John, that's so exciting!! Gives me more hope every day :) Thanks so much for sharing and I hope your recovery continues to go so beautifully.
I hope I can continue giving anyone facing surgery hope. I have to say though, I do have some problems on occasions it is just that I see the destination worth the journey. I know that when all of the surgeries are done and my body has had time to heal that I will finally be complete rid of this horrible disease. Right now I have some pains in my lower abdomen, manageable but there. I also have the urge to use the restroom the old fashioned way and recently did pass some of the remnants of the suppositories I am using plus some mucous and then had some bleeding on top of that. To top it all off I have bouts of being tired. When I talked to my surgeon last week she said that it very well could be the UC flaring in what little tail she left of my colon. She did this because if I decide to go through with the j-pouch she wants to be able to cut lower where she makes the connection with the pouch and have "fresh", unscarred tissue to work with. I am also in the works of tapering off of the steroids, down to 15 mgs and will go to 10 mgs Saturday. This is the lowest I have been without serious side effects for the first time since being diagnosed five years ago. The last time I got off of the steroids I took two weeks off of work because the side effects were so bad. I have to see an endocrinologist in a week to see if my adrenal glands are waking up, if not we may have to stay on some dose of prednisone for a while.
Getting used to "Leo" the ileostomy (I know iLEO
stomy is not all that creative for naming my stoma but hey I should get an A for effort
) has been a challenge I guess you could say. Even though there are no nerves in the small intestine there are plenty in the stomach muscles so I am able to feel the movements coming through most of the time. It also takes time to get use to the weight and counter of the bag hanging off of your stomach. I have also noticed that I am maybe overprotective of bending at my waist. I am not sure if I am still tender there and am inadvertently protecting it by limiting my bending or if the muscles are just harder to use because of the surgery. All in all though with what I have been through back with the UC all of this is a walk in the park.
I seem to be in a minority when it comes to recovery. I feel slightly guilty when I hear the hard time others are having as opposed to how easy I seem to have it. Three days post-op I was headed home. I am not kidding I got out of recovery around 6 p.m. on Tuesday and was checking out of the hospital at 3 p.m. on Friday. My bowel woke up Wednesday morning so less then 24 hours post-op actually around 12 hours (maybe less, woke up with tar colored stool in the bag Wednesday). I had no problem progressing through the stages of food (clear liquid, full liquid, semi solid to solid) with no problems such as nausea or sickness. Tapered off of the pain meds quickly and was able to change and empty the bag with confidence thanks in part to everyone on this site talking about it prior to my surgery and the other part was the research I did prior.
I am sorry this turned into a poorly written novel but I hope you can see that it is not all roses but I feel it is worth it to distance myself from this disease. A year ago I would have said there was no way you would do a colectomy on me and now when faced with the decision of j-pouch or permanent ileostomy I am leaning toward keeping "Leo" because he is so easy to take care of and for the first time in fifteen years I decide when to go to the bathroom. If there are any questions you have ask away and I will do my best to answer them.
Flchurchlady, I really enjoy mowing my lawn too. I don't go as far a humming theme songs but to be outside is awesome, something I rarely did the last six months. Being able to eat virtually anything without worrying if it will cause a problem is real nice too.
Summerstorm, I noticed that many people call it "giving in to UC" or "the last resort" with surgery and now that I have had it I say it is nothing of the sort. For my situation it was the "only" treatment. Unfortunately people have a misconception that your life is over with an ostomy but it is actually opposite for me. I can't tell you how many times I have heard "but you are too young to have an ostomy" (I am 38). Finally I have started getting snippy with people and respond with "so I am too young to have my life back?" They don't know what to think but it seems that the ileostomy is a heck of a lot less restrictive then the UC. I did come across this list of "myths"
today thanks to another board I am on so check it out if you like.
Total Colectomy with End Ileostomy May 27th, 2008