I made a comprehensive guide for those of you lurkers who suffer from extreme constipation
I know this is an IBS sub, but I also know there are many people with IBS-C and other constipation-related disorders who frequent this page. This is for you poor souls. I really hope it helps.
I've seen that many of you have chronic constipation but you do not understand why you have it, and your general practitioner doctors either don't think you have an issue or don't know what to do.
I know how you feel. I know how frustrated you are. I know how angry and depressed it makes you. I know what it's like to not even feel like a human being because you can't even go to the bathroom like everyone else.
Keep this in mind as you proceed. Your disorder is a puzzle. All you have to do is solve it. You can do it, if you have a great deal of patience, persistence, and commitment. Become your own investigator. Figure out your digestive cycle and your body's language. Listen to your body. Keep notes. YOU WILL FIND A SOLUTION THAT WORKS FOR YOU.
I have spent years seeing doctors, reading studies, accosting and interrogating medical professionals and pharmacists, calling pharmaceutical companies, and generally being an aggressive dick towards anyone who has information that could help improve my life. This post is the aggregation of my conclusions and recommendations.
In 2012 I started getting constipated, and it slowly worsened from once a month to once a week, to every day. I now am completely unable to eliminate without the use of pharmaceutical drugs.
It took years for doctors to figure out what was wrong with me. Because I have a condition that is "rare" (see: common but nobody knows much about it).
If you suffer from severe chronic constipation, you need to answer the following questions:
-Do you have the urge to go, but you cannot? Or do you have zero urge to go? -Do you have alternating diarrhea and constipation, or just constipation? -Have you had this issue since childhood, or did it begin in teen years/adulthood/after a major life event (surgery? divorce? car accident? mauled by bears?)
If you have the urge but cannot go, you very likely have a pelvic floor dysfunction, especially if you are a woman who has had children. PFD can be diagnosed and tested for easily. If you have acute pain as well, you might have a bowel obstruction, tumor, or pseudo-obstruction. You need a CT scan and X-rays, and you need them now.
If you have zero urge to go to the bathroom, you very likely have a nerve or muscle disorder of the large intestine. This is what I have. One is called Colonic Inertia / Slow-Transit Constipation. The other is called Chronic Idiopathic Constipation. Both are extremely frustrating and difficult to treat. It is especially likely that you've got one of these conditions if you have no associated pain or any other symptoms.
If you have constipation sometimes and diarrhea sometimes, you very likely have IBS-C or a rare form of colitis, or a combination of issues. You may have a nervous condition. Outside chance you have Crohn's Disease. You must be checked for intestinal ulcers/irritation/inflammation.
You need to insist to your GP that you want to see a gastroenterologist (a specialist of your butt). You need to advocate strongly for yourself because nobody else is going to do it for you. You have to be aggressive in your appointment-making, follow-ups, call-backs, consultations, and arguing with your insurance company about getting your specialty medications covered.
You have to do it yourself. You have to fight.
Print this guide out and keep it with you. I've done all the heavy lifting for you. I did all of these myself, and now I want to help you. You will spend money on all of this, but it will change your life. You will be glad you did it.
First, work your way through the tests to eliminate all other possibilities. Tell your specialist you want these tests in this order.
-Standard blood panel to check for any really wacky levels/deficiencies
-Celiac blood panel to eliminate the small possibility that you have Celiac
-Extensive thyroid panel (sometimes hypothyroidism causes gastroparesis / slow gut transit. This one's an EASY FIX; pray you have this one). You want a full workup, not the standard one.
-Extensive stool cultures: get the standard one and the parasite one. Small chance you have SIBO, very small chance you have SIFO, very very very small chance you have a Clostridium infection that paralyzes the bowels.
-Fecal blood test: Blood = tumors, ulcers, or perforations
-SITZ Marker Study: The lab will not know what this is or why you're doing it. Follow the doctor's instructions carefully. Do not take laxatives during this study (it lasts a week) because the point is to identify which specific part of your large intestine is broken (ascending, transverse, descending, rectum). If you accelerate transit by taking laxatives, you will give the lab a false result and it will screw up your treatment.
-CT Scan with contrast: This is the one where you drink the radioactive dye and lay down inside a space ship. The point is to find tumors, divurticula, obstructions, etc. Ask the radiologist what s/he sees. Sometimes they'll slip up and tell you. They can't say "You don't have cancer" (that's for your doctor to determine) but they can say "I don't see any tumors."
