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I've been  taking Zolfran (ondansetron) tablets for nausea off and on for around 4 months. This last week I've been battling dehydration and it is getting not going away. Tonight I again threw up after taking it.  In other words the medication didn't work.

 

During a pouchoscope at Mayo's a month ago they did a balloon dilation at the bottom of my j-pouch to open up the short side of the j.  My pain had escalated along with a need for increased medication. My present problem is dehydration and nausea. Since my pain is better I don't think the problem is that the dilation didn't work.

 

I am taking zolfran for nausea as needed. I've been drinking hydration liquids and some 7up plus saltine crackers and potato chips. I figure it's because my body is craving salty foods.

 

Do any of you have any ideas as to why this is happening 4+ years after my take down?  I don't want to contact Mayo again as I can't be running up there every month!  I am going to email them if this doesn't get better but am asking for any ideas as to what could be causing this before doing that. I'm also getting headaches and muscle pain along with the nausea - that I'm assuming are hydration related. 

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The nausea is unlikely to have anything to do with your pouch, but it is probably leading to your dehydration. A common cause of nausea is medication intolerance. Did you start a new medication around four months ago? A second common cause is gastritis, normally treated with medication to control stomach acid (antacids, Zantac, Prilosec...).

Scott F

Thanks Scott. I don't think my nausea and dehydration is caused by my j-pouch because I don't have the pain I did before the dilation.  I've been taking omeprazole for GERD since before my surgeries.  I've been taking antibiotics without a break for 2 months.  I alternate between flagyl, which I am currently on, and augmentin every 2 weeks. I can't take cipro because it caused one of my c.diff infections before my surgeries.  I had a long stretch of c.diff a few years ago subsequently to my surgeries as well.  

 

I stopped VSL#3 around a week ago hoping things would improve. I've noticed some folks on here alternate taking it with antibiodics instead of taking them at the same time.  I did take it at the proper spacing with the antibiotics but was not getting better nausea/dehydration wise. I'm going to contact my Internist as she prescribes the omeprozole and zolfram.  My local GI told me that she'd, my internist, ordered all the tests he would have before he diagnosed my cuffitis years ago during a pouchoscope.  He has been out of the picture since he referred me to Mayo in 2012 but no one but him has performed endoscopes down my throat.  He's dilated my esophagus twice

 

The zolfran is the last medication I've been prescribed after she ran tests. So I'm not seeing my problem as being caused by antibiotics.  

 

I'm going to cut out all the acidic fruit I put in my daily protein smoothies.  Thanks for making this clearer.  I've pulled up gastritis on the Mayo site and think you are probably right.

TE Marie
Last edited by TE Marie

Thanks michalis33.  Today happens to be the last of a 2 week cycle of flagyl.  Instead of rotating back to augmenten I'm going to  VSL#3DS and s.boulardii - each 2 times daily.  The bad j-pouch pain I had before the dilation is better so the inflammation must be down too.

My Internist is on spring break with her kids so I'm going to try to manage this for the next 2 weeks.  I can go to the Urgent Care Clinic her group of doctors owns if things get worse. I'd end up having to explain everything that is wrong with me. I just went through a lot of blood and stool testing at Mayo's a month ago.

 

Thanks for the advice. I am going to follow it.  

TE Marie
Last edited by TE Marie

Thanks michais333 for your insight.  The nausea appears to be gone!

 

I am never taking Flagyl again!!!! I was on it a half dozen times battling c.diff in 2012.  If I ever get it again I'll insist on vacomyacin. I don't know why they didn't suggest it then.  Plus I've been on it intermittently every since for IPS/Pouchitis.  I can't take Cipro either so I wonder what I will be rotating with the Augmenten to stave off pouchitis/IPS now.

 

 

TE Marie

So it sure could have been Flagyl intolerance. Were you taking it with food? That can often prevent the nausea.

 

I hope you never get C diff again, but you might want to read the list of vancomycin side-effects before insisting on it. Asking about it makes perfect sense, as does mentioning the Flagyl problem, but insisting on it might be a touch too strong.

Scott F

I know what you mean Scott.  I was just carrying on.  

