Probiotics after a total colectomy?

Hi all! I'm new at this whole posting business...

I had a total colectomy in November of 2007 at the age of 21 to treat colonic inertia. I do not have an ostomy. Life is still extremely complicated, as I have a ton of motility problems with my small intestine. We're talking altered life plans, highly restricted diet (ex: my system doesn't even tolerate applesauce), tons of pain, being sidelined from my favorite sport, etc. Life post-op is definitely much better than life before surgery, but it's still not much of a life. 

My question: is it safe/helpful/a good idea to take probiotics after a total colectomy? I can't find much on the subject through PubMed, or anywhere else for that matter. I know the small intestine isn't supposed to have very much bacteria in it, and I don't know if taking probiotics would be like trying to force my small intestine to act like a large intestine. On the other hand, probiotics help to combat SIBO and candida. Any thoughts? Has anyone had a similar experience?

I have been taking probiotics for around 35 years. Took them before my proctocolectomy and have been taking them ever since. If you start taking them you might noticed increased gas but that will go away once you get accustomed to them.

Sue

Allie,

No, the SCD diet did nothing for me!

Sue

Hi Allie,

I have small bowel dysmotility, too. I had a total colectomy with creation of an ileostomy 1.5 years ago which finally helped my horrible constipation and most severe pain. However, due to my small bowel and stomach dysmotility I can't eat like a normal person and normal amounts. Eating has become better and easier which was connected with severe pain and nausea before but ist is still not normal and difficult.

I have dysmotility throughout my entire GI system including stomach, small bowel and the removed colon plus the rectal stump (that's the reason I have a bag that can't be reversed; small bowel can't be reconnected to the rectal stump cause it is acting like an obstrcution istelf due to the rectal spasms/dysmotility). In addition I can't empty my bladder by my own so that I have a permanent catheter through the abdominal wall. Nonetheless I have still bladder spasms and pain.

i had a nasal feeding tube to support my nutrition sicne I was finally very underweight but this failed. Since October I have had intravenous feedings in addition to whta I can eat orally. SIBO is a big issue for me too although I lack the colon. However I have found that my gut doesn't tolerate probiotics, it just does not accept the right bacteria.

Do you have problems with your bladder? Which symptoms did you have prior to surgery and which have been persisiting/do you still have afterwards? How have you been diagnsoed withs mall bowel dysmotility and was it prior or after your colectomy?
After many false diagnoses I got the dignosis of CI but after two colon resections that left me with nearly no colon and failed I had to go to Italy (I am German) to get the diagnosis of chronic intestinal pseudoobstrcution (just another term for general severe dysmotility).I was accused of having an eating disorder before several times.

Are you nutritionally totally independent or do you get some kind of nutrional support?
Do you think that your condition/small bowel dysmotility has progressed since colectomy?
Do you still get obstrcutions due to the impaired motility?

I am curious to read more from you!
SArah

Post Edited (pelztier86) : 4/17/2010 5:20:58 PM (GMT-6)

Hi Allie,

nice to hear from you. I am bit at a hurry right now...but I will answer you more in detail if you would like to know more. I have had digestive issues my entire life but it was just labeld as lazy gut, in my youth when symptoms got worse it was IBS since all the normal tests I underwent (colonoscopy) etc were quite normal, at least what the docs consider as normal...looking back there were some hints that something was not right: my colon was way too long and very loopy but that was just nature, a play of anatomy without any value.
Basically the problem here in Germany is that motility issues are not known and that there are no tests to diagnose them. Only very rarely a gastric emptying test can be performed (I know one facility, that's all and it is rather on a background of cancer patients, anatomical problems causing slow stomach emptying rather than a functional problem).
In just underwent the wrong tests you can't diagnose motility issues. That's why these tests were all normal, and my issues were considered psychosomatic and finally I was acuused of having an eating disorder several times by renowned hospitals. I still struggle with this medical history and reports from that time.

I was diagnsoed by the Italian expert. I had x-rays showing meteoric disension of the small bowel and air-fluid levels in the lower abdomen indicating a chronic subocclusive state. I had a subileus right before my staying in Italy.
In Bologna/Italy I had a gastric emptying test which showed markedly delayed gastric emptying and a small bowel manometry.
Do you know if your dysmotility is caused by dysfunctioning nerves or muscles (neurogenic vs. myopathic form)?
My colon was most affected by the disease, even the little part that had remained were too much.

