# Introduction



## nikki-m (Dec 14, 2018)

Hello! I'm Nikki and I have been suffering from chronic constipation for pretty much my entire life (my mother was instructed to give me miralx at 2 days old). I am currently 26 years old, and the condition has only been worsening with time. For years, most doctors told me that my problems/symptoms were in my head, including 3 gastroenterologists so I am incredible frustrated at the moment. I currently have an amazing gastro doctor who actually did tests (sitzmark study and an anorectal manometry), which of course showed that I have slow colonic motility and pelvic floor dysfunction.

My symptoms are chronic constipation (incomplete emptying, very hard stools, could sometimes go two weeks without a bowel movement), feeling stool move through my bowels, bloating/distention directly after meals, daily abdominal pain, SIBO (did the breath test and was treated with xifaxan and neomycin which did nothing), multiple food allergies. I lost a tremendous amount of weight from Feb 2018-May 2018 (I'm 5'5" and went from 112 pounds to 96 pounds very quickly because every time I eat I have a stomach ache).

Since the doctors at that point could not find anything physically wrong with me, my parents were convinced I was anorexic and forced me into eating disorder based counseling. Of course this did nothing because I do not have an eating disorder - I want to eat foods, but I am sick for a week if I eat a food I am allergic to or something I can't tolerate. At this point I am basically eating chicken, beef, lamb, spinach, pureed pumpkin, olive oil and macadamia nuts. These seem to be the only foods I can tolerate, which is of course very depressing (pretty much Low FODMAP and SCD). I miss pizza and pasta and fruit! The constipation of course causes me extreme anxiety and I think my depression has stemmed from the constipation as well.

I have tried Trulance, which did not work for me it only made me worse, so I have refused to try Linzess and Amitizia because anything that brings water into my intestines only exacerbates my symptoms. Miralax is my worst enemy. Currently, I am using OxyPowder which is basically a glorified stool softener, and even after that I can only have a bowel movement after a cup of coffee. Even then, the bowel movement is not complete.

I have also been diagnosed with Lead Poisoning, hypothyroidism, and a homozygous MTHFR mutation, which of course is not helping the situation. I pretty much suffer every single day of my life and I feel as if I have no life because it is controlled by my symptoms, which no one understands. Luckily I have a job that I love so I am able to get out of bed and leave the house every day, but it is a struggle and I am miserable most of the time.

This is just the abbreviated version of my story. I am joining this board just looking for people who understand because most people, my family included, do not. My parent's have been making fun of me/yelling at me for years because "if doctor's can't find anything wrong, you must want to just be sick."

I am frustrated and angry that no other gastro has done the sitzmark study/anorectal manometry and that it's taken years to get to this point. I am going to start physical theraphy/biofeedback for the pelvic floor dysfunction, but I am skeptical.


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## annie7 (Aug 16, 2002)

hi nikki and welcome to the board.

you most definitely are not alone. there are a lot of us on here who understand what you're going through.

and so sorry for all of your problems. living with chronic constipation is truly miserable.

i'm also so sorry that you've had such terrible doctors telling you that this is "all in your head". that's terrible!!! chronic C is most definitely NOT all in one's head, as all the tests you finally had prove. and good for your current gastro for ordering these tests.

and shame on your parents, too, for their terrible attitude. they should be helping you and supporting you through all this.

i've had chronic constipation since childhood. the docs kept telling me it was ibs-c but after doing some reading and research i began to suspect it was more complicated than that so i went to a good gastro doc and had the sitz marker test done as well as a defecogram and an anal manometry. i didn't have a bm at all during the entire sitz test so of course didn't pass any of the markers. and yes, like you said in your other post, it's a thoroughly miserably wretched test. i failed the defecogram. and the manometry also showed pelvic floor dysfunction and rectal hyposensitivity. i, too, could not push that balloon out--i couldn't even feel it in there, even when inflated to the max.

since none of the constipation meds like amitiza and linzess worked for me, my gastro doc told me to take laxatives daily to help me go. i took a combination of stimulant and osmotic laxatives.

