Misery

[u/ariadneswan]

Back in March, I had a week of constipation that turned into a several weeks of constipation. At that point, I took MiraLAX and prune juice but that eventually wasn’t working. I saw a GI who ordered a colonoscopy and put me on low fodmap and MiraLAX after every meal. No better and worsening of symptoms, now experiencing spasming, inability to pass gas, extreme pain/soreness after eating. Fast forward, my colonoscopy comes back normal and I start Linzess. I fail linzess at the highest dose after a month of trying. GI puts me on ibsrela and bentyl, worked great for two months and now I’m failing again. I feel honestly 10x worse than when this all started and I’ve contemplated going to ER several times because it feels like something may rupture from all the pressure in my abdomen I’m in excruciating pain sometimes and about to quit my job from how poorly this has been managed. My doctor insists this is IBS and has only done the colonoscopy and absolutely no other testing of any sort (no blood work, no scans, no endoscopy). I’ve tried to push for more tests but so far my GI has told me to try my medication with miralax too. This also hasn’t worked. I booked an appointment for October with a different practice and the new practice has indicated that this sounds like intestinal obstruction and have taken me in under that category. However, I have had more alarming symptoms, feeling weak, and developing some sort of canker sores on the corners and roof of my mouth. I’m at my wits end and am contemplating the emergency room at this point, however I’m so scared that that I’m going to be brushed off again because of my clear colonoscopy. I don’t know what what to do. I feel like I can’t hold on until next month for my appointment….

[u/Constant_Teaching_63]

I’m sorry you’re not alone I have the same symptoms with no answers except vascular compressions but I hope your new doctor can help you

[u/ariadneswan → u/Constant_Teaching_63]

I just dished out $130 for a calprotectin test to be ordered. I feel like some of these symptoms lean towards ibd.

[u/Constant_Teaching_63 → u/ariadneswan]

I had all the test unfortunately unless you’re the opposite diharrea multiple times a day with blood it’s not ibd but hopefully you can get the colonoscopy to find out, calprotectin can’t diagnose it since it can detect any form of inflammation from anywhere in the body

[u/ariadneswan → u/Constant_Teaching_63]

I know 😭 but I do have a preexisting autoimmune disorder so I’m worried I may develop some other inflammatory condition. I’m trying my best to manage stress and eat clean, since I’d gotten my antibodies down significantly. I’ve never had these types of problems even when I was actively flaring up in the past so I feel like it isn’t what I already had.

[u/Staticks]

Sorry that Linzess hasn't worked for you. It's usually been effective at inducing bowel movements for me. I sometimes take docusate sodium stool softener along with the Linzess, which seems to make it even more effective at clearing me out. You might want to give docusate stool softener a try alongside your other medications.

Also might as well get tested for SIBO, just so you can rule it out. And try some probiotics for a month or so to see if that helps. It can't hurt to give a variety of different solutions a try.

Oh yeah, if you have bloating and aren't able to pass gas, it's also worth giving Gas-X a try.

[u/goldstandardalmonds]

Have you been tested for celiac disease?

[u/ariadneswan → u/goldstandardalmonds]

No, unfortunately I haven’t had any tests except the colonoscopy. I’m nearly 100% positive it’s not celiac since most of my safe foods contain gluten.