TOTAL COLECTOMY PART 22

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XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/1/2009 6:44 AM (GMT -6)   
Just thought I would open it....
Lizzie
Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Currently Diagnosed with Anismus and getting second opinion
 @ U of M March 30
 
"The Greatest Healing Therapy is Friendship and Love"


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/1/2009 9:27 AM (GMT -6)   
idea  that was a good thought, Liz wink !!
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


Mom2sophia
Regular Member


Date Joined Aug 2007
Total Posts : 262
   Posted 4/1/2009 1:13 PM (GMT -6)   

I just read your post sweetie!!  I am so glad they have the best of the best working on your case.  BUt like someone else said...at least you know you did EVERYTHING before making a drastic decision.  I envy your courage and patience with this whole ordeal...

DId they say at all why you may have developed the anismus?  What is it from?  Does it just develop over time?

I wish I was closer...I'd give you a big hug around that tiny 113 lb body of yours!!! I hope you can at least start drinking some carnation instant breakfast to get some nutrients in you...you are going to need all the strength you can get for these next few weeks/months.

LOVE YOU SO MUCH!!!!

Lindsay


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/1/2009 4:15 PM (GMT -6)   

Hi all.....

Just another update.

Dr. Chey's office called just before five tonight and gave me the first recommendation. I am a  bit frustrated to say the least, but am willing to do whatever.

They want me to set up daily biofeedback at home with my physical therapist to do daily??????? and try this for two months and if I do not have any improvement to call back for further recommendation. First of all...I am going to vent. I did biofeedback therapy weekly for 75 min every Wednesday for nearly three months and had "little to no improvement". We tried the machine, baloon therapy, and manual therapy with at home stretches and exercises. I did everythign I was supposed to do. Now, I am supposed to do more of this crap and continue to feel like crap for at least another two months!!!!

Then I got to thinking when I got off the phone with the lady from his office. I should make an appointment now for it took 13 weeks to get in the first time. I called right back and the lady said quote" your lucky, I just cancelled the only June appt he has left. His next avbailable would have been in the end of AUGUST!!!! If I would have waited till the beginning of June I would have not gotten in till probably NOVEMBER. So I took the June 8 appt.....becuase I am not trying to be negative, but I do not think this is going to work...why would it now. I AM SOOOOOOO INCREDIBLY FRUSTRATED!!!!!!!

I need your opinions on this. Have any of you had success with biofeedback therapy?

So Sad!!!

lizzie


Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Currently Diagnosed with Anismus and getting second opinion
 @ U of M March 30
 
"The Greatest Healing Therapy is Friendship and Love"


burnie
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 4/1/2009 4:21 PM (GMT -6)   
Hello Everyone~ I can't believe the amt of time that has passed since I was last on here. I was supposed to have my total cholectomy March 30, but rescheduled because of family problems. We have a 16 yr old who needed residential treatment for mental health reasons and I didn't want to be having surgery at that time. So now I am set to have the surgery April 20th. I tried reading back and see there have been a couple of surgeries done since I was on. I am very curious on how you felt the week after surgery and the 2nd week after. How long were you in the hospital? Maybe I really shouldn't know these things as it will scare me more! wink I just want it to be over. Then I panic. I suppose this is normal. I had asked a question about using probiotics at one time. I tried for about a month and nothing new happened. At least I tried. Not much else to report. I am just trying to figure out how much help I will need in taking care of my kids. I have 4 kids, but one is very special needs and has to have constant supervision or the whole neighborhood will be sorry! I am going to try and keep up with you guys from now on. Not too many "regular" people are good listeners or talkers about this topic! rolleyes
Linda

Mom2sophia
Regular Member


Date Joined Aug 2007
Total Posts : 262
   Posted 4/1/2009 8:29 PM (GMT -6)   

That's ridiculous Liz!  It's a good thing you called right back...for the doc to know the kind of situation you are in...you'd think he would have told you HIMSELF to schedule out...

I guess you are at the mercy of what he thinks should be done.  If you STRONGLY feel this is a waste of time, call and request to speak with him or leave a message and ask what would be the next step after this?  Is this the LAST thing before surgery?

