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General health

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Original poster

Ulcerative colitis flare

7 replies

coconutty101 · 27/12/2019 18:16

My OH has been flaring for about a year and a half now, nothing can get it under control, the Ibd team have tried all Sorts of combinations of medications, and he's now on infusions.
He's been really bad this past few days, with fever, chills, fatigue.

He's tried resting his gut, he didn't eat for 24 hours, but soon as he's eaten (soup) he's bad again.

He hasn't worked since July because of it either.
Any advice on what we should do now..?
Tried to get him into doctors today, no appointments, but honestly what can they do?

Feel so helpless, absolutely nothing is working!

OP posts:

ViaSacra · 27/12/2019 18:20

Has his IBD team floated the possibility of a colectomy? Or is that not quite in the picture yet?

ViaSacra · 27/12/2019 18:20

(or a colostomy)

ViaSacra · 27/12/2019 18:21

It's drastic, but if no medications are working, and it's having a severe, constant impact on his quality of life, then that's really the only step left.

Original poster

coconutty101 · 27/12/2019 19:01

I think it's been mentioned yes, he isn't keen but I've reassured him it's not as bad as he may think, it's going to give him his life back.

I just feel like he's being left by the wayside by the Ibd team.
I think he needs admitting to hospital reslly, then he can be reviewed by gastro properly.

OP posts:

Scarydinosaurs · 27/12/2019 19:03

When my flare is bad I call three times a day to update on my condition- this is what my consultant asks me to do. I was taken in and given steroids by IV once to get it under control.

In the past what has helped?

I can really recommend the Facebook UC and Crohn’s group. Lots of great advice on there.

Original poster

coconutty101 · 27/12/2019 19:15

We don't get any of that, we're lucky if they return our calls.

I've just joined a few groups, OH isn't on Fb.

I do feel like he needs admitting for IV steroids.

Going to see how he is in the morning, and call 111 if no better.

Honestly, nothing works.
Steroids have worked in the past, but not anymore, they don't help Really.

OP posts:

sundaynightflight · 27/12/2019 19:18

Has he tried chemo? They did that for a friend of mine when hers got very bad, and it helped for a while.

The thing which seemed to manage hers eventually was actually therapy. She had no idea she was anxious, but tried it as a last ditch attempt (suggested by her consultant) when the colostomy surgery was cancelled due to lack of beds. She went for therapy and hasn't had a bad flare for a couple of years now.

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