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Discussion Starter · #1 ·
I've had IBS-D for 5.5 years now. It started overnight. I was fine one day and suddenly had IBS D the next. No major life changes or changes in diet/exercise. When it began, I was having up to 12 BM a day. I went through the following drugs:

Levsin

Lomotil

welchol

Lotronex

Bentyl

Donatol

The sweet combination for me seemed to be lomotil and omeprazole. My stomach pains and contractions essentially went away after I began omprazole, but the diarrhea never did. However, it made it somewhat manageable. I was down to about 7 BMs on a normal day, a good day would be 4. It's always been worse in the morning and when I'm sitting. I have two jobs- one is in an office where I sit all day and have significantly more BMs then I do at my retail job where I stand all day.

I stayed on this combination for about three years and remained stable. I didn't get any better (no days with less than 4 BMs), but I wasn't getting any worse either.

I've had endless scans and tests (including two coloscopies) which have ruled out Crohn's IBD, etc. I don't have any food allergies and I've tried elimination diets for short periods of time, but they've all proven ineffective. On my second colonoscopy, they did spot a small area of inflammation, but she said it wasn't IBD, just random inflammation.

That all changed this summer. Again, there was nothing different about my behavior- life, job, diet, exercise- but my IBS got significantly worse. I can't make it through my 45 minute commute to work without stopping to go. Sometimes I can't even make it to the nearest bathroom and am forced to pull over into some woods and go. For the past five years, I never had this sense of absolute urgency. It was more like I just increased my number of BMs, but I'd get the urge and would go immediately if I could, but would be able to hold it for a decent amount of time if it was not convenient for me to go.

Now it is almost impossible to hold it. Once I get the urge I have to go immediately. Car rides are an absolutely nightmare.

I returned to my GI doctor who first prescribed me amitriptyline. I began with 10 MG taken once a day before bed and she increased it to 25. It sometimes helped delay the BMs in the early morning, but I usually still have to stop. She then advised me to take rifaximin. I stayed on amitriptyline (and lomotil and omprazole) during the two weeks, but saw no difference.

I now have days where I have to stop two or three times during my morning commute. It's odd because I do not have to go when I wake up (even though I try to), but get a very sudden urge while driving. This is before I've eaten anything as I eat breakfast when I get to work. It's getting to the point where I dread driving any further than 15 minutes.

Does anyone have any suggestions? GI doctor has suggested I retry lomotil. I only tried it for about two or three months a few years back because of the cost and its ineffectiveness. I'm also looking into Viberzi and getting tested for vitamin deficiencies. Does anyone have any other suggestions for medications? I'm really at a loss here and hope I can find something to ease the suffering.
 

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timing. Timing the poop before work is ideal. Could be a kidney issue. Eat whole cranberries in the evening at exactly 6:00 pm. Kidney health is directly related to large intestine health and of course bladder function. Exercising the kidney and bladder can help.

This is a tonic I drink not everyday but sometimes when I feel I can't go early enough. tsp cacao powder, 2 tsp dark maple syrup, arabica coffee 8 oz. Mix them and drink. the all-chemical relationship is the worker in this. Take it 4:40 am for good results. 8:00 am timing works too.
 

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I can very much identify with these symptoms. Getting to work is the worst part of my day. I stop 1-2 times sometimes and have to deal with mass transit while doing so.

I don't know what you feel is your cause at this point in time. To me, it's almost a clear dysbiosis. Because of that I'm pursuing fmt over drugs to rebalance my gut and not just supress my symptoms.
 

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I would investigate doing fmt as well. In the mean time, load on the fibre. Lots of soluble fibre like ground flax to bulk your stools, and psylium to firm your stools taken with lots of water. Maybe try that Caltrate trick listed here in the forums, taking loads of calcium to constipate you. At least to get your symptoms under control. L-glutamine as well everyday, can help repair inflammation while having a slight constipating effect. Don't just rely on medication or western medical doctors alone.
 

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How has been your experience with Rifaximin and Amitriptyline?

have these drugs gave you any relief. I would love to know your experience with these drugs.

I reckon trying a potent probiotics like VSL#3 would do you no harm, may be it might help you.
 

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Discussion Starter · #8 ·
timing. Timing the poop before work is ideal. Could be a kidney issue. Eat whole cranberries in the evening at exactly 6:00 pm. Kidney health is directly related to large intestine health and of course bladder function. Exercising the kidney and bladder can help.

