PS Dr Colvin at Fairfax colorectal is also an excellent surgeon and probably has the most experience with jpouch surgery after Dr Wiltz in the NoVa area....
Suzy, I assume you had selected Doctor Wiltz. I'm very sad he resigned as he performed my colectomy and I had been seeing him for years. He's an amazing surgeon and nice too! Since he's left I would...
I had stents for my step one surgery as well. It's just a precaution to keep your urinary tract safe. The urologist put them in and took them out while I was under anesthesia. Like others have said...
Good luck blksteeda! I am 8 days post-op now for step 1. I also had UC for 15 terrible years and can honestly say 8 days out from surgery #1 that the prospect of living with a bag forever is better...
Suzy-q, my surgeon is Dr. Othon Wiltz. He's super experienced, a Columbia university medical school grad, former adjunct professor of colorectal surgery at Harvard. Also importantly he is a super...
UB, a Crohns diagnosis doesn't necessarily mean you will end up with a bag forever. They left my rectum and I will have the option of having my small intestine reattached to that if a j-pouch is not...
Yeah I wouldn't have been worried about the pathology report either but this dang fistula put doubt in my docs head. Crazy since I've had 6 colonoscopies and the biopsies always come back as...
Had my colon removed on Thursday 9/3. Went home on 9/6. I know it's early but I cannot believe how good I feel and I am wondering why I didn't just bite the bullet and get this done sooner. Well, we...
I had the same problem. I couldn't seem to get a good breath 7-10 days after an infusion. No wheezing or anything like that. It was odd, I just couldn't seem to fill my lungs. This of course caused...
I am having elective surgery on September 3. It's a tough decision because its irreversible. That being said I already have a good relationship with the top surgeon in my area but I did research some...
I feel like I should provide an update in case someone comes upon this thread in the future. I certainly did have an abscess. The ER doc missed it completely despite the MRI and me insisting that I...
6 tablespoons of Milk of Magnesia and 2 fleet enemas. No food after lunch the day prior. Just had one yesterday and I am still recovering from the dehydration....
Hey, just wanted to sympathize with you shmoopy. I've had UC (or what I think is UC) for over 15 years. My surgery is scheduled for September 4. Just went to see my surgeon yesterday and they have...
I actually started getting relief 3 days after the initial loading injection. I was bleeding heavily and it completely stopped within 7 days of the first loading dose. It was crazy. Unfortunately now...
You should check out the Medstar Georgetown University Hospital. They have an IBD center with a couple of docs that basically just see us IBD patients. The infusion center on site has weekend hours....
I'm in the middle of a wicked wicked year-long flare. It's been rough but I've learned how to manage my symptoms to have a semi-normal life at least I had until this week... It all started last...
I doubt you are doing permanent damage since the inflammation doesn't sound severe. If you have a severe flare you can damage your colon and end up with pseudopolyps throughout your colon. I'd wait...
They will probably run some tests on you. Check to see if you are anemic or dehydrated. You'll probably get some fluids and you might even end up with a blood transfusion if you are terribly anemic....
I don't know if it's normal, but it happened to me too. Had a colonoscopy in November and there was a lone ulcer on the splenic flexure. Descending colon looked basically ok, sigmoid was pretty bad...
I'm in the middle of a 6 month flare (or as I like to call it, my "new reality") and I went on vacation a couple of weeks ago with my significant other and her family. My girlfriend assured me that I...
Remicade worked great for me until I had an allergic reaction to it about 8 months in or so. I'm currently on Humira which really only worked well for about a month. I switched to a double dose (shot...
I took Remicade for about 9 months. Put me into solid remission. After my third infusion I started noticing that I was having difficulty catching my breath for a period of about a week. Oddly enough...
Thanks for the feedback, folks! Yes, pb4 I am indeed in the USA and things do work a bit differently here. I am going to call the GI back tomorrow and ask for prednisone just in case I continue to...
So I am in a bad way. Bleeding, diapoos, etc. basically a classic severe flare. Went to my GI doc two weeks ago and requested Rowasa (the flare was just starting) because I didn't want to move to...