Lindsay


burnie
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 4/1/2009 8:37 PM (GMT -6)   
Oh my goodness Liz! You've been through so much. I would be just as upset. I haven't had any experience with biofeedback. I hope someone here can give you some answers.
Linda

help4CI
New Member


Date Joined Apr 2009
Total Posts : 6
   Posted 4/1/2009 8:42 PM (GMT -6)   
Hello Everyone,

I am new to this and am so glad there are other people who have gone through or are going through the same thing as I am. I am 28years old and Just scheduled my surgery for May. I am having a total abdominal colectomy and ileorectal anastomosis. This is going to be done as a Laparoscopic surgery. I was diagnosed with colonic inertia for sever constipation. I have had the transit study done and on day 7 they found 23 of th 24 rings still in my large intestine. I was just in the hospital for 5 days for impaction. It was 3 and 1/2 weeks since i had a BM so i took an enema and the liquid did not come back out so i new there was a problem when i got the the ER they did an x-ray and i was completly impacted and they admited me. I am sick of living like this and know surgery was is only other option after suffering for years and trying and exhausting every medicine out there. I am hopeing being on here and talking to some of you will ease my mind about the surgery and find out some great information about the recovery, what life will be after surgery(anything is better then going to the bathroom once a month), what type of diet i will have to be on, is weight lose something that happens and anyother helpful information and advise i can get before I have the surgery.

thanks!!

Kristin
currently 28 years old
10/2006 gall bladder removed (25 yrs old)
06/2007 hystorectomy/rectocele/cyctocele repair/bladder cvt (26yrs old)
02/2008 plevic floor dysfunction/biofeedback studies(27 yrs old)
03/2009 diagnosed with colonic inertia
05/2009 schduled for total abdominal colectomy and ileorectal anastomis


burnie
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 4/1/2009 9:13 PM (GMT -6)   
Hi Kristin,
I am anxious to hear all the same information you are too. My total colectomy surgery is going to be on April 20th. I've had colonic inertia my whole life. Just getting more worse as I get older. I've had a hysterectomy at age 30 and gallbladder out too. My dr is going to start with laparoscopy but he may have to go with the regular incision because of scar tissue from those and other laparoscopy surgeries I had for endometriosis in the past. Wow, 3 1/2 wks, I thought my 2 wks without going and then just a tiny bit was bad. People just don't know what they are complaining about when they say they are uncomfortable because they didn't go for 2 days, huh?

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 4/1/2009 9:25 PM (GMT -6)   

Lizzie,

I'm so sorry you have to wait.  I tried biofeedback for a couple months (weekly) but reallly saw  no improvement.  If you can't get in to see the Dr. until June, you may as well try again though.  Maybe, just maybe, it will work.  I pray it will!

Linda and Kristin,

I had  laparoscopic with hand assisted total colectomy 2 weeks ago today. I was in the hospital for 8 nights, mostly because I had the NG tube for 5 days and catheter for 6.  I won't lie, it wasn't fun, but when you can't have bm's for weeks at a time, that's certainly no fun either.  I came home last Thursday and have had about 15-20 bms a day since.  It sounds like a lot, but there is very little each time, and I always have plenty of time to get to the bathroom.  In the hospital, on day 6 I had liquids for the first  time, and I got the runs like you wouldn't believe....I couldn't even tell when I was going to go.  I was wearing depends and going through them like crazy...but only for 24 hours.  I started solid food (normal diet, first meal was spaghetti and meat sauce!) and then I started going  about 5-6 times after each meal, but I have  complete control.  My doctor told me to eat a normal diet and if something didn't agree with me, to wait and try again a few weeks later.  So far ice cream is the only thing that seems to not be a good idea!

I'm 53 years old, so I would think it would take me a little longer to bounce back, but I've already been to the mall, to the grocery store, to my mom's for dinner and I walk every day.  I haven't stayed in bed since I got home.  I try to get alot of rest, and I still can't drive (I go to the surgeon tomorrow so hopefully I'll be able to after he sees me) but I'm also up and around all day.  I've only taken  4 pain pills since last Thursday when I came home, and that's been at bed time.

