TOTAL COLECTOMY - PART 21

Hodaya just saw your post here - yes your network says you are in San Juan puerto rico!  I think it may have defaulted to that - dont worry it took me a while to get around using facebook properly thats why my pics are all over the place still!

I was referred to my present surgeon for sacral nerve stimulation as they pioneered it at that hospital apparently.  but the professor said i wasnt a candidate for it because i had slow transit constipation.  so no it wont cure your CI unfortunatelly, but may well help other issues so good luck with that Lizzie.

Hi Everyone,

Just got back from vacation in Vegas . Didn't win anything but didn't really play .  Went to some beautiful places though-Grand Canyon, Hoover Dam,etc.  Anyway, am trying to catch up on everyone in between doing laundry, cleaning and getting ready to go back to work tomorrow...I was reading about the new procedure with the electrodes that Lizzie's dr told her about...this is soooooo wierd, but when I went to see my urologist for my kidney stones before my surgery he was talking to me about the implant for urinary incontinence and said it's too bad they don't come up with some kind of implant for the bowel that would do the same thing...then he was joking and said lets you and I develop one and then you will be cured and we will both be famous...we both laughed and I said it would be great...you see my dr has a great sense of humor and we always talk about anything and everything when I'm there...little did I know that he was actually on too something...although I'm sure it was well into the makings when we discussed it .

Hodaya-I hope you get some news from your drs soon.  BTW, the thing my dr wrote about my manometry was that it was moderately retarded.

Lizzie-I'm very excited for you!  I hope dr Chey can help you, but if he can't, there is still hope .  That's why we NEVER give up . I had an appt. last week w/ dr Chey sr. I didn't get to see him cuz he had to go to the hosp. for someone, but his office is unbelievable...the receptionist asked how my trip was & where my husband was cuz he stayed in the car to nap...the nurse asked all about how things were going and also how the drive was and the PA gave me a big hug when she came in and told me dr Chey was really disappointed that he couldn't see me but he was going to be so pleased with my progress...I surely hope some of their niceness has worn off on his son and you get the same treament when you go see him.

Amanda-Hope you are continuing to do well.  The friend that we went to Vegas with keeps wanting me to get a facebook page so I just might finally breakdown and do it...it will be fun to see all of you .

Janie, Karen and Linda-Not too much longer for all of you!  I know it may seem like forever right now but it will get better.  My life has NEVER been SOOOOOOO GOOD!!!!!!!!  I wish you all the very best and will keep you in my prayers.

Blessings, peace and prayers to all,

Judy

Judy... moderately retarded???? what does that mean???? did he mean to say like inertia of the rectum??
i'm so glad you're doing so well and are able to travel and have fun, that's just great, good for you!!!

Janie.... your gi doesn't know yet? i wonder how he reacts when you tell him... anyway your surgery is getting closer and along with it a whole new better life for you, my dear!!!

love you everybody.

Hi Everyone~

Hope today finds you all doing well.....I had a pretty rough weekend, well maily just yesterday. I tried to eat a normal meal and ended up vomiting 3 times (of course I forgot to fill my anti-nausea med) and then I have been having such severe and intense back pain. I was up till 330 am with the pain just curled on a heating pad. I feel like someone is bashing my right kidney...its takes my breath away. I do not know what to do. Five weeks seems so far away.

Judy- Glad you had such a wonderful time in Vegas! I have never been, but it is one thing I want to do. I am happy your appt with Dr. Chey (well his office) went so well. It seems he has given you great care. I hope that they can figure something out for me while there.I hope his fathers knowledge has rubbed off on him :)

Janie- So happt for you and your decision. I hope your GI doctor can understand just why you need to get this sick colon out of your body. From personal experience with complication I have always called my surgeon. I have not seen or talked with my GI since he sent me to my surgeon. For me, though, they work within the same building. I was always sent to the ER of the hospital I had my surgery at (this was so I could be admitted under my surgeon). I hope that you will not have anycomplication or need for that information, but its a good question.

Hodaya~ So glad your new little coctail worked for you and you were able to get some relief this weekend. I know it seems like forever away!!!! that you will get some answers and I am waiting right here with you.

How are you feeling Karen? I hope that you were able to have a good weekend!!!!

Love you guys....

