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TOTAL COLECTOMY - PART 21

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Posted 2/13/2009 11:19 AM (GMT 0)
Hey girls thanks for thinking of me

Oh Hodaya so sorry for you - let March roll on soon!! Knowing my luck it will get cancelled again and you will all have it ahead of me! mad

I have spoken to the booking and scheduling dept and they said it is only a provisional booking and they are within NHS guidelines of offering another place 28 days from date of cancellation. i have asked to be put on a last minute cancellations list if there are any but they said it is extremely unlikely.

i am not feeling great at all and i look at myself and feel so fat. i used to have a really flat stomach until colonic inertia took hold of me. and i have put on 10lbs . It dont help that i dont exercise or get out much due to working from home and not having much energy. well just plod on i suppose.
glad to have you all. x

Posted 2/13/2009 11:43 AM (GMT 0)
if they do it to you again, i say you should go to your surgeon's office and explain to HIM (only him and no one else) nicely, calmly BUT firmly how frustrated you are, and that things are getting worse and worse for you and that you can't go on like this and that what they're doing to you is totally unfair, i mean 3 times!!!!! tell him there's no way you can endure another cancellation!
i just feel so frustrated for you... i really hope and pray that this time is YOUR time to go in!!
Posted 2/13/2009 12:33 PM (GMT 0)
Thanks Hodaya yes i was actually thinking of writing to him requesting his urgent acknowledgement. It would be impossible for me to see him without an appointment and it is an 1 hour on the train to get there. thanks though.x
Posted 2/14/2009 1:00 AM (GMT 0)
Karen,


It looks like we'll be having surgery just one day apart; mine is scheduled for March 18.  As the time gets closer, I feel both more excited and more scared.  I am so ready to have this over and done with, but I'm also very nervous at what changes it may mean in my life.  I can't imagine having it scheduled and cancelled twice.  You must be so upset.  I hope and pray this date is really the date.  We can compare notes for sure!!!!

Hodaya,


Had a great time on the cruise!   It was only for 3 nights, but by the time it was over I was so ready to get home and clean myself out....and boy did I!  The food is just so good.  I think things like that (cruises, vacations, etc) are what I'm most nervous about.  Since all the kids are gone, my husband and I like to take weekend trips, and we go out to eat all the time.  I know things will be very different for awhile, but I'm hoping after a few months we'll be able to be back to normal.

I'm so sorry you're having such a rough time.  I hope you get the answer you want on Sunday.  Please let us know as soon as you find out!

Lizze, I'm thinking about you hon!  Hang in there just a little longer and maybe your new doctor can get this figured out!

Everyone--have a great weekend!

Janie

Posted 2/14/2009 6:15 PM (GMT 0)

Janie and Karen, I will be so anxious to hear how your surgery goes and what you are feeling after. My surgery is set for the 30th of March so not too much longer after yours. I will be thinking of you! I have been having sleeping problems too. I could just fall asleep during the day. At night it's so uncomfortable. I'm learning that's not uncommon for our problems. I didn't know that. I thought it was just more of me being screwed up!

Linda blush

Posted 2/16/2009 8:55 AM (GMT 0)

so my dr still hasn't called me.... maybe they've decided they can't help me after all sad ??

o.k, o.k, i know, i'm just being paranoid. i'll just have to be patient and keep waiting...... rolleyes

Posted 2/16/2009 12:05 PM (GMT 0)

Hodaya it doesnt hurt to chase them - i am always chasing things and getting on people's nerves - how good that you have 5 professionals on your case!!    I am sure they know what to do after all it is obvious your bowel is working properly. hang on there. I know the feeling of whirlpools in the gut - that is what happens to me when the 'clear-out' prep doenst work.

janie i am so jealous you can clean yourself out just like that after 3 days of no lax.  I am climbing the walls if i dont go everyday - i obviously dont go properly when i do go.  if i have two consequetive days of not taking lax twice a day (just so i can go out for the day shopping for example) then i seem to really backed up.  i think that is what happened to me over the weekend.  last week i had 3 days i needed to be out and the weekend was hell.  i was up in the middle of night on both days doing sod all on the loo for nearly an hour but the feeling was there and really uncomfortable and i could hardly sleep. 

i feel a bit of relief today I took my usual 16 sennas but also the clear-out stuff - it is called Picolax over here.  i will take it easy till it all has passed through - i cant work today. 

