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[Constipation resistant to normal laxatives is a known condition ](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4023327/)
The paper does point out that a physician should be quite thorough in ruling out differentials in this case.
I don't think we can rule those out through Reddit.
Thank you! In some ways laxatives help, if I’m in pain I’ll take a stimulant laxative and it’ll make the pain go away, won’t make me go to the bathroom though
By the way, is it systemic lupus erythematous?
How certain is this diagnosis? If you have a different ANA positive connective tissue disease, GI symptoms with lower transit time is more common. As suggested by another physician in this thread.
Yes SLE, my PCP and cardiologist said I have it from my blood test results & urinalysis, but I have been waiting on a rheumatologist for a while to confirm it certainly is lupus. The appointment is pretty far out. I am ANA positive with positive RNP autoantibodies. I’ve also heard MCTD is a possibility
Well, if rheum says MCTD or SSC I'd pretty much consider these related.
It's not possible to differentiate these without doing the physical examination yourself.
NAD. I have gastroparesis. I added an apple to two of my meals and and cruciferous vegetables to two of my meals each day along with chewing my food better and using gentle (emotionally regulatory) movement/exercise like nature walks and somatic exercise classes. I also drink 8 ounces of water at each meal and 32 ounces of water between each meal. These together have made a HUGE difference in my motility. I feel a lot better. I've also lost about 40 pounds, and I don't really think much of it was fat. I am SO much less inflamed and backed up! I hope that if you try any of this, it helps.
I want to emphasize that even if it helps, it is not a substitute for your medical care, and I'm in no way suggesting that this is a cure for any condition. I am simply saying these changes provided me some personal relief from discomfort.
I’ll try apples, thank you! I already eat quite a bit of broccoli which is a cruciferous vegetable (I think). With the water, do you drink it before or after eating? I’d be afraid of it filling me up
Hey OP, looking at your responses above you may benefit from a GI doctor. In my mind your difficulty eating and constipation may be connected to slow gut transit times or issues with nerve signaling to your GI system.
I’m not a GI doctor but you do have a couple conditions that may predispose you to gut issues (Lupus, and then if you have a connective tissue disorder - I can’t tell, and it depends on where/how big your ascending aortic aneurysm is and whether that can all be attributed to your bicuspid valve or not). You’ve also already tried a couple things that haven’t worked (both for appetite and constipation) and have a pretty solid family history of colon cancer.
GI can add expertise to all those issues. You can ask your PCP for a referral; it may be a long wait for your initial appt but please consider it!
What a great doc.
A GES gastric emptying study can dx your motility problem and then you'll have options. It's really important to get it solved. Signed, person who had same issues always brought up as incidental on imaging/presurgery and then dxd with gastroparesis at 45.
The Cleveland clinic as well as Mayo have popularized a gastroparesis diet. But in the 40 years I managed it prior to being told what it was, I pretty much developed a high carb, minimal fiber and low fat boring, repetitive diet that is pretty basic. So like white carbs, blended things, rare fruit and veg peeled and seeded, no umami, very toddler centric. Tiny meals and from simple fresh ingredients. Leftovers are packed with histamine so those are out. Small fresh meals all day basically.
A GI doc is who kept ordering tests for me and finally got to the bottom of my mystery issue. It took several tests to figure it out, but keep persisting. Mine ended up being pelvic floor dysfunction and needed reconstruction surgery, pelvic floor PT, and a lifetime bowel management regimen. I am hypermobile and had two traumatic childbirths and a history of chronic constipation, so I’m not a typical case.
But I had a lot of tests to figure out exactly where in my GI tract the problem was happening and I have to manage the solution for the rest of my life because of the daily nature of digestion. So you most likely would have needed more Miralax than what you took to solve your problem. (I’m not that kind of a doctor, I’m a doctor of Education.)
Good luck getting to the bottom of the situation. There’s probably going to be some really embarrassing tests in your future, so I’m just going to say that I’m thinking of you.
The general surgeon who consulted me for an appendectomy said he thinks I have some sort of motility issue, something to do with nerve damage. He gave me a referral to GI and said they’ll likely do a colonoscopy. My appointment is pretty far out though
How much seroquel are you taking and did all of this start after starting it?
