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UC or Crohns?

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Ulcerative Colitis
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Posted 1/29/2023 6:21 PM (GMT -8)
I am in the same boat as those who are unsure of the diagnosis. The biopsy shows granulomas (crohns colitis), but it looked like UC to the doctor. I'm on Lialda and prednisone and waiting to get Stelara. I have had eye inflammation and joint pain. I just had to get iron infusions and I'm delaying the Stelara to give my iron time to go up. I noticed all if he orders see now saying Crohn's whereas it used to say UC. I don't have typical symptoms (chronic constipation, mucus, bloating, gas and stomach pain...very little "obvious bleeding"). Nothing was found in the small intestine, per mri. I'm still wondering how my doctor decided on Stelara (she said less potential side effects?). They said in the beginning that it's indeterminate and diagnosis could change from UC to Crohn's. I ended up having my appendix out (not an emergency but urgently) when the CT scan showed pancolitis when it was previously suspected that I had left sided colitis a few years ago. It's all so confusing to me.

Post Edited (RS2022) : 1/29/2023 7:14:08 PM (GMT-8)

Posted 1/30/2023 7:29 AM (GMT -8)
RS2022, it's frustrating when we don't get definitive answers. Do you have a copy of your biopsy reports? If not request them, perhaps post the final results on here. What is the location of the granulomas, in some cases granulomas can happen with UC too.

People with crohns can have either diarrhea or constipation. I have crohns, 98% of my issue has been diarrhea, rarely does constipation ever enter the picture with me.

It will take a week to 10 days for your numbers to go up after an infusion so probably by the time the drs office gets the Entyvio approved & scheduled you will be good to go.

Good luck.
Posted 1/30/2023 4:58 PM (GMT -8)
Hello,
I'm still waiting on the report but I think the doctor documented that the granulomas was in the rectum (I think). The Stelara has been approved. I just pushed the appointment out for a few weeks to wait on my iron to go up and to feel more comfortable with the decision to start Stelara. I've been having lots of pain after I eat. It always feels like the food is just sitting there and will not digest. I get so bloated.

The notes in the portal also said "patchy chronic colitis in different areas of the colon and Rectal - Chronic proctitis - moderate activity with mucosal ulceration granuloma". The colonoscopy was performed at a surgical center different from where I normally go, so I think that's why they have been slow to post it.

Post Edited (RS2022) : 1/30/2023 6:22:33 PM (GMT-8)

Posted 1/30/2023 11:30 PM (GMT -8)
Sounds like Crohn's.

q
Posted 1/31/2023 4:58 AM (GMT -8)
Does Stelara affect iron levels? I am not understanding the delay. I had iron transfusions while on Entyvio, Humira and when I first started remicade, A bad flare can for sure cause low iron level so seems like the best thing to do would be to get the flare under control as soon as possible.
Posted 1/31/2023 6:13 AM (GMT -8)
I'm not sure if Stelara affects iron. It's just anxiety I guess. I have had iron deficiency since I was a kid. This is my 4th iron infusion as an adult (heavy cycles). Hopefully the levels will stay up since I am now in my 50's. I'm noticing very thin stool, which I guess is from the constipation. I just had the colonoscopy in October '22. As long as I don't eat foods that are hard to digest I feel okay. I'm gaining weight in the prednisone so my understanding is that once I start Stelara I can stop it (down to 10 mg a day now).
Posted 1/31/2023 7:33 AM (GMT -8)
Stelara does not affect iron levels. The sooner you can get off prednisone the better. Stelara is much safer than prednisone.
Posted 1/31/2023 7:03 PM (GMT -8)
Ok thanks. I'm scheduled to start Stelara in a couple of weeks. I have to get it done on the weekend because I just started a new job. My GI doctor wants me to follow up with another Rheumatologist because the A antibody test for Sjogren's was positive (not the B). I've had dry eyes since I was a teen. The dry mouth is only occasionally. I deal with the dry eyes by using eye gels. I am going to just wait to go see Rheumatologist in the summer. Just need to get this taken care of first.
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