r/ConstipationAdvice • u/ihopeurwholelifesux • 27d ago
any ideas?
i have been dealing with worsening constipation since last october. i was kind of managing with miralax and then more miralax + senna, then this slowly stopped helping and everything seemingly stopped working suddenly around the end of july (never any cramping, very minimal bruise-y pain, no urge, minimal hunger - literally just feels like nothing is happening in there).
i tried various combinations of lactulose, more senna, miralax clear out, bisacodyl + suppositories, glycerin suppositories, oil enemas, saline enemas, and a full 4L colyte prep (my x-ray fecal load was worse after) and kept having increasingly watery diarrhea but entire colon stayed full of stool. all of the osmotics, once i hit the dose where they did anything, felt close to the same - i just ended up with almost-clear diarrhea that i could barely make it to the washroom for and loud sloshing belly noises when moving around but no actual relief. i have had a rectal exam and my doctor confirmed there’s no impaction there, stool is just sitting higher up in my colon.
i now have started prucalopride (1mg, 2mg gave me an unbearable headache) and had 2 days of closer-to-normal bowel movements for the first time since mid august, but now am back to what feels like insignificant diarrhea. and i still feel awful, maybe worse. my belly hasn’t been majorly bloated this whole time but the side on my left felt, and still feels, pretty much rock hard.
my family doctor consulted a gi and he said he thinks i have developed slow colon transit and there is essentially nothing else he can recommend to do other than taking the prucalopride and a fiber supplement. my doctor is really nice and open to trying things but has said she’s out of ideas and hasn’t had another patient with constipation like this before.
i am seeing my neurologist soon and will be asking her to help refer me to the gi motility testing clinic but i have heard the wait time will be long. my doctor ordered a ct and that’s booked for february.
is there anything else i could look into and ask about in the meantime? i really feel awful :( i have had to discontinue my pain and nausea medications that i really needed for my other conditions because they could make this worse.
i am 24 and diagnosed with ehlers danlos and a spinal csf leak. i am in bed most of the time unfortunately because of the csf leak but i try to walk as much as i can when i am able.
answers to questions:
- no urge at all unmedicated. with the prucalopride i have had a few random cramps but it’s still very minimal.
- just constipation (without laxatives).
- some nausea and regurgitation but this mostly went away with a PPI.
- began after a transvenous procedure under general anesthesia, in adulthood. i had very very very severe intermittent deep abdominal pain 2 days out from the procedure and an ultrasound did not show anything. eventually it went away on its own so i never got an explanation for that. i have never ever ever struggled with constipation before this.
- have been prescribed zofran and low dose opioids on and off in the past year but never taking them more than once or twice a week. now haven’t taken either since july. no other meds with gi effects.
- no sexual abuse.
i hope it’s ok to post here with this technically being my first time experiencing constipation - i didn’t find the other subreddit very helpful since it’s mostly generally healthy people.
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u/goldstandardalmonds 27d ago
Yes. You do need FULL motility testing.
Fibre makes motility disorders worse. PPIs, zofran, and opioids can make it much worse (which you know). There are several on label and a handful of off label prescription meds you can try with Prucalopride or in place of. Is that something you can ask your docs for ?
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u/ihopeurwholelifesux 27d ago
I mentioned that I think adding fibre will make the situation worse but she asked if I can please give it a chance anyway since it was the GI’s only other suggestion and we should be trying everything… do you think it’s safe enough to do it for a few days just to say I tried? 😅
Yeah I think my doctor would be willing to prescribe other meds I’m just not sure what to ask for!
Any chance you know whether the motility clinic in Calgary does full testing? Totally ok if you don’t have that info, I just haven’t been able to find much about it and want to make sure I’m asking for what I need.
We talked about coming back off the PPI (i’ve only been on it less than a month but i don’t really think I need it) and she said it’s not a big deal and up to me if I want to stop so I’ll go ahead with that
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u/goldstandardalmonds 27d ago
Yeah. I think it’s fine to appease her and give it a go. Can you link the clinic so I can check out what they offer? Then I can answer that question more accurately
Other meds that are on label include Constella, Trulance, Ibsrela, and Amitzia. The first, second and fourth are sort of the same, but Ibsrela is different. There are off label options if these don’t work, and often people have a combination of them.
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u/ihopeurwholelifesux 27d ago
Thanks so much :) It’s this one: https://cumming.ucalgary.ca/research/motility/calgary-gut-motility-clinic
it looks like maybe there’s no way to get ibsrela in canada anymore? i will ask about the others!
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u/goldstandardalmonds 26d ago
Oh! I didn’t know that. I tried it a couple years ago, or maybe last year, but it didn’t work for me.
Given this section I would think they are pretty thorough there: https://cumming.ucalgary.ca/research/motility/gut-motility-disorders
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u/External-Classroom12 24d ago
Anorectal manometry. Then pending results purculopride and pelvic floor therapy.
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u/ihopeurwholelifesux 23d ago
post is asking for ideas I can ask about during the wait to get motility testing, but that’s on me for not including a TLDR :’)
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u/External-Classroom12 23d ago edited 23d ago
The treatment for dysenergetic defecation is pelvic floor therapy. There’s plenty you can do now to help yourself. My therapist had me do yt video for pelvic floor meditations every morning. Those are easy to do laying down. Look up videos on diaphramatic breathing. Engaging the diaphragm helps move things along. Also plenty of videos on pelvic floor dysfunction on yt that you can do while you wait for testing. There are also stomach massage techniques that you can do to promote movement. You can also find those on YT. Pelvic floor therapy is not a miracle it’s just exercises, breathing techniques that you can do to help. Use a squatty potty as the position helps.
I also have sibo, fiber like physillium husk makes my constipation worse, like eating a brick no movement. I can eat some fiber. I can’t do steal cut oats, but I do fine with glyphosate free sprouted rolled oats one degree. I have not been able to tolerate any powdered supplement.
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u/ihopeurwholelifesux 23d ago
Can I ask what the indicators are for dyssynergic defecation? my rectal exam was normal and the stool is all in the colon on scans - it seems like dyssynergic defecation causes it to be trapped further down and require a lot of straining to pass? i will look into it some more though and check those out on youtube. i appreciate you taking the time to comment!
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u/External-Classroom12 15d ago
Rectal exam or anorectal manometry, it’s not the same. With the manometry test the stick probe and ask you do some pushing. The main thing at the end they put a small balloon and you have to poop it out. If you can’t they take it out but you failed. Symptoms are constipation, incomplete evacuation. Treatment is pelvic floor pt with biofeedback. Usually purculopride to help you go.
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15d ago
[deleted]
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u/ihopeurwholelifesux 15d ago
I’m alive! ended up having to go up to the 2mg prucalopride dose and just deal with the awful side effects but it seems to have finally started working the last couple days (also still doing 2 caps miralax daily but stopped fibre). my belly is still very hard and uncomfortable so I don’t think we’ve really gotten to the root of the issue, but it’s doing enough to keep things from getting dangerous for now.
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15d ago
[deleted]
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u/External-Classroom12 15d ago
Have you tried eating kiwi?
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u/havnter 15d ago
Nah but I figured what can I kiwi do for me at this point fr
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u/External-Classroom12 15d ago
It helps me. I only eat one, but two is suppose to make you go also yellow dragon fruit.
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u/ihopeurwholelifesux 14d ago
if it’s too high up for manual disimpaction, the ER will likely just want you to keep trying miralax clear out or colonoscopy prep
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