colostomy for constipation/slow colon motility

does anyone know of colostomy for severe constipation/ slow colon motility
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sunshinefl
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Date Joined Jun 2008
Total Posts : 49
   Posted 6/21/2008 7:27 AM (GMT -6)   
eyes mad does anyone know if they do colostomies or something like that for severe constipation/ slow colon motility problems? I have been dealing with severe issues for years now I have had surgery for hemohroids, fell hysterectomy with pelvis structure repair with rectocele repair and also the starr surgery for oulet dysfuction and still can't seem to have a bm without taking tons of laxatives and enemas... my behind always hurts and my life for 5 years has consisted of going to work (barely making it their due to the pain) and going home and taking a bath and getting in the bed... the weekends I barely can tolerate going to the grocery store ... I really want my life back I have a wonderful husband that wants a wife that can do things with and I have kids that need their mother but the doctors don't seem to understand that I can't live like this anymore, its not fair... everytime I go to the doctor they are like I know what's wrong they do surgery like the starr surgery and then when it doesn't work its like they don't want to admit that it didn't work so they just say take laxatives and fiber well it all that I have lost so much weight I look really sick I am weak all the time I puke every morning and still have severe pain... they just don't get it.... to me the answer seems simple BYPASS all that I will give my left leg to feel better~ will a colostomy help? How do I convince the doctor I can do the laxatives anymore, IT DOESN'T HELP!

sunshinefl
Regular Member


Date Joined Jun 2008
Total Posts : 49
   Posted 6/21/2008 10:47 AM (GMT -6)   
Oh I have went to all 4 here where I live the one that did the starr surgery and laughed about my just wanting to have a colostomy I had to travel 3 hours away to see him and he is marked the top colon and rectal disease doctor in florida... I just don't understand why they don't understand... I did find some posts on people who have had colostomies due to constipation and motility problems so I don't know where else to turn or how to convince my doctor that living this way is not acceptable to me

mcmom1234
New Member


Date Joined Mar 2008
Total Posts : 16
   Posted 6/21/2008 12:03 PM (GMT -6)   
I was you two weeks ago. I had no movement in my bowels for forty years. The only way to pass waste was with large Enema but it took 5 of them to make my body work once. Each doctor not knowing what was wrong said I had IBS, mental problems, raped as a child up the butt without knowing it.... I was in bed off and on for 5 years with no life at all . I had Vertigo, vomiting, spasms in my gut and no longer ability to absorb Vitamins , blackouts, could not tolerate heat and started showing signs of stroke with slurred speach and unbalanced walking. I have went to 20 GI doctors over the years. This last doctor a colorectal surgeon said the muscles in my large intestines were not working. This was found after many test.
The surgery I had was called a sub-total colostomy. The doctor removed my large bowel and attached the rectum to the small bowel. What does this mean I have no bag and go to the bathroom like before only less pain. Should I tell you yet that the surgery was done June 10Th. It was a painful recovery for a week and I spent three days in the hospital.
If you need advice start researching doctors in your area to see who is the best and please get a second opinion.

sunshinefl
Regular Member


Date Joined Jun 2008
Total Posts : 49
   Posted 6/21/2008 12:26 PM (GMT -6)   
Thank you for the reply... it sounds as if we have a lot in common... did you also have a lot of contant rectal pain and pressure and if so since you do not have a bag do you still have the pain and pressure or is it still too soon? I have been to all 4 doctors in my town and the one that did the starr surgery is supposed to be the best but I think they all say that their the best... I also asked him about a colostomy and he giggled and said I was too young... I really feel like all the doctors think you are crazy and think that if u can get it out with 5 enemas a day its ok don't worry about the rest of it alteast you got it out but they really need to understand more as to what we go through in our everyday lives with this.. Good luck with your recent surgury and I hope it all works out for you.