Do you still have constipation issues or did the colectomy erase this problem?
With my ileostomy I alterate between loose ouput caused by SIBO and thick, little ouptut. I am better in times of SIBO since then the transit is accelerated through my small bowel.
Do you feel better or worse when you have SIBO? I think I constantly have some kind of SIBO but then there are bouts of it and that is when I get loose output.
Have you thought of getting an ileostomy since rectal dysmotility can worsen small bowel dysmotility?

What did your docs say prior to your colectomy since normally most docs won't consider colectomy when there is evidence of a general dysmotility problem?

Which tests did you have? Did you have a small bowel manometry or a whole gut scintigraphy?
How do you knwo that your stomach alters between rapid and slow emptying?

Do you know what your small bowel transit time is (for example measured by a transit study or according to your own observations)?

Do you feel that the coleoctomy may have accelerated the deterioration process of your small bowel?

What do you do in terms of education/career? I have a very hard time to imagine my future in this way. My bladder problem is severe and I have had several infections of my hickman catheter subsequently to UTIs and the bladder catheter. My only option would be surgery of the bladder but it is very hard to find an urologist who is willing to perform this surgery in my case where experinces lack.

Sarah

Hi Sarah,

My colon was way too long as well. One of the Mayo docs and my surgeon both called it "long and torturous."

Wow. I'm really sorry to hear that it is so hard to get adequate testing done in Germany. There is an entire research center at the Mayo Clinic that focuses on motility disorders and enteric neurology. If you are ever able to make it over to the States, go to the Mayo Clinic in Rochester, Minnesota. Dr. Michael Camilleri is pretty much the foremost authority on motility disorders in the US, if not the world. He is the head of the Clinical Enteric Neuroscience Translational and Epidemiological Research (CENTER) Program (http://mayoresearch.mayo.edu/mayo/research/ensp/index.cfm). His credentials are here: http://www.mayoclinic.org/bio/10289402.html; and his research interests are here: http://mayoresearch.mayo.edu/mayo/research/staff/camilleri_m.cfm. Mayo was the best experience of my life, despite all of the poking and tests that went on. I really hope I can go back there soon because they are the only ones who are making any headway on researching and treating motility disorders. The first time I met Dr. Camilleri, he came into the exam room, sat down, looked me straight in the eye, and said, "We will find what is wrong. I hate to see young people suffer."

I know it's hard to have an ignorant doctor place an eating disorder label on you. But, if you are ever able to see Dr. Camilleri, he will look beyond that. He did for me. After he reviewed my test results and listened to what I had to say, he said, "Well, I don't think you have an eating disorder. You are clearly in a lot of pain."

I'm pretty sure my dysmotility is neurogenic. I also have numbness and tingling in my hands, down my left thigh, burning nerve pain that shoots all around my abdomen and back, and rectal nerve pain that feels like a lightning rod...it's really not pleasant.

Constipation is a huge problem for me. The total colectomy definitely helped, but the motility in my small intestine is so slow that food just sits in there. My transit time is longer that someone who still has a colon. I definitely feel worse with SIBO. The second I eat anything, I get a massive amount of bloating, so adding SIBO on top of that makes it worse. The bloating is extremely painful.

An ileostomy isn't really an option for me because it wouldn't help my small bowl dysmotility. Regardless of whether my small bowel is anastomosed to my rectum, or whether they went back in and did an ostomy, the small bowel moves so slow that I will have very slow transit either way.

You're absolutely right! No doctor will do a colectomy on a 21 year old unless they have a life-or-death case of UC. I had my surgery here in Dallas with Dr. Clifford Simmang. He is one of the best colorectal surgeons in the country. When I had a consult with him, the only reason he would consider doing a colectomy is because of all the testing I had done at Mayo, and Dr. Camilleri's suspicion that a colectomy might be the only option. Dr. Simmang looked over all the tests and Dr. Camilleri's notes, and he truly felt that a colectomy was the best option for me. A total colectomy was the last resort, and we were definitely at that point.

I've had so many tests that I'm not sure I remember them all. I had several gastric emptying studies, several transit studies that look at how fast/slow food moves through the entire GI tract (those tests take a couple of days because they have to take pictures at regular intervals to trace the location of the radioactive isotope and markers), barium swallow studies, a couple of colonoscopies, a sigmoidoscopy, anorectal manometry, and a colonic motility test. My small bowel transit time can be 24 hours or more (so painful). If you want me to explain how any of those tests work, just let me know.

