Saturday, January 26, 2008

Doin' Good

So everything went really well. Thusday was the hardest, I was so out of it and the morphine wasn't working very well so I was in a lot of pain. I have gotten significantly better everyday since then though so I can't complain. Today is an especially special day because after being on only ice chips for the past few days, I am being upgraded to a full liquid diet, including tomato soup! I absolutely love tomato soup and couldn't be happier. Tomorrow I get to have some more tubes removed and am VERY excited, I will be much more comfortable with these gone! Anyway, just wanted everyone to know that things went well and I am on the mend. I will be home tuesday for sure but am crossing my fingers for monday, we will see. Thanks so much for all of your prayers and phone calls.

Wednesday, January 23, 2008

Under the knife!

Tomorrow is the big day! I am feeling a little nervous but mostly excited. It's weird to think that after tomorrow my life will never be the same, but I think it will be changed for the better. Anyway, I have been on clear liquids for the past 2 days and am not feeling much like blogging, just wanted to keep everyone updated.

Sunday, January 20, 2008

Say What?

Ok, so I know that some of you may not be up on all the "colon lingo", I sure wasn't before I had this experience. So here is the very simplistic readers digest version of how things work. A total colectomy is having your entire colon removed. I will then have an ileostomy which means the doctor will take the ileum (last section of my small intestine) and bring it to the surface of the skin. An ostomy is the opening in the skin that the surgeon creates, a stoma is the end of the ileum itself. A small bag called a pouch is attached to the ostomy which catches the "grossness" (yes, that's a technical term) and which I will have to empty a few times a day. Most people get colostomy confused with ileostomy, a colostomy is different in that the opening comes from the colon, not the ileum. You can do virtually anything with an ileostomy that you could do before, swim, work, dance, play sports, travel, have kids. And supposedly the ostomy is virtually unnoticeable, even when wearing fitted clothing, we will have to see about that though.

When people find out that I am going to have an ileostomy they view it as the worst thing that could ever happen to someone, they rush around trying to find last minute cures, which I appreciate because I know they love me. However, an ileostomy is for sure not the worst thing in the world, living the way I have been living this past year has got to be worse, and that's what people don't understand. They only see the happy Sarah with no cares in the world, they don't see the Sarah that is going to the bathroom 30 times a day, who has no energy, can't eat because of the pain, and can't take care of her family because she is so sick. Although an ileostomy seems extreme, and I have no doubt that it will be an adjustment and hard times lay ahead, I also know that I will regain control of my life which is all I really want.

Thursday, January 17, 2008

A Different Breed

I don't mean this in a negative way but surgeons are for sure a different breed. I think cutting all the time does something to them, they just can't get enough. I met with my surgeon on monday and he is absolutely fantastic, I am confident in his abilities and enjoy him as a person, but he is soooo cut happy! I think he could convince a normal healthy person to have their colon out if he set his mind to it. So that is my next tip, if you talk to a surgeon before having made the decision to have surgery, realize that they are coming from a surgeons point of view. They see you have a problem, they know how to remedy the problem, end of story. Don't base your decision solely on what your surgeon has to say, although they do have a lot of good insites and knowedge to share. Todd and I actually met our surgeon a few weeks after I got out of the hospital, we went to an Inflammatory Bowel Disease support group...and were the only ones that showed up! We were feeling very supported. Anyway, this surgeon was the one directing the group that night so we got one-on-one questions and answers with him, all for free! It was great because we were able to learn about the different surgeries (I had been really confused up until that point) and the pros and cons, all with open minds since surgery wasn't yet in the gameplan. Its just great how the Lord prepares and takes care of us, although he gives us hard trials he really makes it as easy on us as possible.

Wednesday, January 16, 2008

My Personal Experience

I was diagnosed with Ulcerative Colitis in February of 2007. I had been having symptoms since September of 2006 but was extremely embarrassed to tell anyone so just lived with it hoping it would go away. After my diagnosis I was put on prednisone and Asacol, the prednisone made me VERY moody. I felt like every time my husband and I went to see my doctor we were going to marriage counseling, they were so good about reminding us that my bad mood was due to the medicine and life would get better. Finally I got off the prednisone and was given the great opportunity to start methsalamine enemas, which really weren't as bad as what I expected them to be. The enemas worked great at first, and then they slowly started losing effect. That is basically the story of my disease, all the medications worked great in the beginning but then lost effect. So I went on to steroid enemas, Azathioprene (it gave me extreme stomach pain so I had to quit), back on prednisone and then had a nice 5 day hospital visit. After I got out of the hospital I decided to start Remicade. Like everything else it worked great in the beginning, but by the 3rd infusion it was no longer having an effect on my body. By this point I was very frustrated and tired of being sick and tired. My husband and I had been waiting this whole time to expand our family, it had now been almost a year and I wasn't one step closer to being in remission than I had been in February. So I decided to try some different herbal supplements and diets, although some of the herbal supplements worked a little bit, none of them made that big of a difference, no matter how many testimonials I read. As far as diet goes, I couldn't seem to find anything that helped or hurt my UC. The week before Christmas I found myself meeting with a doctor at the Mayo Clinic and being told that if I wanted to ever hope for more kids, the colon needed to come out. That brings me to January of 2008 and facing surgery next week. I felt good about the decision when we made it, but afterwords I fell into depression and worry, I just wanted to be healthy! I have finally worked through those feelings and am now ready to get on with it. I guess that would be my advise for those of you who are thinking about having an ileostomy, schedule the surgery a couple of weeks out so that you have plenty of time to be emotionally prepared for it. I was frustrated when I couldn't get into the surgeon before the middle of January, but I now realize that it was a blessing to have so much time to think and know that this is what I want to do no matter what. I will be having a total colectomy with ileostomy, and although I don't think anyone is totally ready to live with the challenges that an ileostomy (or any health concern for that matter) brings, I feel ready, and that's good enough for me.

Monday, January 14, 2008


Welcome to my Osto-memoirs! This blog will be solely focused on my ostomy and has been created to give information and support to those who either have an ostomy of their own or are considering having an ostomy. I am very new at this whole thing (I am not having my surgery for another week) so I don't count myself any sort of expert, but I hope that as I learn and have experiences it might help one of you out there. So stay tuned!