Tuesday, September 27, 2011
So since Friday morning I’ve been able to think of nothing else. I’m trying to remain positive, but having that camera up my butt again and seeing an ulcer again has really played mind games with me. It’s brought back that whole flood of emotions that I felt when I was sick with UC and while I was going through my surgeries. The thing I’ve realized is that those emotions and these experiences will never go away. Even if the results come back and it’s not Crohn’s , this is something I’m going to have to go through every year when I have that exam. The nerves beforehand and the praying to God that nothing shows up during the exam. So it makes me think. For those of us who have had J-pouch surgery as a “cure” for UC, is it really a cure? Possibly it is a cure for the actual physical ulcerative colitis (although not always for those who find out after that they really had Crohn’s all along, or the small percentage who have complications after the surgeries). But emotionally, having these surgeries is definitely not a complete cure. It is something that will always be with us. Those emotions, those memories, that fear. I’m not saying I wouldn’t have had the surgeries. Not that I had a choice, but if I had, I still would choose to have them and I would still recommend them to anyone. They saved my life and gave me a better quality of life. For that I’m definitely grateful. I guess I’ve just realized that for most people it doesn’t end once the surgeries are over. It’s a process. Which is why I think it is so important to take care of yourself both physically and psychologically, during the illness as well as after. I think it’s also the reason I’m so passionate about counseling people with IBD…because I GET IT. And you can’t get all the emotions and fears unless you’ve been through it. So for now, I’m going to do some of the things I tell my clients to do…try and remain positive, deal with my emotions, and since I’m feeling good, enjoy life…and pray that the ulcer is nothing.
Friday, September 16, 2011
Friday, September 2, 2011
I know the possibility of surgery is really scary for some people. It definitely was for me. I recently heard from another J-pouch buddy of mine that before she had surgery some people were actually trying to talk her out of it and were telling her that she was weak for having the surgeries. When I heard this I absolutely couldn’t believe it! I know for a lot of people who have the J-pouch surgeries, myself included, it is not an option. If I had not had these surgeries I would have died, plain and simple. Because there is so much misinformation out there and because of the negative ideas that some people have about these surgeries, I wanted to share some information about the J-pouch surgeries.
J-pouch surgery is an option for people with ulcerative colitis as well as for people with FAP. For people with ulcerative colitis, it is typically done when all other medical options have failed, which was the case for me. These surgeries can be done in one, two, or three different surgeries, usually depending on how sick the patient is. In my case, I had three surgeries because I was so sick and malnourished. The first surgery was simply to remove my colon. After my colon was removed, I had a temporary ileostomy, which is a small opening in the abdomen where a piece of small intestine sticks out in order to remove waste into a bag attached to the abdomen. Three months later was surgery number two in which the J-pouch was formed out of small intestine. The J-pouch’s job is to essentially act as a “new colon”. After this surgery, I still had the ileostomy. The third surgery is called the “takedown” and consists of removing the ileostomy and attaching that piece of intestine to the newly formed J-pouch. After this surgery the person will be able to go to the bathroom normally again.
After takedown surgery, the patient will most likely have to go to the bathroom several times per day until their body adjusts to the J-pouch. Some people say that it’s almost like having ulcerative colitis again at first. It does get better though! After the body adjusts, which can take up to one year but is usually much sooner, the average person uses the bathroom around six times per day.
What’s hard about these surgeries is that everyone is different. One person may have a lot of problems and go to the bathroom a lot each day, whereas another person may do great and only go to the bathroom three times every day. You just never know. I think maybe that’s what scares people so much about these surgeries.
In my opinion, J-pouch surgery is a fantastic option for people with ulcerative colitis. Yes, as with any surgery, there are risks and things that can go wrong (obstructions, pouchitis, cuffitis…) and there’s always a risk that the J-pouch will not work as it should. But these risks are rare and for most people, life with a J-pouch is a million times better than life with UC.
Life after J-pouch surgery…for most people, including myself, is great! There are things that are a little different, like going to the bathroom more often, but they are completely manageable and although there are more bathroom trips, unlike with UC you can hold it until you can find a bathroom. For me, there is nothing I can’t eat and nothing I can’t do.
I want people to know that J-pouch surgery is not the end of the world. If you have to have surgery you are not weak and you did not do anything wrong. It is possible to live a normal life and a good life after these surgeries. For more information you can visit my website at www.ccddsupportnetwork.com.