Hi Roberta,

It does seem like you are having a much tougher recovery than you should be. I know they say it could take up to a year but you have been thru the ringer already. What is your surgeon saying? I'm assuming you are still under his/her care. I was hoping since you haven't been posting that you were doing better.

i was thinking the same thing as marianne....i had paid attention to your story, because we had takedown at similar times (mine was 4/13)....i had hoped you were doing better. im definitely interested in hearing what comes of this....

if it helps at all, we were around the same time, and im not doing stellar by any means...still slow going for me, and im still losing weight...and get some ser

let us know what you find out!

Has your UC been confirmed. You saying you had sores in your mouth made me think of CD since it can run through your whole digestive system.

I saw you are from MA. If you are in the Boston area, and want a second opinion, I know some good docs.

Hello all -
Since the takedown 4/30 still on a piccline now every other day. My WBC count is still abnormal, the VN comes weekly to change picc line dressing and take blood. I can eat however, I don't have much of an appetite. Not sure if it is from being on picc line or just being afraid to eat. I make sure I do eat, though. Don't want to go back to how I was feeling in May and June before the picc. Surgeon thought I was checking out (if u know what I mean). I told him I know I was. My body didn't react well to the 2nd surgery at all.
I am going anywhere from 4 to 10 times a day, now. That is a good sign from 20/30 times.

Jeff P. I did have UC confirmed and I saw with my own eyes the colonoscopy proc. back in 2007 (no meds) the disease at its finest. I have mouth sores now and low grade temp on and off. Of course, I am not a doctor however, I know the symptoms of crohn's and having done infusions w/other patients w/that disease you learn alot.
I am still under surgeons care however, I did make an appt. w/GI. Don't see her until Sept. I did ask my surgeon a few weeks ago if he thought I had crohn's...wasn't too sure. I believe my GI has to make that dx. So, I was just wondering if anyone out there after having all surgeries to correct UC comes down w/dx of crohn's after.

Jeff P. I may take you up on that offer, soon. If I don't get some answers soon.

Trying to keep the faith and spirit up!

Roberta

Ro how many times a day do you go? If you don't mind me being too personal. I hope you are not loosing too much weight.

Roberta

Marianne - I didn't have the strength to post for a while. My hubby had to do everything for me. I got real weak and was bad there for awhile. Now, the mind is stronger but the body is somewhat stronger. I just don't know if this is what you are suppose to feel. I still say my battle w/UC was much easier. I know I was getting depleted (body) before the surgery. Maybe it was the meds that made me feel stronger.
This is quite the battle for me. I am taking one day at a time however, it is old. Want to do much more and still can not!
Roberta

roberta-
Sounds like you are having such a rough time. But you are posting.. so you on are the healing path! Think its a good idea for you to get to your GI and help sort out some of your details. Keep trying to eat in the interim.
hang in there.

RLC, so sorry to hear you are still in need of the Picc line. I had one for awhile after takedown, and know it is a lifesaver but am sure you are ready to be off of it and living more of a normal life. I still have lots of bathroom visits during the week, think it is my stressful full time job. I go at least 10 times a day if not more. I hope and pray soon you start to feel better.

I am on every other day for the picc line. Right now, I have alot of joint pain, ass pain, canker sores in mouth and low grade fever. What do you think my chances are Crohn's disease, now? Don't see GI doctor until beginning of Sept.

Roberta

"oh what fun I am having"

Your post surgery symptoms are different from what I went through long ago. I can't remember experiencing canker sores then. My temperature was normal after the surgery too. There's always the chance you might have been misdiagnosed, from everything I've seen and heard, UC and CD can be tough to accurately diagnose at times. I'm 99% sure though that my UC diagnoses was correct.

hello...to answer your question, i go around 7-9 times a day, but thats also with only consuming less than 1000 calories, often averaging only 6 or 700....im losing weight, but its been relatively slow i guess. i left the hospital around 192 and im now around 175...and my takedown was 4/13

Based on having had a colonoscopy w/NO meds and seeing the disease UC was the proper dx at that time. Now, not sure what is going on. I don't know if my body is just so beat up and depleted that this is something new (mouth sores and fever). Can't seem to get it together! I think I am taking a step forward and then POW another different symptom. I will be giving my surgeon a call today to update him.
Ro, I am not really counting calories but I do go anywhere from 4 - 10 times a day and not liking that at all. I am just sick of going all the time.

Roberta