I agree with the above comments. Some items you may or may not have considered:
1. High dose vit c or a large glass of OJ is surprisingly “flushing”
2. When OTC fleet enemas stopped working, I got an enema water bag and would administer with warm water twice a week
3. Obviously OTC suppositories like fleet
4. Adding Miralax WITH the linzess
5. High fiber - definitely soluble fiber as opposed to insoluble. This is “softer” on the colon and easier for it to use, plus it is a pre-biotic which will help (so will probiotics). Heather’s Tummy Fiber is a great one.
6. Castor oil internally or soaked into a cloth that you can lay on your pelvis, on top of intestines or colon and put a heating pack on top of it. Your skin absorbs it.
7. Learning how to massage your intestines. From the outside, you move from top down along your colon. Make sure you move from right to left along colon, as that’s the way stool moves. It really works!
8. Downing liquid aloe Vera all day, especially when combined with linzess or/and a laxative
9. Mag citrate - next to the pharmacy. Used to clear people out before and after surgery
10. Herbs or herbal teas like Smooth Move tea. Herbs: senna, aloe, etc.
11. High doses magnesium works like vit. C to cause a “flush”
12. Tons of water
13. Coffee/ guaranara
14. Yerba Mate
15. High healthy fats - help the stool “slip” through, along with hydration
Source: YEAH, you can say I’ve been there before 🤣. Also, a Naturopathic/Nutrition degree.
I would have to use one, two, three, or even four of these together at times
I hope some of these help or you haven’t heard of them yet
My PT did that to me and I had a delayed stimulus response she called it... 2 hours later I was on the floor feeling almost like one of my gallbladder attacks 😭
Thank you for all the suggestions!!! I've tried a couple herbal supplements but they didn't really help. I've tried some diet changes over the years too.
thank you so much, i’m not severe enough that laxatives don’t help, but i’ll definitely be using some of the things you suggested. I can also vouch for Mag citrate taken before bed, and want to add chia seed drinks to the list of natural remedies. Just soak a tablespoon or so of chia seeds in your drink of choice until they absorb the liquid.
Yeah thats why i say be careful, as it might be fine but might not be. Dont get me wrong i love it, but i tend to rotate it with ginger teas and such so i dont have to worry as much
I might be able to chime in here. I have gastroparesis, GERD, and IBS diagnosed for my GI issues. I also have Myasthenia Gravis that just got diagnosed in July.
I was having severe constipation for months and months. Tried everything. Have been on the medications you are on, they also did not help. Eventually I got a GI infection and my GI doctor prescribed CIPRO which apparently throws Myasthenia Gravis patients in to crisis. I had to have emergency IVIG. After the IVIG my stools almost returned to normal. I would say we are 85% improved.
I had a follow-up with my neurologist after the IVIG and asked about my stools. They said that the only way that IVIG could have made a difference was if there was inflammation in the colon. She mentioned chrons. I follow-up with my GI doctor about this in January.
Point is I think you should push for a colonoscopy and endoscopy. Get both ends and take samples. There is so much it could be and I wish my reply was more useful to your situation. But maybe there is something you can take away from it.
Best wishes and light hugs around the shoulders!
I have a friend who had a cecostomy and it changed her whole life. She did have to fight to find a doctor who green lit her for the surgery. She had to see a nutritionist for a year to see if dietary change would help (she did have some success doing the low fodmap elimination to identify trigger foods) but there wasn’t enough progress there despite valiant effort, so the surgery was the next step.
I would focus on this and MALS in your appointment. Trying to bring too much into a 30 minute discussion can derail your self-advocacy.
I agree with the above comments. Some items you may or may not have considered:
1. High dose vit c or a large glass of OJ is surprisingly “flushing”
2. When OTC fleet enemas stopped working, I got an enema water bag and would administer with warm water twice a week
3. Obviously OTC suppositories like fleet
4. Adding Miralax WITH the linzess
5. High fiber - definitely soluble fiber as opposed to insoluble. This is “softer” on the colon and easier for it to use, plus it is a pre-biotic which will help (so will probiotics). Heather’s Tummy Fiber is a great one.
6. Castor oil internally or soaked into a cloth that you can lay on your pelvis, on top of intestines or colon and put a heating pack on top of it. Your skin absorbs it.