 

I posted victory too soon as I'm nauseous again. I have so many medical problems it's hard to figure out what's causing what symptoms. I am having heat flashes that are not due to hormones too. I know it's not a 5 month flu. I'm waiting to see my Internist after her vacation next week and having my thyroid tested again tomorrow.   I had such bad test results 6 weeks ago at Mayo's that my Internist here did more blood work before changing my dose.  

TE Marie

I went off of all antibiotics for 2 weeks and used VSL#3DS 2-3 times daily.  I started Augmenten  again today as the pain has worsened.  My thyroid was off and someone at my internist's office called me in a higher dose. 

 

I'm frustrated, sad, mad, disappointed, scared and lonely. I keep willing myself to get out of my depression but every time something like this backfires it makes me feel worse. I don't think I'm ever going to get a handle on my pouchitis/IPS/cuffitis and now probably need for another balloon dilation. I do need a different antibiotic than flagyl to rotate with the augmenten. I can't take Cipro as it caused c.diff when I had my colon.  Is there any other antibiotic that works well on pouchitis besides cipro, flagyl and augmenten? I'm going to email my GI at Mayo to prescribe something else for me. 

 

Thanks for your support.

TE Marie

Have you tried rifaximen? Expensive, but it is not systemic, so less likely to cause side effects. Another cheap and easy possibility is bismuth subsalicylate (Pepto Bismol). It can help with both IPS and pouchitis issues. It tames GI upset and also has antibacterial properties. They also use it in combination to treat C. difficile.

 

However, I would suspect that your nausea is related to your thyroid dysfunction, or even your upper GI issues. Once that is sorted out, you should begin feeling better within a week. Thyroid dysfunction can mess with your entire body's sense of wellness, including the psyche!

 

Jan

Jan Dollar

Thanks Jan, 

I just sent an email to Mayo requesting a different medication to rotate with augmentin. Good thing about them is they respond back to me right away and I won't need to come in for an appointment as I was just there the 2nd week of February. I've done some on-line searching for an alternative today and all I could find was Cipro, that I can't take because of my past c.diff infections, and Flagyl.  Flagyl made me feel crappy plus my perpherial neuropathy felt like it was spreading up from my feet - especially below the knee.  Thank you for responding. I'm just feeling sorry for myself as the pain has returned in full force.

 

The results of my Thyroid testing done at Mayo's on 2/9 was so high my local internist made me come in to see her, because she said if it was that bad I would be in the hospital. She did more testing and increased my medication dose and it was retested and increased again.  The problem is you need to take levothroxine for at least 6 weeks before new testing.  I was on this marathon of testing and tweaking for 18 months after my take down surgery.  I took every dose in-between and including 75MCG to 175MCG.  My latest dose is 150MCG.  I'm seeing her again this week for several reasons including pain management. I wish I lived in a state that allowed for medical marijuana and could try the kind that has low Thc.

 

TE Marie

They are ordering me the rifaximen.  I didn't request a specific antibiotic and feel better knowing that is what you expected.  If the inflammation would go down it would mean I wouldn't need to take as many Norco a day.  I was back to twice a day for a while but am back to 3-4 daily again.  That's what I was talking about using the medical marijuana for - abdominal pain. I just read my post again and see I tacked that wording onto the final part where I was talking about my thyroid. I know it's supposed to help a lot of conditions but never heard of it helping thyroid problems, lol!

TE Marie

Oh, I thought you were interested in marijuana for the nausea. There is a legal form, Marinol, in capsule form. You can ask about it. I don't know how strict they are in prescribing it, since it is specifically indicated for loss of appetite and nausea related to AIDS and/or chemotherapy.

 

http://www.drugs.com/pro/marinol.html

 

But, if your nausea is related to your thyroid dysfunction, you are better off getting that under control than getting another pill to take.

 

Jan

Jan Dollar

Funny story about marijuana.  Last fall I traveled with a friend for a long weekend visit to Montreal, the purpose of which was a birthday celebration for another friend.  We rented a private condo in Old Montreal, which had a very private outdoor wooden deck encircled by wooden walls, so neighbors could not peer in.  Me and my friend threw a post-party party which went into the wee hours of the night.  As the party wound down and my friend left with some others, I hung around to watch the Rangers hockey game with another of the party-goers.  This guy is a research scientist from the USA who works for a pharmaceutical company and always has a crazy personal stash of recreational drugs and prescription drugs.  He is basically like a character from a Seth Rogen movie if you know what I mean. A "stoner", even though he is now in his 50s.