-Endoscopy and colonoscopy: If you're under 30 your doctor will fight you on this. He is an obstacle. Defeat him. Also, specify that you want tissue samples taken and tested for nerve density. They won't do this unless you demand it. Low nerve density = Hirschsprung's or some other rare condition. Don't screw up the pre-op prep, no matter how hungry you get.
-Motility workup at a specialty clinic: This is a battery of humiliating tests to determine if you have PFD or another nerve-related motility disorder. Enjoy these, especially the MR Defacography! It's a blast. But it will help you in the long run, so get over it and get it done.
You will have a diagnosis after this.
Meanwhile, cycle through these home remedies and request these medications from your doctor, in this order:
-Do all the stupid fiber crap just so you can tell your doctor to shut up about it. Fiber does not help people with nerve and muscle disorders (people like you, probably). It will not help you.
-Cut out all dairy immediately for a month. Dairy is delicious and makes live worth living, but it is disgusting and terrible for you. Almond milk, almond milk ice cream, rice milk, dark chocolate...get used to it.
-Cut out all gluten for a month and stick to it. Wheat is insanely hard to digest for almost all people and it causes nothing but problems for people with bowel disorders. Even if your Celiac panel comes back negative, you still might have Non-Celiac Gluten Sensitivity, which is still being researched but quite prominent. Many people immediately see results after cutting gluten. But look out - the shit's in BBQ sauce, soy sauce, it's in the air, it's in the water, it's in your pillow, it's everywhere. It's as if the USDA has an agreement with US farmers to sprinkle wheat in literally every f*cking food product.
-Try the FODMAP diet and stick to it. Eliminate all potential dietary causes of your constipation, then reintroduce them one at a time to identify the culprit. For 90% of you, diet has nothing to do with your constipation. You have a nerve disorder. As a rule of thumb, grains are all difficult to digest and should be avoided, but I've found that potato and corn are easiest, rice is a bit harder, and wheat and oat are the worst. No idea about quinoa. I strongly recommend sweet potato as a healthy filler replacement for breads. It doesn't even need butter!
-Miralax (polyethylene glycol) is your first line of defense. It's a chemically inert (non-reactive) substance that you mix in water and chug. It's an osmotic laxative, meaning it does not stimulate the nerves/muscles in the intestines. It draws water into the bowel and flushes you out. It works slowly; it might take several days to work. The mainstream medical consensus is that polyethylene glycol is extraordinarily safe and can be used in babies, the elderly, etc. It can be used for years and years. However, there is some evidence now that it's bad for the environment and probably not as good for people as we thought. I'm ignorant of chemistry, but polyethylene sure sounds like plastic to me.
-If you need fast relief, go to a health food store with a supplement section and buy a bottle of Magnesium Citrate powder. It must be citrate, and it must be powder. Mix 450mg (usually a heaping teaspoon) into a tall glass of water and chug it as fast as you can. Do this on an empty stomach in the morning before breakfast. If your disorder is mild, you will have to take a dump immediately. Don't get in the car to go to work for a little bit. MagCit is extremely safe and effective. Doctors prescribe it to old people for years and years with no side effects. But if you have renal disorders (kidney problems) talk to your doctor before trying this.
I find that MagCit works best for me right before bed. I have to wake up in the middle of the night to pee out all the water I chugged, but in the morning, I generally am able to empty. By the way, MagCit is also an osmotic laxative.
-Request Lactulose from your pharmacy. It's basically a sugar that helps with bowel transit. Didn't work for me, but it works for some.
-Docusate is an OTC stool softener that makes me nauseous and does nothing else, but maybe it'll work for you. MagCit beats its brains out.
-Bisacodyl is your go-to OTC stimulant laxative. In the US it's known as Dulcolax, but there are off-brand boxes that are cheaper and similarly effective. Use this carefully. It can exhaust the muscles in your intestines, so while you get relief one day, the next two days you're in a refractory period where constipation starts up again. Use 10mg 2x per week if you have insanely bad constipation like me. Don't exceed twice per week. Use 5mg if you're underweight. Safe to use with MagCit. I like using it in the morning on an empty stomach and I'll skip breakfast that day. The more food you have in your digestive tract, the longer it takes. Empty stomach = 2-4 hours, full = 8-12. Long-term use is frowned upon but there's no actual evidence whatsoever that it causes a problem. Read the case studies if you don't believe me.
-Amitiza (lubiprostone, prescription): Your doctor might prescribe this first. It's an expensive prescription osmotic laxative. It causes nausea in a lot of people and it didn't work for me, but it's a godsend for some. Try it. Take with a great deal of water. DO NOT TAKE AMITIZA WITH LINZESS, MIRALAX, OR MAGCIT BECAUSE THEY'RE ALL OSMOTICS.