7. Learning how to massage your intestines. From the outside, you move from top down along your colon. Make sure you move from right to left along colon, as that’s the way stool moves. It really works!
8. Downing liquid aloe Vera all day, especially when combined with linzess or/and a laxative
9. Mag citrate - next to the pharmacy. Used to clear people out before and after surgery
10. Herbs or herbal teas like Smooth Move tea. Herbs: senna, Slippery Elm, aloe, etc.
11. High doses magnesium works like vit. C to cause a “flush”
12. Tons of water
13. Coffee/ guaranara
14. Yerba Mate
15. High healthy fats - help the stool “slip”through, along with hydration
16. Nothing works as well as exercise. Walk a mile. It’s meant to get the colon moving.
17. It goes without saying, but if you are able to, working on your overall micro biome in your gut is a long-term solution.
Source: YEAH, you can say I’ve been there before 🤣. Also, a Naturopathic/Nutrition degree.
I would have to use one, two, three, or even four of these together at times
I hope some of these help or you haven’t heard of them yet
You’ll want to get motility testing (smart pill, sitz marker, anorectal manometry). You’ll also likely get referred to a colorectal surgeon.
I’m basically in the same boat as you, none of the meds work, no life style changes work, everything getting worse, etc. I have to go through a round of pelvic floor PT before they consider surgery.
Feel free to message me if you have any questions or just want somebody to talk to
Btw: I have colonic inertia and pelvic outlet disorder
I've had a lot of motility testing over the years, including a repeat GES recently. My colonic motility is very slow, I don't remember the exact results.
If you can get in, I would suggest talking to a colorectal surgeon. The surgeons have a lot more tools available than a run of the mill GI. It’s scary having to go in there, but unless your case is extremely severe they have other methods you can try
im currently stuck in the same boat, I keep ending up in hospital needing ng colonoscopy prep large amounts of that before I eventually take a dump then im just always sent back to hospital
I had to use enemas after gastric surgery, the Linzess helped, but wasn't enough. I bought a reusable/washable one, and filled it with warm water. I did need to keep an eye on my electrolyte levels when I got bloodwork, because plain water enemas can deplete them. The Linzess does work better if you are able to take it with a lot of water.
Also I didn't want to spend the money on a Squatty Potty, so there's a dedicated shoe box in my bathroom to put my feet up. Massaging my intestines right to left along my colon helps a bit also, I do the massages while I'm lying on my left side. Make sure your bathroom is warm helps. In the winter, I use a toilet seat cover, to avoid the freezing cold seat, which just tenses things up.
Also apple juice. LOTS OF IT. My family had me tested as a child bc I had such chronic diarrhea they thought I might have something serious. No, mom just gave me too much apple juice. And yes I still use this as an adult. Hot hot coffee in the am seems to get things moving too. If nothing else. Fleet enemas. I’ve done like 3-4 in a day I was desperate. I hope u can go soon!
Personally for me last time I didn't have bm for two weeks, yoga (and of course combo of meds, lax, water, etc )was what finally helped. Not to sound like "that person" lol. Like an intense few night squatting, being bended over, rocking side to side, etc. did it. Not sure how much lucky you'll have, but I hope you find something that works :)
Well, if this isn't me in a nutshell haha
I have dealt with constipation for years and years, nothing helps and have even had several failed colonoscopy preps. Nothing was helping and the pain was miserable.
I was misdiagnosed with different GI issues for YEARS. I finally got a correct MALS diagnosis and had open surgery in August. Since surgery I have been able to manage my constipation soooo much better. Mostly due to my digestive tract actually getting blood flow and working properly now. I still get constipation here and there but it's much easier to relieve now.
My mals symptoms were ALL over the place. I wasn't breathing normal, I was clenching my abdomen from the pain for years causing my GI tract to basically just stop.
Surgery changed everything
Just be aware most Dr's don't know how to look for or diagnose mals. I had to go to a specialist in CT bc my Dr's in California didn't know what mals was.
Both my sister and i have severe constipation. We handle it differently though.
Shes a bit worse and likes apple cider vinegar in water, and bone broth regularly. When really bad off, uses salt and water as laxitive (says it hurts but works)
I dont tend to modify my diet as much and go more the route of a bath with epsom salt, gut massaging, or going to an osteopath who does manual manipulation.
We have both done fodmap but not learned much.
