1. < Inflammatory Bowel Disease (IBD)
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About Crohn’s disease on the constipation side of things

Posted by bowersmorgan164 @bowersmorgan164, Feb 8 6:18am

Hey guys I just wanted to pop in and ask y’all’s take on this.
So I just recently got diagnosed with Crohn’s though I am still waiting on a second opinion. I struggle with the constipation side of Crohn’s and have pretty high inflammation, right when all of my issues reared up, I started with nightly back spasms, due to this I ended up trying some strong steroids for about a week which didn’t touch the pain. Anyways, I am about to get my second infusion for skyrizi and I was just curious how long it’s taken anyone else to see that their inflammation has come down and constipation maybe got better.

The side note to this is that I believe with the steroid use, it may have suppressed all of my hormones, and I have been eating very strictly for months trying to work on them and there is no change. I’m wondering if the steroids suppressed them and now that inflammation is high, there’s nothing I can do to get them back. I am 20 years old and really want to have a family in my future and as of right now my hormones seem to be circulating properly says the test I just took, they are just simply bottomed out. Any thoughts?

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skypledger | @skypledger | Feb 11 5:34pm
In reply to @bowersmorgan164 "@skypledger Hey! I had a colonoscopy a year ago and it showed that I had inflammation..." + (show)
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@skypledger
Hey! I had a colonoscopy a year ago and it showed that I had inflammation in my ilium where the small intestine is right before it meets the large and they pushed it away saying I had irritation due to prep and now a year later running into more issues and high calprotectin levels I did a ct that showed inflammation in the same spot so they are doing that it is Crohn’s now.
I am really not a fan of my gastro that I go to and am waiting to get in else where it’s just taking a long long time. The constipation is just miserable tho and nothing seems to work well.
I am currently in the workes of doing a clean out and then I am going to use things like stool softeners and Maralax religiously to try and see if I can keep some relief, but it’s like nothing works besides the hardcore laxatives.
IBS-c meds don’t seem to do much for me since I’m having issues with my small intestines and they only pull water into your large ones, I tried linzess and that seemed to make things worse to once I clean out I am going to try IBSRELA.
The constipation part is just miserable and my gastro is telling me that since I don’t fall under normal symptoms being that Crohn’s is normally diarrhea that my bathroom struggles and stomach distention isn’t due to the crohns probably which makes zero sense to me. Are u on biologics for your Crohn’s?

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@bowersmorgan164
My Crohn’s is in the jejunum, the mid portion and the terminal portion. I started on Entyvio in 2017 and it worked great for 5 years. For some reason it quit working and I was in the hospital twice for obstructions. I had not developed antibodies to it either. Instead of surgery I went with steroid treatment for 3 months and then I started on Stelara. Stelara worked well for the Crohn’s but knocks my immunity for a loop. I had the flu and 2 episodes of pneumonia in 16 months. One of the pneumonias caused me to have sepsis. I’m on nothing now, but the constipation is awful and makes it hard to have a normal life. I’m not happy my GI either, but if I leave him I will still see him whenever my husband has his colonoscopy. If you can find another GI, I would at least go to him for a second opinion. See how you like him, then change if you have confidence in him. BTW. Linzess didn’t help me. It caused more pain than the constipation. Trulance is working better, but when it works it can be explosive, if you catch my drift.

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bowersmorgan164 | @bowersmorgan164 | Feb 13 1:38pm
In reply to @skypledger "@bowersmorgan164 My Crohn’s is in the jejunum, the mid portion and the terminal portion. I started..." + (show)
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@bowersmorgan164
My Crohn’s is in the jejunum, the mid portion and the terminal portion. I started on Entyvio in 2017 and it worked great for 5 years. For some reason it quit working and I was in the hospital twice for obstructions. I had not developed antibodies to it either. Instead of surgery I went with steroid treatment for 3 months and then I started on Stelara. Stelara worked well for the Crohn’s but knocks my immunity for a loop. I had the flu and 2 episodes of pneumonia in 16 months. One of the pneumonias caused me to have sepsis. I’m on nothing now, but the constipation is awful and makes it hard to have a normal life. I’m not happy my GI either, but if I leave him I will still see him whenever my husband has his colonoscopy. If you can find another GI, I would at least go to him for a second opinion. See how you like him, then change if you have confidence in him. BTW. Linzess didn’t help me. It caused more pain than the constipation. Trulance is working better, but when it works it can be explosive, if you catch my drift.

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@skypledger
Oh wow I’m so sorry to hear what all you’ve been through. Chronic Constipation is really a difficult thing, I know it makes me miserable.
Thank you for all of that helpful information, and yeah the Linzess was pretty bad, I don’t think my constipation comes from my colon so I really don’t think ibs meds are gonna help much sadly, I asked to try trulance and my current Gi shot me down so I’m really hoping on getting this second option. I believe I’m inflamed mostly in my small intestines, I just don’t know what they can do for that, I’ll be praying that you find some relief on your healing journey

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bowersmorgan164 | @bowersmorgan164 | Feb 13 1:40pm
In reply to @claudiod "1st one Inflectra infusion ; 2nd one Rinvoq. The calprotectin test has gone up from 29..." + (show)
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1st one Inflectra infusion ; 2nd one Rinvoq.
The calprotectin test has gone up from 29 in October 2023 to now 990 (January 2026)

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@claudiod
Oh my that is so much inflammation, I’m so sorry you are going through that!

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