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UC diagnosis changed to Chrohns

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Crohn's Disease
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Posted 11/30/2018 5:15 AM (GMT -8)
Hello,

My UC diagnosis has been changed to Chrohns and I was told I have to see a surgeon about a fistula. I’m nervous now and have no idea what that means. My symptoms haven’t been terrible but the dr said now we know why I haven’t responded. They are going to switch me from Entyvio to Stelara. My friend died of Chrohns and I think I could use some encouragement. Anyone have success with stelara or experience with a fistula. I honestly didn’t know I had one.
Posted 11/30/2018 7:20 AM (GMT -8)
I am sorry about your diagnosis. I do not have IBD (I do have celiac disease), but a friend who is my age (nearing retirement) is doing well. Her focus has been on exercise and diet all these years. My niece is in her early 20’s. She is on Remicade which is working for her.

I wanted to share that Scripps in San Diego conducted a small study with IBD patients who remained on their medications. They changed their diet to the Autoimmune Paleo Diet. In six weeks 78% achieved remission based on biomarkers (e.g lab tests). That is pretty amazing! They are now crowd funding to test Hashimoto’s Thyroiditis as the AIP diet might help others with autoimmune disorders. It certainly can not harm!

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/
Posted 11/30/2018 7:25 AM (GMT -8)
It can happen getting the diagnosis changed, especially now that you have a fistula. Try to take a deep breath & not let yourself fall into a black hole. What medications have you tried in the & what are you currently on? There are different types of fistulas, where is your's located & the severity of disease? I think it's a good sign that you are not having symptoms & medication may take care of it. Try not to panic because you are being referred to a surgeon. It is good to have an opinion of a good colo-rectal surgeon, it does not mean you will need surgery.

There has been some members here that was on Stelara for treatment of fistulas. One member that comes to mind is U B Tough. She had a really bad time & the last we heard from her Stelara was working, so please do not give up hope. Years ago I had a recto-vag fistula & Remicade took care of it. A lot of drs still put patients on Remicade for fistulas because it has a good track record of healing them. At the top right corner is Custom Search, click there & type in crohns forum U B Tough, you should be able to pull up a lot of her posts & read about her experience.

I am sorry to hear about your friend, however, keep in mind we have lots of treatments options available today. Another good source to educate yourself about crohns & fistulas is, CCFA.org. It is a excellent site with accurate info about crohns & medications used to treat. I urge you to visit that site. Educate yourself about crohns, fistulas & treatment, it will help you a great deal.

Keep us posted.
Posted 11/30/2018 7:54 PM (GMT -8)
ASellers, I originally was diagnosed with UC then later they changed the DX to Crohn's - it's not uncommon. It can be scary at first but it's good they found the fistula and a good colorectal surgeon can help repair it! I haven't taken Stelara but am currently on Humira (and methotrexate and prednisone after a recent flare) and before that was on Remicade and 6mp. Last month during my flare I had a CT scan that showed an abscess and a possible fistula - it turned out it was only an abscess, and was fixed with surgery. How did they diagnose your fistula? The good news is that if you're in pain then the surgery can help alleviate that quickly.
How did your friend die from Crohn's if you don't mind my asking? If that is one of your concerns it may help to know that it seems it's usually it's complication from the disease that progress and are left untreated that cause serious situations. It is rare to actually die of Crohn's so try not to worry about that. Also, with all the medicines we have today they really can do a great job of controlling your symptoms. Talking about it helps, especially with other people who have Crohn's and UC so def have a support network, you're not alone! smile
Posted 12/1/2018 9:46 AM (GMT -8)
I appreciate the replies! I’m feeling better now but I’m still trying to figure out what a fistula is but once I meet the surgeon maybe he can show me the MRI so I can see it. If I’m being logical I know my friends situation is rare. He kept having parts of his intestines removed and had tried all the biologics then his family said he was too weak to communicate and he passed shortly after. This was a few years ago, he was 30. I’m 33 now. I also know I’m fortunate to not have been hospitalized so far. Maybe my path won’t be so severe but the symptoms are exhausting as you all know. I’d love to get back to my normal routines and be able to go out without worry. It’s been over a year now and I’ve tried 5-asas, which I can’t tolerate. Remicade “crashed” my immune systems according to the dr, So they said no remicade and no to anything similar. I’ve been on entyvio now but not responding. Now I’ll try the Stelara like he said. And as far as AIP diet, I really have thought about taking baby steps into that. I figure it could be a helpful adjunct, trying to decide what the biggest offender is to cut out first. I don’t have a skin sore like it says fistulas have so does that mean it might heal on its own or will it eventually get to my skin?
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