Had my GI appt. Kind of frustrated!

Hi there,
I might be just whining, but any ideas or suggestions are welcome. I was in remission for the past couple of years, but flaring since Sept. My colonoscopy showed inflammation in the terminal ileum. I've been struggling more with constipation and loss of appetite. We tried increasing the Pentasa and I started in Entocort on 10/21/11. The entocort seemed to make the constipation much worse, and now I get nauseous after eating on top of it. I've lost around 15 pounds in two months. So now my doc is saying that if the Entocort didn't work, that it must be more IBS than Crohn's causing the trouble. The plan is to wean me off the Entocort, increase the Senokot (I'm already taking 2-3 pills per day!) and if I don't feel better in a week, then he will order an abdominal CT scan. So I know he's not ignoring me, but I'm frustrated that we aren't trying something else to bring down the inflammation from the ileum. I was doing fine before Sept. Maybe I'm just losing my patience! Any ideas are welcome. I'm getting cranky and exhausted from never feeling well!!!!

I'm sorry that the entocort doesn't seem to be helping. It's really supposed to work well in the TI, so perhaps there are other issues higher in the bowel. Have you done a barium series recently? Is a pill cam an option? Or waiting for the CT scan - maybe that will show you some good info.

Thanks for the responses. I have really liked and respected my doc, but he does have me confused. I have had IBS with some constipation my whole life and it has never been this bad! Furthermore, I don't get how I did just fine in remission with my fiber, diet , colace etc, then I get sick then they find inflammation on colonoscopy and biopsy, yet he is passing my symptoms off to IBS since the entocort didn't work! He is doing a 6 day taper off the entocort. He says we can do it quickly since I haven't been on it that long. Then I'm supposed to call him to set up the CT scan if I don't feel better, so I guess I'll just do what he says. I had a pill cam about 5 years ago when I was very anemic, and they found a bleeding ulcer in my small intestine just above the TI. My labs were normal in Sept, so I'm not anemic now. (I don't really feel anemic either.) So I guess he doesn't think I need the pill cam now. My thought though is that if there was Crohn's in my small intestine in the past, might it be back, but just inflammed but not bleeding? Will a CT show Crohn's in my small intestine as well as a pill cam? He never did a barium swallow before, I don't know why.

I guess I wasn't assertive enough. He didn't rush me, and I normally am pretty verbal and assertive. I was feeling weak, nauseous and sick at the appointment...not my best powerful woman self! I kind of wish I had a fairy godmother to come and figure all this out for me. I'm getting way too tired and sick! Thanks for listening. I'd really go nuts if I didn't have you folks, that's for sure!

Kinda sounds like you have a stricture going on in there. When I was seriously constipated I was so nauseous all the time. I thought at first it was an ulcer or something, but tests finally showed that it was a stricture and I ended up having to have my second resection. Good luck!

Thanks for all of the support. Just to clarify, my doc is not at all doubting that I have Crohns. He is the one who diagnosed it in the first place. He is just thinking that my constipation issues are more from IBS...I'm not sure I'm buying it! Nanners, I didn't start getting naseous until I started the Entocort. So I guess I'll taper off the Entocort as he directed and see where we go from there. Nanners, would the CT scan show a stricture? Thanks everyone for your help.

Hello, Gumby!

I would not add anything, since I do not have experiences with problems as you are. Yet, I would say. Pill cam is good option, but dangerous if you have stricture(s). SBTF is fine one. Go get it. Maybe an MRI? And maybe try some liquid stuff to make you feel little better and not to loose weight.

Wish you best and have rest, Gumby!

YP9

Thanks conmire,

My GI is telling me that the area in my ileum that is diseased is small...only about 5 inches, and the bowel juncture where the ileum meets the colon is "slightly twisted." He says it's not a stricture, and it shouldn't be causing "that much trouble." The diseased area does test positive for Crohns. I'm thinking of picking up the written report of the biopsy to read it myself. So I guess because it is "small" he is thinking my severe symptoms must be IBS/ constipation. I don't know anymore. All I know for sure is that I am sick and miserable!

Just want to let you know that I'm hoping and praying the docs will figure this out and get you better quickly.

I had a contrast MRI in Jan this year when my CD flared badly and it showed I still have a major stricture about 12 inches from my stoma. Contrast scan may be safer option than a pill cam if areas of narrowing are suspected.