TOTAL COLECTOMY PART 20

Thanks for all of you care and concern. I have not been vomiting in the last two days. Still nauseated and not having very many BM's even with laxative, but getting by. I had a rough day at work...I had three pts, a NP, and co-workers tell me how awful I look. It doesnt make you feel any better :( I will have to search the botox the way you did, thanks for everything you have been doing. You are truly too kind. I look forward to seeing what your surgeon says. I still have not heard back from mines office on the coverage.

Oh and I am not alone. I have the most amazingly supportive husbans, a huge Italian family, 5 siblings, the best friends, but what I meant is it is hard when they have never gone through what you are experiencing. It helps that you all know what it feels like. I hope today finds you well.

To everyone else. I have my prayers flowing for you all. Hope you all have a wonderful Thanksgiving next week. Blessings to all of you and your families.

Lizzie

Hi Lizzie, Hodaya, Amanda, Irish & Janie,

Please know that all of you are in my prayers each and every night... Lizzie, Amanda and Irish I pray that you will soon be free of pain,that you will heal quickly and that your surgery will then allow you to have a new healthy life like you have never experienced before...Hodaya & Janie I pray for you to have a peace of mind that this surgery is the best thing for you and your body and that you will heal quickly so that you may enjoy life the way that you should...pain and worry free...Yes, I am one of the very success stories...yes, I went through h--- for years before this surgery...but my life is like I never thought it could be...I've had so many people now come up to me & tell me they actually thought I had cancer because I looked that bad these past few years...so I do know how you girls & guys out there too feel, but I want you to know that there is light at the end of the tunnel...keep your chin up...in time you will feel better...there are many of us praying for you

Judy

hi Lizzie

my surgoen has just answered me. he says that he did mentioned there is surgery for anismus, but it's very rare they do this surgery. he says the procedure is called "lateral release". i tried to google this name, but found it invovled only with something with the knee.....   i don't understand.

anyway, i've done some reading myself and unfortunately found that the surgery for anismus is highly not recommended, since there is a high risk of incontinance and drs. don't do it anymore.

BUT the botox is commonly used for the treatment of anismus and there are successes with it. they say that incontinance may, but not always occur, and even if it does, it can only be temporary.

i really hope you find relief.

so how is everyone doing?

Hi ih8u,

I live on the East coast.  I had all of my testing done in Rochester, NY.  I know it's quite a ways from where you are but no doctor in my hometown did these tests either; I live by Syracuse, NY.  I had to travel 3 hours one way every day for 3 weeks except on Sunday's while I was having these tests done but it was well worth it; I would do it all over again to feel this good, my life has changed forever.  If you would like some more information, you can email me @ [email protected].  I wish you the very best.

Its all just very frustrating. I can eat a cup of soup with a few crackers, but anymore and I get sick. I have still been taking my laxatives and nothing substantial except liquid comes out. I have lost a few pounds, but thats ok.

Hope you all have a wonderful week. I think of you all often.

Amanda-----GOOD LUCK today!!!!!!!

lizzie

has anyone heard from Amanda? i'm kind of worried. i hope she's ok.

Krista and Takera....

Yes, I definately remember your story and everything you all have gone through. I remember following your story very closely. It has been pretty rough these last couple weeks....I have been trying to remain optimistic, but its frustrating at times as you both know so well. Believe me...I have definately thought about about the perm ileostomy, esp over these past few weeks. I have hardly been able to eat much this last week and all that comes out of me with the laxatives is liquid and no stool. I had a gyno appt today and she said " I looked sick...." and when she did her manual exam she could feel stool and it was very painful to me. It was funny becuase I had not had anything to eat and had taken my laxatives the night before. Its just never ending. I am so happy that Takera is feeling so much better...she deserves this life of freedom and health. Bummer that she has a line infection, but it is true that this portion of her journey will end and there is a light at the end of the tunnel. I am an oncology nurse so I have dealth with many kids with line infections....vancomycin/fortaz were our abx of choice normally. No matter how well you care for one of those lines they are so easily infected. They are so foreign to the body. I wish her a speedy recovery. I am glad you caught the infection before it made her too sick. Thank You for all of your kind words. It makes me feel so warm inside knowing that there is someone in the world that understands just a little how I feel each day. Its so hard to explain to others or even my husband just how crappy I feel. Again, Thank You.

As for now I am waiting for my insurance to cover the botox...we are appealing the denial. Hopefully I will here this week. I want to try it at least...unfortunately...most of the quick fixes dont work for me as was the same for Takera. I will keep you all updated. Until then, have a wonderful rest of the week and give your baby girl a hug for me. God Bless.

