There are many times in life that I wish that it came with a Map on which to go. This time is no different than others and I wish that I had a map more now than ever. These last six weeks have been crazy busy and a lot has gone on, you can read about those in my other Update Post. I am still in the hospital, this is only day three but if you have ever been in the hospital it feels like forever. I hate when I don't look sick and start to feel better just have to stay in my room because I need to have Prednisone administered through IV so that I can feel better.
I have been in the hospital for a Ulcerative Colitis Flair. I was having 18 bowel movements a day with quite a bit of bleeding. I was trying to stay healthy so that I could take care of Censie after she had her surgery, but my body decided that it didn't want to allow that. This has been something that has been a concern for my family the entire time that I have been dealing with this illness. I finally got the call from my doctor that I needed to come into the hospital.
After I came in they did another colonoscopy, this is number 11 in three years. That is a lot but it could be worse but it is not something that I look forward to doing. I had a flexible sigmoidoscopy in September, this is a colonoscopy but not as invasive, and it showed that I was healing. During this check up it showed that I have moderate to severe Ulcerative Colitis throughout 2/3rds of my colon. This shows that the medicine that I was on was not working and that it was not keeping my body out of a flair, which it should be.
So why do I want a map? Censie, my family and I are going to be faced with a huge decision that is going to affect our family for the rest of our lives. We have the possibility of trying one more medication. This medication also comes with the possibility for a lot of negative side effects and my doctor has described it as a "Hail Mary" attempt at stopping my Ulcerative Colitis. The other option which would cure my Ulcerative Colitis would be surgery.
There are two different options for surgery to take care of Ulcerative Colitis. The first one would be a total colectomy which would remove my entire Colon and then they would give me a stoma with an ileostomy bag for the rest of my life. If we go with this option it is not reversible. This would be difficult as I would have to get use to having a bag for the rest of my life but would also cure all and I could move forward.
The second option would be to have them construct a J-Pouch which would be an internal pouch but would require two surgeries. They have stated that I am younger and that I don't want to have an ostomy bag for the rest of my life but it is something to consider. If I do the J-Pouch there is the possibility of developing Pouchitis and having to have that treated. There is also the possibility that it will fail and then they would have to do the ileostomy anyways. Also if they do the J-Pouch you still have to go to the restroom 4-8 times per day, I know that is an improvement but still it would be difficult to have to deal with.
I was going to post images but I figured that would be going to far. So as you can see there are a lot of things that we have to think about and then hopefully make the right choice. Please continue to keep my family in your thoughts and prayers as we make these decisions and I hope that the Map we decide to follow leads us to a great place!
UPDATE!
So I wrote this while I was in the hospital and was waiting trying to figure out what direction I was going to go with my health. I met with my doctor and she felt that the medicine that we had discussed was not going to be an option for me. She has recommended the surgery She has stated that the J-Pouch Surgery was not an option for myself. My body is just to severely infected, especially my rectum, yes I said rectum :) I also have had issues even when my colon is doing well so at this point I will be meeting with a surgeon to have a total colectomy and having a permanent Ileostomy with a bag for the rest of my life. I am nervous about this and know that this is just the beginning of this journey but I will keep everyone updated and share my thoughts as we travel on this road together. Thank
There are two different options for surgery to take care of Ulcerative Colitis. The first one would be a total colectomy which would remove my entire Colon and then they would give me a stoma with an ileostomy bag for the rest of my life. If we go with this option it is not reversible. This would be difficult as I would have to get use to having a bag for the rest of my life but would also cure all and I could move forward.
The second option would be to have them construct a J-Pouch which would be an internal pouch but would require two surgeries. They have stated that I am younger and that I don't want to have an ostomy bag for the rest of my life but it is something to consider. If I do the J-Pouch there is the possibility of developing Pouchitis and having to have that treated. There is also the possibility that it will fail and then they would have to do the ileostomy anyways. Also if they do the J-Pouch you still have to go to the restroom 4-8 times per day, I know that is an improvement but still it would be difficult to have to deal with.
I was going to post images but I figured that would be going to far. So as you can see there are a lot of things that we have to think about and then hopefully make the right choice. Please continue to keep my family in your thoughts and prayers as we make these decisions and I hope that the Map we decide to follow leads us to a great place!
UPDATE!
So I wrote this while I was in the hospital and was waiting trying to figure out what direction I was going to go with my health. I met with my doctor and she felt that the medicine that we had discussed was not going to be an option for me. She has recommended the surgery She has stated that the J-Pouch Surgery was not an option for myself. My body is just to severely infected, especially my rectum, yes I said rectum :) I also have had issues even when my colon is doing well so at this point I will be meeting with a surgeon to have a total colectomy and having a permanent Ileostomy with a bag for the rest of my life. I am nervous about this and know that this is just the beginning of this journey but I will keep everyone updated and share my thoughts as we travel on this road together. Thank
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