I’ve searched the posts and have found a few from several years ago about similar news I just received. I’m wondering about current experiences, including more about biologics.
Im a 20 year j poucher after a UC diagnosis. Since 2013 I’ve been treated with antibiotics 2-3 times for pouchitis after suffering with it unknowingly for likely over a decade. Thought I was doing pretty darn great. I’ve never had symptoms as bad as it became by 2013. My GI is not a fan of regular antibiotics saying it ultimately decreases in efficacy.
Well now my endoscopy results last year and this year show more inflammation and she suspects indeterminant colitis or crohns. A small bowel series and blood work are next.
ultimately, though, it seems she has me headed for biologics after more testing and consulting me about which course of treatment to choose.
Yes, I’m devasted. After nearly 30 years of disease, misdiagnoses and complications, I was always grateful it wasn’t crohns. Now I’m hearing the stories about possible misdiagnosis again, maybe I didn’t need a j pouch but they know more now than 20 years ago, maybe it didn’t present as crohns until now, maybe they won’t be able to know for sure even with testing what it is.
I’m left with questions like did this trigger because of massive stress the last few years? What am I in for now that I know this could be progressive? Why have I only been given antibiotics a few times in 4 years unlike other people when I felt so much better afterwards? (Doc said antibiotics can make crohns symptoms feel better but it’s not pouchitis that I have).
And last, she says if I don’t go with the biologics to hopefully heal and keep the pouch healthy, I’m likely to ultimately lose the pouch. So.....I’m starting to read about these biologics and I’m not thrilled about side effects and injections after being med free for decades.
One thing I was grateful for after antibiotics was that I was able to exercise for the first time in my life and drop excess weight and felt great for the first time in my life. Now I’m reading about massive and rapid weight gain with biologics and that people can’t seem to prevent it with diet and exercise. This greatly adds to my upset as being overweight was not only not fun, but physically uncomfortable in many of the usual ways. I really don’t want to go down that path again of meds that help one thing but have major downsides
Has anyone had experience with battling sudden and significant weight gain on biologics? Is one biologic any worse than another in this regard? Googling seems to indicate they all cause weight gain, particularly for middle aged women.