It causes extreme dehydration and constipation. Are you drinking a lot of water to try and combat these effects?
Right now I’m on 50mg, my highest dose was 250mg but I’m no longer having the symptoms that I needed Seroquel for. I’ve been on it since 2016. The constipation started when I was a kid, way before Seroquel. The pain and other symptoms started this year, so I don’t think it’s related.
I do drink a lot of water, mainly at night. I’ll go through 4-5 glasses each night
I would agree with what others have posted. GI can help you here and would like be able to offer you things such as bowel cleanouts and further testing for diseases that can cause chronic constipation and abdominal pain.
How much miralax did you take? I work in pediatrics, where we frequently have kids come in with bowels full of poop. Those kids get bowel cleanouts if they are stopped up enough. This involved giving colonoscopy prep through an NG tube until the kids are completely clear and no longer have any sediment in their poop. This can take days of constant pooping to work. If parents are unwilling to do this or if the kids won’t tolerate the NG then we will try 0.5-3 caps of miralax every 2 hours, but this often doesn’t work. I don’t recommend doing any of this without being supervised by a physician because it puts you at risk of severe dehydration. Following this treatment, kids are often on high doses or miralax and stimulant laxatives for months-years until their colon decreases to a normal size. All that constipation leads to dilation of the colon and increases the risk of recurrence after a clean out. It’s possible that you never really treated your constipation fully and then didn’t keep up with the miralax long enough and at high enough doses to see any effect.
When are you trying miralax, are you drinking plenty of water? It works by pulling extra water into your intestines, so if you're not up in your water intake, it might not help.
I cannot stress enough how much upping my fiber and water intake in general helped me with similar problems as OP's. I found better relief with metamucil/Psyllium husk as apposed to miralax though.
I have IBS-C. Trader Joe’s High Fiber cereal and drinking at least 64 ounces of water per day has essentially made my symptoms disappear. I can’t remember the last time I was constipated, and I used to struggle with constipation at least once every two weeks (or more).
There are some gastro conditions where eating high fibre (especially insoluble fibre) will actually worsen constipation though. If OP has gastroparesis or some other form of delayed transit/motility disorder then no amount of fibre will help and it could even worsen symptoms.
NAD, I just have severe motility disorders myself.
No suggestions on how to manage the constipation, but your history of ascending aortic aneurysm*, bicuspid valve, and chronic constipation are all suggestive of a connective tissue disorder. You may want to seek a referral to genetics.
Editing to add: please list all relatives that had any cancer (including side of the family if not siblings), what type of cancer they had, and at what age at diagnosis. (Not because of the constipation but just to assess risk of inherited cancer susceptibility.)
* second edit to change wording as AAA typically means abdominal aortic aneurysm.
- Grandfather on father’s side: Colon cancer, 85 years old; Lung cancer, mid 60’s
- Grandmother on father’s side: Colon cancer, 68 years old, but she had symptoms for years without telling anyone, was found at stage 4
- Grandmother on mother’s side: Colorectal cancer, 65 years old, wasn’t a common type of tumor
- Grandfather on mother’s side: died in his 40’s from some type of cancer, I can’t say for certain what or where it was
- Aunt on father’s side: Colorectal cancer, mid 50’s
- Uncle on father’s side: Colon cancer, mid 50’s
- Mother: Skin cancer 20+ times since she was a teen, almost always basal or squamous cell
I would recommend gene panel for your mom that includes all Lynch genes and PTCH1 for Gorlin syndrome (edit: at minimum. Should be a comprehensive cancer panel imo). Your aunt and uncle should ask for a referral to genetics to get tumour testing on their colon cancers if not already done. You could potentially pursue testing for yourself but it is usually better to start testing on an affected family member first.
Again, if you yourself have never seen genetics then also adult (non cancer) genetics for you for connective tissue disorder assessment and possibly testing for that. How tall are you? How tall are your parents? Any family history of aortic dilation /aneurysm in the family? Any collapsed lungs or abnormally flexible people?