I have no idea what the future holds for me, but I lived on senokot for 30 years and finally enough was enough.  I was scared to death to have the surgery, but now I'm so relieved it's over.  I'm still very tired, but my kids are grown, so I don't have any little ones to take care of.

My doctor said my colon was 8 feet long....5-6 feet is normal, so I feel totally justified in taking such drastic steps.  He said that extra 2-3 feet was probably a huge part of my problem.

If you have any other questions, just let me know.  I'm still learning about what to expect, but I can tell you that I am so much more comfortable now than I was 2 weeks ago, pain and all.  I don't think anyone who hasn't walked in our shoes has a clue what it's like not to be able to poop! cry .

Janie


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/1/2009 9:37 PM (GMT -6)   

Welcome Kristin and Linda!!!

First off Lindsay...I miss you and need you SOOO bad :) We need to set up a time to chat. According to him this is the LAST before more surgery.

Ok, anyways, to try and answer some of your questions.

This is based on my experience, which was not mormal, but can still help.

I was in the hospital 9 days the first time after my TC. I am not going to lie, I have never felt so bad and felt like I had been hit by a truck. I work up with a pain pump going....I was on this for three days. Its very important to WALK....even the next day after surgery. You do not want to develop a post-op ileus as I did and which is what cause my 9 days and 3 NG tubes. So....WALK! WALK WALK! and set a goal each day for how many laps or whatever you want to do. Bring bigger than normal comfy clothes and studd easy for the IV to get at. You may have some incontinence when your bowel wakes up and the hospital usually just has massive pads, but you can bring your own. Bring an ipod or laptop. You can expect to be there at least 4 days minimum and that is low. You will not be able to lift over 10 lbs for 6 weeks after surgery. I was on a low residue diet after D/C for 4 months, but then again I had complications. Most can resume normal eating after you hit the reg diet in hospital. You will start out NPO until you have bowel sounds, then soft, the, reg and it all depends on how you handle it.

Most are back to work in 8 weeks, i was out for 4 months nearly. You will not feel normal for almost three months at least. You will have way less energy and little things will tire you out. I had some post-surgery blues.....this lasted about 3 months for m,e but then again I had complications. Once you start feeling better you can resume all normal activities. I was able to workout and do situps with no problem at all as soon as my complications cleared and I had energy.

In my little honeymoon of feeling well...I felt the best I ever had in 8 years. I was working out and eating whatever. I do not regret having this surgery for one minute EVER!!! Do not look at me and think its going to happen to you. I am that 5 %......you girls will be fine and you will get you lives back. You will start out with watery stools about 15 times a day esp after eating, but not in large amounts and the more food you eat esp with fiber they will slow down. The avg without a colon per my surgeon is 3-5 bm's a day and I do believe they become of normal consistency. You will go home on some type of pain meds, but you will not need them for long. I went back to work with a belly binder. I am a nurse and on my feet and needed the stability. Hmmmm.....what else. Bring lots of underwear just in case, treaded socks for walking or slippers, a robe if you like them, your own pillow and blanket, own toilet paper, stuff to read, phone charger, spme of your own foods, hard candies or mints, shampoo.conditioner, razor, etc Hope some of this helps. I wish you guys the best.

Lizzie


Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Currently Diagnosed with Anismus and getting second opinion
 @ U of M March 30
 
"The Greatest Healing Therapy is Friendship and Love"


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/2/2009 5:28 AM (GMT -6)   
hi all

Lizzie, i had biofeedback for 3 months weekly too. it really didn't change anything for me, except that the PT did some maual treating and made the awful constant pain i had in my coccyx (probably due to tissue from the STARR procedure) to completely disappear!! it's been 4 months since my last bio treatment and the pain never came back, so i'm really grateful for that. but as for my bms, there was no change there.

i was so hopeful about the sacral nerve thing.. i'm so disapointed it's not an option anymore. i don't know, but maybe if it's on a daily basis it will make a diference? i'm so sorry you're going through all of this, sweetie.

it's all just taking so long to get things done. i know, cause things are going slow for me too. i talked to my dr a week ago and he said he'd call me back in a week and it's already been a week since then and he still hasn't called me. and total it's been 6 WEEKS since their consultation and still nothing happens!! i'm so discouraged as my life are just passing by w/o me living them at all. sorry for the vent.

it was smart to call and make the appt. i always call in advance too, to save myself an appt on time, instead of waiting too long.

