Doctor says it like pulling teeth???!

I got released yesterday from the hospital on 40mgs of prednisone, 50mgs of 6MP, and 12 asacol pills. NO RECTAL MEDS. Which I find strange. Anyway, I was told that my proctitis has moved into my sigmoid and I have Proctosigmoiditis. I just spoke to the on-call Doctor because my pain is still pretty bad and I have been trying not to take the percecet. Anyway I said what is the difference between Proctosigmoiditis and left-sided colitis....and he said it's basically like pulling teeth. Anytime the disease spreads past the rectum it is considered left-sided colitis. But when I read...

http://www.ccfa.org/info/about/ucp

it clearly states there is a difference.

Anyway, I am pretty miserable and sad right now. And the ladies out there who know I have been ttc (trying to conceive) know that this has def. put my baby plans on hold....

Any advice? I am just surprised that it spread. I guess I always thought I would just have proctitis. My last scope was in October.

Sounds like my symptoms. I hope you're feeling better soon. I am so sorry you're so down. I always thought I would just have proctitis too but I recently got much worse. I am sure it has spread past my rectum at this point. I can't even get a colonoscopy because I don't have insurance. Honestly, I wouldn't go to the hospital unless I was literally dying because id almost rather deal with death than debt at this point in my life It could be a lot worse hun. Get some rest and take the pain pills if you need to. You will be better soon and back to planning your next little one. I have my period and had bad BM this morning. I am feeling sort of down too. I don't even know if I have period cramps or gotta poo cramps, hah.

"like pulling teeth" is called an idom - means very difficult - hard to do/determine!

ElaineNY

Thank you all for your advice and care/concerns. I just got so confused because one Dr. said left-sided colitis and one Dr. said it was proctosigmoiditis. It really looks like anytime inflammation passes the rectum it is on the left side.

I am more alarmed that I am not on any rectal meds. I have an appt Friday as a follow up so I will ask. So far still no appetite from the prednisone.   I am keeping my fingers crossed. Last time I was on steriods I gained a TON of weight!!!

I had a bowel movement this morning and there was blood. I know I have to give the 6MP time. I still can't believe that regardless of where it is located, I need such a powerful drug to get me in remission. I tried rectal meds for the past year with asacol and a few doses of prednisone. I become resistant to pred and I had to choice but to take an immune sup. drug. I tried to avoid it sooo badly. I was so scared and I stil am.

Elaine - I saw your post and will comment on that thread...but your case sounds a lot like mine. I tried the enemas for MONTHS and MONTHS and no improvement. Obviously taking 12 asacol as well and canasa with the enemas did not put me in remission. So I had to move on. I know your concern with your husband though and I would not wish prednisone on anybody. I am coming out of my skin right now. I have to take SLEEPING PILLS with klonopin to even sleep. I am wack job! Anyway, I wish you all the best and thank god everyday that you are all here!!!

My prayers are with you and your efforts to conceive. I'm sorry you're going through such trouble, and I hope it gets better soon!

Wishful, I'm feeling alright. (I hate even typing that -- don't want to jinx myself!) I've almost tapered off the hydrocortisone suppositories, and have tapered off klonopin. In mid-December, I started taking magnesium citrate (Natural Calm) hoping it would help my migraines. Not only has it seemed to help there (again, knock on wood), but it seems to have improved UC stuff as well. And it definitely does help with sleep/anxiety. I can only take a little bit, though, about 100 mg, or stools get loose. And none of us want to go there on purpose! (I've also been eating a lot of sunflower butter, thanks to cfromutah and company, so getting a good dose of magnesium that way as well.)

Katie, I'm so glad you're in remission! I also remember when you started the diet; I keep reading all the spinach/sunflower posts but haven't buckled down and really gone for it, although I've always eaten quite a bit of spinach anyway.

Wishful, I hope and pray this year will bring a baby into your life...

emory

Emory - where do I get the natural calm? did you first try it for your headaches or for your UC? I have 2 jars of the sun butter in my house. I have not buckled down to start the diet. right now i dont feel like eating anything. i dont know if i am scared to poop or i just want to keep the area as calm as possible.

Elaine - i am following you very closely. Hoping and praying the enemas do the trick.

I just can't believe I am where I am right now.....it makes me sad.

Hey Wishful -- I got the Natural Calm at a local vitamin shop. I think it's pretty common; you can read about it and find it for sale online if needed. I tried it first for headaches, but had UC in mind as well because of the spinach/sunflower seed discussion. If you decide to try it, start really small -- maybe half a teaspoon a day at first -- and maybe check in with your doctor first, especially since you're on a new med regime.

The sunbutter tastes really good, by the way! You should try a spoonful if you haven't already. It's very smooth, so I don't think it would cause any problems on its way through. I understand where you're coming from, but try not to let yourself go too long without eating...I got into kind of a vicious cycle this summer when my flare was at its worst where the less I ate, the less I felt like eating, to the point where I was losing weight like crazy and had to force myself to eat tiny meals every two or three hours to help regain my appetite.

Elaine, my fingers are crossed that things keep improving with the cort enemas!

Hang in there, both of you --
emory