This is a tonic I drink not everyday but sometimes when I feel I can't go early enough. tsp cacao powder, 2 tsp dark maple syrup, arabica coffee 8 oz. Mix them and drink. the all-chemical relationship is the worker in this. Take it 4:40 am for good results. 8:00 am timing works too.
I've never heard of that connection. Incidentally I do have Polycystic kidney disease, but my kidneys are functioning normally at the moment. I've tried waking up earlier to try to go before work and it usually doesn't help. Even if I do manage to go, I still have the urge to go during my drive.

I was under the impression that to have a FMT, you need to have your own donor and it has to be someone who lives with you. Is that correct? If so, I may be out of luck as I live with my mom and she has similar (though less severe) bowel issues. How much would that cost?

I was checked for infections and parasites when my issues started happening in 2010 and nothing came up. As I mentioned I have had two colonoscopies since. Is it worth getting re checked?
 

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Discussion Starter · #9 ·
How has been your experience with Rifaximin and Amitriptyline?
have these drugs gave you any relief. I would love to know your experience with these drugs.

I reckon trying a potent probiotics like VSL#3 would do you no harm, may be it might help you.
Hi, I'm happy to share my experience, but unfortunately neither drug has worked for me. I've been on amitriptyline for months (I think since late September). I started on 10 mg one a day and when that made no difference, I was bumped up to 25 mg. It really hasn't made a difference. Sometimes it helps me get through my morning commute or at least only stop once late in my commute, but once I get to my desk job, I still have multiple bms. I've had some side effects as well. The drug is designed to make you drowsy (which is why you take it at night) but sometimes it makes me wired, causing my heart to race, which delays sleep. Sometimes I'm still drowsy when I wake up and I've almost fallen asleep while driving. Sometimes it makes me neither drowsy nor wired.

Rifaximn- I did my two weeks in December and did not see any results. In fact, the first couple of days I felt a little worse/had more bms then usual.
 

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I was checked for infections and parasites when my issues started happening in 2010 and nothing came up.
you should check whether it has been done thoroughly.....Labs are not always good (it is so easy to answer "Parasites : Negative") .... it can be sometimes tricky .. I had Giardia hidden in my gallbladder ...
 

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I didn't see Imodium in the list of drugs you tried. If you have not tried that I definately would. I couldnt function without it. If you have tried it, nevermind....
 

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Not saying you have this but look into Habba Syndrome. Perhaps you have a gallbladder issue. (Disfunctioning gallbladder). Immodium does help but its not a long term solution for most. Also research leaky gut. That may be why there was a little bit of inflamation in your intestines. Understand tho- colonoscopy and endiscopy, the doctors mostly look for big problems. Leaky gut is on a cellular level. Are you sure about food allergies? Have you had patch tests? Patch tests are where they mix certain foods like, egg, wheat, soy, dairy, etc. In small dishes and tape them to your back. They remain on your back for 48hrs. You return to your allergist and the dr will remove them to see inflamation. Me, for example, had large red inflammed welts where i had the egg and soy. Therefore it showed me i was allergic to egg/ soy. This still has not solved my problems but has helped. I believe there are other foods that may be causing me trouble as well but have yet to figure out. You need to find the right combination of foods and it is very difficult. I have been trying it for years on my own and it gets maddening. If you can, find a great allergist and a nutricianist to do food elimination and a meal plan. Get a notebook and keep a log everyday of what exactly you eat and bowel mvmts and the time of day.
 

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Stay away from processed foods- nothing thats made by scientists or factories. What I say is eat like a bear, EAT DIRECTLY FROM MOTHER EARTH. (Stay out of peoples garbage, dont be that bear, lol). Stay away from GMO. Do a lot of nutrician research. Dont trust all ingedient labels. Understand all ingedients. Know that 1 ingredient listed may have 10 ingredients in it. For most,its a tremendous amount of work and research for many years just trying to make a little progress. Stay strong put in the research and no one give up. Take a few breaks, but never give up. Remember doctors are people just like all of us, they have just researched far more than most on something specific. Nothing magical. You too can do the research, but it wont be easy. Also research all and any meds they want to prescribe. Most meds are horrible and may do more damage. Doctors are running businesses and the drugs are their parts. Its all $$$. Please dont trust doctors 100%. Listen to them, and do your own research. We will figure this out together. You are what you eat.
 