Janie, it's so good to hear you're healing so well and able to be up and about and doing stuff. please continue this way. i can't wait to hear how your dr's appt went.

Linda, i was thinking about you just a few days ago and was wondering wether you've had the surgery as planed. anyway i wish you great success with your surgery, my dear. hope you heal as well as Janie to be able to chace your kids around..

welcome Kristin, i haven't had surgery yet, nor do i have a surgery date, but planing to soon.

Lindsay, i remember you!! i've read all about your story. how long has it been since your surgery? how are you doing? how are your bms, if you don't mind me asking. i'm just so curious if the results are still good in the long run.

Karen, Amanda, hope you're well!!
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


jjfromga
Regular Member


Date Joined Mar 2009
Total Posts : 48
   Posted 4/2/2009 5:57 AM (GMT -6)   
Lizzie,

I am currently doing biofeedback as well for the second time. It has been no help at all so far. I don't have high hopes. I also have anismus, I believe. My pelvic floor muscles are all underdeveloped and very weak. Also I cannot relax the puborectalis. (Not really sure how they are weak, but i can't relax...)

Basically I'm just trying to keep people happy by trying it again. After this the only options I haven't tried are either the ACE procedure (which I don't think will work for me) or a colostomy. Honestly, I'm just ready to move on with it and do whatever needs to be done. Like you, I'm sick of waiting to get my life back. I just want to be happy and live my life again.

I would like to hear how it goes for you. I'm so sorry you have to wait so long to start. I think the most frustrating thing about everything is the waiting. Waiting for people to call back, waiting for appointments, it just seems like everyone is in such slow motion. Don't they understand how terrible we feel?

Good luck!!
Lauren

2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 4/2/2009 9:05 AM (GMT -6)   
Ok, so I was WRONG!! I went to the doctor on Tuesday and I don't have hemerrhoids, I have a fissure. I don't know if that's better or worse, all I know is that it hurts!! She prescribed some cream for me with lidocaine in it that the pharmacist has to make and I just picked it up yesterday. It has helped a little bit, but it is still very very painful and itchy....Also, they set me up for an appointment next Tuesday for some other tests. Not a CT scan but some other test to put contrast in me and take an x ray to see how big the anastamosis is or if there is any constriction. Then they want me to try to push out the contrast and then they'll take another x ray and see how much I got out. I can't remember the names of these tests, but I know I've heard you girls talk about them before, they're nothing new, just new for me. I sure hope nothing is wrong...I still have symptoms of a partial blockage and that's why she's checking all this. We'll see what happens...

I haven't been feeling well at all so I have to admit I haven't been keeping up with the posts. I'm SO SORRY! I hope everyone is doing well though. I miss you all so much!!
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - March 13, 2007
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Temporary Ileostomy due to small bowell perforation Septepmber 29, 2008
Ileostomy Reversal - December 15, 2008
Multiple Small Bowel Abscesses-December 22, 2008
Leak at original Anastamosis -December 25, 2008
JP Drain removed - January 23, 2009
Still adjusting to life without my large intestine...
 
The whole world is at your feet; so paint your toenails Red!
 


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/2/2009 9:32 AM (GMT -6)   
me miss you too, Amanda :) !! you poor thing, i seems you just can't shake those darn probs off of you. i hope things solve for you, honey.

about the test, maybe you mean defecography?

keep us posted.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/2/2009 10:37 AM (GMT -6)   

Hey guys....Just checking in today. I am still so incredibly srudtrated. I have tried to get a hold of my PT for biofeedback and see how her and Dr. Chey's conversation went, but she has been with patients and so have I so far today.

Lauren- Geez, you sound just like me. So let me get it straight...you still have your colon I am assuming? Why do they think a second round of biofeedback will help for you and how long are they making you do this? I am in your same boat....I need answers. Its drving me crazy. I am hoping I can start biofeedback within the week and then return to U of M June 8. It still seems so far away.

