1. < Digestive Health

Ulcerative colitis: none of the medications are working

Posted by eszymanek @eszymanek, Feb 11, 2023

I'm new to this so please bear with me. My grandson had his colon removed and some of the colitis could not be removed. He is experiencing fatigue, diarrhea, etc. None of the medications work. Looking for answers. Thank you!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 12, 2023

@eszymanek, welcome. I moved your messages to the Digestive Health support group. You may be interested in these 2 related discussions:
- I’d like to meet others with ulcerative colitis: https://connect.mayoclinic.org/discussion/i-have-ulcerative-colitis-and-wondered-if-anyone-here-has-it-and/
- Ulcerative colitis - worried about medications: https://connect.mayoclinic.org/discussion/ulcerated-colitis/

Can you share a bit more about your grandson so I can help connect you with others? How old is he? What medications have been tried?

REPLY
1 reply
eszymanek | @eszymanek | Feb 13, 2023
In reply to @colleenyoung "@eszymanek, welcome. I moved your messages to the Digestive Health support group. You may be interested..." + (show)
@colleenyoung

@eszymanek, welcome. I moved your messages to the Digestive Health support group. You may be interested in these 2 related discussions:
- I’d like to meet others with ulcerative colitis: https://connect.mayoclinic.org/discussion/i-have-ulcerative-colitis-and-wondered-if-anyone-here-has-it-and/
- Ulcerative colitis - worried about medications: https://connect.mayoclinic.org/discussion/ulcerated-colitis/

Can you share a bit more about your grandson so I can help connect you with others? How old is he? What medications have been tried?

Jump to this post

Hi Colleen! My Grabdson is 25 years old. He was diagnosed in 2012, had surgery 1 in Dec 2016, had surgery 2 in Jun 2017 and surgery 3 in Dec 2017. Per his mother these are the meds that he is taking -
Citrucel, Multivitamin, Florastor, Vitamin D3, Loperamide, Eliquis, Lomotil, Escitlopram, Augmentin, Cipro and Budesonide

REPLY
Valerie | @lacy2 | Feb 13, 2023

Oh that is a lot for a 25 year old to have gone through I hope you get lots of feedback here to help him. When my one daughter 21 had bowel blockage (after being turned away with pain from 2 hospitals whose drs said as white blood count not high, not appendix).... anyway, couple days later had 18 inches bowel removed their saying Crohns and then on I think steroid meds. She by then married and lived another City so I dont know all details, but after about a year she went off pills and now is 55, tomorrow , she only has b.m. about once or maybe twice a week but is not open to discussion about it with me. One of the fortunate ones she feels. Wish I knew of something to help, but can only say I wish him the best and hope that there will be a big improvement in his health soon... "just" having ibs=d, F.I., and radiation damage to bowel myself I have and always will have bowel issues....horrible.... not often discussed in public but glad it can be on this site, which has been very very helpful. Best wishes, J.

REPLY
1 reply
irisjolie | @irisjolie | Feb 14, 2023

Dear Person,

I have ulcered colitis too. Many decades of different medications to control it. Doc put me on infusions. Remicade worked great for about two years then I was having pain in my muscles so he ordered another med named Entivio. This is given every eight weeks. It is a fair med but isn’t the greatest. Work with a doctor. Hope a good med is found for him.

REPLY
1 reply
eszymanek | @eszymanek | Feb 14, 2023
In reply to @lacy2 "Oh that is a lot for a 25 year old to have gone through I hope..." + (show)
@lacy2

Oh that is a lot for a 25 year old to have gone through I hope you get lots of feedback here to help him. When my one daughter 21 had bowel blockage (after being turned away with pain from 2 hospitals whose drs said as white blood count not high, not appendix).... anyway, couple days later had 18 inches bowel removed their saying Crohns and then on I think steroid meds. She by then married and lived another City so I dont know all details, but after about a year she went off pills and now is 55, tomorrow , she only has b.m. about once or maybe twice a week but is not open to discussion about it with me. One of the fortunate ones she feels. Wish I knew of something to help, but can only say I wish him the best and hope that there will be a big improvement in his health soon... "just" having ibs=d, F.I., and radiation damage to bowel myself I have and always will have bowel issues....horrible.... not often discussed in public but glad it can be on this site, which has been very very helpful. Best wishes, J.

Jump to this post

Thank you for your post. All we can do is try to help each other and hope that something will work.
Best wishes,
Ed

REPLY
eszymanek | @eszymanek | Feb 14, 2023
In reply to @irisjolie "Dear Person, I have ulcered colitis too. Many decades of different medications to control it. Doc..." + (show)
@irisjolie

Dear Person,

I have ulcered colitis too. Many decades of different medications to control it. Doc put me on infusions. Remicade worked great for about two years then I was having pain in my muscles so he ordered another med named Entivio. This is given every eight weeks. It is a fair med but isn’t the greatest. Work with a doctor. Hope a good med is found for him.

Jump to this post

Thank you for your post. I will pass on your information.
Best wishes,
Ed

REPLY
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