HELP! Severe Constipation and P.O.T.S.

Posted by smlofton @smlofton, Aug 4 4:30pm

My daughter just turned 20 and she has been dealing with chronic constipation for at least three years now. She has seen multiple doctors and has been diagnosed with IBS w/constipation. She also has P.O.T.S. and we know gastro issues are major with this syndrome. She has only ever had x-rays done, showing she is completely backed up. She has recently started seeing a new specialist that finally, after being drilled by mom & answering with "I don't know", has ordered a colonoscopy 7 weeks from now. My daughter is lucky to have any type bowel movement once every two to three weeks but when she does it's a minute amount of liquid. Her longest span between movements is two months on numerous occasions. Never with a complete movement that helps her feel empty, usually she is on the toilet for an hour with no movement at all. She has been on so many medicines from Miralax 3x daily for eight months, multiple Miralax cleanses, Lenzess (all 3 dosage levels), Amitiza (THE WORST!), Trulance, Magnesium Citrate cleanses three times, all of these produce the same result…very little liquid amounts or a very little amount of "rabbit pallets". Her primary tried curing her with a 2 week regimen of Linzess 290 1x daily, 4 Senokot-S laxatives (2 in am, 2 in pm), and a bottle of magnesium citrate at the beginning of the 2 weeks with a 2nd bottle at the end of the 2 weeks because all of this produced nothing! She has had several instances where she has thrown up bile. She's gone to the ER with severe abdominal pain where they sent her home with the "sure fire antidote" of mineral oil and an eye roll for coming in for constipation. She has had so many blood tests I'm surprised she still has any. We have been asked numerous times if she's ever had a scope done, but no one offers to order one when notified she hasn't had one. They are giving her Sutab for her colonoscopy prep. I have no faith that after years of constipation and medicine trials this prep will get the job done for her to have the procedure but we will wait the two months to have them tell us it can't be done because she's not cleaned out. She is so tired of trial and error medicines and being consistently nauseous and in pain. I am scared to death we will end up in the ER with a bowel obstruction or picture her intestines slowly dying because this is all her body has know for the last several years. Are there any suggestions or recommendations out there that can help us stop feeling helpless like we're sitting around waiting on something to happen that will be irreversible….

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Hello @smlofton and welcome to Mayo Clinic Connect. I can tell this has been increasingly frustrating for both your daughter as well as you as her mother. It is great to hear you finally got a colonoscopy ordered for her!

In the meantime, the prep seems to be the next hurdle. I wonder if she has actively included gut health measures into her lifestyle, aside from medications/prescriptions? Some examples include prebiotics and probiotics as well as a high quality liquid collagen. Here is some additional information that you may find helpful.

Prebiotics and Probiotics:
https://www.mayoclinic.org/prebiotics-probiotics-and-your-health/art-20390058
Has gut health supplements and/or gut healthy food like fermented foods been included?

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I'm very surprised that none of these health "professionals" have suggested an enema. Not the little 4oz kind you buy at the drug store. The real thing, with the bag and rubber hose. I'm also very surprised that no one has done a CT scan when she comes to the ER puking green bile. When that happens to me, it's a sure sign of a blockage.
I have Crohn's disease and have been down this road many times. What type of medical facility is treating her ?
Try to get her to a teaching hospital that is affiliated with a Medical School. These are only my opinions, based on my personal experience. Good luck to you.

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@amandajro

Hello @smlofton and welcome to Mayo Clinic Connect. I can tell this has been increasingly frustrating for both your daughter as well as you as her mother. It is great to hear you finally got a colonoscopy ordered for her!

In the meantime, the prep seems to be the next hurdle. I wonder if she has actively included gut health measures into her lifestyle, aside from medications/prescriptions? Some examples include prebiotics and probiotics as well as a high quality liquid collagen. Here is some additional information that you may find helpful.

Prebiotics and Probiotics:
https://www.mayoclinic.org/prebiotics-probiotics-and-your-health/art-20390058
Has gut health supplements and/or gut healthy food like fermented foods been included?

