After a weekend of not being able to keep ng tube down an and previous elevated labs an mre was ordered for tues. Wednesday jan 29th we were admitted again. My son had lost 6 lbs in short time frame too. They put in pic line and he's been on tpn. We will be here til monday feb 3rd. Original plan was to go home with tpn for a week. Then back in for g tube placement and surgeon also look at terminal ileum. As you know if you've seen my other posts, i think he doesnt have TI symptoms. He only cramps when he stools and only vomits with hard painful cramps. But what do i know. I'm happy if it brings brian relief to remove ti. Surgeon stopped by end of day Friday. He spent about an hour with us. Wanted brians whole crohns life story. He had lots of questions. After he went over what he thinks he sees on mre. He said his TI is insignificant but rectum and sigmoid colon are like a lead pipe. Lots of thickening. I said, scarring? He said, oh yeah!! He said the small bowel loops look normal. He said if ti was scarred or narrowed those loops or at least right next to TI would be enlarged due to backup. Flow is good. He said brians issue in rectum is risky surgery. Because tissue planes are not there to easily cut thru (his will be like pages in a book with glue on them) he wont be able to see important things not to cut. Excuse the spelling but uratal, semen vesicles,and prostate. The inflammation will make tissue white and everything will bleed. He said big risk of leakage into pelvic cavity. He would need to remove sigmoid colon,rectum and part of descending. Attach that to rectal stub. He said this surgery is usually needed in rectal cancer patients and their tissue is ok. He doenst want to do g tube now cause he thinks the vomit is due to pain not gag reflex or nausea or ti. He asked if brian could live the way he is...put up with it. Brian told him how his life is at stand still. Cant do sports or play etc. And the pain is always there which affects his nutrition cause it hurts to even eat een. He wants us to go home and bowel rest. Then have him eat and see what happens. I asked him, what do you think will happen. He said, i think the same thing will happen. I said thats what weve been doing for two years! He's reluctant to do the surgery. I'm terrified now. He said, if it was successful brian would feel great. I was thinking last night, what if we do bowel rest then instead of having him eat and watch him decline again, take another look at rectum. Maybe some of the thickening isnt scarring but inflammation. Maybe surgery would be easier then. Fyi, mayo gi has been all about TI. We've asked and asked about stelera. He said he told us thats not avail yet. Hmmmm. I'm scared. Any knowledge from you all? Thanks
