my situation is very much like ks1905. I read on here occasionally but rarely post anymore. I have had a jpouch since 2015 and this year have been diagnosed as Crohn's. I am currently taking Stelara....
3Time I've been out of the loop for a few days, please take care of yourself and best wishes on your recovery. How scary!...
I've had my Jpouch for 5 years now, and during my recent annual scope they found what they think is Crohn's disease. I am hoping I am like ks1905 and it is just a chronic pouchitis. They put me on...
I was told by local GI doctor that his choices would be Cleveland Clinic, Mayo Clinic, or Northwestern in Chicago when he decided I needed to be evaluated for surgery. I went to Cleveland had an...
Everyone has to base their surgical decision on their own health. Don't base your personal decisions on someone else's experiences. I would be up all night when I had UC. If I have to get up a time...
3time this happens to me occasionally even though I've had my j-pouch for 4 years. Every few months it seems to be an issue. It usually is when I've eaten late and/or I'm really tired and I don't...
3TimeChamp I have a jpouch too (4plus years!). This spring I had two different bouts with kidney stones. At first I thought there was something wrong with my jpouch or my liver (I also have PSC). The...
I've had my J-pouch for 5 years...no regrets. Is it perfect, no (but what is)! It's a million times better than UC! Like you, Andy, I was amazed at how quickly I was feeling better after the Step 1...
I had UC (now have a J-pouch) and PSC. I received my official diagnosis about a year after my last J-Pouch surgery. No one knows which came first for me and I think it is a moot point anyway. My...
Sara14 I notice you said you are a Federal employee with Anthem BCBS. I, too, am a Federal Employee with Anthem BCBS insurance. There are two plans to choose from in my state - Standard and Basic. I...
I had my final Jpouch surgery in February 2015. I still drink a gaterade zero or powerade zero everyday just to keep up and I sit at a desk at all day. I would definitely consider it since you do a...
Thanks for your reply Keith. I am not on anything yet; I have an appointment with my gastro late next week. I don't know if the PSC throws a wrench into it or not. My gastro dr. has a Jpouch too....
Thanks Keith for hanging around. I had a scope last week for my J-pouch as well but didn't get the good results you did. It seems I have significant inflammation and possibly Crohn's disease. The Dr....
I haven't taken Humira for four years, but I have Blue Cross/Blue Shield insurance and my prescription came from CVS Caremark. They received the prescription from the GI doctor's office. I just...
Hi and Congratulations on your baby. I had my daughter in Sep 2016 about 18 months after having my final j-pouch surgery. I didn't return to the hospital where I had my surgeries because it was 3.5...
I had FMT in the Spring of 2014 while battling a severe UC flare and C-Diff at the same time, which I would not wish on my worst enemy. It was absolutely AWFUL. I was hospitalized for two weeks. I...
VSL 3 helps me but the cost is a big deterrent for me. It's just not in the budget right now. I am taking a probiotic from Garden of Life and it is helping me....
Song and Champ, Sounds like you both are doing well and on the road to recovery! Hang in there it is tough at first but it will get easier. Isn't a great feeling to go to someone else's home and not...
100% agree with Bull. I am way worse if I skip meals or go without eating for awhile. It is much better to eat consistently throughout the day. Three years out from being connected, they are some...
I have a j-pouch as does my gastro doctor. I always have to get up at least twice in the night to use the bathroom. Sometimes, if I sleep too soundly I have had accidents which are really annoying....
Hi there, I also have PSC. I don't get on here much anymore but saw your post and wanted to reply. I was diagnosed after my Jpouch surgery. At first it scared me to death but I am doing OK. I take...
I had my daughter after getting my Jpouch. I had a fairly normal pregnancy. I knew from day one seeing the Ob-GYn that I would need a C-section. My main issue was gaining weight and as the baby grew...
I hope this doesn't come off rude but you need to settle down. It sounds to me like stress and anxiety are your problems, not UC. Maybe you should listen to the 4 doctors that you have been too. Many...
This is so incredibly sad to hear this. By reading his posts Joseph was a strong person, and he certainly fought a good fight. I am glad that he wanted you to let this forum know about his situation....
Bull did an excellent job of answering your questions. I have had my J-pouch for 3 years and I still use calmoseptine regularly. I still go 8-10 times a day and I regularly take imodium. I used to...