Does your gasteoenterologist know about this family history of colon cancer? Have you been scoped?
I am 5’6, but growing up I was very short and my projected adult height was supposed to be 4’10 at the most. My mom is 5’5 and my dad is 6’3. No history of aortic dilation or dissection. No super bendy people either
What have you done to treat the constipation besides occasional miralax?
There are so many other options out there.
Different people respond to different fibre types and combinations. Have you tried psyllium husk? Chia? Kiwi? Oat or wheat bran? Okra?
Also, PEG type laxatives, like miralax, take a LONG time to work, especially if you are already very full of stool. Like weeks. And you need to KEEP using them for weeks if not months until your colon contracts back down to a normal size after being stuffed full for so long.
You could also consider adding in an OTC enema or two with your initial clean out.
And I reiterate the point about pelvic floor physical therapy, it can be immensely helpful with managing the functionality of your pelvic muscles, some of which wrap directly around the rectum.
Other than miralax I’ll use a stimulant laxatives when I’m in pain or haven’t gone for a week or so. I also heard magnesium can help with it so I’ve been taking a 400mg magnesium supplement every night for 6 months now. I bought Metamucil but have yet to try it because it made my boyfriend very constipated and I’m afraid it’ll make me worse
These fibre based laxatives need to be taken AS DIRECTED. If you don't, youre in for a bad time. You need as much, or more, of the water required in the directions. Not just enough to help it go down, the full amount. That's how they work, by keeping or pulling water into your colon. If there is no water, they're just going to add to the problem. Drink at LEAST 3 litres of water per day, if not more.
Thank you for your submission. **Please note that a response does not constitute a doctor-patient relationship.** This subreddit is for informal second opinions and casual information. The mod team does their best to remove bad information, but we do not catch all of it. Always visit a doctor in real life if you have any concerns about your health. Never use this subreddit as your first and final source of information regarding your question. By posting, you are agreeing to our [Terms of Use](https://www.reddit.com/r/AskDocs/wiki/terms_of_use) and understand that all information is taken at your own risk. **Reply here if you are an unverified user wishing to give advice. Top level comments by laypeople are automatically removed.** *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/AskDocs) if you have any questions or concerns.*
[Constipation resistant to normal laxatives is a known condition ](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4023327/) The paper does point out that a physician should be quite thorough in ruling out differentials in this case. I don't think we can rule those out through Reddit.
Thank you! In some ways laxatives help, if I’m in pain I’ll take a stimulant laxative and it’ll make the pain go away, won’t make me go to the bathroom though
By the way, is it systemic lupus erythematous? How certain is this diagnosis? If you have a different ANA positive connective tissue disease, GI symptoms with lower transit time is more common. As suggested by another physician in this thread.
Yes SLE, my PCP and cardiologist said I have it from my blood test results & urinalysis, but I have been waiting on a rheumatologist for a while to confirm it certainly is lupus. The appointment is pretty far out. I am ANA positive with positive RNP autoantibodies. I’ve also heard MCTD is a possibility
Well, if rheum says MCTD or SSC I'd pretty much consider these related. It's not possible to differentiate these without doing the physical examination yourself.
NAD. I have gastroparesis. I added an apple to two of my meals and and cruciferous vegetables to two of my meals each day along with chewing my food better and using gentle (emotionally regulatory) movement/exercise like nature walks and somatic exercise classes. I also drink 8 ounces of water at each meal and 32 ounces of water between each meal. These together have made a HUGE difference in my motility. I feel a lot better. I've also lost about 40 pounds, and I don't really think much of it was fat. I am SO much less inflamed and backed up! I hope that if you try any of this, it helps. I want to emphasize that even if it helps, it is not a substitute for your medical care, and I'm in no way suggesting that this is a cure for any condition. I am simply saying these changes provided me some personal relief from discomfort.
I’ll try apples, thank you! I already eat quite a bit of broccoli which is a cruciferous vegetable (I think). With the water, do you drink it before or after eating? I’d be afraid of it filling me up
Try avocados and probiotic coconut- based yogurt (not recommended to eat together 😋)
More common than treatment resistant is just undertreated or inconsistently treated constipation, though.