Lizzie

it might be your pelvic floor is rather loose.  do you leak wee if you laugh or sneeze?  if so then you have weakness there which can be repaired. 

do you mean amanda who is 2 ris k?  she is having a reversal on 15 dec if i remember so i think she is doing alright with her bag at the mo. 

i just can wait until 15 jan to have this dreaded colon removed - i just hope i dont get any complications e.g. ileus and the continuation of pain,  bloating and stuff that others on here have had.  either way i dont have a choice - laxatives realy arent doing much for me these days.

Hi all...

Just checking in to say hello. I have been doing about the same. As long as I have little intake (about 600-700 cal) a day I seem to be ok with the vomiting. I did throw up last night after trying to eat a small salad. Otherwise still taking over a bottle of laxatives a week and having just liquid ouput and no relief in that way.

I had my repeat u/s for my cysts. They are still there, but I am not really having much pain from them. She did a manual exam and it was very painful....she said she could feel stool? this is all just so frustrating. I spoke with my surgeon offoce today. My surgeon wrote a very nice appeal letter to my insurance company and I should know later this week if they have changed their mind. Otherwise I will go ahead and pay out of pocket. She said it will be at least 800 dollars....perfecting timing being Christmas and all.

I did find out that when I was a baby I had to have my rectum stretched twice when I was a baby. Interesting?

Amanda- your reversal is right around the corner for you!!!! yeah.

Hodaya- I miss talking with you. It really sounds like your pelvic floor with the leaking? Hope you are ok.

KAren- Thinking of you as this big surgery approaches.

Love you all.

Lizzie

HI Hodaya and Lizzie thanks for the supporrt.

Yes i have had the transit test three times - each time i went on to another hospital so three different hospitals.  they have all been different. 

the first in 2006 showed what was described as 'fecal loading' on the ascending colon - i was very surprised as that was when i was told i had slow transit constipation, but my main symptom was obstruction.  it was alll probably relative to each other i suppose.I was told then that i needed to start taking anything that would move my bowels twice a day and a very strong laxative once a month.  i was then told the only thing for it was a subtotal colectomy but that i was probably too young (!??). 

The second transit was in early 2007 where no markers were found (i was taking lax though - they never told me not to stop taking them  - der), but a partial volvulus was found which were two twists low down near the rectum and that part of the bowel was stuck down between the rectum and vagina - a place which is called 'Pouch of Douglas'.  that was interesting to know - i did a search on the web to see what that was.  at last i thought, they have FOUND something and the surgeon said it would take that bit out (about 10 inches i think).  and sure enough i actually FELT no obstruction after survery.  but unfortunately the bowel completely stopped working and they had to give me picolax (v strong lax) after a week to get it all moving.

Then in late 2007 at another hospital i had a transit study.  that showed 78% of markers all spread throughout the colon all the way down to rectum.  so a general motility problem of the whole colon what a difference to the first! 

it was a struggle that time as it is so so uncomfortable if you cant even open the bowel a little bit - i could never do it again i think i would die of pain and bloating (an exaggeration i know, but it brings me to dispair). 

i can't understand why they need to do so many for you but mine only changed after surgery.

Hi,

I am new here. I have been reading the posts and now I think my anxiety level is higher!! My story is that 5 years ago i went in to a gastroenterologist because my mother made me go after she was diagnosed with colon cancer (she is super now by the way)!!

He told me I had colonic inertia and did a scope and found nothing abnormal.  Put me on Miralax 17 gms daily.  His goal for me was 2 bowel movements daily.  Well, I never quite reached that goal but got to at least 3 movements a week.  I felt great.  Healthy.life was good.  I had a heart attack 2 years ago, so  the cardiologist bumped up the fiber in my diet...did metamucil, and all the right veggies...exercise...like a good girl..i thought i was doing all the right things.

about 6 months ago i began to have the problems with constipation again,  would take an "occasional" lax to help..felt great after the relief would come, but it gradually got worse.  I began to slow down to the point of only going every 5-7 days and not really feeling like i had emptied well.  I then tried glycerin suppositories to stimulate the bowels to move.  Most of the time it would work but no matter how much fiber i ate or fluid i drank..i still would not go more often than 2 times a week.  Now, once a week if i am lucky.I have the gnawing, aching pain and discomfort in my back on the left side almost constantly now.  I went in to the gastro and he told me what is happening is that my colon is slowing down even more and trying to stop working and that i needed to "retrain" it.  So, he put me on the Miralax 1 1/2 dose at bedtime. That was on friday.  I have taken it faithfully.....eaten prunes (he told me to throw away the metamucil because it is making things worse).but anyway....still no BM......I am miserable!!! I am scared!! I am worried!!! I am not going to alter his treatment so i won't mess things up....but i am gonna have to do something soon to get relief.  Is it always this way with colonic inertia?? No one in my family has ever had this problem.  I don't know anyone to talk to about it or what to expect from it.....but i am FULL OF IT IN OKLAHOMA!!!Tabitha