lyme can do to the gut:
Regarding diverticulitis, your gastro probably said you have diverticulosis which means you have diverts or pockets that have formed in your intestines. If a divert gets inflammed, it is called diverticulitis and requires strong antibiotics so that you don't die.
It would be hard to misdiagnose diverticulosis since you see the diverts with a colonoscopy. However, people with diverticulosis often never have any symptoms except for mild left-sided abdominal pain, which can generally be ignored as unimportant.
If food gets stuck in a divert, you will know it because the pain will become unbearable and it will be continuous as the divert gets infected. If allowed to progress, it can swell up and cause a bowel obstruction, requiring that part of the colon to be removed.
So, you could really have diverticulosis, but that is not what is causing your problem. It sounds very much like your bowels have become paralyzed. Any primary can listen with a stethoscope and tell you if they hear the normal amount of bowel sounds or not. If the amount is not normal, they will tell you to go to the ER where they will do a scan to see if you have a bowel obstruction. If you don't, they will send you home. They just need to make sure you don't have an obstruction.
So, why not go to a doc (even walk-in clinic) and ask them if they hear bowel sounds. I think I would. Doesn't mean they will be able to fix you, but at least you will have gotten the correct diagnosis. The cause is most likely lyme disease. But, you don't have to mention that to them.
Posts: 9931 | From Maryland | Registered: Dec 2007
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randibear
Honored Contributor (10K+ posts)
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posted
how do they treat bowel paralysis? would i have to be hospitalized?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The ER doesn't treat it. If there is no blockage found when they scan you, they send you home and tell you to get with your doctor for instructions.
If a walk-in says they hear no sounds, they will tell you to go to the ER to look for a blockage.
It is up to you to work things out with your doctor. In your case, you need to talk to your lyme doctor about it. You need some advice on what you can do each time it happens.
But, I am just telling you how to get a diagnosis of bowel paralysis. You can't call your lyme doc and say you have bowel paralysis until a medical professional says they hear no bowel sounds. If they hear no bowel sounds, you are to go to the ER to look for an obstruction, etc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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randibear
Honored Contributor (10K+ posts)
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posted
well that sounds like one vicious circle don't it? i mean talk about going around the corral a bit.
my primary is an __s, i cna't get into my gastro for at least 6-8 weeks and the last time he told my husband "she just needs attention, that's all."
if i go to the er and they don't find an obstruction, they'll send me home right? then i'm back to square one. and with my husband, that will send him into a complete rage and i'll have to deal with him not speaking and yelling and all, and i can't handle that right now. however, i did get out the colonoscopy report from january. it reads "diverticulities in descending and sigmoid colon."
if i took that report from january to the er, would it help do you think?
i'm not in the mood to put up with some doctor's ___t right now. don't know why, i'm really grumpy!! must be the bowel thing.
oh yes, i've lost 11 pounds because of this.
well.....____t...
i lost my beloved lyme doc in denton thanks to some jerk...now i don't have one and nobody around this one horse town believes in lyme.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you are interested in whether this is bowel paralysis, you have to go to someone and have them listen to your bowel sounds with a stethascope. You can go to a walk-in clinic for that.
All that does for you is tells you if you are right that your bowels are basically paralyzed.
That's all it does for you. Lyme causes this, so you have to treat the lyme disease. End of story.
p.s. The bowels can start moving a little bit at any time. Then, the walk-in could say to you, "I hear some bowel sounds." Just so you know. It happened to me.
Posts: 9931 | From Maryland | Registered: Dec 2007
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randibear
Honored Contributor (10K+ posts)
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posted
phooey, sorry if i sound grumpy. i'm not normally like this ya'll.
but i'm so tired. i've been up since 3 this morning in pain and i can't take anything.
i've got a ton of biaxin and probiotics and i'm just thinking of going back on the biaxin twice a day. that's what my lyme doc had me on.
plus i've got bunches of probiotics -- florastor, critical care, etc., etc., bottles and bottles.
i don't think it would hurt do you?
i just feel like sitting down and having a good cry ya know? it's like, what the ___l. now what?
or maybe it's this weight watcher's diet. i'm at 21 points a day and that ain't much.
but i've got to do something.
yuck, i feel sick ya'll. really sick. no fever, tho, just this horrible abdominal pain and nausea.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had undiagnosed lyme disease for 10 years. I'm with you when it comes to abdominal pain. It was the story of my life.
I suffered many episode of it. Now, looking back, I have to wonder if it was bartonella. Bart causes a lot of digestive trouble.
