WRNING: Sorry for spelling up front, very hard to concentrate, so much pain.
It's been a long time since I have posted here; but always come here all the time. In fact, some of you, I feel like I personally know you, lol. It has been a long road for me. I had my 2 surgeries back in 2009 and had problems ever since. In 2010, I was forced to go on disability and was bed ridden ever since. After 3 hospitals, continuation going to the ER with no real help: I finally said I would go to the best and get an appointment with Dr. Shen @ the Cleveland Clinic. Thank goodness, I now have Medicare, lol.
After my appointment with Dr. Shen (what a great doctor); he stated that my jpouch was wrong from the beginning. He told me to take a picture, as he drew on the blackboard. Boy, what problems I had. All the small town doctors didn't even know what a jpouch was. They always asked for me to show them my "j-tube", "j-bag", etc. Always explaining to them, it is inside me. Anyway...as I babble on... Here is what Dr. Shen says was wrong:
1. Long cuff/rectum: Dr. Shibato @ Moffit Cancer Center in Tampa, kept too much of a rectum for a FAP patient
2. Leak sinus
3. Prolapse
4. Dilated pouch: Had to dilate 3x this year alone
5. Low grade dysplasia
Also, had C diff.
He said that the only way was to remove my jpouch and choose between going for perm end loop; new jpouch, or kpouch. Originally, I was interested in Kpouch because I was tired of jpouch and the misery, but Dr. Dietz recommended new jpouch and said that Kpouch has a 20% failure rate. He was really determined for me to try jpouch again. Dr. Shen wanted to do 3-part surgery, while Dr. Dietz thinks he can do it in 2-part.
Now just trying to survive until next week. Had to go to local ER 2 weeks ago, and they basically threw me out within a few hours. That is another story by itself. CC told me I should have gone there for ER, which is 12 hours away. I have been in so much pain, the worse ever. My stomach is always makes this extremely loud sound like a lion growling. Every time it does it, my abdominal hurts so bad that even starts giving me back pain. When I went to the ER, I had been up for 3 days straight because of the pain, and took me 7 days before I could have a bowl movement.
Anyway to make a long story short (ironic, lol) I am off to CC on 7/9 (day after my birthday). I am hoping that this is my birthday present, and after 4 years, that I will have a successful 1st surgery on 7/12. Hopefully, I will be able to work again and want be stuck on a bed for the rest of my life. Any one ever had a successful civil lawsuit on a situation like this? This has caused so much problems for many of my family members. We have had so much financial issues that it has caused to family members bankruptcy. I'm sure many could relate.
Kinda scared about doing surgery again, but figured this might be a piece of cake from so much pain I have gone through. I have read many of your stories and especially followed Vanessa's story and blog. I hope I meet some of you when I am there again. I will be staying at the Guest House.
Any advice will be helpful. I am having a jpouch removed and temp ileo for first surgery. How is traveling after surgery? One thing that I do love is how I fell in love with Ohio. Amish country; German restauants. Cleveland has such a melting pot of food. Love the Korean and Asian markets there. The restaruants at the Intercontal Hotel is awesome too. Risotto on their buffet, yum.
It's been a long time since I have posted here; but always come here all the time. In fact, some of you, I feel like I personally know you, lol. It has been a long road for me. I had my 2 surgeries back in 2009 and had problems ever since. In 2010, I was forced to go on disability and was bed ridden ever since. After 3 hospitals, continuation going to the ER with no real help: I finally said I would go to the best and get an appointment with Dr. Shen @ the Cleveland Clinic. Thank goodness, I now have Medicare, lol.
After my appointment with Dr. Shen (what a great doctor); he stated that my jpouch was wrong from the beginning. He told me to take a picture, as he drew on the blackboard. Boy, what problems I had. All the small town doctors didn't even know what a jpouch was. They always asked for me to show them my "j-tube", "j-bag", etc. Always explaining to them, it is inside me. Anyway...as I babble on... Here is what Dr. Shen says was wrong:
1. Long cuff/rectum: Dr. Shibato @ Moffit Cancer Center in Tampa, kept too much of a rectum for a FAP patient
2. Leak sinus
3. Prolapse
4. Dilated pouch: Had to dilate 3x this year alone
5. Low grade dysplasia
Also, had C diff.
He said that the only way was to remove my jpouch and choose between going for perm end loop; new jpouch, or kpouch. Originally, I was interested in Kpouch because I was tired of jpouch and the misery, but Dr. Dietz recommended new jpouch and said that Kpouch has a 20% failure rate. He was really determined for me to try jpouch again. Dr. Shen wanted to do 3-part surgery, while Dr. Dietz thinks he can do it in 2-part.
Now just trying to survive until next week. Had to go to local ER 2 weeks ago, and they basically threw me out within a few hours. That is another story by itself. CC told me I should have gone there for ER, which is 12 hours away. I have been in so much pain, the worse ever. My stomach is always makes this extremely loud sound like a lion growling. Every time it does it, my abdominal hurts so bad that even starts giving me back pain. When I went to the ER, I had been up for 3 days straight because of the pain, and took me 7 days before I could have a bowl movement.
Anyway to make a long story short (ironic, lol) I am off to CC on 7/9 (day after my birthday). I am hoping that this is my birthday present, and after 4 years, that I will have a successful 1st surgery on 7/12. Hopefully, I will be able to work again and want be stuck on a bed for the rest of my life. Any one ever had a successful civil lawsuit on a situation like this? This has caused so much problems for many of my family members. We have had so much financial issues that it has caused to family members bankruptcy. I'm sure many could relate.
Kinda scared about doing surgery again, but figured this might be a piece of cake from so much pain I have gone through. I have read many of your stories and especially followed Vanessa's story and blog. I hope I meet some of you when I am there again. I will be staying at the Guest House.
Any advice will be helpful. I am having a jpouch removed and temp ileo for first surgery. How is traveling after surgery? One thing that I do love is how I fell in love with Ohio. Amish country; German restauants. Cleveland has such a melting pot of food. Love the Korean and Asian markets there. The restaruants at the Intercontal Hotel is awesome too. Risotto on their buffet, yum.