-Linzess / (linaclotide, prescription, "Constella" in Canada): This is the most powerful prescription osmotic that will make your ass explode sixty times in one day the first time you take it. It comes in strengths of 72mcg (that's micrograms), 145, and 290. I have a lot to say about this medication so read carefully. First of all, it has a mild prokinetic effect (meaning it stimulates your nerves) in addition to its osmotic effect. This is a good thing. Amitiza does not have this.
Your digestion is on a schedule. Some of you go every day. Some every other day. Some once a week. Whatever your normal clockwork is, this medication will sometimes work and sometimes not, depending on how much fecal obstruction there is in your intestine on the day. There were times when 290mcg did absolutely nothing for me, and other times 145 made me run wide-eyed to the bathroom fifteen times in thirty minutes. You will figure out how to make this medication work after a lot of trial and error. Don't just dismiss it the moment it doesn't work.
I'm of the mind that no human being should ever take 290mcg and it has got to cause long-term damage to the intestines. But they give it to women a lot for some reason.
Linzess has a penchant for working very well for a few weeks, and then ceasing to work at all. Keep it refrigerated (there's a rumor that it goes bad if it gets warm, but pharmacists will not confirm this). Take it with a large glass of water and stay super hydrated all day. If this medication dehydrates you (it will), grab a bunch of those vitamin/mineral powder packets from the health food store and chug one or two a day. If you get bad headaches/migraines/weak pulse/sweats/nausea, you need to just quit the medication and talk to your doctor. Ask him to reduce the dosage.
Although the prescription for Linzess is once daily, I find it works best for me taken twice per week with another medicine like Motegrity (Prucalopride) or Bisacodyl. I take it on an empty stomach in the morning and don't eat anything until it starts kicking in (which is quite fast...usually under two hours).
LINZESS HAS A BLACK BOX WARNING against its usage in persons under 18. It is extremely dangerous to children. If you don't hydrate enough on a regular basis, it is also dangerous to you. It is illegal to give it to your kids. DO NOT TAKE LINZESS WITH AMITIZA, MIRALAX, OR MAGCIT BECAUSE THEY'RE ALL OSMOTICS.
Motegrity (prucalopride, prescription): This is a brand new drug, the first in its class, and it's a 5-HT4 agonist. It works similar to some antidepressants, by targeting specific serotonin receptors in your intestines. Except Motegrity is a highly specific agonist, meaning it has a narrower range of side effects and typically won't affect your mood. This drug actually works for me, it worked immediately, it still works. Zero side effects. I take it in the morning on an empty stomach, although it can be taken without regard to food.
Most doctors in the US don't even know about Motegrity so ask them to look it up. It's brand new, meaning it's expensive. But don't worry. All of these drugs are insanely expensive. As far as I can tell it is safe to take with osmotics like Linzess but I have not confirmed this with a doctor. In my reading, I see no relevant contraindications between the two.
There is a warning in the box that some people committed suicide or experienced suicidal ideation while participating in clinical studies for Motegrity. There is no statistically significant relationship established here, but the company is by law required to make this information public. Frankly, Motegrity has zero side effects on me, and I expect these people killed themselves or thought about it simply because constipation disorders are fucking horrible and make you depressed.
If you live in the UK, Europe, or Canada, your doctor will know this medication as Resolor or Resotran.
Zelnorm/Zelmac (tegaserod, prescription): This appears to be a promising drug similar to Motegrity but I haven't tried it. Ask your doctor.
Trulance (plecanatide, prescription): This is the main competitor of Linzess (linaclotide) and has a smaller side effect profile. It appears to work pretty well if osmotics work for you, but I haven't tried it. It also has a mild prokinetic effect (meaning it stimulates the nerves in your intestines). I assume, like Linzess, it is also dangerous to children. Give it a try.
Mestinon (pyridostigmine, prescription): This is where it gets weird. Mestinon is a drug that treats myasthenia gravis, which is a nerve disorder similar to MS. But, it can be used to treat constipation in some cases. It's an acetylcholinesterase inhibitor, meaning it increases your body's levels of acetylcholine. This is a neurotransmitter that is partly responsible for telling your intestines to squeeze. Most doctors will be hesitant to put you on it, but you can give it a try if all else fails. It has a strange side effect profile and causes fainting/blood pressure drops in some people. I never tried it.
