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Wrong diagnosis after 13 years

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Crohn's Disease
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Posted 12/20/2020 7:10 AM (GMT -7)
I was diagnosed with UC in 2007. Tried messalamine and it failed. I went on Remicade and it gave me 7 years of remission smile . This year Remicade stopped working. I had started having blood, mucus, urgency, horrible gas. I had a sigmoidoscopy in nov and there was moderate inflammation in the lower part of my GI track. My GI started me on Xeljanz a month ago and so far not much relief. The blood actually got worse. I contacted my GI again in early Dec and she started me on Pred. the Pred helped with the urgency and started seeing a bit less blood but still showing alot of symptoms. She hospitalized me this week for iv steroids. She did a sigmoidoscopy and said that I haven’t healed as much as she would of liked and that she noticed narrowing of my colon hence why i am having a hard time pass still and noticed scar tissue. She said normally this is seen in Crohns patients and not UC patients. This is is stressing me out sad does this mean I will need surgery? I will talk to her again in Jan for the next steps. Have a lot of you been misdiagnosed at the beginning?
Posted 12/20/2020 8:32 AM (GMT -7)
Yes, this does happen sometimes. What meds have you been on in the past & besides prednisone currently what are you on? Narrowing is strictures & no that is not an automatic need for surgery. Some people can have multiple strictures & never need surgery. If the narrowing is severe enough a dr can do a dilation of the area, but again, it all depends on the severity.

I can't really tell by your post, but if you are dealing with hard stools/constipation get on a stool softner. There are plenty OTC ones to pick from, talk to your pharmacist.

I know you are stressed, however, surgery is always the last resort. Take care.
Posted 12/20/2020 9:07 AM (GMT -7)
Susie thank you smile

My past meds are: Asacol, azathioprine and allopurinol, Remicade and now I am currently on Xeljanz and tapering off pred. I think my GI talked about trying Entyvio next since Xeljanz doesn’t seem to be helping much. I will go to the pharmacie and get stool softeners. It really sucks coming off of 7 years symptom free to this sad
Posted 12/20/2020 2:48 PM (GMT -7)
Cynn, if I were in your shoes I would push for Stelara. It seems to be a good one from what I've seen in this forum. It works quicker than Entyvio which is a slow starter.

In the meantime, try not to let your stress level get to you over this situation. It's tough I get it.
Posted 12/21/2020 2:50 PM (GMT -7)
As you can see from my handle, I was also misdiagnosed. I was diagnosed with UC at the age of 13, fast forward to 37 after many many colonoscopies and I have just been diagnosed with Crohns instead. The issue is that they can often present very similarly, ie non-specific GI inflammation and if it’s localized to the large bowel it can make it difficult to distinguish. Try not to get too hung up on the names as they are just people trying to label inflammation basically. It’s great that you managed to have so many years of relief with Remicade, but sucks it’s no longer working. Like the others, I’d suggest giving stelara a go as it works on a different mechanism.
Posted 12/23/2020 4:31 AM (GMT -7)
I was originally diagnosed with UC until I got an abscess that turned into a fistula.

Honestly, other than the use of mesalamines sometimes working for UC and not Crohn's, there's not a huge difference between the two with regards to treatments.
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