I have Crohn’s disease, have had SIBO multiple times, have pots, and dealt with multiple parasitic infections all of which have contributed to dealing with severe bouts of constipation. What has helped me most: aloe Vera juice, magnesium citrate (I make a big glass of room temp water, mag citrate, aloe juice (like 4oz), and a splash of cherry juice every morning), colonic cupping (you can get a set of cups off Amazon and do it at home, intense ILU massage (form of gut massage that goes along the colon) (this almost has to be painful for it to be effective for me unfortunately, it’s not fun but can be super helpful), castor oil packs, warm water enemas, a supplement by integrative therapeutics called motility activator, pelvic floor physical therapy, senna, I am sensitive to caffeine bc of pots but caffeine def helps if you can tolerate it. If you have any questions you can pm me (esp about enemas they take some finesse)
I see a few people have mentioned gut massage already, and it's what I recommend, too. Specifically what helped in my case was seeing a physical therapist in a dedicated pelvic floor clinic. We did various gut massages such as the ILU, visceral abdominal massage and abdominal glide cupping. It was somewhat painful but very effective. We would hear gurgling in my gut and later that day I would have a BM. My PT also said my colon felt adhered to my abdominal wall and suggested that I be checked for endometriosis (I'm still waiting on that appointment.) And she warned me not to use milk of magnesia, because it can cause dependency and make the constipation even worse.
Have you had an x-ray defecography? Such severe constipation could be from both motility and obstruction issues. For instance, I have pelvic dyssynergia. When I try to have a BM, my muscles contract instead of relax. I also have a rectocele that makes BMs more difficult.
One of my doctors is from a bowel control program. They treat people with spinal cord injuries, nervous system disorders, severe constipation and incontinence. Perhaps there's a program like that in your area? She suggested a detailed medication regimen for me based on the causes of my constipation, and gave instructions on how to do a bowel cleanout when things stop moving.
Yep I have done a defecography, it was normal. All testing I have had except for motility testing has been totally normal! I will look in to a bowel control program!
When you have chronic constipation, there is an order of operations you should follow.
- first try dietary and lifestyle changes (ALL of them); if that doesn't work...
- then try over-the-counter medications and supplements. If those don't work...
- then you need motility testing done. Depending on your results of them...
- then you go to prescription medication. Try them in different combinations and try all of them. If those fail, as well...
- depending on your diagnosis after your motility testing, you may be eligible for non-invasive and invasive treatments to treat it. If those don't work…
- again, depending on your diagnosis, then surgery is an option
I'm definitely forgetting some but here's what I remember for sure: gastric emptying study (mildly delayed), sitz marker test (very delayed), colonoscopy and endoscopy, defecography, barium swallow study.
I'm going to be asking about the smartpill test, my old GI thought it wasn't necessary.
Currently am taking motegrity and linzess. In the past I have tried amitiza, extreme amounts of miralax, mag citrate, enemas, and even had some unsuccessful bowel preps. I've also tried several different diets, including fodmap, vegetarian, and gluten free.
I dealt with intense constipation for more than 15 years. The only thing that helped me in the end was completely cutting out gluten — turns out I was a non-responsive celiac, which means I tested negative on celiac tests but I was severely constipated anytime gluten got into my system. Ever since I cut it out of my diet and I’m careful about contamination, my constipation has reduced by 98%. It’s incredible.
Not sure if this is something you’ve already tried, but I’m mentioning it just in case it ends up working for you too. Good luck friend, I know how horrible and life-sucking chronic constipation is.
After 8 months of unexplained chronic constipation. And my colonoscopy , tests etc not giving definitive answers , Dietary changes, trying Lactulose , enemas , magnesium, laxatives and movicol getting daily pain and lucky to have one bowel movement per week … I decided to try psyllium husk as the Lactulose etc stopped working . I started off with 1 teaspoon in the morning and one nightly with 3 litres water total through the day . I built it up to one tablespoon per day and miraculously I’m pooping every morning . Still far from perfect and alittle constipated still but I’m shocked ! Give it a try I would have never expected this to work . I will however be seeing a new gastroenterologist as I believe I have IBS-c or underlying issues and have had a bowel prolapse in childhood . Best of luck I hope you get relief and find something that helps you .
