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Stelara Infusion

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Ulcerative Colitis
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RS2022
Regular Member
Joined : Dec 2022
Posts : 44
Posted 2/18/2023 10:34 AM (GMT -8)
Hello All,

Just wanted to give an update. I had my first Stelara Infusion today. I was very nervous. But, I'm thankful to report that everything went very well. It lasted about an hour and they checked vitals a couple of times and everything was fine. I'm just praying now that it works. The nurses assured me that rarely does anyone have a reaction with it. My doctor does seem like a very good doctor and I trust that she prescribed what she felt was best for me. I've been to probably 8+ GI doctors over the the years she and one of her coworkers were the only ones to truly listen to me. The others always said my symptoms were in my head basically (IBS, anxiety). I probably have IBS also, but the symptoms were not just in my head. I'm not sure why it took so long for the IBD to show up on the biopsy though. In 2019, the biopsy said that there was a chance that I had IBD, but without clinical notes they could not be certain.

Anyway, I know a lot of people are on the fence like me. I think a lot for me stemmed just from the type of drug it is, but once I looked at all of my issues, I had to give it a try. Now, just praying that it works!

Post Edited (RS2022) : 2/18/2023 10:38:12 AM (GMT-8)

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Sara14
Veteran Member
Joined : Mar 2007
Posts : 7914
Posted 2/18/2023 12:04 PM (GMT -8)
I hope it works for you.
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Serenity Now
Veteran Member
Joined : Jan 2009
Posts : 2728
Posted 2/18/2023 1:30 PM (GMT -8)
"In your head" is doctor speak for "I can't figure it out".
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RS2022
Regular Member
Joined : Dec 2022
Posts : 44
Posted 2/18/2023 2:00 PM (GMT -8)
Thank you! Yes I agree they did not know what was causing my uncontrollable flatulence. Back then, that was my main concern because that is what caused me pure humiliation and a couple of job losses. My new doctor feels like the IBD (she's now saying it's crohn's). I think she changed her diagnosis because she asked if I had ever seen a dermatologist for anything and I told her I had for a few things. The derm said I had mild HS, and also the derm diagnosed my pilonidal cyst and she encouraged me to have surgery right away for it and I did. The surgeon said it was filled with hair and that I was born with it, so I had a flap surgery. I have had the pain since surgery, but thankfully the cyst has never returned.

Anyway, I'm not sure if some features of the diagnosis changed and that caused the GI to start saying crohn's, whereas she originally said I had what looked like UC. I'm assuming treatment is the same.

Hopefully I can stop the prednisone and generic Lialda soon. I actually started losing some of the weight that I had gained. I lost my appetite when I weaned down and started back fasting. I was weaning down, but the joint pain and tailbone pain returned, so my Dr said go back to 10mg "for now".
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