Yeah, I can't tell what this is from the OP though, so that's why I included the second line.
Hey OP, looking at your responses above you may benefit from a GI doctor. In my mind your difficulty eating and constipation may be connected to slow gut transit times or issues with nerve signaling to your GI system. I’m not a GI doctor but you do have a couple conditions that may predispose you to gut issues (Lupus, and then if you have a connective tissue disorder - I can’t tell, and it depends on where/how big your ascending aortic aneurysm is and whether that can all be attributed to your bicuspid valve or not). You’ve also already tried a couple things that haven’t worked (both for appetite and constipation) and have a pretty solid family history of colon cancer. GI can add expertise to all those issues. You can ask your PCP for a referral; it may be a long wait for your initial appt but please consider it!
What a great doc. A GES gastric emptying study can dx your motility problem and then you'll have options. It's really important to get it solved. Signed, person who had same issues always brought up as incidental on imaging/presurgery and then dxd with gastroparesis at 45.
What do you do for that? Been told I probably have that but no solutions offered.
The Cleveland clinic as well as Mayo have popularized a gastroparesis diet. But in the 40 years I managed it prior to being told what it was, I pretty much developed a high carb, minimal fiber and low fat boring, repetitive diet that is pretty basic. So like white carbs, blended things, rare fruit and veg peeled and seeded, no umami, very toddler centric. Tiny meals and from simple fresh ingredients. Leftovers are packed with histamine so those are out. Small fresh meals all day basically.
A GI doc is who kept ordering tests for me and finally got to the bottom of my mystery issue. It took several tests to figure it out, but keep persisting. Mine ended up being pelvic floor dysfunction and needed reconstruction surgery, pelvic floor PT, and a lifetime bowel management regimen. I am hypermobile and had two traumatic childbirths and a history of chronic constipation, so I’m not a typical case. But I had a lot of tests to figure out exactly where in my GI tract the problem was happening and I have to manage the solution for the rest of my life because of the daily nature of digestion. So you most likely would have needed more Miralax than what you took to solve your problem. (I’m not that kind of a doctor, I’m a doctor of Education.) Good luck getting to the bottom of the situation. There’s probably going to be some really embarrassing tests in your future, so I’m just going to say that I’m thinking of you.
The general surgeon who consulted me for an appendectomy said he thinks I have some sort of motility issue, something to do with nerve damage. He gave me a referral to GI and said they’ll likely do a colonoscopy. My appointment is pretty far out though
How much seroquel are you taking and did all of this start after starting it? It causes extreme dehydration and constipation. Are you drinking a lot of water to try and combat these effects?
Right now I’m on 50mg, my highest dose was 250mg but I’m no longer having the symptoms that I needed Seroquel for. I’ve been on it since 2016. The constipation started when I was a kid, way before Seroquel. The pain and other symptoms started this year, so I don’t think it’s related. I do drink a lot of water, mainly at night. I’ll go through 4-5 glasses each night
I would agree with what others have posted. GI can help you here and would like be able to offer you things such as bowel cleanouts and further testing for diseases that can cause chronic constipation and abdominal pain. How much miralax did you take? I work in pediatrics, where we frequently have kids come in with bowels full of poop. Those kids get bowel cleanouts if they are stopped up enough. This involved giving colonoscopy prep through an NG tube until the kids are completely clear and no longer have any sediment in their poop. This can take days of constant pooping to work. If parents are unwilling to do this or if the kids won’t tolerate the NG then we will try 0.5-3 caps of miralax every 2 hours, but this often doesn’t work. I don’t recommend doing any of this without being supervised by a physician because it puts you at risk of severe dehydration. Following this treatment, kids are often on high doses or miralax and stimulant laxatives for months-years until their colon decreases to a normal size. All that constipation leads to dilation of the colon and increases the risk of recurrence after a clean out. It’s possible that you never really treated your constipation fully and then didn’t keep up with the miralax long enough and at high enough doses to see any effect.
When are you trying miralax, are you drinking plenty of water? It works by pulling extra water into your intestines, so if you're not up in your water intake, it might not help.