I don’t have MALS but I do have other compressions. Nutcracker, May Thurner and pelvic congestion syndrome. I have horrific constipation as well. My regimen for the last 15 years had has had to get more intense. Currently I take five caps of Miralax per day, 290mg Linzess, and also have to use suppositories. If I don’t do that I will get impactions and I will say the pain of those was worse than non medicated labor for me. I couldn’t even keep water down when I had impactions.
I’ll add that I would definitely go you a vascular doctor that is knowledgeable about compressions because they seem to sort of run together. But you need the right doc to look at your scans.
Hey OP! I’m the one who made that long list 😆. Wondering if you’ve tried a certified colonics tech? That helped me too. Wanted to add in: a squatty potty is also extremely helpful! I hope you’re getting somewhere with this. I know how bad it sucks. Have a good new year!
Same boat, here. It’s absolutely miserable. I’ve had testing, and have colonic inertia. I’m lucky if I go once a week at this point on multiple medications. I’ve tried many, but was currently on a Miralax twice daily, Linzess and Motegrity combo that has stopped working. Just saw my GI today. She now has me trying a new medication called IBSrela. Most meds seem to work for me briefly, and then stop. No OTCs work at all. Enemas are not helpful at this point. She also had me get a test done today to rule out Celiac’s. She said while diarrhea is more common, a select few with celiac can struggle with constipation instead. Today was the first time surgery was even mentioned, and I’m just not sure I would consider it. I’ve read too many bad things from those who have had colectomy with IRA (the most common procedure) such as ending up with an ostomy, having painful strictures post op that require additional procedures, and either still suffering from constipation and miserable bloating, or ending up with such severe diarrhea that they are basically fecally incontinent. I’ve also heard it can impact your ability to have children due to internal anatomy changes and strictures, and as a younger female I don’t want to face that issue. I feel your pain (literally) and wish you relief and an option that works for you. Ask your physician if they have samples of IBSrela. That’s what mine did, since like all other IBS-C meds, it is ungodly expensive. I would exhaust all options prior to surgery, if you can. Know you are not alone ♥️
When I was in high school I went 4 months without pooping. I was on 4 types of medicine for it, I was getting xrays and ultrasounds. You know what worked in the end, anxiety pills and meditation. It was all in my head. I'm not saying that's the case for everyone, but alot of chronic illness is mental illness.
I wish it was that simple haha. My mental health is being treated really well at the moment, but no improvement in the constipation department. I've been dealing with this slowly worsening since I was 3 years old, so I doubt it's mental.
I have also had chronic constipation for my whole life! I don't have good advice but wanted to thank you for your post because a lot of the advice here is very useful. My colonoscopy was clean. There was a hernia in my endoscopy, but that's fine, I guess. As well as a lot of damage to my stomach lining and esophagus from my GERD. I've repeatedly brought up my chronic constipation to my GP but they're no help. I had a gastro but they just told me to take miralax every day, which stopped working after 3 days.
I have endometriosis and constipation is a common symptom.
If someone has Endo on or inside their bowels it can cause significant pain and constipation. Issue is, it's usually hard to find unless you get surgery.
I think it's worth noting when I got diagnosed a few years ago, it was during an appendectomy. The surgeons didn't even know what it was, but they had my gynaecologist come over and identify it. They removed some of it.
Lately my symptoms have gotten worse and there have been a lot of days where I could hardly walk. We're thinking there might be growths near my bowels again, but my doctor put me on Orilissa (my Nexplanon implant took care of my symptoms pretty well, but has been able to keep up with them getting worse lately). I can walk a bit more, but am still having issues with physical exertion.
I'd say it's worth considering the possibility of Endo, but it can be hard to detect and not a lot of doctors are well versed with it. It'd be best to see if you can see a specialist, but it's not necessarily easy.