I've been reading your posts. I had the same problem as ByeByeUC, a recessed loop ileo. It was so much harder to manage than the end ileo from my first surgery! I would be in tears trying to get the...
Hi Marcell, I am writing because I have a J-pouch and PSC. I had severe pancolitis that did not respond to medicine. The surgeon described my colon as looking like a bomb went off inside. I don't...
I had my first Jpouch surgery 3 years ago. I'll try to answer some of your questions. 1. How do they choose where to put the pouch? The ostomy nurse spent a lot of time looking at my belly and...
I echo KulinaryKidz's comments. I am alive today because of the colorectal surgery department at Cleveland Clinic. My surgeon was Dr. Huang, she was wonderful. While I know she is incredibly busy,...
I just wanted to say that I understand why someone would be against surgery but I am almost two years out from my last J-Pouch surgery living my life free of pain, medication, and worry. I am also...
I was instructed to have no nail polish but don't know about acrylic nails. I think they put that oxygen monitor on your finger so they can monitor your oxygen. I had my surgery on an emergency basis...
Hi I had three bouts of C-Diff while battling UC. I took all the medication you noted and also Dificid. It is very expensive but thank God my insurance covered it. Nothing cured the C-Diff until I...
Hi there...I don't have any infertility information but just wanted to let you know that I understand what you're going through. I had my last jpouch surgery in Feb 2015. My surgeon explained the...
Hi there. I had my jpouch surgeries (3 steps) at Cleveland Clinic. My surgeon was Dr. Huang. The colorectal surgeons work together, maybe it was just a personality conflict between you and your...
I had bladder stents for my second surgery. I don't really know why they do them. My surgeon's physician assistant pulled them a couple days after surgery it was no big deal and I was able to use the...
Yousee I think you are going to have to go a couple times before you go for surgery. My case was different to start because I was already admitted to the hospital when I had the first surgery. I...
Yousee Cleveland Clinic is 3 hours from my home. I was admitted to the hospital there when I had my first surgery so my situation was a little different. After surgery I went back for 2 follow ups....
You see, yes you want the main campus in Cleveland on Euclid Avenue. The Department of Colorectal Surgery is part of the Digestive Disease Institute. I think the Cleveland Clinic main page has a toll...
You see, when Cleveland Clinic knows you are traveling a distance to come there they schedule you for as much as they can in one day. It's an all day project to go but my family and I accept it. I...
My GI had hinted around that I might need surgery but said he wasn't going to recommend until I went to Cleveland Clinic or Mayo for a second opinion. I had pancolitis and 3 instances of CDIFF. Much...
Glad to hear you are getting along very well. You are absolutely right that the walking helps so much. Sounds like you had a fairly good experience at the hospital. I had my surgery at Cleveland...
Good luck to you Katehugs713. It is exciting to be getting your life back but at the same time it is OK to be nervous about the surgery and what happens next. The Ostomy board is a wonderful resource...
I just wanted to offer you all the best today. You are not a baby, this is life changing stuff. All of your feelings are completely normal! I am going to tell you what my surgeon told me as they...
I had three bouts of CDIFF in three months. The smell and urgency is indescribable. You could be one foot in front of the toilet and not make it in time! CDIFF was probably the worst thing I've ever...
I had 3 surgeries to construct a J-pouch. Your issue happened to me too after my first surgery. No one told me this was a possibility and of course it didn't happen until I got home from the...
My loop ileo also ran like a faucet, it didn't matter what I ate it never cooperates. I only lost about 10 pounds. After my takedown I put that 10 back on plus 10 more because I eat a lot. I am...
Bukowski, you sure have been through a lot! It is a big adjustment to learn how to manage the stoma, but you will be able to do it and in a few weeks it will be just one more thing you have to do...
It would involve travel for you but I vote for Cleveland Clinic. I could not have asked for a better experience. My surgeon is Dr. Huang. She is a surgeon that also does colorectal research. I didn't...
As if having a disease like UC is bad enough, it has to mess with your hair too. I had the same problem too, my hair was awful. It wasn't great before my diagnosis and I kind of think that might have...
Hi Matt, I did remember your posts after re-reading. Glad you got into Dr Remzi and he is able to help you. Good luck with your surgery! As I told you a few months ago I love Cleveland Clinic. The...