Hodaya- I feel your pain on the waiting. I believe its the hardest part of all of this. I feel so bad that you have to continue to be in pain. How is your mom doing this week? I hope you can find some peace in all of this sooner than later. I am too sad that he does not think the nerve stimulation would be that good of an option. He said that it is usually used for incontinence and he has never seen it used with anismus or pelvic outlet obstruction.

Amanda- Hope they can figure you out...sounds like your aving a defecography. Hope all is well.....and that your business is taking off. Miss you on here. Hope the cream helps that poor bum of yours!!!!

have a good day everyone.

Lizzie


Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Currently Diagnosed with Anismus and getting second opinion
 @ U of M March 30
 
"The Greatest Healing Therapy is Friendship and Love"


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/2/2009 12:12 PM (GMT -6)   
thanks Lizzie. actually, i don't know if i've said this, but my mom is so much better and getting out of the hosp soon, but with the oxygen, you know, a tube in the nose. but today she got up and walked a little w/o the oxygen. she's done that several times today, so we're kinda hoping that maybe in the near future she won't even need the oxygen at all. no one can say anything for sure, so we'll just have to see how it goes.

about the sacral thing, well it was dr Nadav's idea after all and not dr Chey's. but i wonder if dr Nadav thought about it just on his own, or has he consulted with some other coligues of this field? i mean why would he make the effort of calling you himself to tell you about this and bother so much if normally it's not an option? it puzles me..
maybe he wants to be the first to try?
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 4/2/2009 12:17 PM (GMT -6)   
Hi all,
Lizzie and Lauren, sounds like you have alot in common. Lauren, have you had surgery yet, or you're still trying biofeedback before surgery? Your doctor is sure a colectomy won't work and you'll need a colostomy? Lizzie, I'm still thinking of you every day and hope and pray maybe the biofeedback WILL work this time.
Amanda,
You poor thing. I hope your bottom feels better soon and that you don't have any other major problems. It's so discouraging to go through all you have and still have problems, I'm sure. Please keep us posted. I'm just curious, you didn't have the defogram before surgery? Did you have any other tests besides the sitz marker?
Hodaya, Lizzie is right, the waiting is horrible. When you can't go, time just seems to drag, doesn't it? I hope all this waiting will be worth it, and you can have a successful surgery before too long.

I had my follow up with the surgeon today and when I told him I was going about 20X a day, he said that's too much, and have gave me a prescription for lomotil. Has anyone else used this? I'm so scared to try it because I honestly don't mind going 20x a day! The fear of being stopped up is always on my mind. I had one bad day when I got home from the hospital where I could only go about 4X and it was so difficult to get out, and I really don't want that again. I know 20x is too much, but it feels so good to always be empty!! Does anyone know how lomotil works? Will it stop me up??

I asked the surgeon about my rectocele and he said if I have problems down the road, it's possible to remove it, but to remember that I also have pelvic floor dysfunction and that's part of my problem. Since I'm going so much now, he didn't seem concerned, but told me to cut back on fiber if things get too hard to get out. He also said I could use an enema if I needed to. I didn't know that, but it's good to have a back up plan!

I can drive short distances for the next couple weeks, and I don't see him again until the end of April unless I have problems. He said my colon was 8 feet long, so surgery was over 6 hours instead of the normal 4.5-5 hours. He said I had enough colon for 2 people. When I asked what was there now where the colon had been, he said the insides just sort of jiggle themselves around, and I won't have any empty space. I'm still amazed that he got my colon out of these tiny tiny incisions I have. Just amazing.

I just had a Dairy Queen Moolata and so far, so good. I've been craving one all week, and I'm not sure why, I've only had one before in my life, but it was so so good. I didn't eat all morning because I didn't want to have to go to the bathroom on the way to the Dr. (over an hour each way) so when we got home, we hit the Dairy Queen. So so good!!

I hope everyone starts feeling better, and starts getting some answers.