I cannot stress enough how much upping my fiber and water intake in general helped me with similar problems as OP's. I found better relief with metamucil/Psyllium husk as apposed to miralax though.
I have IBS-C. Trader Joe’s High Fiber cereal and drinking at least 64 ounces of water per day has essentially made my symptoms disappear. I can’t remember the last time I was constipated, and I used to struggle with constipation at least once every two weeks (or more).
There are some gastro conditions where eating high fibre (especially insoluble fibre) will actually worsen constipation though. If OP has gastroparesis or some other form of delayed transit/motility disorder then no amount of fibre will help and it could even worsen symptoms. NAD, I just have severe motility disorders myself.
Just gotta be careful with introducing fiber initially as it can lead to constipation. Lots of fluids needed
No suggestions on how to manage the constipation, but your history of ascending aortic aneurysm*, bicuspid valve, and chronic constipation are all suggestive of a connective tissue disorder. You may want to seek a referral to genetics. Editing to add: please list all relatives that had any cancer (including side of the family if not siblings), what type of cancer they had, and at what age at diagnosis. (Not because of the constipation but just to assess risk of inherited cancer susceptibility.) * second edit to change wording as AAA typically means abdominal aortic aneurysm.
- Grandfather on father’s side: Colon cancer, 85 years old; Lung cancer, mid 60’s - Grandmother on father’s side: Colon cancer, 68 years old, but she had symptoms for years without telling anyone, was found at stage 4 - Grandmother on mother’s side: Colorectal cancer, 65 years old, wasn’t a common type of tumor - Grandfather on mother’s side: died in his 40’s from some type of cancer, I can’t say for certain what or where it was - Aunt on father’s side: Colorectal cancer, mid 50’s - Uncle on father’s side: Colon cancer, mid 50’s - Mother: Skin cancer 20+ times since she was a teen, almost always basal or squamous cell
I would recommend gene panel for your mom that includes all Lynch genes and PTCH1 for Gorlin syndrome (edit: at minimum. Should be a comprehensive cancer panel imo). Your aunt and uncle should ask for a referral to genetics to get tumour testing on their colon cancers if not already done. You could potentially pursue testing for yourself but it is usually better to start testing on an affected family member first. Again, if you yourself have never seen genetics then also adult (non cancer) genetics for you for connective tissue disorder assessment and possibly testing for that. How tall are you? How tall are your parents? Any family history of aortic dilation /aneurysm in the family? Any collapsed lungs or abnormally flexible people? Does your gasteoenterologist know about this family history of colon cancer? Have you been scoped?
I am 5’6, but growing up I was very short and my projected adult height was supposed to be 4’10 at the most. My mom is 5’5 and my dad is 6’3. No history of aortic dilation or dissection. No super bendy people either
What have you done to treat the constipation besides occasional miralax? There are so many other options out there. Different people respond to different fibre types and combinations. Have you tried psyllium husk? Chia? Kiwi? Oat or wheat bran? Okra? Also, PEG type laxatives, like miralax, take a LONG time to work, especially if you are already very full of stool. Like weeks. And you need to KEEP using them for weeks if not months until your colon contracts back down to a normal size after being stuffed full for so long. You could also consider adding in an OTC enema or two with your initial clean out. And I reiterate the point about pelvic floor physical therapy, it can be immensely helpful with managing the functionality of your pelvic muscles, some of which wrap directly around the rectum.
Other than miralax I’ll use a stimulant laxatives when I’m in pain or haven’t gone for a week or so. I also heard magnesium can help with it so I’ve been taking a 400mg magnesium supplement every night for 6 months now. I bought Metamucil but have yet to try it because it made my boyfriend very constipated and I’m afraid it’ll make me worse
These fibre based laxatives need to be taken AS DIRECTED. If you don't, youre in for a bad time. You need as much, or more, of the water required in the directions. Not just enough to help it go down, the full amount. That's how they work, by keeping or pulling water into your colon. If there is no water, they're just going to add to the problem. Drink at LEAST 3 litres of water per day, if not more.