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 6/21/2008 5:40 PM (GMT -6)   
Sunshinefl,
 
Where in Florida do you live?  I go to the Colon and Rectal Clinic in Orlando and have had all the tests, etc.  I am having biofeedback now for pelvic floor dysfunction, and then am scheduled for the STARR procedure for a large rectocele, and then a colectomy if that is still needed, which the Dr. feels it most likely will be.  Have you had the sitz marker test?  If you flunk that, your surgeon shouldn't be laughing about you having a colectomy!
 
There are good surgeons out there who will be sympathetic to your problems.  If you live anywhere near Orlando (I live only an hour away) I would suggest you visit them.  If you need a recommendation for a Dr. there, I'd be happy to talk to you more about it.
 
Janie

sunshinefl
Regular Member


Date Joined Jun 2008
Total Posts : 49
   Posted 6/21/2008 6:21 PM (GMT -6)   
sad thank you for the reply I am traveling to orlando to see the doctor and he did the starr surgery on me but I still have the same issues I have already done the biofeedback also don't get discouraged though because just because it didn't work for me doesn't mean it won't work for you... you said your dr is more understanding about the same problems and does or doesn't think you will need a colostomy? I would love a referral to your doctor...

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 6/21/2008 8:10 PM (GMT -6)   
Sunshinefl, it sounds like you might need a colectomy (not a colostomy).  confused It's when they remove your colon and attach your small intestine to your rectum, and it allows you to have bowel movements.  A year ago this coming August, I had a colectomy, and it's been the best thing in my life.  Before surgery, I had a motility disorder (colonic inertia) and couldn't have a bowel movement on my own in a month.  No laxatives or fiber worked for me, and I had problems eating.  My stomach and legs were full of toxins, swollen, and I hurt. sad
 
I live in Florida, too, and I'm saddened that you've had a difficult time with your doctors.  I had a rectocele surgery exactly a year before my colectomy.  Before my rectocele surgery, I could have bowel movements on my own.  Due to the surgery, I couldn't any longer and suffered until my colectomy.  Primary care doctors, digestive disease clinics, and emergency rooms didn't know how to help me.  They sent me to Emory hospital in Atlanta and they wanted to give me a colostomy bag.  Thank gosh I didn't give in to them.
 
Have you heard of Cleveland Clinic in Ft. Lauderdale, Florida?  They have one of the best colorectal departments in the world, and number 1 doctors in the world, too..  You can make appointments with them, or send them your medical records and they'll try to give you advice thru the mail.  I saw a wonderful doctor there.  His name was Dr. Wexner, and he and his surgeons are the best in my eyes.  Before surgery, I had 8 days of testing and 3 months later I had surgery.  I stayed in the hospital for 9 days and the doctors always came by at least 2-3 times a day to check up on me and my family.  It's a beautiful,caring, and clean facility.  The nurses are kind and I didn't once have a problem while there.  Still, when I have questions, I call them and always within an hour or so, one of the doctors will return my call and answer my questions.
 
You sound as sick and uncomfortable as I was.  Keep pursuing your health until someone listens.  It's frustrating but there are caring doctors available.   I did alot of research on the internet, too.  A colectomy is a difficult and painful surgery, but it's been a godsend for me and my health.  I'm eating healthy, excercising, and enjoying my new body.  Everybody says that I have a spark in my eyes that hasn't been there in awhile..  I hope that you can get the help that you need and deserve..
 
If you have any questions, don't be shy.  I'll try to help you if I can. :-)
 
Butterfly

sunshinefl
Regular Member


Date Joined Jun 2008
Total Posts : 49
   Posted 6/21/2008 8:36 PM (GMT -6)   
I heard with a colectomy that you actually have the opposite where you are constanly having to go to the bathroom and if that is the case wouldn't you have the rectum pain and swelling still? Or is that not the case?