Hugs, Janie

burnie
Regular Member


Date Joined Jun 2007
Total Posts : 60
   Posted 4/2/2009 1:14 PM (GMT -6)   

Janie, I am feeling so happy to hear how well you are doing! Thanks for the detailed updates, it really helps with my nerves. I can't believe how much lg intestine you had in there! Whoa! I hope I end up with only the laparascopy too. It must make recovery easier since there isn't the larger incision.

Linda


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/2/2009 1:15 PM (GMT -6)   
Janie, remember PhyllisB? she's the only one here to report about lomotil. she said she was given imodium at first, but it didn't agree with her so she stopped. but she kept going 15-20/day and you know what? she was actually pleased with that too. she was comfortable with that, like you.

only about 2 yrs after the surgery she was offered the lomotil and last i heard she was very pleased with it. it slowed things down to 6-7/day. she said she's just so happy she can sleep now for 4 hrs straight at night. i think you should try and if it doesn't do you good, you can always quit it, you know.

i'm glad you enjoyed your Dairy Queen Moolata!!

thanks for your support, at least i have you guys while waiting, so that's a good thing, love ya!!

hugs to you too!!
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/2/2009 2:59 PM (GMT -6)   

So I spoke with my PT this afternoon. She said that Dr. Chey does not want to think surgical right now and even though she was adament that the biofeedback did not budge anything the first time and I did it weekly for 75 min sessions and tried the stimulator, manual therapy, and baloon therapy. he asked her if there was anyting else she thought left foe me to try and the only thing she told him was about the at home biofeedback machine. It is like what you do in the office with the rectal probe, but small and you cannot see the wave lengths. She said I can do this daily and I should know within a month if its not going to be beneficial He is having me try for two months, which I will do, but am just so discouraged. I mean....why would it work the second time?

She is going to get a hold of me next week to set this up to start. Hodaya- Yes, it was Dr. Dujovny's idea and he had consulted with a colleague of his within their practice. Their is information on it working for constipation, but it does seems that all of the studies that involved those who had both pelvic outlet obstructive disorder and colonic inertia did not have successful results with it. All in all....I would try it, but I guess it would be up to their recommendation. Seriously, I am so reasy to just have surgery. I have been researching in detail the BCIR which is a continent ostomy without a bag and you use a catheter to emty and the stoma if flush with the skin, etc. I have been in contact with a hospital in FL and they perfoem it at Cleveland Clinic. They believe I am a candidate for this surgery....it is major much like the TC with a longer 8-14 day hospital stay, but if I have to have an ostomy it is omething I am serisouly lookig into. I am so sick of living like this....waiting.....feeling crappy....etc. I will make them happy and to the biofeedback and maybe with a miracle it will work, but I am not holding my breath.

Anyways....Janie...glad to hear you are doing so well. I have hear the Lomotil is good. I hope this works out for you and you can still feel empty.

Hodaya....So happy about you mom! That is awesome!!!! Prayers have worked. Hope your hangin in there...

Lizzie


Chronic Lifetime Constipation
Diagnosed IBS-C 2000
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008
Four abdominal abscesses- Feb 2008
2 JP drains- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008
Botox injections Dec. 17 2008
Currently Diagnosed with Anismus and getting second opinion
 @ U of M March 30
 
"The Greatest Healing Therapy is Friendship and Love"


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/2/2009 3:40 PM (GMT -6)   
boy, Lizzie, you sure did a lot of homework researching possible solutions. don't know nothing about that surgery you mentioned. didn't quite understand it either, but i want to google it to learn more about it, what do u mean n ostomy w/o a bag?

o.k i'm curious, so i'm gonna google it now.
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/2/2009 3:42 PM (GMT -6)   
BTW, where did u disappear in FB?
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/2/2009 3:49 PM (GMT -6)   
wow.. how interesting, i just googled BCIR and i got to see how it looks like in the drawing. wow.. so many possibilties i don't know about. what do the studies show about success rate? are patients who have it satisfied with this?

i'm gonna read some more.. later
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/2/2009 4:44 PM (GMT -6)   
it's 2 am here, i'm going to bed now, just wanted to tell you THANKS FOR YOUR PRAYERS LIZZIE AND EVERYONE ELSE, it means so much.

G-D bless you all!!
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction

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