Lizzie

KAren...thanks for the link. For a long time they thought I was suffering with the gastroparesis and I was on reglan before meals, but all the med did was make me dizzy and spacey. I just had my second gastric emptying test when I had my second defecography and my transit from mouth to rectum is normal. I did the radioactive egg test and a small bowel follow though. My surgeon thought maybe I had telescoping or inerita in my small bowel, but for now thank God that all is working well there. I believe I get the nausea from being so backed up....Im like aplugged sink and with all that waste just sitting in there I get nauseated really easy. I cannot tolerate the amt of food that I need for nutrition, but I obviously try and thats when I get sick. I have had three pts today already tell me I do not look well and that my eyes look sick!!! Makes me feel bad....they are sick and I do not want them to worry about me :(

Thanks again for the link......I am not sure about the back pain, but its getting worse and worse and its after I eat?

Lizzie

Lizzie, you poor thing.. i can't imagine what it's like to go through what you're going through day and night. hang in there, sweety, your appt to dr chey will come, just a little bit more. i can't wait to hear what he has to say.

Karen, i found mali (that's her name), but i don't know, in her profile picture she doesn't look like her self at all. i send her a request to confirm me as a friend just a few minutes ago, so she should answer soon. when i see her tomorrow at work, i'll ask her to just send some of her pics to my wall and then i'll be able to show her to you.

BTW, seams like we do have that sacral treatment in israel, but it rarely covered. i'll have to ask my drs about it.

Hey ladies - I'm on Facebook now! You can find me by searching "Amanda Gorman Dickson" I'm still working on it and I have to put more pictures on it but at least I'm there. Please come find me!! I'm dying to see all of you - my dear friends!!

Hodaya - how have you been feeling? You haven't said much about yourself lately.

Judy - I'm disappointed that you can't eat lettuce or raw vegetables still. I go see my doctor next week and I was hoping she would say I could eat some but now I highly doubt she will, it's only been a couple of months since my last surgery. I asked her four weeks ago and she said no.

Lizzie - I'm so sorry you feel so bad. I know exactly how you feel, that's how I felt right before my surgery. You are hungry and want to eat but then when you do you vomit because you are so nauseous and full. It's so miserable. I feel so bad for you because I know there is really nothing you can do. Please just try to hang in there until your appointment and know that I'm thinking about you and I understand how you feel. You will get the treatment you need I just know it, keep focusing on that. It's the only thing that's going to get you through this, and it works! {{{HUGS}}}

Karen - How are you feeling this week, any better than last? I've been thinking of you too!

I'm doing ok as far as these issues go, I know some of you read my other post about my depression. But I accidentally took 2 tablespoons of my benefiber instead of 2 teaspoons a couple of days ago and my stomach has been very upset. Last night was the worst. I had so much gas and diahrrea that I couldn't sleep and now I have massive butt burn. Today the diahrrea isn't as bad as last night but the butt burn is still there, I've been putting cream on it though so it'll be ok.

I've been craving peanut butter so yesterday and today I've had a peanut butter sandwich for lunch, I hope that doesn't do anything to me! :)

Amanda yes i am a bit better this week - i am trying to eat smaller portions and blandish food to help. I feel awful if i cant go to the loo much and from time to time it gets really bad that i have to take picolax (UK bowel clear-out powder) but even that isnt always efficient and leaves me swollen but at least it takes the pain away sometimes. glad u are on the mend - hope you sort out your depression soon xx

Amanda..... you're too FUNNY!!!! yeah, i know, but that's o.k, we can get together in both places, right?

Someone else told me the same thing. I wonder what happened!! Let me see if I can figure it out. Let me know if you get me back,k?

Hodaya- I am so confused whether you are in those picures or not? Haha....I feel so retarded...are you?

Amanda- I am still having trouble with your site. I tried to weite something on it, but it wont let me. Also, It says on your that you wrote on mine, but that did not show up either?

Hmmmmm......maybe its me. i am computer stupid. I have to update my picstures. They are mailnly from the summer....but it takes me too long to figure out how!!! :)

lizzie

Hi girls

yes i think it is good to do both - here and facebook - obviously and hopefully, we will not be on this forum in the future so it is a good way to keep in touch when that happens.

in the meantime it is good to talk here as it does help others to hear our experiences also. x

Amanda, do you think it might be scar tissue?