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 6/21/2008 9:25 PM (GMT -6)   
Sunshine,
My doctor is Dr. Ferrera. I know there are several doctors at the clinic, but he's the one I've seen several times. Who did you see tthere? Did they run all of the tests (sitz marker, defogram, etc)? What did they show?
Butterfly,
I thought of going to Cleveland Clinic, but I live about 3 hours from Ft. Lauderdale and didn't think I wanted to have the surgery so far from home. Are you nearby? Did you have any complications after surgery? I just don't want to have to run back and forth to Ft. lauderdale after surgery. I think I will send them my records though...just for another opinion. Thanks for the information about them.
Also, did you have much of a problem with incontinence after surgery? Sorry for the questions; I'm just scared! LOL

sunshinefl
Regular Member


Date Joined Jun 2008
Total Posts : 49
   Posted 6/22/2008 7:32 AM (GMT -6)   
No I don't live near ft lauderdale... maybe we can exchange email addresses so we can talk more personal about this stuff... my email is lvntonystewart20@bellsouth.net... no I didn't have any problem urinating and still don't

mcmom1234
New Member


Date Joined Mar 2008
Total Posts : 16
   Posted 6/22/2008 7:44 AM (GMT -6)   
I am doing great after surgery my bowels started working four hours after it was done and they work like a almost normal person. I eat then have to go. For me and my husband it is a wonderful since going has never happened in my life.
You asked if I had rectal pain before and yes I did. It always felt as if I was being torn apart by nail on the inside of my guts. On the outside of my body it felt like I was carry around 30 pounds of extra weight around the midsection. It always hut when I bent or moved. The pain stopped after the surgery.
When I did the Enema's I would not do them all the same day. The doctors wanted to clean out the waste every five days. I would do one a day until by the 10 th day they would start working.

sunshinefl
Regular Member


Date Joined Jun 2008
Total Posts : 49
   Posted 6/22/2008 7:49 AM (GMT -6)   
Jane~I am sorry incontinance did u mean with urine or bm, I didn't have either... they said after surgery you would have urgency to have bm but I didn't still don't just never even feel like I need to have one everything just stays up there... almost like I have no feeling there at all its kinda weird I told the doctor that and he noted it in my records but didn't seem too concerned... the surgery was painfull the first couple days and I couldn't have a bm afterward when I talked to the dr about it 5 days later he told me to do an enema so I did and continue to have to use laxatives and enema so no change there other than that it was a fairly simple procedure went back to work after 2 weeks still with the same problems but needed a paycheck so I really didn't have a choice~ I wouldn't reccomend that you need 4 weeks atleast... I really suffered going to work to early...

sunshinefl
Regular Member


Date Joined Jun 2008
Total Posts : 49
   Posted 6/22/2008 8:02 AM (GMT -6)   
Mcmom~ thanks for the reply I left my email address for janie you are welcome to it also... my biggest fear about a colectomy is all the pain that I have gone through espessially through my rectum from all the laxatives and enemas and straining that that pain will still be there actually still having a bm through my rectum but I am going to talk to my dr about it... I hope he will atleast consider it...

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 6/22/2008 2:06 PM (GMT -6)   
Hi again, everyone.  I'm about 8 hours south of Ft. Lauderdale and it was worth it, even being so far away.  I've only had to go back to Ft. Lauderdale once since surgery last year, and that was for a 1 month check-up after my surgery.
 
Immediately after my surgery, my bowels were working and overtime.  Yes, I was incontinent for a little over a month, but that is normal for the surgery.  Since then, I am normal again, and have one bowel movement per day and no pain or swelling anymore.  My only leftovers from surgery, are I'm sometimes gassy and also, I have to eat 6 small meals a day or I feel bloated and I was a big eater before surgery.  I'm alot more healthier now and watch what I eat, because sometimes my tummy acts out.  I cannot eat any fried foods.  In time, I've learned what my body can and cannot eat.  If I eat something that doesn't agree with me or I pick up the stomach flu, I will be in the bathroom with runny stools.  It's worth it for me to lead an almost normal life again.
 
 
butterfly
 

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 6/22/2008 3:44 PM (GMT -6)   
Butterfly,
Did you have an open or lap. surgery?  The Dr. I'm seeing said he would perform the surgery laproscopically. 
 