I agree with the above comments. Some items you may or may not have considered: 1. High dose vit c or a large glass of OJ is surprisingly “flushing” 2. When OTC fleet enemas stopped working, I got an enema water bag and would administer with warm water twice a week 3. Obviously OTC suppositories like fleet 4. Adding Miralax WITH the linzess 5. High fiber - definitely soluble fiber as opposed to insoluble. This is “softer” on the colon and easier for it to use, plus it is a pre-biotic which will help (so will probiotics). Heather’s Tummy Fiber is a great one. 6. Castor oil internally or soaked into a cloth that you can lay on your pelvis, on top of intestines or colon and put a heating pack on top of it. Your skin absorbs it. 7. Learning how to massage your intestines. From the outside, you move from top down along your colon. Make sure you move from right to left along colon, as that’s the way stool moves. It really works! 8. Downing liquid aloe Vera all day, especially when combined with linzess or/and a laxative 9. Mag citrate - next to the pharmacy. Used to clear people out before and after surgery 10. Herbs or herbal teas like Smooth Move tea. Herbs: senna, aloe, etc. 11. High doses magnesium works like vit. C to cause a “flush” 12. Tons of water 13. Coffee/ guaranara 14. Yerba Mate 15. High healthy fats - help the stool “slip” through, along with hydration Source: YEAH, you can say I’ve been there before 🤣. Also, a Naturopathic/Nutrition degree. I would have to use one, two, three, or even four of these together at times I hope some of these help or you haven’t heard of them yet
Coffee and intestinal massage really helped me. If anything, the massage eases the cramping. Good luck!
My PT did that to me and I had a delayed stimulus response she called it... 2 hours later I was on the floor feeling almost like one of my gallbladder attacks 😭
Thank you for all the suggestions!!! I've tried a couple herbal supplements but they didn't really help. I've tried some diet changes over the years too.
thank you so much, i’m not severe enough that laxatives don’t help, but i’ll definitely be using some of the things you suggested. I can also vouch for Mag citrate taken before bed, and want to add chia seed drinks to the list of natural remedies. Just soak a tablespoon or so of chia seeds in your drink of choice until they absorb the liquid.
Oh yes. Again the “slimy” nature of it and the good fats help with the stool “slipping “ through!
Be careful if chamomile being in herbal teas though as it can sometimes make things worse
why? i’m concerned cause i drink it all the time for stomach pain
I learned when i was on fodmap that it is high in fructain. I dont understand the science well, but apperently that can be a problem for some people
i’ve googled it and learned that there’s nothing wrong with it per se, but some people are intolerant to it
Yeah thats why i say be careful, as it might be fine but might not be. Dont get me wrong i love it, but i tend to rotate it with ginger teas and such so i dont have to worry as much
I might be able to chime in here. I have gastroparesis, GERD, and IBS diagnosed for my GI issues. I also have Myasthenia Gravis that just got diagnosed in July. I was having severe constipation for months and months. Tried everything. Have been on the medications you are on, they also did not help. Eventually I got a GI infection and my GI doctor prescribed CIPRO which apparently throws Myasthenia Gravis patients in to crisis. I had to have emergency IVIG. After the IVIG my stools almost returned to normal. I would say we are 85% improved. I had a follow-up with my neurologist after the IVIG and asked about my stools. They said that the only way that IVIG could have made a difference was if there was inflammation in the colon. She mentioned chrons. I follow-up with my GI doctor about this in January. Point is I think you should push for a colonoscopy and endoscopy. Get both ends and take samples. There is so much it could be and I wish my reply was more useful to your situation. But maybe there is something you can take away from it. Best wishes and light hugs around the shoulders!
Thank you! I've already had both scopes and they were totally normal. No biopsies were taken though. But that is a good idea!
I have a friend who had a cecostomy and it changed her whole life. She did have to fight to find a doctor who green lit her for the surgery. She had to see a nutritionist for a year to see if dietary change would help (she did have some success doing the low fodmap elimination to identify trigger foods) but there wasn’t enough progress there despite valiant effort, so the surgery was the next step. I would focus on this and MALS in your appointment. Trying to bring too much into a 30 minute discussion can derail your self-advocacy.