Laughingduck, I'm looking into Humira. I have a GI appointment on Monday. We discussed using Entyvio if I started to flare again (since it has supposedly fewer side effects than Remicade and Humira),...
Speaking from experience I was on Remicade for 9 months. It put me into almost full remission right after the first dose. Unfortunately I had to come off of it in February of this year due to nasty...
Embersglow1, I have a question for you. I noticed you haven't tried Humira, Entyvio (which was just released on the market), or 6mp. Any reason why you elected not to try these drugs? I ask because...
Don't join the Aetna federal plan. I was paying 10% out of pocket for Remicade. Ugh!! Will be switching to BCBS during Open Season....
I second fruitgirl's opinion. Prednisone has serious long term side effects and you shouldn't have been on it for this long. Bone issues, eye problems, etc. But wow! You are a stronger person than I...
It didn't cause my teeth to break, but it did cause them to be super sensitive to cold. Like I couldn't even crack a smile outside during the month of December without sensitivity/pain. Fortunately...
Been in remission since June of 2013. After a couple of rounds of prednisone I started on Remicade on 5/31/2013. Hopefully it will keep working. So far it's been my miracle drug as my stool went form...
Yeah I have been off of the pred for about a month now. I should have updated my signature block. THanks for the advice on the L-Lysine. I've hard vitamin C (and D perhaps?) might help me get over...
I had my third induction dose of Remicade last Friday and then Sunday I noticed these red dots on the back of my neck. I also had a spot on the side of my neck that was starting to swell. The side of...
This movie is also available streaming from Netflix for those that subscribe and are interested in watching....
I've given up trying to get the stains off. It is embarassing when company uses my toilet though. Rowasa enemas definately cause the worst staining....
Seconder, I don't have any advice, but I am really sorry you have developed skin problems. How many infusions/how long did it take for you to develop the psoriasis? I ask because oddly enough that is...
That's great!! Personally I always have "poop envy" with regards to my pets when I am flaring. I never take a "solid" for granted anymore!...
Well, I took the advice given here and called back and took a hard line with the insurance company. Luckily I had a paper trail proving that the treatment was preauthorized with a confirmation number...
I had my first Remicade infusion on 5/31/2013. My second loading dose is scheduled for this Friday. Imagine my suprise when I logged into Aetna's claim tracker and saw that the claim for the infusion...
I was really interested in nicotine therapy for treating my UC as well. This study concludes that using mesalamines (e.g. Asacol) and nicotine therapy had better long term success than pred and...
I had my first Remicade infusion on 5/31/2013 and it went great. I was a bit tired afterward, but I blame that on the premeds. The day after the infusion (Saturday) I felt perfectly fine too, and I...
I was around 19. Now I am 33. For the first 10-11 years I got by with just using Asacol and it kept me symptom free....
This thread is a bit old, but if you are still looking I would recommend Dr. Othon Wiltz at Washington Colorectal Surgery in Arlington, VA. His practice does laparoscopic/minimally invasive surgery....
For what it's worth mine has certainly progressed over the 15 years or so since I was diagnosed. Started out with proctitis, then Proctosigmoiditis. Now I have pancolitis. Oral mesalamine and enemas...
Well... it's official. Last night out of the blue I started hemorrhaging in the toilet more so than normal. We're talking massive amounts of blood - it looked like a murder occurred in the bathroom....
I started taking Accutane when I was 18. I was diagnosed with proctitis at 19 and then with UC at 20 as it was discovered that the UC was actually causing my proctitis. Clearly I can't prove that...
I was in the hospital for 15 days back in November/December of 2010. Nasty flare and cdiff infection (that I picked up from my 6 day stay in the hospital in October of 2010). I was treated with...
Thanks to everyone for the responses. Rest assured I realize the decision is highly personal and is mine and mine alone. I am carefully weighing my options and the information many of you have...
I’ve been lurking around here for years, but I never had a reason to post because of the wealth of useful information. Basically every question I have ever wanted to ask has already been covered....