top of page

Skirizi and Me! The Biggest Change in 22 Years! My Stoma / Crohns Journey Biologics 1 year on!


After 22 years of living with Crohn’s disease, I’ve tried more treatments than I can count. Some helped temporarily, some failed completely, and some came with side effects that were just as hard as the disease itself.


But today, I’m sitting down to share something I never thought I’d be able to say:


It has officially been one full year since I started Skyrizi (Risankizumab)… and it has been the most effective medication I’ve ever been on.


This is my honest one-year update — the good, the bad, and everything in between.


You can listen to this blog here! or read on for a shorter insight.



Why I Started Skyrizi



Before Skyrizi, my Crohn’s disease was still very active despite years of biologics, immunosuppressants, surgeries, and constant monitoring.


I was dealing with ongoing inflammation, strictures, fistulas, and one of the most terrifying parts of Crohn’s for me:


frequent bowel blockages.


When Skyrizi became an option, I decided it was worth trying — even after everything I’d already been through.




The Biggest Improvement: No More Blockages



This has been the most life-changing result for me.


Before Skyrizi, I experienced:


  • 3 to 5 bowel blockages every year

  • Hospital stays due to severe obstruction

  • Constant anxiety about when the next one would happen



Since starting Skyrizi…



I haven’t had a single blockage in an entire year.



Not one.


After living with that cycle for so long, this feels unreal.




Skyrizi and My Stoma Output: A Total Shift



If you have a stoma, you know output can control your entire day.


Before Skyrizi, my output was:


  • Watery

  • Frequent

  • Unpredictable



I was emptying my bag 15–16 times a day, which was exhausting and honestly limiting.


Now?



My output is thicker and more manageable.



These days I empty around:


  • 4–5 times during the day

  • Occasionally once at night



That change alone has given me so much freedom back.




Food Freedom (Yes, Even Popcorn!)



One of the most emotional parts of Crohn’s is losing trust in food.


Before Skyrizi, eating felt like a gamble. So many foods would irritate my gut or “backfire” later.


Now, I can honestly say:



I can eat anything and everything again.



Even popcorn — which is usually a huge no-go for Crohn’s patients.


Being able to enjoy food without fear is something I don’t take lightly.




Possible Fistula Healing



I’m still waiting on follow-up imaging, but I truly believe Skyrizi may be helping heal internal fistulas that were previously detected.


I don’t want to speak too soon until I have MRI confirmation, but it’s definitely encouraging.




Side Effects I’ve Experienced on Skyrizi



Even though Skyrizi has helped me massively, I want to be honest: it hasn’t been perfect.


Here are the side effects I’ve personally dealt with.



Skin Issues



I’ve struggled with:


  • Perioral dermatitis

  • Folliculitis (acne-like bumps on my scalp)



These flares tend to happen toward the end of my 8-week treatment cycle, which is frustrating.


Hair Thinning



My hair is about half the thickness it used to be and breaks more easily.


That has been emotionally hard, especially after already going through so much medically.



Injection Site Reactions



Skyrizi is delivered through an on-body injector device.


When I injected on my leg, I developed:


  • Large red itchy bands

  • Marks that lasted much longer


Recently, I switched to injecting on my stomach, and the reaction was much smaller and faded within a few days.


Sometimes small adjustments help.



What the Treatment Schedule Looks Like



For anyone curious about the logistics, this is what my Skyrizi routine looks like:


  • Medication delivered to my home every 8 weeks

  • On-body injector infusion takes about 5 minutes

  • Blood monitoring every 8 weeks



It has become part of my life rhythm — and compared to how sick I used to feel, it’s absolutely worth it.



Traveling While on Skyrizi



One of the most exciting things is that I’m preparing to travel internationally (Australia!) with my medication.


I have all the documentation needed for customs, and it feels surreal to be able to plan something like this again.


Crohn’s takes so much — so moments like this matter.



My Reminder: Medication Is Not One-Size-Fits-All



I want to say this clearly:



Skyrizi has been the key for me — but every Crohn’s patient is different.



Before this, I tried many other treatments, including:


  • Infliximab

  • Stelara

  • Upadacitinib

  • Methotrexate



Some helped temporarily, and others caused severe side effects like drug-induced lupus or extreme hair loss.


That’s why I always encourage people to:


  • Research biologics

  • Ask questions

  • Talk to others who’ve lived it

  • Work closely with their GI team



Final Thoughts After One Year



If you told me a year ago that I would:


  • Go a full year without a blockage

  • Eat freely again

  • Have manageable stoma output

  • Be planning international travel



…I honestly don’t know if I would’ve believed you.


Skyrizi has given me stability I haven’t felt in decades.


I’m grateful, hopeful, and continuing to take things one step at a time.


Thank you for being here with me.


Andrea

aka Stoma Warrior





Disclaimer



This post reflects my personal experience with Skyrizi and Crohn’s disease. Everyone responds differently to treatment. Always consult your gastroenterologist or healthcare provider before making medical decisions.

 
 
 

Comments


  • generic-social-link
  • Youtube
  • Instagram Social Icon

©2018 by The Good, The Bag and the JPouchie!

bottom of page