I'm really torn about what to do.  I know I won't be having the surgery until after the first of the year--we have so many things planned for the fall, I work at Kennedy Space Center, and we have a new contract starting October 1, so I really dont want to take off until I've been wth the new company for a few months, and I'm going to have my first grandbaby the beginning of December, so I'm going to put the surgery off until at least January...that's the plan anyway.  I'm pretty happy with my Dr. at the Colon and Rectal Center, and his credentials seem very good.  My local gastro Dr. said he's very good.  However, I keep hearing how great the Cleveland Clinic is, and I wonder if it's worth a trip there to talk to them?  At the very least, I'm going to send them my records and see what they think.  I'm really scared about having the surgery--I'm not crazy about having surgery at the hospital in Orlando.  Did you ever consider any other place?  What made you decide on the Cleveland Clinic?  If you were to have a problem now (blockage, etc) would you have to go back there, or would you just go to your local hospital?
 
Have you lost weight since the surgery?  I've read that some people have lost; others have gained.  I'm ok where I am; like most women I'd love to lose about 10 pounds, but I'm not really overweight....it's just that things have shifted over the years to be sure!!
 
Janie
 
 

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 6/22/2008 7:52 PM (GMT -6)   
Janie, my surgeon tried doing laproscopic surgery with me but it turned into open surgery.  I had too much scar tissue from another surgery, so lap didn't work.  I have a scar from about 2 inches above my belly button to my pubic area.  At first it was very red, but now it's really faded and I can't see part of it.  I've been putting cocoa butter lotion on it and it really helps.
 
After my colectomy, I was off from work from August 8 until October 1, and then I went back to work part time for another 2 weeks.  The recovery was difficult and long.  The surgery is difficult and takes awhile for other parts of your body to start working together and taking on new roles.  After my colectomy, my surgeon required me to walk and walk some more.  Since I had colonic inertia (motility disorder) and constipation, my surgeon said that I need to walk as much as I can for the rest of my life.  So I do.  Also, my recovery was during the hottest months and walking outside in the Florida heat was overwelming. My husband drove me to the mall alot so that I could walk (with my pillow hugging my chest). 
 
A colectomy is a major surgery and I know that you're scared.  I think that we all are because there's not much literature about it and it changes your life.  I would travel to Cleveland Clinic again if I had to ever have surgery again.  Those doctors are wonderful!  Dr. Wexner, my surgeon, heads a colorectal association group and is over 6,000 other colorectal surgeons.  He has credentials to be able to perform surgeries in numerous countries, so he's good.
 
Actually, I didn't know much about Cleveland Clinic in the beginning.  Two years ago, my gynocologist did a rectocele surgery on me and something happened that shouldn't have and afterwards I became constipated and it got worse from there.  My gynocologist and health insurance director said that the best colorectal surgeon around was at Cleveland Clinic.  Even though it's out of my insurance company's normal area and contracts, because it was a surgical error on their part (they didn't want me to sue them) they sent me to Cleveland Clinic for help and have paid for everything.  I had to pay out of pocket for hotels and travel though, but hotels around the hospital have reduced rates for patients.
 
A blockage is a scare to me.  Before surgery, the nurse told me that after surgery I would need to chew my food carefully forever.  They suggest putting some food in your mouth, put your eating utensil down, chew, pick your utensil up and get more food, put utensil down, and chew some more.......... Otherwise, you could get a blockage and it may mean another surgery.  I chew good.  It could still happen, but I will try to prevent it as much as I can.  I've spoken with my surgery about this, because frankly, I do not trust the emergency room or doctor's where I live for the surgery that I've had.  Most of them don't even know what a colectomy is without me explaining it to them.. You'd never believe how many.  Anyhow, my surgeon has told me that if I ever suspect that I have a blockage, to go to my hospital emergency room and have them medivac me immediately to Cleveland Clinic. 
 
