Yes been tested for c diff many times and always negative. Never for cmv. At this point I may go to the Cleveland clinic for another consult. I really wish there was a minor surgery that could just...
I've tried every rectal therapy and oral and I'm totally miserable. Didn't think it would be this awful after all 3 surgeries. Seriously not sure what to do now....
Yes I have chronic cuffitis been on abx and now on more....
Hello. I had an ileostomy for 6 months and they were by far the worst of my life. I've had a j pouch now for almost 7 months and sometimes find myself missing not having to run to the bathroom...
Hello all, looking for some suggestions. October 2013 I had stage 1, December 2013 stage 2 and March 2014 stage 3. 6 months later and still pretty sick. Can function, go to work, get through the day,...
Hello. Sorry if I'm on the wrong board but I didn't see one specific to my question. I'm about 6 weeks out from having my take down; have had many complications, etc...finally glad that I went...
Thanks all. My surgeon wants me to eat more fiber and has postponed my return to work for 2 weeks. I'm feeling calmer!...
Thank you both, I really appreciate your kind words. I'm impatient and with 3 yo twins, it's so tough to keep missing out on life. Knowing that I had no other option gives me some solace, and I do...
I apologize to anyone who has yet to complete their surgeries, and I'm certain in a year or so I'll feel differently, but I wish I'd never had any of these 3 surgeries. If the doctor hadn't told me...
Has anyone started drinking diet pop again after ostomy reversal? If so, how long did you wait? Thanks!...
Thanks Sue, I cannot believe how much difficulty I've had every single step. Scheduled to return to work April 21 and just praying I can. I've got an hour commute and can't just sit at a desk all...
Hi all. I knew going into these 3 surgeries and recoveries would be very difficult, but I thought almost 2 weeks after my takedown I'd be doing better, especially having been told this last surgery...
Thank you, I'll increase my walking. I walked a ton in the hospital but it's definitely deceased since I came home. Thanks again!...
Hello all, so I had my takedown Monday 3/24. Went home late Wednesday night, still in a ton of pain and I actually think my abdomen has become more swollen since I came home. Is that crazy? How long...
Thanks to all. I appreciate it! Ready for this next step; I've heard that you should slowly incorporate new foods over a year. I presume I'll be meeting with the dietician before I'm discharged....
Thank you! It is so weird and almost invisible. Is the reversal surgery and recovery easy? I mean, in comparison to the last 5+ months it's got to be! I've lost 25 pounds, not that I'm complaining...
Good morning, so my TD is in 9 days!!! My stoma is barely visible, literally it has shrunken and recessed so much that I'm wondering if this could prevent the TD...maybe I'm just worrying for...
Hello, my TD is in a few weeks. Are there any signs or symptoms I could recognize whether my J pouch is leaking right now? My enema is Monday and I'm praying it's NOT leaking, but would I even know...
Thank you soooooo much ByeByeUC. I will do that! Takedown will be one of the best days of my life...probably a piece of cake recovery compared to this fun....
Thank you! I know others have had a super rough time with the stoma, but I feel like is the hardest time ever! My stoma has shrunken and is so recessed; the ostomy nurse said not to worry but I'm...
A little stool is OK, but what about a lot?...
It's not mucus; I know b/c I was expelling a ton of mucus, my fecal cal was over 2500. This is definitely not mucus....
Hello, quick question. I have an ileostomy and have just started to excrete out of my bottom as well...I know that can't be good. My enema to check whether my pouch is ready for reversal is scheduled...
Thank you. I've definitely had my share of setbacks from the first two and just can't wait to be put back together!...
Hello all, after a hellish 5 months, my take down is in 45 days! What can I expect from the surgery, recovery, and life after? Thanks!...
Thank you! I'm taking imodium, eating thickening foods and at about 28 ounces right now, pure liquid. It burns! Can't gain any weight, although I'm sure that will change soon enough. Thanks for the...
Hello, information appreciated from anyone who can help. I had the second stage of my three surgeries 4 weeks ago. Not doing so well. How many ounces of output should be the daily amount from the...
Ha! I would be so scared it wouldn't go through to the bag, or get caught, or cause a blockage... My surgeon just told me that if I'm healing well, my 2nd surgery can be 12/23 so that's good news!...
Thank you both, I appreciate the input. 18 more sleeps! I'm 123 right now so just wondering how drastic/or not things will go...I foresee myself being very scared to eat after the first surgery until...
Hello, So I've got my pre-op appointment next week (1st of 3 surgeries in 3 weeks) and am starting a list of questions for the ostomy nurse and the PA; already met extensively with my amazing...
Hello all, my first of 3 surgeries is quickly approaching. Wondering if anyone who has had the 3 stage surgeries can tell me a little about weight loss and gain in between all the surgeries. Just...
Not really behaving, still go a million times a day and incredibly uncomfy, not sure about the weight gain though. Oct 14!...
So of course now that my 3 stage surgery is scheduled, I've been able to eat more and gained 5 lbs this week! Water? Weird. Maybe I don't need surgery anymore :)...
Liz, you described a lovely appliance after your 2nd surgery in your blog. Does everyone have the pleasure of using this or is it case by case? Stage 2 is what's really scaring me now......
Thank you all so much! I am feeling relieved, slightly, knowing that in 6 months(ish) I'll be a healthier and happier person!...
Thank you, Liz. I'm so happy you're done and back in the world! I hope I'm as resilient as you, although I'm not as young (33). I'll definitely check out your blog! Here's to a long road ahead that...
Hello all, I was advised to seek guidance from this board regarding my questions; thanks to anyone who can provide assistance. My surgery is scheduled, and unfortunately, I'll need the 3 stage...
Thanks, Sue. That's exactly what the surgeon said; b/c I've been on prednisone for more than 1.5 years, she doesn't think it would be at all safe to do this in 2... Thanks again....
Thank you. It's on the books for 10/14. I was floored when my 2nd opinion said it had to be done in 3 stages; HUGE difference from what the first surgeon said...but I know the first was an ass and...
Hello, how many have gone through 3 surgeries and have positive and helpful information to share regarding recovery, diet in between surgery, activity restrictions, etc? Thank you to all....
That is what I'm trying to prevent. I don't want to have emergency surgery which is why I've made my surgical consultations in attempt to gain more information. I wish it was cut and dry, literally....
I know I'm constantly miserable and have awful QOL, but I don't want a bag forever. I'm terrified that I'll go through the surgery, rough recovery, a second surgery, and maybe it won't totally cure,...
Sorry to be a broken record, for those successful surgery goers, how do you know when it's really time to do it?...
Has anyone had a laparoscopic colectomy after having other abd surgeries? Thanks....
What is actually taken out with a colectomy vs. proctocolectomy? Devising a list of questions for Thursday. What are recoveries and life afterward like? As I understand it, my disease is worst from...
DB, conflicted because at times I feel I can tolerate living like this while other times I'd have cut my own colon out and been happier! Tough decision....
Thanks, Liz. I was initially diagnosed with left sided, and then a different Dr.said pancolitis so who knows? All I know is that I'm totally conflicted as to how to proceed and seriously hope I learn...
Is 70 cm equivalent to pancolitis? Or rather, the increase? Clearly, I'm just really conflicted....
In preparation for my first surgical consultation this Thursday, I've been reviewing all my GI records since diagnosis. Today I noticed that in December of '11 my disease was said to be measured at...
Uceris did absolutely nothing for me. I was told that it was so amazing and would show improvements by week 1. I stopped after a month and back on prednisone, my nemesis. Good luck to those who...