thanks for starting part 20.
it's good to hear you're not vomiting. i'm sorry ppl tell you you don't look good. as a matter of fact, everyone around me also keep telling me i look like a ghost. it has been like that for the past 8 months or so. my hair also seem to tear easily. i'm not sure why, cause my blood tests are fine...
in israel there's no way the botox can be covered and we have to pay for it full price. it costs 1500 shekel (for 1 shot), if that means anything to you.
i'm glad you have a big family and friends. it is very important. i know, they don't always uderstand our problem, it's nothing like any other disease, it's a functional problem, and it's hard to understand b/c there are lots of ppl with constipation, but what ppl don't understand is that this is not like a regular constipation, it's much more than that - it's a handicapped colon, actually, so there's a huge sifference between the two.
also, i've been told it's quite rare. my sister's husband, who is a doc (in san diago) says it's maybe one in a million!!!
well, i hate being that kind of one in a million ...
he has two colorectal surgoens friends and they say that in all their career, they have performed thousands of surgeries for colon cancer, crohn, colitis etc. and each of them has only 3 pts. with CI. imagine how rare our condition is...
my thoughts are with you, dear.
hope you all feeling good.
Hey there....was kind of a rough end to the weekend . I threw up twice yesterday and I am at work right now and just had a little lunch and feel sick. They did think at first when all of thes started happening that it was a narrowing at the anastamosis, but I had a scope and everything looked ok down at the connection. That was when he recommended biofeedback therapy. I still have not heard from his office, but I think I will check in today. Hope this week finds you all well so far.
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
you're so kind. thank you so much. it's so nice to wake up in the morning (it's morning in israel) and see that someone is thinking of you and praying for you. what a way to start the day, it just really warms my hart so much.
G-D bless you.
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?
Thank you for your warm words of encouragement. I am so happy you are doing well and have your life back. It is good to know you are on so manys prayers. I really love the bond on this forum. I do not know what I would do without it.
Hodaya- I too have been doing research all week. All of the syudies I have looked at show about a 40-50% success rate with the botox. My biggest fear is incontinence even though its temporary. My second fear is though all of this so far I have fallen short on the percentages. For complications I am the 10% who gets one and for outcomes I have been in the 50% who succeed in a treatment. I am really trying my hardest to be optimistic. I called my surgeon office on MOn and they were still working on a prior auth for insurance. I have been doing the same. I thre up last night.....i really feel ok if I do not eat and that has been what I have been doing a lot of. My weight is somehow staying stable so thats good, although I know this is not healthy.
I am sad that for the 8th year i do not get to enjoy the wonderful foods of the holidays. I would give anything to have a dinner with my family, husband, and friends and feel good afterwards. That is my Christmas wish....to regain my health I so dearly miss.
LOve you guys. God Bless You All.
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@example.com. I wish you the very best.
has anyone heard from Amanda? i'm kind of worried. i hope she's ok.
I have not been on line in a while,but me and Takera are in the hospital(she has a central line infecton),and I am finally getting caught up on reading all the posts...I,m so sorry to hear you are having so much trouble...you were/are such an encouragement for me w/ everything me and my daughter Takera...not sure if you remember her story,but basicallt the same as yours. We tried the botox as well before going to the perm. illeostomy...botox did nothing for her...We are so glad that we made the decision to finally go to the illeo...it has given her a freedom that she has never known...we have never seen so much poop in her whole life!!! Yes are we still dealing w/ a few bumps in the road,but her body has gone through so much,that this is nothing compared to everything else...we have a light at the end of the tunnel now. We know that the cental line etc will come to an end,and after that her life will be totally normal...no meds, no sickness. She loves her bag...shows it to everyone!!She asked me and the drs why we waited so long to go ahead w/ it? I know it is a BIG decision...but if I can encourage you like you have me,we don't regrett it at all!!! Life is the best it has ever been for her!!! You will be in our prayers. I do think a second opinion is worth the trip...we got 3 before we made the final decision...GOD will give you a peace about your decision...He did for us...we just knew that going to the bag was the right thing...We belive that GOD uses many people/knowledge to bring healing forth...don't let the devil lie to you about this...where there is no peace or where there is confusion GOD is not there...Hang in there!!
Krista & Takera
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.
Post Edited (2b ColonFree) : 12/7/2008 1:08:37 PM (GMT-7)
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.
o.k.... my computer is sooooooo slow.... takes me forever to open one window. i'm gonna have to take it to my computer guy soon.
karen, thank goodness, a sign life. well, it's not excatly when i laugh or sneeze, it's just happens without me doing anything strenuous, BUT, again, it only happen when i don't make the effort to empty my self in the morning, so my hope is when i'm not constipated anymore, i won't leak anymore. anyway the leak is not much, just very very little drops, not too bad. i'll see on wednesday what the urogynecologist say.
and yes, i mean 2 RIS K. well i know she has her reversal on 15 Dec., but she hasn't posted in a while, so i just hope she's o.k.
karen, your surgery date is getting closer and i'm so thrilled for you. i wish you the best outcome possible, and you're right, we just don't have much choice - it's either laxatives that mess us up all day and evevtually will stop work, or have the surgery, which is the only thing possible that can give us achance to be normal again (as you can see, i'm trying to talk to my own common sense as well). hopefully, you'll be one of those without complications.
please keep us posted.
i wish you the best!!!!
(if you're still shaking, let me know, cause i'm shaking all over, so we can do the shaking dance together....... )
hope everyone else is o.k.
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.
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.
well, my story with the zits test is that i had 5 zits marker tests till now. no. 6 is on the way, but 3 out of the 5 were not accomplished, in 2 of them i just couldn't handle the bloating and pain and was unable to even stand straight. and it got to the point that it was actually sitting on my chest too and i really couldn't breath, so it was on day 4 that i couldn't continue. and one time, i just got a silly bug and on day 3 had really bad diarrhea (something that rarely EVER happen to me, and how interesting it had to happed just in the middle of my zits test), so it ruined the test.
the last test i did, after day 5 i was supposed to go on with the x rays, but didn't know that, cause i thought that after day 5 it's over. so i went home to clean myself out. if i do it again, and this time i do it right, it will help to know what is really going on in my bowels after 7 or even 10 days. so this one is going to be hardest of them all.
i hope i'll manage to do it and won't break too soon and ruin the test.
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