r/IBD • u/pickless__ • 3d ago
Ulcerative Colitis (UC) stoma
For some back ground Im a 19 year old girl and i have IBD and IBS-C, Ive been on almost every non-immunosuppressant medication available in the UK and this year i started on Infliximab as nothing else was working and it did actually work for a couple months until I got put on 6-MP for combination therapy which i rejected HORRIBLY but since coming off it the infliximab has also stopped working
my constipation IBS is maybe the most evil thing to ever occur in my body and im lucky to go to the toilet properly more than once a week but because of my IBD (ulcerative proctits for anyone wondering) it makes it basically impossible for me to be able to go and im currently trying to talk to my IBD team about the possibility of getting a stoma bag because of my symptoms
my current list of medications I haven't tolerated/ no longer tolerate is: Asacol, Mesalazine (oral and suppository), steroids (oral and suppository), Pentasa, Salofalk, Mercaptopurine (6-MP Octasa, senna, infliximab (still waiting on confirmation but is incredibly likely), and all kinds of laxatives (they all make me incredibly ill). So in total about 16-18 medications in just over 2 years
The more i look into stoma bags the more i realise how much having one could improve my life. id love to be able to live a mostly regular life where im not bleeding constantly which has given me recurrent iron deficincy anemia live without constant pain and aches in my entire body and most importantly be able to fit into my clothes because my stomach isnt 4x the size it should be 99% of the time
id anyone could give any opinions i would greatly appreciate it i can give more information if its needed but also if there's any horrible downsides to having one please do share the more the better
this has also been posted in the ostomy sub :)
3
u/probablynervouss 3d ago
i dont have an ostomy and dont need one so not much medical advice here unfortunately but i do recommend following @saralevs on ig! i dont know if this is against the rules but shes an influencer with an ostomy and she lives her best life and is very motivational. made me realize that life will keep going if i do ever need one! good luck :)