 

Anyway he had all these marijuana joints rolled into cigarettes in what looked like some kind of wallet for these cigarettes.  I was stunned at how well organized his drug stash was.  Anyway, he asked me if I wanted to smoke a joint with him on the deck and not wanting to be rude, I smoked about 3 joints with him.  Absolutely nothing happened.  This was the first time I had tried marijuana since I was in college at UConn, and I remember getting high from it then, but this time zip, zero nada.  Nothing, it was like a placebo. I then teased my friend about the poor quality of his marijuana (which I think hurt his feelings a little bit), although I later admitted to him that I didn't know if my inhalation technique was Bill Clinton-like and maybe the poor inhalation resulted in poor results.

 

This leads to my question: is the medical marijuana smoked or taken some other way????????? Jan mentioned capsules, do they provide the same effect as smoking it? Just curious.

 

BTW my friend gave me a bunch of valiums from his personal drug stash which really helped the insomnia I was having that week.  So he wasn't a total washout.  And he gives out all his drugs for free.  I didn't even ask how he got all that stuff through the border, didn't want to know.

CTBarrister
Last edited by CTBarrister

Yes, it did sound like your friend got a poor batch, probably few, if any buds (where most of the resin is).

 

Medical marijuana can be smoked, vaporized, or eaten (like in brownies or cookies). I don't know if they test medical marijuana for quality assurance everywhere it is legal. It may not have high levels of THC (which is the psychoactive canabinoid), but will have high levels of CBD (which is the medical canabinoid).

 

Jan

Jan Dollar

Interesting story about a 50 year old stoner.  It sounds like he got the perfect job for himself with a drug company.  I did try marijuana back in the 70's and I didn't like it. I did try it recently, where it was legal, and I still don't like getting high. It is way stronger than it was 40 years ago. I just inhaled 2 or 3 times and again didn't like the feeling but it did get rid of my pain. I'm an ex-smoker so know how to inhale. I don't want to smoke anything again.  If I was able to use it regularly I'd make butter with it that can be used to make brownies or just spread on toast to get a constant amount. I would want the low thc kind.  A friend in a legal state makes the butter and then into fudge.  She freezes the fudge and eats a piece once a day.  She has 6-8 overlapping autoimmune diseases and syndromes. If anyone needs to use it as medication she does.  I think she has 4 qualifying medical problems where she would just need one of them.

 

The xifaxan at 550MG to be used twice daily cost $1,056 for 60 doses!!!!!! It looks like we will reaching our $4,800 annual deductible by May for sure this year.  I don't know if I want it to work or not at that price.  The monthly cost would be half of that as I will be alternating with Augmentin every 2 weeks.  

 

I am also stopping daily VSL#3DS. I've timed it in-between antibiotic doses and was using it by it's self twice daily. The conclusion I've reached by all of this trial and error is it is not getting rid of my pouchitis.  When my j-pouch problems were chronic cuffitis and IPS I thought the VSL#3 was protecting me from getting pouchitis.  Now I appear to have chronic pouchitis along with IPS and cuffitis. Research on the causes of pouchitis shows there are many possible causes. I'm glad c.diff hasn't been around for 2 years and am going to continue taking s.boulardii. I've been taking VSL#3DS it for around 3 years and it is very expensive. That's the way it looks now.

 

An APRN at Mayo's is on my GI team now and I'm working closely with her as I am serious about getting a handle on all of this.  The pain I experienced before the balloon dilation scared me and I have been dealing with pain for a few decades now. We need to just try changing one thing at a time in order to see if that one thing is helping or hurting. So that's what I'm doing - about all of my medical problems. I'm not going to bore everyone with my diet but I think I have it's a nutritious j-pouch and body way to go.  

 

I'm still nauseous but better than when I was taking flagyl and my thyroid was worse than now.  

 

I appreciate everyone in this group's guidance and support. 

TE Marie
Last edited by TE Marie
Originally Posted by Jan Dollar:

Oh, I thought you were interested in marijuana for the nausea. There is a legal form, Marinol, in capsule form. You can ask about it. I don't know how strict they are in prescribing it, since it is specifically indicated for loss of appetite and nausea related to AIDS and/or chemotherapy.