I don't think that the colectomy accelerated the deterioration of my small bowel. I think my colon was in such bad shape that I really wasn't aware of how bad my small bowel really was. The motility in my small bowel is definitely deteriorating rather quickly, though.

I completely understand. I don't see myself having much of a future, either- it's so disappointing- I really wanted to travel, see the world, and go on mission trips. I have been riding horses since I was 7 (I'm now 24). Before things got really bad, I was studying equine science at Colorado State University. My goal was to complete graduate work in reproductive physiology and have a career in the breeding side of the horse industry. I had to give all of that up. I just finished my bachelor's degree in speech and hearing sciences a couple months ago. I am hoping to get a master's degree in prosthetics, but because of my health, the likelihood of that option is looking bleak. At this point, I don't have the stamina or the strength to successfully complete graduate work. So, right now, I'm thinking about getting my teaching credentials to teach science or special education. Teachers get breaks for Thanksgiving, Christmas, and a couple months off for the summer, so I wouldn't be working year-round. How about you? What do you do for education/career? Have you had to change careers to accommodate your health problems?

What kind of surgery would they have to do on your bladder? I'm so sorry to hear about your recent hospital stays. Do they know why the catheter keeps getting infected? Are there different types of catheters, or a different location they could try? Are they using the catheter for nutrition purposes? Have you found any supplements or medications that help your motility problems?

Allie

oh, and what tyoe of pain do you usually have in yur bowel? I myslef experience two kind of pains: rather steady aching/pressure pain (as if the bowels are getting distended which is exactly they actually do in these situations, they are "overloaded") and sudden spasm that are very intense and are even more severe than the pressure pain although they come and go, in my worst times I got spasms every minute. This was my situation prior to colectomy so I am very gratfeul for my ileostomy and improvement in terms of pain particularly the spasms.

Hi Sarah!

I will reply, I promise! It has been a very heavy exam week at school, so I have been forcing myself to just study. I would much rather be replying to your post than studying for tomorrow's exam. I still have questions for you, too.

You did not share too much (that wouldn't be possible), and I do look forward to continuing this CI/colectomy/dysmotilities everywhere else conversation with you.

I hope to be able to give you a full reply tonight, but it seems like preparing for exams takes a lot longer than it used to. I'm so tired because of the chronic pain, and it seems like my brain just doesn't synapse. If I don't post a reply tonight, I will tomorrow morning as soon as the exam is over. I promise! In the mean time, if you're on facebook, feel free to track me down. Search for "Allie Anderson," and my profile picture shows a girl kneeling in tall grass with a white dog.

I hope you had/are having a good day, and I look forward to talking (posting) with you soon.

Allie

Hi Allie,

so sorry for my prejudgement... i didn't notice that you still deal with exams since I am completely out of these things. I did manage to finish school 4 years ago and that was it. So I have no real education beside a second school grade. I am almost 24, and I have had digestive problems my entire life turning severe when I was 19.

I will look for the arctile that deals with the sudies on these kids....

As I mentioned before I have not been diagnosed with a generalized dysmotility/CIP here in Germany. After several false diagnoses that were made throughout my childhood and particularly youth I finally received the diagnosis of CI. I had already expereinced a severe progression/deterioration of my symptoms two years ago, and I barely managed to suffer through this time being accused of having an eating disorder due to the little intake, weight loss etc.
The dignosis of CI were made by two colorectal surgeons since GI docs in Germany who deal with motility issues are not found in Germany. I was very lucke since I casually found my way to them. I was sent by my general docs once again for examining my rectum since I suffered from horrible rectal spasms with blood on top of the motility issue (that time I did not even know the term motility and that there are diseases that cause dysmotility that could be responsible for my slow digestion).
Since they had done surgery on several young ladies before (these cases proved to be much less severe than mine) they suggested the diagnosis of CI. I only had a x-ray barium enema that showed a malrotated, partially dilated, twisted, wlongated and loopy colon and a defecography that proved impaired rectal emptying (partially functional, partially caused by an anatomical problem, a prolapse and rectocele).
Then I underwent my first surgery which involved resection of two third of my colon. After 4 weeks everything was the same ; my remaining colon function deteriorated even faster.

