So sad. From the sounds of it he was going to have surgery for his UC, but got pneumonia and other complications. http://m.huffpost.com/us/entry/glenn-frey-dead_us_569d5f8ee4b0cd99679b1a75...
I also wanted to add that we just got back from a fantastic cruise. We had 3 days of excursions in port and I had no problems any of the days. In fact, we went cavetubing and had no access to a...
I agree with all the others who have had surgery. It was a long road, but I have no regrets. I remember having to miss choir performances, pooping in the woods because I had to go "right now" on a...
I can give you my experience. After a while, you don't need to carefully hold it until you need to go (unless I eat something that my pouch doesn't like). It feels like when you have to pee...a...
That proclamation was made May 25th, 2011 and it was by the democrats in the Senate. I'm sure the republican-led house of representatives would have instead stated in all of their ignorance "Can't...
Wow, you do look great! Hope all continues to go well....
Both surgeons at the CC said they would strip the rectal cuff (both are very experienced surgeons). I am glad they did because they told me if you don't do it you can risk having the disease in the...
I've never done a clinical trial so I can't speak to that, but I say at the very least go get a surgical consult now. You don't want to have to have emergency surgery--you don't get to pick your...
I feel like it's more like Remi and surgery or just surgery. My surgeon said that Remi for UC doesn't have that great of track record. It works in some and then it loses its effectiveness. So, why...
I was very sick on Imuran and not as sick on 6MP. Couldn't stay on 6MP, though, because of elevated liver enzymes....
Yea, you are getting it done! You are in good hands with any of the surgeons at CC and the nurses are so wonderful. You will probably want to stay a few more days in town after they release you, just...
My first days were exhausting. Fun to see all the "cute" freshmen getting lost today :). The reason I didn't go the biologic route was for the exact same reason. My dr. said the same thing. Why...
I think you should go to the j-pouch site or the ostomy site on healing well and start a new thread and ask about surgery. The only reason being is I would like Suebear (and others) to get in on this...
Also, ask on the j-pouch.org site about j-pouch surgeons. I saw a thread about them in your area and someone said Johns Hopkins didn't do the j-pouch in 2-steps, only 3. Also, someone was talking...
The anal mammography test is where they put this balloon type thing up there and I think you have to hold it in and they measure it. Maybe they measure you pushing it out, too? That's good that your...
Oh my gosh, I completely forgot about the pain I had around my breast bone. At the time I was worried it has something to do with my pancreas or liver. It went away right after I went off the meds....
I don't mind answering the questions at all. It makes me feel like I am paying back for the all the help I received from here. I go between 6-8 times a day. Sometimes during my period I go a bit more...
I was on Imuran for about that long and starting getting very sick (nausea). Starting vomiting and felt like I was going to die. Went to the ER and they thought it was just the flu. My GI told me to...
Peace&Harmony----yes, what notsosickly said. I had mine done lapro and I'm not going to lie, it was very painful, but much better than open I am told. As far as rectal inflammation, mine was really...
I know it's really hard, but to make you hopefully feel better on a few points...I had my surgery on January 4, 2011. My initial plan was to wait until the summer to have take down, but I hated the...
Sue, Thanks! I am out living my life. I do like to check in every once in a while, especially when people are making this hard decision. You helped me and I am eternally grateful. I don't think I...
I know that it's really hard for people who have their colon to understand "committing to 6 BMs a day". But, really, it's not like that. Do you say that about going pee? We are supposed to go pee...
I'm another one that has had a successful j-pouch experience. I would not have been happy changing my diet that much and I was just done with all the medications, their ineffectiveness and their side...
I don't know what you have tried, but if you are at the Humira/Remicade point, probably everything? Have you spoken with a surgeon? You don't have to make any decisions, but if you've exhausted all...
Good luck with your j-pouch. I suggest you go to http://www.jpouch.org/. It is a wonderful resource for j-pouchers. I had my j-pouch done at the CC in January of 2011 and take down was in April. The...