Burnie yes its good to have others in the same boat at the same time... we'll all be thinking of each other...

xx

Posted 2/16/2009 4:42 PM (GMT 0)
Karen,

The fact that I can go a few days without being too miserable is what has made me put this surgery off for so long. For many many years (over 25), I could take laxatives on the weekend and be ok during the week. As I've gotten older, I can't go more than about 4 days without feeling bad, and now sometimes the senokot doesn't work well, which makes me feel worse than before I took it! I think it gets things moving some, but then it tends to get stuck, which is the most uncomfortable feeling....I usually take the senna at lunch time, and if it works, I'll be cleaned out between 6 and 10 pm. There have been nights when I've been up very late into the morning trying to get it out, though. I've increased the dosage alot over the years, and I'm just done with it. I certainly don't want surgery, but I'm tired of living like this. I have to plan "poop days" and then hope it works, or I'm completely miserable the next day.

We will definitley be in this together next month!! Where do you live? Are you having surgery laproscopically or open? I'm having surgery in Orlando, and it is going to be lap. The Dr. said I should be in the hospital about 7 days, hoping for no complications. I'll have an NG tube when I wake up, and I have to admit, I'm dreading the whole thing, but also am looking forward to a better life. I pray it works out that way; for all of us!!
Posted 2/16/2009 5:02 PM (GMT 0)
Janie

I guess it will be open - i havent a clue, nor has anyone said how long in the hospital but i think 4 days.. No one has said a word so i expect i will find out on the day. Even pre-admission dont know - I have to go to yet another pre-admission appt - that is 3 now! that's becasue the blood changes every six weeks. Seems health probs seem to get sorted faster in the USA it seems.

I live just outside London UK.
Posted 2/18/2009 4:57 AM (GMT 0)

I GOT APPROVED TO GO TO U OF M FOR DR. CHEY!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I just found out this afternoon. HAd a miserable week....so its was a blessing:) My surgeon called my insurance company and spoke with the medical director personally and he approved me!!!!

March 30! Its my only hope.

Lizzie

Posted 2/18/2009 7:36 AM (GMT 0)

hey Lizzie, that's such GREAT news yeah !!!! i'm so so happy for you  :-)  . so looks like your surgeon did try his best to help you after all.

i just hope dr. chey can really help you, i'm praying for you!!

Posted 2/18/2009 9:14 AM (GMT 0)
hey all,
i've just spoke with my gi dr. actually, i wasn't sure wether they'll let me talk to him, but the secretary was really nice and gave me his number. i was soooooooooooooooooo nervous to hear the news that i was actually shaking all over. but anyway, it turns out they didn't have the meeting yet after all. he said the meeting is scheduled for 27th of this month. oh well, still waiting....

(((((((((hugs to everybody)))))))))
Posted 2/18/2009 10:58 AM (GMT 0)
Lizzie i am so glad for you - i do hope something positive comes out of it - though i am unsure what U of M is though.
Posted 2/19/2009 12:55 AM (GMT 0)

More good news....

My surgeon called me tonight and told me that after I go to U of M to see Dr. Chey. If he cannot find any "fix" for me that he has consulted with his partner and there is a new option (some kind of nerve stimulation) that is currently used for urine incontinence, but in May it will be approved for the treatment of Anismus. He just wanted me to be aware that before the decision of an ileostomy there is one other option out there if I can hold out until May. I though it was very nice of him to call me and just check on me and give me that information to somewhat ease my mind.

How are all of you doing?

Lizzie

Posted 2/19/2009 8:13 AM (GMT 0)
Lizzie..... i'm so curius.. do you know the name of this new treatment for anismus?

anyway, it's really nice to hear he's being so caring and thoughtful, a patient needs that sympathy so much from his dr.

we'll be waiting with you till March 30.

Posted 2/19/2009 2:14 PM (GMT 0)

Hodaya~

Its called scral nerve stimulation. I did some research on it last night. It is commonly used for severe urine incontinence, but has recently been used to help those with slow transit ( it has been proven to have pan-colonic effects) and or outlet obstructive disorders (anismus). Basically, they trial you in the first step by placing electrical wires and attaching them to your scral nerves S1 and S3  believe (by your tailbone) and they do this with a scope. If you have improvement after three weeks they permanently implant a "stopwatch" sized stimulator in your lower abdomen under general anesthesia. It can be controlled by the physician with a remote and it has been proven to be very effective. It has not been used directly very much for the constipation, but almost indirectly with the treatment of the urince incontinence has it been found to improve BM's (esp in spinal chord injury pt's). It does not work in everyone, but he wanted me to know that there is an option to try before an ileostomy.

