Female, 23, Ulcerative colitis (pancolitis) for 8 years so far; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use....Current Meds: Lexapro 10mg, Lialda 2 pills a day, Rowasa enemas nightly
You all know Bratcat's story from the UC forum. She only had UC since September 2006. She only flare 3 times. But those flares cost her to miss out on quite a bit of her high school years. She never had accidents but when she flared, she would go to the bathroom 40-50 times in a 4 hour period. The only "real" medicine to help her was prednisone. As a family, we talked alot about her choices. As we (especially her) came more and more accepting of surgery, we realized this would be a better time for it. No job worries (other than a part-time afterschool job), no insurance worries (still under ours), no money worries (at least not for her). The hope is that with surgery, she can go to school, enjoy being a teenager, and go on to lead a healthy adult life.
It was very hard because she was in remission by the time surgery came (she was down to 5 mg of prednisone from a high of 60). Going in to surgery, the surgeon reminded us that if it turned out to be Crohns, she would get a permanent ileostomy. She had as many tests as possible to rule it out but the thought still lingered. After her step 1 surgery, we asked the surgeon about her colon. Truthfully, he said it was somewhat inflamed. Not great. Not horrible. Not, you are so lucky to have had the surgery right now. He and the GI feel that was mostly because she was in remission. Which is a big plus going into surgery.
Bratcat is looking forward to being on the other side of surgery. Finished with the surgeries, finished with the recoveries, living her life in a new better way. For now, she is accepting of her ileostomy (no, she still doesn't like it). When the surgeon asked, she told him that no, she doesn't feel better now than before surgery (but that is because she was in remission). But she is very happy not to have to take medicines, excited about not having to worry about flaring again. She is going out more and more with friends. She didn't in the beginning after surgery because of her lack of energy not because of the stoma. She is counting the days (73) until her reconnect surgery. She worked it around her school schedule so as not to conflict with too many things she wants to do. She has been sick for the past 2 years in Sept-Nov. She plans to use the month of November to recuperate and hopefully be able to go back to school in December.
I think alot of choosing this surgery electively is your mindset. You have to go in knowing that it is a major surgery and will require major recovery. It will be a better change but it will still be a change. Life won't be as it was pre-UC. Her bathroom trips may be more frequent and much looser. There may be some issues to face in the future. But she should have no urgency, no horrible cramping, no fear of future flares for the next 60+ years. It also helps to have a great support system. Our family understands what she is going through and accepts her as she is. Ostomy jokes have become an extension of the many bathroom jokes in our family.
I am sure you are hoping to hear from someone other than who you have heard from before. And they will be along. But I am a proud mommy who has watched her bratcat of a daughter face a tough situation. She had to process alot of information about her life now and in the future (not easy for most and especially not easy for a teenager).
If you ever want to talk, I am sure Bratcat would be there. Of course, I am always here too.
I was one of those who chose elective jpouch surgery. Elective meaning that I was not severely ill when I made the decision. Believe me, it took a lot of mindful struggling to get to the point of having surgery, along with months and months of research and education. What sealed the deal for me was meeting another jpoucher face to face and hearing her story. I happened to be langushing in the hospital on best rest when she told me that she formerly had UC and opted for surgery. She had the same issues I had; lack of quality of life with UC. I was amazed at how healthy she looked, amazed that she worked 10 hour days on her feet, and amazed that she ran marathons and ate anything she wanted. She had everything I wanted. I wanted my life back. I wanted to hike and backpack. I wanted to make travel plans and keep them. I wanted off medication. I wanted a life that was free of knowing where every toilet was in town while I was out doing errands. I was sick of compromising and felt cheated out of two years of my life.
Four months after meeting the nurse I had surgery. It has been a blessing and there is not one day that goes by that I don't silently thank my surgeon for giving me my life back.
Surgery was a big decision for me. I think I was ready to make the decision because I went back-and-forth about it in my head but what really did it was when the doctor fussed at me about re-filling my prednisone.....I was denying that I was steriod dependent....I could not get off it without getting super super super sick. I felt like I was addicted to prednisone and that I was begging for it. I scheduled my surgery the next day.
I gotta tell ya, I remember the first time that I looked at a stoma on the Internet a long time ago and I was determined that there was NO WAY that I would have one of those......NO WAY!!! Well, I do now and it is not so bad. I gotta tell ya, a couple of days ago I was feeling kinda sick.....I had a very slight fever......I felt alittle nauseous and it reminded me of when I had UC. It about put me into tears because it reminded me of how I felt everyday when I hit 10 mg of prednsione. Boy, that really reminded me that I am so grateful to get that nasty and diseased colon out of me. I fought and fought and fought to keep it but I really sacrificed precious life/living because all I did was suffer with it.....bleed, dehydrated, urgency, mucous, nauseous, fever....... I was choosen for the 3 step procedure for the j pouch and I have step 2 in like a month or so. I know that I was sick. The surgeon said my colon was like tissue paper.
I have to say that someone was right when I read a few years ago: "you should consider surgery when UC is affecting your quality of life". I don't know if I wish I would have done it sooner because I think it was good that I exhausted all my options so I know that I did all I could do but I was just not meant to have a colon.
Sincerely.....the bag is not that bad. Now that I found a perfect fitting bag, I pretty much do not notice it. I wear a bathing suit and swim etc and my family looks at me in a suit and they can't even see it.....they often say that they forget that I even have it. You can have a normal life with a stoma.
I have had my ileostomy for a long time. Just last month, a good friend of ours just found out that I have an ileostomy and she was so shocked. You see, the four of us (my DH, her and her husband) go to sprint car races, NASCAR races, etc. Some of those events are all day long events, esp considering the drive to get there and the cookouts before and after the races. She just had no idea. She wasn't grossed out, but just really had no idea. She knew that I had CD, had had multiple surgeries when I was younger, and have a hard time gaining or keeping weight on.
For what it's worth, her response made me feel good... you see, even really close friends don't Have to know unless you want to tell them. They sure can't see it.
Good luck in your decision.
Post Edited (nene205) : 9/8/2008 9:12:48 AM (GMT-6)