Jump to this post

Thank you for responding! She has done probiotics/prebiotics but we’ve never heard anything about liquid collagen or any type “gut health” specific regimes. This is something we will definitely look into!

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I am sorry to hear of your daughter's severe constipation. I struggle with constipation myself, but not as severe as your daughter's. I have no medical training but wonder if she has adhesions or a redundant colon or other issues that might slow things down to produce only pellets.
I don't see that anyone has asked about what your daughter eats and drinks in a typical day. Might that have some relevance?
Is she living independently? How is she able to function?

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I'm going through this now and it's like no one takes it serious. I have to do enema. I've been to ER.
I cope with medical PTSD so sedation isn't something I could get into fast I know they can do it without it however I've shed colon lining from the inflammation and all that dysfunction. Regular Co2 air colonoscopy may be risky for perforation so I'm being referred to water emersion colonoscopy, they gently use water instead of air pumped into colon to view. It has a better advantage to see inside. I don't know, maybe you can consider this, best part is you don't have to be sedated. Minnesota has one doctor and south Carolina, that's it that I'm aware of.
I've also tried everything to clear out, I cannot. I also have parasites so until I find someone that cares I don't know what to do. This could be my culprit or is there a blockage of some sort of just to much inflammation. One thing to look into is pelvic floor dysfunction, I just learned about this and it totally makes sense to cause constipation and there is a cure✨. Good luck to y'all

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@jcarndt

I'm very surprised that none of these health "professionals" have suggested an enema. Not the little 4oz kind you buy at the drug store. The real thing, with the bag and rubber hose. I'm also very surprised that no one has done a CT scan when she comes to the ER puking green bile. When that happens to me, it's a sure sign of a blockage.
I have Crohn's disease and have been down this road many times. What type of medical facility is treating her ?
Try to get her to a teaching hospital that is affiliated with a Medical School. These are only my opinions, based on my personal experience. Good luck to you.

Jump to this post

Thank you for your response! We have been quite surprised at a lot of what we have gotten. Her PCP tried a few treatments but pretty quickly sent her to a specialist. That specialist actually told us not going for two weeks was normal ??? He then gave us three different medications at once stating the first would work and she would never make it to the final option. After 6 weeks of trials with no true BM we switched her back to Children's Hospital, feeling they were treating her constipation as an elderly person where the issue becomes normal, not the 16 year old she was. We stuck with the doctor at Children's & the many trial medications for a few years. Looking back through chart notes, where he wrote completely opposite notes of what was being told to him, we realize this was wasted time. This is when we switched to another specialist. Our first appointment with him she was sent home with acid reflux medicine for the throwing up. This was after stressing to him she goes up to two months without a BM. I specifically asked about a blockage and he said usually like 80% of the time that is not what the issue is…no medical reason or test to rule it out, just that it's not usually the answer. By the 2nd appt & being sent home with the same meds she had been on & no answers that's when I asked how long her body could continue to go 2mths at a time and her be okay?! And that's when he said "I don't know" and ordered an X-ray. This was the first "test" she had had since the first X-ray in 2019. They listen to her & agree everything is very slow moving and can see she is backed up but nothing but bloodwork is ever done. I know it's going to take us getting the right doctor but trial and error with multiple ones is so tiring on her and frustrating to me! Sorry for the information overload, it just gets overwhelming! We will continue our journey of looking for a doctor to listen as well as act and pray we haven't wasted too much time. Thanks for the input & luck!

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@notmoff

I am sorry to hear of your daughter's severe constipation. I struggle with constipation myself, but not as severe as your daughter's. I have no medical training but wonder if she has adhesions or a redundant colon or other issues that might slow things down to produce only pellets.
I don't see that anyone has asked about what your daughter eats and drinks in a typical day. Might that have some relevance?
Is she living independently? How is she able to function?

Jump to this post

I have just recently read about redundant colon from this site and have wondered as well. We know her POTS can be associated with the constipation due to it affecting her nervous system but due to the POTS she has to stay extremely hydrated and keeping a healthy diet helps with it as well. She is able to function day to day but its a constant array of symptoms from nausea, cramping, always feeling full but not eating much. She has days her abdomen is hard as a rock but its not crazily extended.

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