The procedure is minimally invasive and is only a 1-2 day stay in the hospital. Obviously risk for infection, pain at implantation site, and possible replacement of stimulator due to wires coming misplaced. That is all I have found on it so far.

Thinking of all of you........How r u all feeling?

Lizzie

Posted 2/19/2009 6:12 PM (GMT 0)
wow, that sounds so intersting, Lizzie. my drs never talked of anything like that. but i need to understand something.. can this treatment help with CI so that ppl like us won't have to have the colon removed?????

anyway, i'll have to ask about it wether we have it in israel too, cause my drs never said anything about something like that.

i'm gonna go to read about it my self now, thanks for the info, hugs, later now.

love you all
Posted 2/19/2009 6:18 PM (GMT 0)
Lizzie... if you don't mind, i'd like to know your surgeon's full name and the place where he works so i can tell my drs that a real dr was suggesting this treatment and not just "someone's" baseless idea, thanks.
Posted 2/19/2009 6:37 PM (GMT 0)
Lizzie, i think that was a stupid question of me, i guess this treatment is only to treat the pelvic's muscles and not the entire colon, right? anyway, since i also have a certain level of anismus, it's concerns me too.
Posted 2/19/2009 7:25 PM (GMT 0)
wait, wait, wait, i'm confused... now that i read your post again, you DID mention somethin about treating colonic slow transit and pan colonic effects...... sooo..... it CAN help with the CI after all??

Karen... i'm a little lost on that face book site, i saw you wrote me something there, but i'm not sure how to answer.. i DO live in isreal!! does my profile says differently?? 

anyway i'm going there again to see how to answer you there confused

Posted 2/19/2009 7:51 PM (GMT 0)

Hodaya~

Yes, if you research sacral nerve stimulation for slow transit and or outlet obstructive disorders they do talk about how this has been used to help those who have failed laxative use and biofeedback therapy. It states that a total colectomy is more frequently being used these days, but that as a mjor surgery this is something they have recently found to be effective prior to undergoing a TC. I am not saying do not have a TC at all....obviously I did. This is just all very interesting and the more I read the more it makes sense. It does not work for everyone, but it can easily be reversed.

My surgeons name is Nadav Dujovny. He is a colo-rectal surgeon at Ferguson Clinic in Grand Rapids, MI. He has been discussing this idea with one of his partners Dr. Senagore ( I am unsure of his first name).

Its an idea and an option and for me already having the TC it brings me a drop of hope that maybe I wont have to have a bag.

Hope this helps.

Lizzie

Posted 2/19/2009 8:09 PM (GMT 0)
i keep praying you don't have to have a bag, Lizzie!
Posted 2/19/2009 8:19 PM (GMT 0)

Thanks Hodaya....

I keey praying that you get some answers!!! and for everone else on here. My surgeon is actually Israeli......he is fluent in arabic, hebrew, spanish and english. he is very knowledgeable and young. he is only 37....very caring and empathetic. I get all nervous when I talk to him...its almost like I have a little school girl crush. I told my husband....I think its becuase he is so nice!

Haha....im so stupid.

Lizzie

Posted 2/19/2009 8:49 PM (GMT 0)
yeah, i did notice he has an israeli name.. only 37??? wow, is he handsome? i want to be his patient too... not b/c he's handsome, but b/c you say he's nice!! and i sure need i real nice dr!!

i don't think it's stupid. i think it's the thing of a dr-pt relationship that he's taking care of you, so you develope a kind of... how to say in english.... oh i hate it when i'm stuck.... you develope a feeling toward him, you know. i feel like my drs (who are also very young) are like my big brothers and as big brothers i feel like giving them a big bear hug for taking care of me :)
Posted 2/20/2009 5:02 PM (GMT 0)
Lizzie I am so excited for you!! March 30 will be here before you know it and the new treatment you are discussing sounds promising as well. I hope everything works out and you don't have to have a bag. It is so great that your doctor is trying his best to explore all available options. Everyone should be so lucky!! Hang in there and keep us posted.

Hodaya, how have you been feeling lately? I was surprised that your doctors still haven't discussed your case. It must be so frustrating. I would be going crazy by now! I'll be waiting patiently with you until the 27th. You hang in there too.

You know, I'm on facebook also but I haven't logged in in so long I no longer have access to the email address I used and I forgot my password. I have been trying to contact their help desk to fix it but they haven't contacted me back yet. I don't want to have to create a new one and they say you aren't supposed to. I already had it all set up and everything. It is so frustrating!!
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