Half a year later I had surgery again to remove the biggest part of the remaining colon leaving me with nearly no colon except for 20cm plus rectum.(subtotal colectomy). The repeated barium enema and the defecography had shown the same picture again.

This surgery did not have any effect even right after the surgery.
This time my surgeons did not believe me any more and said that I suffered now from a psychosomatic issue/secondary eating disorder that had developed subsequently to the long-standing situation before.
Everywhere I went to I could not overcome this suspicion. I was labeled and I did not get any chance. That is why I searched desperately in the internet and found the European expert (by the way he has worked with Camilleri before at Mayo) who was very friendly and invited me to Italy to do further special testing which is unavailable here.

I have never been particularly diagnosed with anismus, the severity of rectal dysmotility proved by itself. Since I knew by my own expereinces how severe my rectal dysmotility was (I had a rectal tube to release the gas that accumulated in the rectum; I could'nt even expel gas due to the spasms. However, the tube failed either since teh spasms held the tube and twisted whcih resulted in a knot/loop (looking like hand-made) in the tube when I finally got the the tube out.
Ansimus is more a functional problem of the pelvic floor muscles but the defecography stated rather an impaired rectal empyting subsequently to insufficent propelling motility. I do have movement in my rectum but unfortunately it is discoordinated and not propagated so there is no force to expel t the stool/gas/liquids. So this is an example of neurogenic dysmotility.

After my diagnosis of CIP in Italy my surgeons were willing to try temporary ielostomy leaving my remaining colon. Thsi was the plan. However, druing surgery the remaining colon and rectum looked so bad (grossly dilated) that they decied to remove the colon. They left the rectal stump for a possible reconnection/ileorectal anastomosis.
Thsi time they could see the rectal dysmotility themselves my surgeons had not believed before. The rectum continues to produce stool which is expelled in a normal way in normal ileostomy patients. I was not able to do so even while having horrible pressure and rectal spasms. My rectum is chronically inflammed due to this problem.

I don't want to try the ileorectal anastomosis sionce I know it would not work. When I had my colon resection in addition to the persistent motility problem in the remaining colon I suffered from the rectal dysmotility and spasm which made things even worse in my colon and upper GI tract. The rectum has an impact on the function of the bowel part that is reconnected to it. If it fails the failure is taken to the proximal parts of the gut. If there is a dysmotility per se....then you can say good night.

Along with the bladder surgery my rectal stump should be removed since they rectal dysmotility is that severe that a reconnection is impossible and only causes more problems.

Vit. Ci did not work for me at all prior to the ileostomy but since the ilesotomy it does the trick a little bit.


My neuropathic pain in my feet/hands are stabbing and shooting, not constant but its onset is sudden and it lasts only few seconds , then it returns after a few seconds.. very painful...sounds like yours.

Where do you feel your constant belly pain most/in which area of your belly?

did you have some markers left in your small bowel or were all karkers stuck in the ascending colon? how did they disgnose you with small bowel dysmotility by this test? Have you ever had a small bowel manometry (that is th test my small bowel dysmotility was detected)?

Post Edited (pelztier86) : 4/22/2010 6:19:44 PM (GMT-6)

Yes, I had my first and second surgery in Germany. After these procedures I had an anastomosis to the rectum each time....but I had the rectal spasms even before the first surgery when I had my entire colon still in me.
The rectal spasms feel as if the rectum was going to twist around itself and the stools/gas/liquids got stuck and instead of moving the waste forward/out it just pushes the stools for- and backwards , and they come without any warning like you said. The only way I could empty a little little bit was by chance when I pressed on the back n the right moment and manually helped the stools to come out. If I let this moment/second passed when the spasms had accidently pushed the stools in the right direction then there was no possibility for me to get something out for hours/sometimes days before there was another chance. Keep in mind that this was not only when I should pass stools but also gas which I had teribble trouble to get it even to the rectum since it was trapped in the long/loopy/elongated colon.

I wouldn't say that I am symptom-free from my small bowel and stomach but I know taht I would be a lot worse with an ileorectal anastomosis.
Eating is particularly limited due to my delayed gastric emptying.
I can handle a broader diet (although the options are still very limited, I bascially eat the same every day consisting of a few things that I tolerate) since the ileostomy and I am able to eat more. Prior to colectomy I barely consumed 400kcal a day and that was very painful and made me incredibly nauseaus.
However, I undergo different phases/episodes which means that there are times that I am betetr and times I got worse without any obvious reason.
And these episodes are reflected by the different/irregular ileostomy outputs.
I am grateful for the improvement the ilsotomy gave me. However, I have only had it 1.5 years. Progression of the generalized dysmotility seems to be slower with an ileostomy than with an ileorectal anastomosis but eventually it is very likely that the progression will take/does take place..this is at least the understanding I got from my own research and from the motility specialist in Italy.