 

http://www.drugs.com/pro/marinol.html

 

But, if your nausea is related to your thyroid dysfunction, you are better off getting that under control than getting another pill to take.

 

Jan

As an aside, Marinol doesn't work all that well (at least for Chemo patients with severe nausea) if there's regular vomiting. 

 

People close to me were prescribed it while being treated for cancer, but found vaping/smoking actual marijuana to be far more effective and requiring far lower doses to achieve relief from nausea specifically.

ATXGuy
Hy everyone, I have same problem very unpleasant nauisa and it's so bed that keeps me awake at night. It feels like I am going to vormit but I can. I had my 1st surgery February 2nd and nausea started 10-15 days ago suddenly. I did't change anything regard to my diet or take any new medicine. Since I was released from hospital I all take Controlok(for stomach).I tried every natturally preparation,but nothing helped. I'm waiting to get a date of my 2nd surgery but I am very afraid becouse of a condition I'am at. With nausea I had very low blood pressure and there are days I can't go out of my house. I also lost 24,5 pounds wich is for my high of 5,74 ft is too much. I don't have any energy. Can you give me some advice?
Thanks.
Branchy

I'm sorry you are nauseated as I think I know what you are talking about Branchy.  I had a lot of dehydration problems after my first surgery.  If I wasn't projectile vomiting I was nauseous. So it's a good thing that isn't happening to you.  I know how it feels when we think throwing up will make us feel better.  My take down was 4+ years ago and I'm constantly working to stay hydrated. My metabolism is also messed up because of my thyroid so I don't know why I just started having the nausea in November. They did had a balloon dilation of my j-pouch the beginning of February and that didn't change my nausea. It could still be related to my pouch.  I'm still having similar j-pouch problems but just not as bad. My PCP did some testing and couldn't find anything obvious wrong.  She prescribed Zolfran in November and I usually need to use it at least once a day. I throw up sometimes but have adjusted my diet to mostly bland foods and that helps.  

 

I think I eat more healthy now than before my surgeries. I did try about every diet there is for over a decade and nothing improved my UC.  I went on a gluten and lactose free diet then and it didn't help.  I was recently tested to see if I had and gluten issue and I don't. 

 

I had IBS along with my IBD and now have IPS with my pouchitis and cuffitis. I also get car sick and did have morning sickness when I was pregnant.  I read somewhere that there is a correlation between the motion sickness and mourning (all day long in my case) sickness.  I didn't throw up when pregnant either - I thought I'd feel better then when nauseated. I also have migraines that are doing well with treatment but think the nausea could be related to them.  

 

Please think carefully back in your life to see if you might have had other times in your life were you were sick like I was above.  The most embarrassing time I got motion sickness was after I got off of the Tilt-a-whirl when 17. It was embarrassing as some cute guys were there. The strangest things come back to us when reviewing our past. I probably have more of it to review as I've been hanging around almost 6 decades. 

 

Finally, please call your surgeon and find out if what you are experiencing is related to your colostomy.  If it is then your problem will be solved after your take down surgery.  I was in the hospital 16 days after my first surgery because of mine and it only got better when I had my take down - 8 weeks after the first surgery.  

 

Good Luck

TE Marie

P.S.

I lost a lot of weight after my surgeries too.  No one worried about it that much as I had plenty of prednisone weight to loose. I'd suggest that you drink protein drinks. There is one out by Carnation that is 100 times better than Boost.  They are high in calories and are healthy for you at the same time.  It might help to drink them in-between meals as it is better if we east smaller more frequently than the usual 3 meals daily. I also use PlantFusion which is a protein powder.  I mix it with Almond milk and make fruit/veggie smoothies, but you can mix it with anything. I add coconut water in the mix too - as it is good for hydration and adds a bit of flavor as well.  I like chocolate the best and vanilla.  Raspberry Chocolate is okay but I won't purchase it again.  If you go to their web site you can see where to purchase PlantFusion locally. My nutritionist suggested I try it after my surgeries.  Now I order it from Lucky Vitamin.com or Amazon.com.  I buy it from the one with the better price.  

TE Marie

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