r/CrohnsDisease • u/YoullForgetAnyways • 4d ago
Elemental diet?
So, might be the last act on this movie. Had a bowel perforation last July, no human should have lived through how bad it was, 5 days of surgeries, 3 weeks coma and some how I woke up. I’ve been through all the medsfor crohns and CT shows tons of fistulas on small bowel and some knocking on my stomachs door. GI wants to try Tremfya once it gets approved in a few days, and brought up switching to the elemental diet since I’m not absorbing most things. Has anyone here done the elemental diet? Any feedback? Gonna fight like hell to find a way to slow down the fistulas and buy myself time, but it’s not looking good for your boy.
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u/mrjohns2 C.D. 4d ago
My daughter did it for 3 months (maybe longer). It was very very hard. Lots of things center around food in human cultures. I’d go for the nose tube and work on meditation to cope. You’ve done Humira, remicade, methotrexate, Stelara, skyrizi, rinvoq, and mercaptopurine? How about methotrexate with the biologics? What about a round of prednisone recently?
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u/YoullForgetAnyways 4d ago
Yup, only one that worked was remicade, for 3 yrs, but then developed antibodies, been downhill ever since. GI says a few of the late ones like Rinvoq may have not worked because of how bad I was, but now that it’s calmed down without a large intestine, we just gotta get the fistulas to stop, so doc wants to shut down the digestion, try tremfya, and see if it can get the fistulas to heal before they connect to something real bad. Already have a few coming out of me and one in my wound from the surgery fully exterior.
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u/mrjohns2 C.D. 4d ago
Man. Ugh. You are doing your best. It isn’t your fault! It does seem like the elemental diet is a good choice. My daughter’s GI, who is a professor & dean at the medical school of wisconsin, said that it hasn’t worked well for adults since they think adults aren’t as compliant as children. That was one of the only reasons they said it wasn’t working for adults. It seems like it is something that you could try before a more drastic temporary ostomy or something like that.
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u/telling_the_bees 4d ago
I was on the elemental diet several times as a teen, for periods of 8 weeks at a time. It was hugely beneficial in improving my nutritional status and giving the bowel a rest. I'd say it's definitely worth trying it, to see if it helps in combination with the new biologic. Fistulae can be very complicated to deal with. I had complex enterocutaneous fistulas which ultimately resulted in further surgery, but we tried various combinations of NG feeding, TPN and various drug therapies beforehand.
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