What else is there to say but I have ulcer? I had my whole colon removed and a j-pouch was created and I was reconnected in March 2016. I had my annual pouch exam, which I call a pouchoscopy but even the doctors don't know what I am talking about, so I guess I need to call it a flex sig. I learned on Thursday that I have ulcers. My first thought was that I can't do this again. I wasn't sure I could do it the first time, but no one gave me choice, either. My doctor sent me home with a prescription for Canasa, which I told him wouldn't work, so I called his office from the car and they put me on hydrocortisone enemas. The pharmacy won't have them in until late Monday afternoon, after implying I could get them on Saturday. I hope they work. I could never hold them in before. Any thoughts on this? Also, my first doctor told me to pee and poop (sorry for not being my technical) at the same time and that was like five years ago. I don't know if this has become a habit or what, but I find myself emptying my pouch when I really mean to just pee. Is there a way to retrain myself? I think it is just my mind. I guess I am fairly bummed. It is hard to think positive when NOTHING worked in the past. And I wonder what the mind-body connection is. I am happy to do things to relieve stress if that works. I have thought a lot about the mind-body connection, like what if this is my fault? I guess I need A LOT of moral support, and if anyone has been there, I am sure it is the other members of this group. I may write more later, but like I said, I need moral support.
Hi, I was dx: in 1998 with ulcerative colitis nearly died. A dr put on sulfasidine 16 pills a day plus when I was really bad added canasa, meslamine enemas, predisone, humira, u name it. I have a decent quality of life until 2011 when I have some major tragedies in my life and by 2013 I had a total body shutdown. My colitis could not be control with meds, my entire colon was diseased. They said it had to be removed all of it and either a ostomy bag forever or a J pouch. I went for the J pouch. The 3 stages of surgery were brutal. I suffered and thought I wouldn't make it out alive.
The good news it is going on 4 1/2 yrs and finally I am feeling somewhat normal. I had to accept this is my new normal. I had PT for pelvis floor and do these exercised each day. I go to yoga which helps my core stay strong. I am on a gluten free diet, lactose free most of the time. I usually make my own breads and deserts. I eat a lot of fish and chicken. I take Imodium only 2x a day. I started a Medical food product by prescription only. One pack a day it's called enteragam. It's really starting to work. I was dx with siob, which is common for J pouch. I also take a ibs drug as needed called Hyoscyamine. Believe me it's a battle each day. Some days better than others. I can only take one day at a time and pray that I have more good days than bad. I don't k how long this will last but I don't think about it often. It's a hard road no doubt. No one can possibly know what we go thru unless u have. That is why this site has been such a great help to me. I took many advise from others and it's better than the dr's.
I pray u find ur right combination to make it work. Keep tweaking, I do and change up when it starts to fail. I want to be independent as long as I can. I will not go backwards. This is it and I am determined to make it work.