You wana do what to me??

[BLM]

Ok, so the saga goes on...I had a pill test done twice, and the results are shocking. The first time they said technical difficulties were a problem so they had to do it again. The second time, they had same problems. So if fasted for 12 hours before each test...the first time my small intestines were full of fluid so they couldnt get good picks, all they could see was what looked like diseased intestines before the pill got stuck. Then they saw nothing...the pill never moved for 12 hours! The second time all they saw was impacted food, and again the pill never moved! So my gi said the intestine they saw looked grey and had NO motility to it, and the second time, it looked worse than the first, quiet distended, no bright red fleshy stuff, and pill was stuck in same spot for 12 hours. So when I met with her today she gave me something call sclenoderma gut, which is an auto immune disease where the guts dont work....they dont push food thru and the intestines become so damaged over time they die (turn grey). So, they want to sechedule me for a small intestime resection!! OMG, are you kidding me?? And they dont know who much they need to remove because they couldnt see anything....WOW!! I just keep getting knocked down over and over. Also while in there they need biopsies of my liver and plan to remove some mesentery lymph nodes, because there are reccurent problems there too. WOW!! And they want this all done ASAP.....WTH....Im freaking out...I dont need anything more of this sort, Ive had enough for one year.....Im feeling like I need a good cry~

 

[Crohn's 35]

Ouch that sounds like a raw deal! I wouldnt have surgery unless they did a colonoscopy or a second opinion! I know surgeries can be of great relief but not a wing and a prayer! I wouldnt trust that answer and you have the right to a second opinion. There isnt enough money to pay me to have a pill cam!

 

[Entchen]

Oh you poor dear!

Have they considered a double balloon colonoscopy / endoscopy, in which they can try to see all of the small intestine?

Take good care.

 

[DustyKat]

Whoa Bev that's a lot to deal with.

I can understand the need for urgency if your bowel is dying but why does the doctor say you have Scleroderma as opposed to severe Crohns?

I'm just curious because if your bowel is that inflamed it would be extremely narrowed and wouldn't that be just as much cause for impacted food and lack of motility. FWIW when Roo had her surgery her bowel was severely diseased and the appearance was extremely swollen and inflamed with areas of grey and black tissue.

Dusty.

 

[Jennifer]

Well if things are stuck and nothings getting through, medication isn't working and it looks like your intestines are dying, then ya I can see surgery being the next step. I've had a resection and in truth it wasn't fun but it was needed and once I was fully healed, I felt a lot better. You may have to wait for an actual diagnosis, but at this point they need to deal with the problem at hand. Its common for them to not know how much they will be removing until they get in there because things can be missed during a colonoscopy or an endoscopy. I don't really know how you feel but it sounds like waiting for a third opinion may take too much time but only you and your doctors can make these decisions. I hope you get this figured out soon and hope that you'll start feeling better.

 

[Crohn's 35]

Yeah I agree with Crabby, surgery could be the best thing you ever did...never heard of your results put that way before. :hang: let us know what happens!

 

[Dexky]

Bev, I'm sorry you are going through all this at the same time as worrying about your son!! It's too much!! We're here for you!! I hope we can help you cope!!