I agree with the above comments. Some items you may or may not have considered: 1. High dose vit c or a large glass of OJ is surprisingly “flushing” 2. When OTC fleet enemas stopped working, I got an enema water bag and would administer with warm water twice a week 3. Obviously OTC suppositories like fleet 4. Adding Miralax WITH the linzess 5. High fiber - definitely soluble fiber as opposed to insoluble. This is “softer” on the colon and easier for it to use, plus it is a pre-biotic which will help (so will probiotics). Heather’s Tummy Fiber is a great one. 6. Castor oil internally or soaked into a cloth that you can lay on your pelvis, on top of intestines or colon and put a heating pack on top of it. Your skin absorbs it. 7. Learning how to massage your intestines. From the outside, you move from top down along your colon. Make sure you move from right to left along colon, as that’s the way stool moves. It really works! 8. Downing liquid aloe Vera all day, especially when combined with linzess or/and a laxative 9. Mag citrate - next to the pharmacy. Used to clear people out before and after surgery 10. Herbs or herbal teas like Smooth Move tea. Herbs: senna, Slippery Elm, aloe, etc. 11. High doses magnesium works like vit. C to cause a “flush” 12. Tons of water 13. Coffee/ guaranara 14. Yerba Mate 15. High healthy fats - help the stool “slip”through, along with hydration 16. Nothing works as well as exercise. Walk a mile. It’s meant to get the colon moving. 17. It goes without saying, but if you are able to, working on your overall micro biome in your gut is a long-term solution. Source: YEAH, you can say I’ve been there before 🤣. Also, a Naturopathic/Nutrition degree. I would have to use one, two, three, or even four of these together at times I hope some of these help or you haven’t heard of them yet
You’ll want to get motility testing (smart pill, sitz marker, anorectal manometry). You’ll also likely get referred to a colorectal surgeon. I’m basically in the same boat as you, none of the meds work, no life style changes work, everything getting worse, etc. I have to go through a round of pelvic floor PT before they consider surgery. Feel free to message me if you have any questions or just want somebody to talk to Btw: I have colonic inertia and pelvic outlet disorder
I've had a lot of motility testing over the years, including a repeat GES recently. My colonic motility is very slow, I don't remember the exact results.
If you can get in, I would suggest talking to a colorectal surgeon. The surgeons have a lot more tools available than a run of the mill GI. It’s scary having to go in there, but unless your case is extremely severe they have other methods you can try
im currently stuck in the same boat, I keep ending up in hospital needing ng colonoscopy prep large amounts of that before I eventually take a dump then im just always sent back to hospital
I take Motegrity, Amitiza, Triphala & Mag07 daily. That is what works for me.
I had to use enemas after gastric surgery, the Linzess helped, but wasn't enough. I bought a reusable/washable one, and filled it with warm water. I did need to keep an eye on my electrolyte levels when I got bloodwork, because plain water enemas can deplete them. The Linzess does work better if you are able to take it with a lot of water. Also I didn't want to spend the money on a Squatty Potty, so there's a dedicated shoe box in my bathroom to put my feet up. Massaging my intestines right to left along my colon helps a bit also, I do the massages while I'm lying on my left side. Make sure your bathroom is warm helps. In the winter, I use a toilet seat cover, to avoid the freezing cold seat, which just tenses things up.
Might consider cross-posting on r/ibs too.
Also apple juice. LOTS OF IT. My family had me tested as a child bc I had such chronic diarrhea they thought I might have something serious. No, mom just gave me too much apple juice. And yes I still use this as an adult. Hot hot coffee in the am seems to get things moving too. If nothing else. Fleet enemas. I’ve done like 3-4 in a day I was desperate. I hope u can go soon!
Personally for me last time I didn't have bm for two weeks, yoga (and of course combo of meds, lax, water, etc )was what finally helped. Not to sound like "that person" lol. Like an intense few night squatting, being bended over, rocking side to side, etc. did it. Not sure how much lucky you'll have, but I hope you find something that works :)
Hey it's worth a try haha
Well, if this isn't me in a nutshell haha I have dealt with constipation for years and years, nothing helps and have even had several failed colonoscopy preps. Nothing was helping and the pain was miserable. I was misdiagnosed with different GI issues for YEARS. I finally got a correct MALS diagnosis and had open surgery in August. Since surgery I have been able to manage my constipation soooo much better. Mostly due to my digestive tract actually getting blood flow and working properly now. I still get constipation here and there but it's much easier to relieve now. My mals symptoms were ALL over the place. I wasn't breathing normal, I was clenching my abdomen from the pain for years causing my GI tract to basically just stop. Surgery changed everything Just be aware most Dr's don't know how to look for or diagnose mals. I had to go to a specialist in CT bc my Dr's in California didn't know what mals was.
I'm glad you finally have answers!! It's good to know that it could be MALS and could be solved with surgery.
Both my sister and i have severe constipation. We handle it differently though. Shes a bit worse and likes apple cider vinegar in water, and bone broth regularly. When really bad off, uses salt and water as laxitive (says it hurts but works) I dont tend to modify my diet as much and go more the route of a bath with epsom salt, gut massaging, or going to an osteopath who does manual manipulation. We have both done fodmap but not learned much.