As I continued to lose weight after surgery I finally had a nasal tube for enteral feedings into my small bowel placed. This was awful and made me quite nauseaus, I could not run the feedings on a high rate and could eat less then before while I was on feedings.
Since October last year I have been on parneteral feedings in additon to my oral intake and I have gained 10kg this way. How is your weight? I was 38kg at my worst and I am quite tall. Now I am 49-50. My waeight does fluctuate quite a bit during the week I don't know why.
I also have hypothyroidism...do you have thyroid issues as well?

The rectal stump should be removed along with the bladder. The rectal spasms and their intensity lessened since surgery as the rectum is not used any longer. However nobody can say how my anus/pelvic floor and teh nerve tissue there will react. That's why resection of the stump except for the spincters instead of removing teh entire rectal stump (which bascially would mean amputation) is planned although I do have spincter problems as well.
The bladder situation ans spasms are now worse than the rectal spasms.

I know the feeling. I'm not sure that my rectal spasms are as bad as yours are, but I know what it's like to have to catch them at exactly the right moment in order to pass anything. I have a lot of trouble getting gas out...even more so since surgery. I noticed that while I was still in the hospital recovering.

 

I eat the same thing every day, too. What foods are on your "safe" and "unsafe" lists? My eating before surgery was the same way as yours- I could only get in a fraction of the calories that I needed. Eating has been a little easier since surgery, but the good days are getting farther and farther apart, and I'm having more and more trouble eating and getting the food to move through. It's like food just sits in my small bowel. It does have its phases, and like you said, there is no explanation for why any given day is good or bad. Lately, I will have several weeks- to- a month of lots of pain and problems, then a good day or two, and then it will be back to lots of issues. What is the cycle like for you?

 

I've heard that the nausea from both nasogastric tubes and J-tubes is really bad. I haven't had a feeding tube, but I was on TPN for a bit. It is normal that you couldn't eat as much with the feedings. When nutrition is supplied via NG tube, J-tube, or TPN, the body recognizes that influx of nutrients and suppresses the appetite because it thinks that it is getting all the nutrients it needs. I was on TPN right out of surgery. It was great because it kept me from losing additional weight while my bowels woke up from anesthesia, but I had zero appetite (and I've never had much of an appetite).

 

My weight now is about 98-100 pounds (44-45kg). At my worst, it got down to 80-82 pounds (36-37kg). I am a medium height- about 5 foot, 7 inches (170cm). I hope I got those conversions correct! My weight fluctuates based on how bad my motility is, and how much food is sitting in my small bowel and not moving.

 

You read my mind! I was going to ask you about your thyroid. I am not "textbook" hypothyroid, but my thyroid numbers are on the very low end of what is considered "normal." Every time they check my thyroid levels, they seem to be a bit lower than the time before. I'm probably due for some more blood work pretty soon, so it will be interesting to see where my thyroid numbers are at. My mom and my brother are both on medication for hypothyroidism, so there is a family history of it.

 

My body temperature has always been a mess. I am cold most of the time, even during the summer. Summer days in Texas are frequently over 100 degrees Fahrenheit (37 degrees Celsius). I have times when I get very hot, break a sweat, and then a minute later, I'm cold again. I agree- it's not necessarily directly linked to the dysmotility problems, but it is indicative of autonomic problems. Do you have problems with dry eyes and mouth? I do.

 

Have you had any hair loss, or problems with your complexion? Is your menstrual cycle normal? There are times when I lose a lot of hair, then it will taper off for awhile, and then start again. My eyebrows also seem to fall out easily. Weird, I know. When my motility is really bad and I'm in a lot of pain, I get severe breakouts of cyst-like acne on my face. My period has been off and on since 2004- sometimes there will be 5-8 months between periods. I know that is from my weight being low.

 

I am also concerned about a systemic neurological disease. My knees have been bothering me for awhile, but it hasn't affected my activity level. I guess all we can do is take one day at a time, and keep doing our best to deal with it all. I never imagined that my life would be like this, that's for sure.