there is a new constipation med called prucalopride which is going to be approved by the fda later this month. what makes prucalopride special is that it's a high affinity selective serotonin type 4 (5-HT4) receptor agonist--a prokinetic med that stimulates colonic peristalsis, increasing bowel motility. it's so much different than amitiza, linzess and trulance. it doesn't just add fluid to the bowel like the other meds do. it actually stimulates peristalsis. for those of us who remember zelnorm, it's similar to zelnom, but with a better safety profile. when prucalopride becomes available, tell your gastro that you'd like to try it. it might help you.

https://www.ibsgroup.org/forums/topic/348977-fda-accepts-new-drug-application-for-prucalopride-for-cic/

hypothryroidism can cause C, too. hopefully your doc pust you on thryroid meds. they can help.

and yes, about biofeedback. because i was dx'd with pfd, my gastro sent me to physical therapy/ biofeedback training. i went through two eight week sessions of it. i also bought a home biofeedback machine so i could practice daily at home as well. because i'd had problems for so many years, it took a long time for my muscles to unlearn that "tight muscle memory" i finally did learn how to relax my pelvic floor muscles. but i never was able to learn how to coordinate them properly.

good luck to you. wishing you all the best.


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## nikki-m (Dec 14, 2018)

Hi annie7

Thank you for replying. Yes, I am on meds for the hypothyroidism and they have not done anything for my constipation symptoms though it has helped some of my other hypo symtoms - my hair has stopped falling out and the bald spots have filled in so I am absolutely ecstatic about that! My hair also looks a lot fuller and actually has some body to it!

I am sorry to hear all that you have gone through as well - it seems like we have both had it really rough. During the anorectal manometry I could feel the balloon as it was being inflated - I don't have the exact test results yet (my gastro has them) so I don't know how long it took for me to feel the balloon/the size of the balloon when I was actually able to feel it.

I am very excited to hear about prucalopride and I hope that it become available soon after it gets approved by the FDA. I also hope that my gastro would be willing to let me try it. When I read about it, my first thought was wow, this might be able to help me. The thought of surgery terrifies me, but if it can improve my quality of life, I would be willing to meet with a surgeon, but we are not there yet. My gastro doctor is not one to recommend surgery unless it is absolutely necessary.

I'm very skeptical about the biofeedback because of what you mentioned, the "tight muscle memory" - I have been having issues since very early childhood, and I feel PFD and slow motility is just not a good combination. I also don't know if biofeedback would do anything to impact the slow motility. That's a questions for my gastro, who I see again on 12/19.


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## annie7 (Aug 16, 2002)

sorry the hypothyroid meds didn't help your C but that's great that you hair stopped falling out and that the bald spots have filled in.

yes, do try prucalopride. a lot of people here on the board are really looking forward to trying it. it's been available in other countries for a few years and i've read a lot of success stories.

do give biofeedback a try. it can't hurt--it might help you. i really don't think it has any impact on the slow motility, though. that's a colon problem--something to do with the interstitial cells of cajal affecting the muscle contractions and peristalsis.

well, very long story short, i did finally end up having surgery since the laxatives stopped working well for me and started making me feel kind of sick. i went to my gastro doc and told him i had had enough and told him i was going to talk to a colorectal surgeon about ostomy surgery. i now have an ileostomy. my quaility of life is much better now. but yes, that's definitely a surgery of last resort. you want to be sure to try everything else first.


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## flossy (Dec 8, 2012)

Hi nikki-m -

Sorry to hear about all your constipation (etc.) woes, but you've come to the right place.

You should try to have a BM at least once a day. I recommend you take something every day to help you go. Click on below link to read:

'Finally! A product I can recommend'

http://www.ibsgroup.org/forums/topic/239065-finally-a-product-i-can-recommend/

Good luck & keep us posted!


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## nikki-m (Dec 14, 2018)

hi flossy

I had never heard of the intestinal formula before, so thank you for recommending it! I am currently taking four oxypowder pills (from the global healing center) every night, and it has been allowing me to go to the bathroom, and it has minimal side effects. It is the only laxative type product that has ever worked for me, so I am quite grateful for it. It only works after a cup of coffee in the morning though!


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