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Heres the deal. Human beings have over populated the planet earth to where theres not enough natural food for everyone to survive. We are so intelligent that weve figured out that we can just make our own food (unnaturally). This is changing/ hurting some of us and perhaps one day all of us. We are not going to stop breeding so we need to continually find a way to feed everyone. Seek out as much truely natural food as possible. If at all possible- hunt and fish for your meats and grow a garden. Dont plant trees, bushes, and ,flowers around your yard that cannot be consumed. I understand this wont exactly fix everyones problems but it definitely will not hurt anyone. Even if you just plant 1 raspberry bush it helps. Keep researching.
 

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You have damaged your lumbar spine. Start doing 8-9 lumbar exercises twice on the bed itself 1- when you wake up and 2 when you go to sleep ... and take glutamine immidiately this really helped....also put an alarm at midnight like 2 am and drink 2 glass of water ---- tip given by ma friend heaven.speech. gl
 

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Enchanted Tink- I'm so sorry to hear you are going through this and can totally relate. I have UC and now as it seems IBS. When I was experiencing what you are going through I did 2 things that helped immensely.
I gave up coffee completely and then started taking targets generic brand of Metamucil (psyllium husk fiber). And with that combo I was able to drive without the insane urgency. Also, I have good luck with probiotic vsl3.

I hope this helps. Hang in there!
 

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Discussion Starter · #18 ·
Enchanted Tink- I'm so sorry to hear you are going through this and can totally relate. I have UC and now as it seems IBS. When I was experiencing what you are going through I did 2 things that helped immensely.
I gave up coffee completely and then started taking targets generic brand of Metamucil (psyllium husk fiber). And with that combo I was able to drive without the insane urgency. Also, I have good luck with probiotic vsl3.

I hope this helps. Hang in there!
Can I ask how often you take Metamucil and when during the day you take it? I'll try anything at this point. I don't drink coffee and I actually don't eat in the morning until after my commute because it would be an utter disaster if I ate at home first.
 

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Discussion Starter · #19 ·
You have damaged your lumbar spine. Start doing 8-9 lumbar exercises twice on the bed itself 1- when you wake up and 2 when you go to sleep ... and take glutamine immidiately this really helped....also put an alarm at midnight like 2 am and drink 2 glass of water ---- tip given by ma friend heaven.speech. gl
I've never heard of this possibility before... Wouldn't I have other problems with a damaged spine besides increased bms? I do occasionally have back pain, but again, I have Polycystic Kidney disease, so I've always assumed any back pain is related to that.
 

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Discussion Starter · #20 ·
Hello all,

I appreciate all of the support and advice. I thought I'd give an update.

I'm actually doing worse unfortunately. My GI doctor seems at a loss of what to do next. She did prescribe me viberzi and I've been taking that for a couple months at 100mg twice a day in addition to lomotil twice a day and 25 mgs of amitriptyline at night. I've also started to have some bad days where I feel very nauseous after eating and sometimes wake up in the middle of the night with cramping, diarrhea, and occasionally vomiting.

Medication-wise, it seems the only thing I haven't tried is Motofen, which is similar to lomotil except strong and I've heard not as safe.. My GI doctor suggested I retry lotronex. I tried that a few years back for one or two months. I did not see immediate results and at the time, it was very expensive, so I did not continue to take it. Now it is more affordable, but my GI doctor thinks that the risks outweigh the benefits. Thoughts?

Unfortunately, I cannot try caltrate because I have a history of kidney stones.

I have taken immodium on very bad days or days that I know I have to travel. It does work, but it constipates me and makes me very uncomfortable for several days afterwards until I'm forced to take laxatives to relive the suffering.

I've had several ultrasounds of my abdomen and my gallbladder was looked at there and it didn't seem irregular on the ultra sound. Would that rule out Habba Syndrome, or is there another test I'd need to take for that?

How is one tested for leaky gut?

I'd be interested in trying an FMT, but I'm not sure how it works. Do I need to provide my own donor? I've read that it works best if you have a donor that lives with you and is therefore exposed to the same things you are. I live with my mom, but she has gi issues as well, so I'd think she wouldn't be a good donor.

To summarize- I've had countless tests including but not limited to: cat scans, ultrasounds, gastic emptying test, colonoscopy (times two, but it's been three years since the last one), endoscopy (times two, again it's been three years), blood food allergy tests (with no allergies found), I've had fecal analysis done (though that was in the very beginning, nearly six years ago). I've had the doctors rule out Celiac's Disease, Crohn's, Inflammatory Bowel Disorder, etc.

What I think is odd about my condition is that sitting seems to trigger bms, which is why I've always thought I've had some issue with inflammation. My condition is significantly better when I stand.

Again, I'd appreciate any suggestions. Hopefully I'll have a break through.
 
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