 

If you still have spasms in the anus after the rectal resection, will they go back in and remove the sphincters as well? I know sometimes they remove all of the rectum and the sphincters, and then sew the anus closed. Do you already have the resection surgery scheduled?

 

Have you ever tried Domperidone? It's a drug that is not approved for use in the US, but if I'm remembering correctly, it is used in Canada, Europe, and New Zealand. Even though it's not approved here, we can get it online, and some US doctors work with Canadian pharmacies so that they can get it for their patients. Domperidone helps speed the motility of the stomach, and a little in the small bowel. It didn't help me very much, but I know that it works wonders for some.

It takes me a long time to eat meals, too. I have to go really slow to make sure that I don't overdo it, also.

I cannot have any dairy products, soy, red meat, and I have to be really careful of the amount of fat in each meal- if I get too much, motility stops. Grains are very problematic for me, but here is where it gets weird: I tolerate wheat better than any other grain. Rice, oats, buckwheat, sorghum, etc. all move very slowly through my GI tract and cause bad constipation, bloating, and pain. Wheat seems to move through much better. I use almond milk instead of cow's milk. My diet is almost the complete opposite of other colectomy patients. I have to eat a lot of fiber. Low fiber diets really cause a lot of pain because the food won't move through my GI tract at all. Bananas and grapes are pretty much the only fruits that I can comfortably eat raw. Other fruits have to be cooked/canned (peaches, pears). I have a hard time with apples- I cannot eat raw apples, but on occasion, I can have applesauce. Carrots, green beans, spinach, and beets are the vegetables that I have the easiest time with, however I have to thoroughly steam all of them until they are very soft. Sweet potatoes and yams go down pretty well, but not regular potatoes. I have the same problem with drinking that you do- I have to be careful of how much I drink with a meal.

I am the same way you are- the foods that work and the foods that don't vary, and there is no explanation for it. I can't figure out what triggers my episodes, either.

Have you been diagnosed with celiac disease? Why did you decide to go with a gluten free diet? Did it help? How long did it take for you to notice a difference in symptoms after cutting gluten out of your diet? I have tried a gluten free diet before, but my symptoms only seemed to get worse.

I think you're right about your nasogastric tube. The small bowel dysmotility probably was causing the feedings to reflux into your stomach.

Yes, the metabolism slows when the body in a state of starvation. That way, the body conserves what energy it does have. My TSH levels are the ones that are low. I have always been thin, and I do tend to lose weight rather quickly when I don't/can't eat as much. I don't think that I gained very quickly with the TPN; I did gain a little, and the TPN did keep me from losing any additional weight. Aside from my weight, I have more symptoms of hypothyroid than hyperthyroid. I know it doesn't make any sense. I have fatigue; weakness; dry hair; dry, pale skin; hair loss; cold intolerance; muscle cramps and aches; constipation; abnormal menstrual cycles; and some memory loss (probably just from being so tired). Those are all symptoms of hypothyroid. The symptoms of hyperthyroid are: heart palpitations; heat intolerance; nervousness; insomnia; breathlessness; increased bowel movements; light/absent menstrual periods; fatigue; fast heart rate; trembling hands; weight loss; muscle weakness; warm, moist skin; hair loss; staring gaze. There are a couple of symptoms that cross-over, but in general, I have more hypo symptoms than hyper. Weird, isn't it? My doctors aren't sure what to make of that yet. As we find out more, I hope they find an explanation.

I agree about the SIBO and acne connection. I also think that the stress that the body is under contributes to the acne, hair loss, etc. The little "periods" that I have are the same way- just a little bit of spotting, if that.

Reglan worked wonderfully for me for two days until I had a major neurological side effect. I developed tardive dyskinesia. I was 19 at the time. There are lots of videos of tardive dyskinesia online if you want to see what happens. I lost control of my tongue, lips, and jaw. They moved uncontrollably, and no one could understand my speech. I was very fortunate in that it went away after the Reglan was stopped and they gave me a huge dose of Benadryl. For many people, tardive dyskinesia is a permanent disability. The involuntary, jerky movements resemble Huntington's disease. I can't imagine having to live with that for the rest of my life. I don't think I would ever leave the house.

I have done three rounds (10 days each) of Xifaxan in the past. The first round helped for the first 3-4 days. The second and third rounds made my motility symptoms worse.