An interesting story...there is a woman who did a bit of basement chemistry and figured out that she could spike her acetylcholine levels by literally sticking a nicotine patch on her stomach below the belly button. It caused her bowels to empty after a week of constipation. She then invented Parasym Plus, a supplement that allegedly does the same thing. I bought this and I cannot figure out if it actually worked. Maybe it did a little.
There are many acetylcholinesterase-inhibiting drugs on the market. Prostigmin (neostigmine) is one of them. Ask your doctor if he thinks it's a good idea. He'll say it isn't. But if all else fails...
Lexapro (escitalopram oxalate, prescription), or any related SSRI antidepressant: Antidepressants are now being used to treat constipation. Some clever fellow figured out that the majority of serotonin (the mood-regulating neurotransmitter) is manufactured in your intestine, not your brain, and that antidepressants were giving people diarrhea for some reason. I haven't tried Lexapro but it's next on my list and my doctor likes it because of its small side effect profile relative to other antidepressants. This drug has a wider side effect profile than related constipation meds like Motegrity/Tegaserod, meaning you could have mood swings or drops/spikes in energy, etc.
Despite our overwhelmingly negative public opinion about antidepressants, they are rather safe* and effective for many people. It's just that they're over-prescribed. A low dose does help some people normalize bowel function without causing mood/personality changes.
*edit: A redditor linked me to this article explaining that some SSRIs can cause long-term GI problems. The comments are worth reading. As with all pharmaceutical drugs, you are weighing your current problem versus the potential side effects of its treatment. Talk to your doctor about the risks and do your own research. Talk to friends and family members who have taken SSRIs.
Erythromycin: This is an OTC (I believe) antibiotic with a very odd side effect: it speeds up gastric emptying and gut motility. Hooray! The case studies are kind of back and forth on its efficacy for constipation, but some doctors swear by it. The problem is that it's an antibiotic.
Here's the thing about antibiotics. They should not be overused or used unnecessarily. They can seriously devastate your gut flora and cause SIBO and worsen your condition. On the other hand, your condition could have already been caused by antibiotics, or by a pathogen that will killed with antibiotics. Proceed with extreme caution.
EXERCISE
Of all the treatments I've tried, exercise is near the top on the list of effectiveness. Exercise is a conduit for getting all of that stress and potential energy out of your body and away from your guts.
Get a standing desk at work (a good company will accept a doctor's note and buy one for you). Stand for half the day, intermittently. Go on jogs in the morning and walks in the evening. Get to the gym and get your knees above your waist - stairmaster, yoga, squats, etc. Just MOVE MOVE MOVE. By doing so you are stimulating the vagus nerve and increasing motility. You will literally shake the poop out.
If you live an incredibly sedentary life, you will suffer much more.
A few final notes:
-Save yourself the remarkable headache and get physical and digital copies of the results of every single test you have performed, even simple blood tests. When you inevitably get transferred to a different specialist, having this stack of files will make your life so much easier.
-Your insurance company is going to fight you on some of these medications. Tell your doctor to tell your insurance it is an urgent medical necessity that they cover this medication. They will fold.
-Do not give up. DO NOT GIVE UP. Write down your next steps. Follow up on calls, appointments, etc. I keep lists of all my medical to-do's and I cross them off line-by-line. It gives me a great sense of accomplishment and control over this whole situation.
-Relax and get your mind off your condition. This is hard. But there is absolutely a psychological component to your condition. For some people, it's entirely psychological (this is called Chronic Idiopathic Constipation). People who suffered sexual abuse in childhood often develop constipation disorders in adulthood. Google this and investigate it with your doctor!
I go on long nature walks with my headphones. This is how I unwind. Some people do Muay Thai. Some people do music. Spend time with family and engage in your hobbies. This will absolutely help, especially if your condition is idiopathic in nature.
-Intractable constipation is often the result of extreme stress. Have a serious brainstorm about whether you need to quit your high-stress job. Are you in an abusive relationship? GET THE FUCK OUT OF IT. Can you afford a week-long spiritual retreat where you take a vow of silence and eat a vegetarian diet and sit in a garden with a pen and paper? DO IT. Now is the time to try all the weird stuff.
-Cry whenever you have to; don't bottle anything up.
-Talk to other sufferers about it. Reach out and get involved in a community. Support is everything.
Your enemy has a name. You very likely have a lower-GI motility disorder. Once you get your diagnosis, you will not feel so confused and lost about how to treat it. Let me know if you have any questions.
Posted May 29, 2019, 8:46 PM UTC · edited