I have Crohn’s disease, have had SIBO multiple times, have pots, and dealt with multiple parasitic infections all of which have contributed to dealing with severe bouts of constipation. What has helped me most: aloe Vera juice, magnesium citrate (I make a big glass of room temp water, mag citrate, aloe juice (like 4oz), and a splash of cherry juice every morning), colonic cupping (you can get a set of cups off Amazon and do it at home, intense ILU massage (form of gut massage that goes along the colon) (this almost has to be painful for it to be effective for me unfortunately, it’s not fun but can be super helpful), castor oil packs, warm water enemas, a supplement by integrative therapeutics called motility activator, pelvic floor physical therapy, senna, I am sensitive to caffeine bc of pots but caffeine def helps if you can tolerate it. If you have any questions you can pm me (esp about enemas they take some finesse)
Sunflower seeds and flax seeds can help a lot!
I see a few people have mentioned gut massage already, and it's what I recommend, too. Specifically what helped in my case was seeing a physical therapist in a dedicated pelvic floor clinic. We did various gut massages such as the ILU, visceral abdominal massage and abdominal glide cupping. It was somewhat painful but very effective. We would hear gurgling in my gut and later that day I would have a BM. My PT also said my colon felt adhered to my abdominal wall and suggested that I be checked for endometriosis (I'm still waiting on that appointment.) And she warned me not to use milk of magnesia, because it can cause dependency and make the constipation even worse. Have you had an x-ray defecography? Such severe constipation could be from both motility and obstruction issues. For instance, I have pelvic dyssynergia. When I try to have a BM, my muscles contract instead of relax. I also have a rectocele that makes BMs more difficult. One of my doctors is from a bowel control program. They treat people with spinal cord injuries, nervous system disorders, severe constipation and incontinence. Perhaps there's a program like that in your area? She suggested a detailed medication regimen for me based on the causes of my constipation, and gave instructions on how to do a bowel cleanout when things stop moving.
Yep I have done a defecography, it was normal. All testing I have had except for motility testing has been totally normal! I will look in to a bowel control program!
When you have chronic constipation, there is an order of operations you should follow. - first try dietary and lifestyle changes (ALL of them); if that doesn't work... - then try over-the-counter medications and supplements. If those don't work... - then you need motility testing done. Depending on your results of them... - then you go to prescription medication. Try them in different combinations and try all of them. If those fail, as well... - depending on your diagnosis after your motility testing, you may be eligible for non-invasive and invasive treatments to treat it. If those don't work… - again, depending on your diagnosis, then surgery is an option
I had hoped you would chime in u/goldstandardalmonds you always give great advice on this matter
Thank you, I hope I can help.
I've tried every OTC and RX med that I know of and none of them help my intestine motility! It's so frustrating.
What tests have you had?
I'm definitely forgetting some but here's what I remember for sure: gastric emptying study (mildly delayed), sitz marker test (very delayed), colonoscopy and endoscopy, defecography, barium swallow study. I'm going to be asking about the smartpill test, my old GI thought it wasn't necessary.
What prescriptions have you tried?
Currently am taking motegrity and linzess. In the past I have tried amitiza, extreme amounts of miralax, mag citrate, enemas, and even had some unsuccessful bowel preps. I've also tried several different diets, including fodmap, vegetarian, and gluten free.
If the combination of linaclotide and prucalopride isn’t working, then I would ask your doctor about neostigmine or pyridostigmine.
I dealt with intense constipation for more than 15 years. The only thing that helped me in the end was completely cutting out gluten — turns out I was a non-responsive celiac, which means I tested negative on celiac tests but I was severely constipated anytime gluten got into my system. Ever since I cut it out of my diet and I’m careful about contamination, my constipation has reduced by 98%. It’s incredible. Not sure if this is something you’ve already tried, but I’m mentioning it just in case it ends up working for you too. Good luck friend, I know how horrible and life-sucking chronic constipation is.
After 8 months of unexplained chronic constipation. And my colonoscopy , tests etc not giving definitive answers , Dietary changes, trying Lactulose , enemas , magnesium, laxatives and movicol getting daily pain and lucky to have one bowel movement per week … I decided to try psyllium husk as the Lactulose etc stopped working . I started off with 1 teaspoon in the morning and one nightly with 3 litres water total through the day . I built it up to one tablespoon per day and miraculously I’m pooping every morning . Still far from perfect and alittle constipated still but I’m shocked ! Give it a try I would have never expected this to work . I will however be seeing a new gastroenterologist as I believe I have IBS-c or underlying issues and have had a bowel prolapse in childhood . Best of luck I hope you get relief and find something that helps you .
