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Another Med

I was diagnosed in 2013 but my doctor figured I had it for several years. I tried humara, cimzia and 2 others and nothing worked. I had 36 inches out of my small intestine. It was supposed to be a 3 to 5 day stay. Well the bag was going nuts after surgery. They said when the out put was below 1,000ml I could go home. Well that never happened it was pumping out over 3,000ml so on the 16th day in the hospital they asked me if I minded if they tried hooking everything back up. I was a little nervous as they told me I would be wearing that bag for 3 to 6 months. She said they have never done it this quick but if I was cool with it she would try. Well duh hook me back up so I can be bag free. So after 21 days I got to come home and basically do nothing for 6 weeks. I wasn't on any meds for 2 months because the surgeon didn't want me on anything. My crohns is as bad now as before surgery. I just started Entyvio last week. They say it takes 20 weeks to work if it will. I have my doubts as 5 meds haven't worked. If I eat anything it's coming out within an hour and a half so I don't go out much. They said they could put me back on the prednisone but I said I would rather feel like crap. (pun intended) It just bums me out that I can't do the things I used to. If anyone has taken Entyvio and info would help

Don
 
I'm sorry you're having such a hard time. You should think of the long term consequences of not having your flare under control. It could be doing further damage to the intestines you have left. I should say irreversible damage. I can no longer digest a lot of fats, and I think it's because of scar tissue.
 

David

Co-Founder
Staff member
Location
Naples, Florida
Welcome to the community. I'm so sorry to hear of your struggles :(

Have they tried putting you on total parental nutrition in addition to the medications?
 
No they have me just on a low residue diet. What ever I eat lately doesn't stay in long.

Thanks for the welcome
 
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