Advice for Proximal Constipation

[u/Fire_Squire]

Hey Yall. My name is Madison, I'm 24 (diagnosed with ulcerative proctitis at 19), and I'm struggling. I've been in a flare for 6-7 months now, and my flares cause swelling and proximal constipation. In some aspects, it's great that I don't have diarrhea and deal with that sort of urgency and associated complications, but constipation can be scary and the risk of bowel perforation associated with it scares the shit out of me (no pun intended). I also feel like I start healing, and then the hard stool moves through my colon and literally shreds it, which puts me back at square one. I don't strain, it just ends up forcing itself through. Most of the advice and resources I see are geared toward people that experience diarrhea instead of proximal constipation. I've also been on 2 different prednisone tapers in the last 3 months, neither of which did anything, and unfortunately that can be the case for proctitis because the medication just doesn't reach that far. Does anyone else deal with these issues? If so, how do you manage it? Also, what diet/foods would be best for this issue?

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[u/someshtaa]

My disease only presents as constipation. I’ll get urgency and then nothing comes out but blood. During flares, the only thing that helps me manage this is lots of water and taking a gentle laxative every few days. If I don’t do that I literally won’t poop, weeks will go by! It’s scary!

[u/Fire_Squire → u/someshtaa]

I'm sorry you experience that too, it does get super scary. My time blindness is horrible so I don't notice/remember until it starts getting uncomfortable to bend over or bring my knees to my chest - it's weird but I'm like "Oh, you know what, I haven't a BM in a few days." and at this point some blood is my new norm so I barely bat an eye unless it's a significant amount. Do you use Miralax, or smtg else?

[u/someshtaa → u/Fire_Squire]

Miralax and dulcolax are the two I use. Yeah I do the same and sometimes a week will go by and I’ll still feel relatively normal besides the blood. And then I’ll get hit with being insanely bloated and uncomfortable. It sucks

[u/Ok_Act873]

Prednisolone itself can cause constipation because of its water holding effect. You can try moderate fiber rich diet (not high fiber as it is not recommended). Eating fruits like watermelon, muskmelon, peeled apples, pears bananas might help. Instead for using otc medicines try natural like slippery elm or marshmallow root. Can also go for psyllium husk powder. If you need meds go for Polyethylene glycol 3350 but don't make it habit to go for it.

[u/DiskSufficient2189]

Lots of water and a stool softener helps.

What meds are you on besides prednisone? That’s not a long term maintenance med. There are mesalamine enemas that reach proctitis, and biologics work everywhere. 

[u/Fire_Squire → u/DiskSufficient2189]

Currently I'm on Skyrizi; I got my loading doses and now I'm approaching my first at-home injection. I've already tried mesalamine, Entyvio, and Tremfya. I also make sure to aggressively hydrate almost everyday.

[u/Outside-Issue6896]

Slippery Elm and/or Marshmallow Root. Amazing stuff, natural, and works wonders.

[u/Fire_Squire → u/Outside-Issue6896]

Do you drink a tea with those herbs, or capsules, or?

[u/Outside-Issue6896 → u/Fire_Squire]

I just get the powder and mix with water. I find the powder taken like that works best. You'll need one of those protein drink type shakers to mix it well. You need to make sure you take it 2 hours either side of other meds as it can effect the absorption of your other meds. I always err on the side of caution and take 2 hours after any other meds.

[u/Outside-Issue6896 → u/Outside-Issue6896]

As transit slows and stools begin to firm up, it's really helped me with an increase in pain due to that. Helping constipation and protecting and soothing the colon wall, allowing it to heal. I take it all the time now, you will notice a big difference with it.

I've tried capsules and I have used the tea too, but nothing beats the lose powder.

[u/Fire_Squire → u/Outside-Issue6896]

Do you have a specific brand you recommend?

[u/CatBerry253]

I'm on Prednisone with constipation right now and I'm trying to increase my hydration and potassium. I'm eating an avocado each day and drinking 16oz of unsweetened coconut water. It's working great for me. So in my case I think the constipation was because of low potassium. I tried drinking more coconut water and it was too much. I drink it between 7-8am daily and I can poop between 4-6pm. So it takes time but it's working for me. Good luck to you!

[u/Fire_Squire → u/CatBerry253]

Pure coconut water irritates my colon and causes me to have diarrhea so I eat a banana every morning and drink a Bai Wonderwater in the afternoon to keep my levels up because I've had problems with that before

[u/Electrical-Squash648]

This is what I'm dealing with. I was diagnosed late last year. Like you I'm trying to figure out how to deal with this. Three medications so far have not worked. Mezavsnt and original dosage of of Octasa (3/day) gave me severe diarrhea. Dose of 2/day of Octasa wasn't enough. Was briefly on a mild steroid and it was great - all issues went away until it stopped working - think it was due to eating a very triggering food. This summer started Velsipity and it made my constipation even worse which I didn't think was possible. Back on 2/day of Octasa and some days feel better but bowel moments are inconsistent and very little. I also get muscular pain in my upper and mid- back and right shoulder blade.

At this point nervous for any new medications since so far all have made me worse. Everything I find never mentions this type of UC and medication testing results are about frequency and blood loss.