Gastro never found anything when he did colonoscopy, sigmoidoscopy, etc. He threw up his hands. He did 2 within a few months, sure something was going to turn up. Nothing ever did.
ER thought for sure I had appendicitis when I went there after lying at home for 10 days not moving, taking narcotic pain killers. Nope. Found nothing and sent me home with an offer of narcotic pain killers.
I said, heck, if I'm going to be in pain, get me a pizza. Hubby went out for pizza, I ate it, and by the next day, the pain went away.
Story of my life. Just what you are suffering.
Now that I am rid of my lyme, babs, and bart, I never get these episodes anymore.
You HAVE to treat your diseases, hon. You HAVE to.
Just in case you don't know, narcotic pain killers are great constipators. So, if you take them for pain, you have to take laxatives along with them. Doc says to take as much as it takes to keep the bowels moving. My neighbor took 16 percocet per day for diabetic neuropathy, and that's what his doc told him he had to do.
Posts: 9931 | From Maryland | Registered: Dec 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
well that one i don't have in my cabinet. not one pain killer.
in fact, my pain gets so bad my bp goes through the roof.
i've been to the er so much they have a room with my name on it!! they look up when i check in and go "you again?"
i mean it, at least 2-3 times a year. i'm getting burned out and right now i'm going back on abx and the hell with the rest of it.
i'm just fed up.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
randibear, I also have severe GI problems. The only time that my bowels move on their own is once a month with menstrual cramps.
I watch my diet, drink plenty of water, take digestive enzymes and HCL with meals, take Triphala, supplement with lots of Mag Malate (twice daily), drink Miralax (2 caps daily) and take probiotics. These things help but they are not a cure. I still only have a BM every 5-7 days. It's the best that I can do right now.
I had a very thorough workup by a motility specialist a couple years ago and was diagnosed with "post- viral functional vagal neuropathy" and "severe gastroparesis".
Results were normal for Colonoscopy, Endoscopy, and HIDA scan. CT scan was abnormal. Sitz marker test, small bowel follow through, gastric emptying scan were all severely delayed (failed, abnormal).
The key to my diagnosis was esophageal, gastric, small bowel, and anal rectal manometry testing. These tests monitored nerve function and muscle response. The vagal neuropathy affects my entire GI tract, throat on down.
Basically the nerves send messages to the muscles to contract when they shouldn't and fail to send messages when they should. The muscles also fail to respond to the nerves appropriately, again contracting when they shouldn't and relaxing when they should be contracting.
At the time of diagnosis my doctor thought that the damage was due to a virus. I have since been told that it is from Lyme and the coinfections.
Along with the constipation I also suffer with episodes of distension where my abd protrudes out, tight and painful, like a pregnant woman's belly. I usually have no audible bowel sounds when this happens.
I also struggle with Right lower quadrant abdominal pain attacks that are so sudden and severe that they cause me to pass out, literally unconscious, for several hours at a time. Again, doctors assume that these pain attacks are a result of nerve damage.
I'm hopeful that my body will be able to repair itself once I take care of the cause by eradicating Lyme. My symptoms do improve when I'm on Factive. They increase in severity when I stop taking the Factive. Otherwise, there is no treatment.
Randibear, I'm telling you all these things so that you can know that you are not alone. Find a doctor that is willing to listen and properly evaluate you. Ask for explanations. Understand the tests and your results. Don't give up.
By the way, you can buy a cheap stethoscope ($15-$20) to listen for your own bowel sounds. Uniform stores and book stores at local community colleges or tech centers will carry them.
If you have no bowel sounds it will be absolutely silent. Divide your abd in 4 sections and listen for a full minute to each section. Normal sounds are gurgly and rumbly. Listen to your husbands and compare if necessary.
Take care friend. Keep searching for answers.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Sammy has some good ideas there! Taking magnesium daily really will help. Avoiding pain pills would help too... any meds that dry you out are like death to your gut.
I would NOT suggest going to the ER .. as others said .. they will only send you home and make you and your husband upset. (here we go again)
The stethoscope idea is a good one too.. I have one for my heart. Shall I send it over to you?
Just to make you feel better... the only time they do a colostomy is when the intestines are full of infection or ulcerated. To my knowledge, they won't take it out for ileus.
Do whatever you can to keep things moving... even stool softeners on a daily basis would be a good thing right now.
WalMart has them cheap.. get the ones without a stimulant. Those you can get dependent upon.
