18 years of Crohn’s

This is a review of having Crohn’s for 18 years. Was diagnosed in 2007 and may have had Crohn’s 10 or even 20 years before being diagnosed. Although my Crohn’s is not that aggressive, I ended 2024 with having 3 new problems: neck spondylitis and that was diagnosed in May. and have been on Lyrica ever since. My GI mentioned that this might have been caused by excessive use of corticosteroids (13 years). I also developed platelet dysfunction and constant blood loss. I’m anemic again as a side effect of Rinvoq and have to take meds that stop bleeding. By the end of the year, I was diagnosed with a kidney stone. Although it’s tiny, I was prescribed a medicine (potassium citrate) that causes severe muscle ache and diarrhea. I opted for not taking it as I don’t need extra side effects. The nephrologist advised me to drink a lot of water, which I can’t do because of my longstanding GERD, and this would flush the kidney out of my system but he warned me that I might get a renal colic.
Both Rinvoq and Entyvio can’t control my rectal inflammation and I keep getting flare ups though I take both steroid and Pentasa suppositories.
Crohn’s extra-intestinal gifts can be summed up as gallbladder stones, a kidney stone and neck spondylitis. Are these a must of having longstanding Crohn’s or is it just bad luck

Hi, I have had Crohn's off and on for over 40 years. I also have had 3 kidney stones, one that I must have passed because when they went to find it for my ESWL procedure they couldn't find it. I have had a large gall stone for over 20 years, and they don't seem to want to do anything about it but thankfully it doesn't hurt. I also have osteoporosis probably due to the numerous high steroid doses over time. Was on Humira once for only a year so not sure if it caused its own side effects.

Minnie,

So sorry you are going thru all of this.

I too suffered from kidney stones. I had surgery to get rid of them and started Potassium Citrate. I developed a new one that was smaller. I chose to not take the prescription Potassium Citrate and decided to take an over the counter product called "Stone Stopper" by Moonstone. It dissolved that stone. I don't know if that's something that you could use or not. I've also read studies regarding green tea and there is some indication that it helps with calcium based kidney stones.

My GI has indicated that extra intestinal symptoms are seen in the majority of Crohn's patients at some point of time in their journey so no one should feel unlucky when they occur. It's more a case on when they will happen rather than if they will happen.

Hang in there.

Clo