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Treatment options decision


Sat, November 07, 2020 4:06 PM

My son was diagnosed with crohns at 10yrs old, due to low weight and abd pain. Mild case oer colonoscopy and egd. Started on steroids and 6mp, weaned off steroids and continued without issues on 6mp until recently. Few weeks ago started having yellow leakage from his bottom, our gi Dr thought it could be pus and wanted to rule out a fistula or abcess. CT scan was clear, had egd and colonoscopy couple days later, he said didnt see crohns flare but inflammation and thought he had cdiff. Went home gradually worsening abd pain and fullness , unable to pass gas or stool. Increasing fever and tachycardia also. Came to er next morning and had emergent decompression colonoscopy, it worked! Had been started on cipro and Flagyl even though cdiff and all other cultures were negative due to his fever, tachycardia, elevated wbc,sed rate, crp increased drastically from labs previously 4 days prior. Biopsies just showed crohns, gi Dr wants to start remicade. I have looked up about this and I am very worried about starting him on it due to potential side effects and possible complications. Would it be reasonable to ask to stay on the 6mp for longer to see if another flare happens before trying remicade? If he was having more serious crohns symptoms i would be more willing to start it. I just don't know if its worth the risks to go ahead and start it right now??

FPO Bmineard1
Joined Nov 6, 2020

Sun, December 13, 2020 12:34 AM

Reply posted for Bmineard1.

I am sorry you are going through this -- I have been down this road.  My son has CD and was diagnosed at 6 yrs of age when an anal fistula landed him in the emergency room.  He was on cipro and flagyl for 4 years and when he was 10 the GI recommended Remicade in order to avoid surgery until he was fully grown and to catch up on growth; the window was closing.  It was the most difficult decision my husband and I have ever had to make. I sympathize with you on that.  I was asking the same questions and was kind of incredulous that anyone would accept these risks for their child.  That said, his GI was (he has now transitioned out of pediatric care) one of the leading Crohn's researchers in the world and I put my trust in her expertise.  He did very well on Remicade with no serious side effects.  He even exclaimed that he felt like he no longer had a disease.  Heartbreaking.  He was on Remicade for 6 years, it healed his fistula, put him into clinical remission, and gave him a normal quality of kid life.  After 3 years of being in remission his GI weighed the benefits and risks of treatment and recommended he be moved to Entyvio.  He has been on Entyvio for 1.5 yrs and he now feels like he has chronic illness.  His inflammation is steadily rising, he has peripheral joint pain, and has had frequently recurring sinus colds.  He was a very active kid but can no longer engage in the same level of activity -- he gets injured while doing activites much more easily than before. Hair loss has been an issue, too, and you can imagine how this is going down for an 18 year old.  It's a journey and your treatment decision will be determined by what you prioritize.  For us, it was quality of life. It's a journey, I wish you and your son well.

FPO Isa
Joined Jan 9, 2020

Mon, November 23, 2020 10:30 AM

Reply posted for administrator.

I will share with you what our doctor told us! Risk of surgery is higher then the side effects! We have been on Humira for over a year now. My son grew about 5 inches and gain close to 30 pounds. He is very active and we could not be happier. 

FPO tyanmaz
Joined Nov 23, 2020

Wed, November 11, 2020 12:45 PM

Reply posted for administrator.

BMineard,

Sorry to read about the challenges your son is having with his health.  It is important to learn about both the risk and benefits of treatment.  We have resources that can help you learn more at: https://www.crohnscolitisfoundation.org/what-is-crohns-disease/questions-for-your-doctor

FPO administrator
Joined Oct 12, 2017

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