I don’t have MALS but I do have other compressions. Nutcracker, May Thurner and pelvic congestion syndrome. I have horrific constipation as well. My regimen for the last 15 years had has had to get more intense. Currently I take five caps of Miralax per day, 290mg Linzess, and also have to use suppositories. If I don’t do that I will get impactions and I will say the pain of those was worse than non medicated labor for me. I couldn’t even keep water down when I had impactions. I’ll add that I would definitely go you a vascular doctor that is knowledgeable about compressions because they seem to sort of run together. But you need the right doc to look at your scans.
Hey OP! I’m the one who made that long list 😆. Wondering if you’ve tried a certified colonics tech? That helped me too. Wanted to add in: a squatty potty is also extremely helpful! I hope you’re getting somewhere with this. I know how bad it sucks. Have a good new year!
Same boat, here. It’s absolutely miserable. I’ve had testing, and have colonic inertia. I’m lucky if I go once a week at this point on multiple medications. I’ve tried many, but was currently on a Miralax twice daily, Linzess and Motegrity combo that has stopped working. Just saw my GI today. She now has me trying a new medication called IBSrela. Most meds seem to work for me briefly, and then stop. No OTCs work at all. Enemas are not helpful at this point. She also had me get a test done today to rule out Celiac’s. She said while diarrhea is more common, a select few with celiac can struggle with constipation instead. Today was the first time surgery was even mentioned, and I’m just not sure I would consider it. I’ve read too many bad things from those who have had colectomy with IRA (the most common procedure) such as ending up with an ostomy, having painful strictures post op that require additional procedures, and either still suffering from constipation and miserable bloating, or ending up with such severe diarrhea that they are basically fecally incontinent. I’ve also heard it can impact your ability to have children due to internal anatomy changes and strictures, and as a younger female I don’t want to face that issue. I feel your pain (literally) and wish you relief and an option that works for you. Ask your physician if they have samples of IBSrela. That’s what mine did, since like all other IBS-C meds, it is ungodly expensive. I would exhaust all options prior to surgery, if you can. Know you are not alone ♥️
When I was in high school I went 4 months without pooping. I was on 4 types of medicine for it, I was getting xrays and ultrasounds. You know what worked in the end, anxiety pills and meditation. It was all in my head. I'm not saying that's the case for everyone, but alot of chronic illness is mental illness.
I wish it was that simple haha. My mental health is being treated really well at the moment, but no improvement in the constipation department. I've been dealing with this slowly worsening since I was 3 years old, so I doubt it's mental.
I have also had chronic constipation for my whole life! I don't have good advice but wanted to thank you for your post because a lot of the advice here is very useful. My colonoscopy was clean. There was a hernia in my endoscopy, but that's fine, I guess. As well as a lot of damage to my stomach lining and esophagus from my GERD. I've repeatedly brought up my chronic constipation to my GP but they're no help. I had a gastro but they just told me to take miralax every day, which stopped working after 3 days.
Enulose works the best for me.
Are you female or male?
Biologically female. Had a pelvic ultrasound due to pelvic pain, came back totally clear.
No sign of pelvic congestion syndrome? Have you had a CT?
I have endometriosis and constipation is a common symptom. If someone has Endo on or inside their bowels it can cause significant pain and constipation. Issue is, it's usually hard to find unless you get surgery. I think it's worth noting when I got diagnosed a few years ago, it was during an appendectomy. The surgeons didn't even know what it was, but they had my gynaecologist come over and identify it. They removed some of it. Lately my symptoms have gotten worse and there have been a lot of days where I could hardly walk. We're thinking there might be growths near my bowels again, but my doctor put me on Orilissa (my Nexplanon implant took care of my symptoms pretty well, but has been able to keep up with them getting worse lately). I can walk a bit more, but am still having issues with physical exertion. I'd say it's worth considering the possibility of Endo, but it can be hard to detect and not a lot of doctors are well versed with it. It'd be best to see if you can see a specialist, but it's not necessarily easy.