HOPE YOU FEEL MUCH BETTER VERY SOON!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
sammy i cried when i read your post. that's what i absolutely love about lymenet. there is always somebody who understands, who knows what we're going through, who has been there and is willing to help out and not condemn nor judge.
i am so thankful to you and lymetu.
i'm just discouraged over loosing my lyme doctor, having no one to turn to (ya'll know how my husband feels), but at least i have tons of abx and probiotics.
after a couple of weeks of not going, i feel and look 9 months pregnant. my back hurts and the bottom of my butt feels numb too. also the muscles, the big ones, on the side of my back hurt also. i have what i call kidney pain but i don't think i have a kidney infection.
to tell ya the truth, i hurt all over.
i just don't want to eat at all. it's a heck of a way to loose weight.
again, thanks to both of you.
(hey, tu, i've got your coins. let me know where to send them.)
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I DO understand, randi. Have had my issues with constipation too. ( I think it's mostly from meds I take) I was dxd with ileus once when I had a hospital infection following GB surgery. UGH.. I understand the pain you are referring to.
I'm so excited you found the coins!!! Woohooo!!! I'll PM you!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I'll add a resounding YES to your responses. Miralax, miralax, miralax....
By the way, did I mention Miralax?
Double the concentration, two cups a day to stay moving...
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
Are there repercussions for taking Miralax daily??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Randibear, we're all here for help. Sometimes we need help, sometimes we get to help others with our experiences.
I'm sorry to hear that you are losing your Lyme doctor. That would be a very scary and upsetting situation. I feel like my Lyme doctor is the only one who understands what is going on with my body. He's the only one that's really helped me.
When your doctor informed you that he was not going to practice medicine any longer did he refer you to another physician? Have you asked the other Texas LymeNetter's for recommendations? I hope that there is someone within driving distance for you to see.
Maybe a new LLMD would be good for you. Sometimes you need a second set of eyes to see what's really going on and where to go to from here.
GI stuff is no fun. People take it for granted when everything works as it should. I remember as a kid it was an inconvenience to go to the bathroom.
Even when I'm at my worst I have to find a way to get some nutrients in. It's hard to eat and drink when you're in so much pain but I feel even worse if I let my sugar drop too low. If you can't get any food in, at least sip on some Gatorade.
When you get dry, the stuff in your gut gets drier and more stuck too. So it's important to stay hydrated.
Do keep up with the Miralax daily. You can mix it up in any kind of drink, add ice, and sip it if you need too. It forms a gel by pulling water into the large intestine, the gel helps push the waste out. It is safe for even tiny babies to take daily. It passes through the body completely without being absorbed.
If you're really constipated you might experience some diarrhea before you move any big stuff. When you've got some big hard pieces in there the liquid will go around them and come out first. It might take a couple days before the big pieces gets soft enough to move out too.
Randibear, when I'm sick or in pain I tend to tough it out. I'd rather die than go to the ER. Well, maybe not die but I'd likely have to be unconscious and someone else would have to carry me there...
That being said, if the terrible distension, pain, and lack of movement (no gurgling heard or movement felt at all) lasts for a couple days you really should be evaluated by a doctor. You don't have to go to the ER, try seeing an urgent care doc. They can at least do an xray to make sure that you don't have a bowel obstruction.
I just don't want you to get sicker or hurt so I'm telling you what I'd tell my family members.
*hugs*
Posts: 5237 | From here | Registered: Nov 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
well my doc said that's all they wanted me to take and it was safe to take every day.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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"Along with the constipation I also suffer with episodes of distension where my abd protrudes out, tight and painful, like a pregnant woman's belly. I usually have no audible bowel sounds when this happens."
This is similar if not exactly what I get when I am glutened. Have you tried a gluten-free diet... I do realize you have other severe problems with the gut... but this really caught my eye. It is indeed very painful!
and sad to say.. randi has few if any alternatives in Texas. No LLMD's left.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I have been tested for celiac disease several times (bloodwork, tissue biopsies, and visual exams by endoscopy). I was also put on a strict elimination diet within the first couple months after I got sick. I've never seemed to have a problem with gluten.
Since it might help, I'll have to try to avoid gluten products for awhile. How long did it take for you to notice an improvement in symptoms?
Thanks Lymetoo Posts: 5237 | From here | Registered: Nov 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i've, also, been tested for celiac, gluten, you name it. everything is normal.
i just had the colonoscopy in january which showed that diffuse swelling and diverticulitis in sigmoid and descending colon.
however, this not going just started two months ago.
i'm back on biaxin twice a day and plenty of probiotics and vitamins. don't have any flagyl.
my doc called and said there is nobody near here and they are referring people to california, missouri and louisiana (the nurse practionioner (sp) does the lyme). so i'm screwed...cause there is no way i can travel.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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