IMHO, it is way too soon to talk surgery. I'm usually the person to say, stop suffering and have surgery, but that's only if you have tried lots of medication and are miserable. Most people "know"...
Yea!!! Hope things continue to go well....
My first surgery I was out from work for 6 weeks, I think my takedown (2nd and final surgery) was 4 weeks. It was really hard and the first year isn't easy (although after a few months it was much,...
Thinking about you today. Hope all went well. Will you be having 3 steps? When you are up to it, let us know how you are doing. It's a long road, but it sounds like you are in good hands, and for me...
Christine, I totally understand needing to vent. Only the people who have actually had the surgery can understand this stuff and it's frustrating when others don't understand and try to tell us what...
Maybe it doesn't equate satisfaction to you, but according to the people who have had it done, even if they eventually had to have surgery, they are still satisfied. I also would love to know among...
Thanks Marianne! I forgot to mention the no urgency and pain. That is HUGE! I remember being in the car and trying to get home or to a bathroom actually screaming with pain. My poor family felt so...
Again, beatUC, people are supposed to pee that many times a day and it really isn't any different than having to pee. I pee, I poop. Is it unacceptable for people to pee 6-8 times a day??? If not,...
Notsosickly...don't let going to the bathroom 6-8 times a day stop you from surgery (if one day you need it). I was watching Dr. Oz a few weeks back and he said a person is supposed to pee that many...
My experience has been similar to the others. It's been a little over a year since take down and no regrets. It's not like pre-UC, but 100% better than with UC....
Call your GI. You may not be taking enough Asacol or it might not be working anymore (I think I took 9 a day). There are lots of other drugs you can take to get back into remission. So sorry you feel...
I am so sorry you are going through this. Have you talked to her doctors about a j-pouch? I have heard that if they get it when they are young, that it works better than if you have it as an adult. I...
I concur with all those above. If I was you, I would start looking for a skilled surgeon now, so in case you have to make a decision quickly, you are prepared. I traveled to the Cleveland...
I can relate...I work at a school and feel the same way, and I'm an adult! I sometimes use the nurse's office or just wait until nobody is in the bathroom. I did talk to our nurse about this today...
Regardless of what you decide, I would consult a top-notch surgeon to discuss your alternatives. That way, if you do run out of options, you already have the information you need and a surgeon. I had...
Summer...hang in there! I'll be praying your surgery goes well, if that's the way it works out. Keep us up to date....
Thanks! I'm going to go to CVS now! You know, since I'm off all that medication, they really miss me there so they will be happy to see me. It's pretty bad when you walk in the door and they greet...
I have a neti-pot so I will try that. Thanks! So Sue, even though it's 12 or 24 it's safe for us to take? I wasn't sure if the reason we shouldn't take it was because it would cause too much...
I am definitely going to try the honey. I have some that I think is local that one of the kids from my class gave me for Christmas, so this would be easy to try. My pouch has gotten used to sweets,...
Happy Anniversary!!! And here's to enjoying many, many more!...
Since we have had such a mild winter, my allergies are really bad this year. Can you tell me what you take for your allergies? So many of them are time released which doesn't work for us. Any...
Yes, Colazal didn't work for me and then they tried Apriso. Also didn't work. Tried some other stuff and then had surgery. I am sure you will have better luck, though....
Do you have a blockage? How many steps are you going to have, 2 or 3. I had 2 steps and was in the hospital from Monday to Saturday. Stayed in town at a hotel til Sunday then my family drove me home....
This one and especially http://www.jpouch.org/. It is a great resource. Sorry you are dealing with this. A lot of people who are having ongoing problems end up at the Cleveland Clinic and Dr. Bo Chen....
I had this same experience when i went to Indiana University Hospital. It was the first and last visit I made there. I did not like that at all. Having to walk to the OR and go through the same...