Weight? (Best part of my having the surgery)... Believe it or not, before surgery (10 months ago) I weighed 215 pounds and was a size 18.  Now, I'm a size 4-6 and weigh 131 pounds and am loving being able to have a new wardrobe.  I'm not starving, either.  I've just changed most of my eating habits.  No more chocolate (just small pieces of sugar free) or I'll have runny stools.  No fried foods or red meats either.  I eat lots of fruits and vegetables now.  I eat lots of baked potatoes, rice, and pasta.  And.... I eat lots of chicken, fish, and turkey.  I love my bagels or oatmeal for breakfast, too.  The nutritionist says that 6 small meals a day would be best after the surgery and that's what I've done.  She's right!  And, try to have some protein every meal.  I'm healthier than I've ever been and I eat just as much as before..  My meals are just smaller and healthier than before, and more often.  My husband and friends all say that I look wonderful and I feel so, too!!  The first month after surgery, I only lost 10 pounds and that's with them taking 5 and a 1/2 feet of my colon taken out..
 
If you ever have any questions, please ask.  I was terrified, but am very thankful now.  Everyone's experience isn't alike, but maybe mine will help.  You can e-mail me at lasbutterfly@embarqmail.com if you want.
 
butterfly
 
 
 
 

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 6/22/2008 9:20 PM (GMT -6)   
Thanks for responding. I'm going to keep your email address and get in touch with you soon. We're leaving Tuesday for a 10 day vacation and I've already figured out which nights I'll be able to stay in and poop! Isn't that sad?? LOL

I will definitely be in touch when I get back. Thanks so much for the information. I feel like I really am doing my homework before having this surgery; but it really does sound like it's pretty much luck of the draw when it comes to how each person recovers. I'm very scared, but know I can't live like this forever.

Thanks again, and I'll be in touch.

Janie

Nonna
Regular Member


Date Joined Jan 2006
Total Posts : 23
   Posted 6/22/2008 9:48 PM (GMT -6)   
Hello everyone - it's been a long time since I posted. I had my TC Jun 06 and things have been wonderful for the most part. However lately I had not been going to the bathroom but once a day and occassionally I skip a day. Of course I am reminded of life before the TC. Since my surgery I have become anemic and have to take B-12 shots. I don't have the energy I once had, but I can deal with all of that as long as I have BM's. Have any of you experienced a slowing in your BM since your TC. When I was going 5-7 times a day, I never felt bloated, sometimes now I do. Do you know of anything I can take?
Thanks,
Nonna

sunshinefl
Regular Member


Date Joined Jun 2008
Total Posts : 49
   Posted 6/23/2008 5:58 PM (GMT -6)   
Janie~did u receive the response I sent you to your email yesterday? I have been having problems with my email when I hit reply and found out today some people aren't getting my responses.. My husband bought me one of those cell phones where I can email, internet or anything like a minature laptop so that I didn't have to sit at a computer all day and the dang thing doesn't want to send my replies... if u didn't will u please send me your email address again because I didn't save it before I deleted all my emails

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 6/23/2008 10:00 PM (GMT -6)   
Yes, I did get your email, but when I tried to respond, I got a message that it couldn't be delivered.  I tried again, and it came back again!  my email is jcw314@aol.com.  I don't have time to write now, but I'll send you another note tomorrow! 
 

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 6/24/2008 11:59 AM (GMT -6)   
Hi Sunshinefl
 
I also had the STARR and pelvic floor repair.  I am seriously considering a colectomy, but my surgeon will only do a total on me.  so i am in crisis, but cant go on like this as it is ruining my life too.
 
The crunch came when i had an MRI june 2007 which showed my sigmoid was twisted in two places and lodged inbetween my rectum and vagina.  my surgeon thought, because of my obstructive symptoms, that it should be whipped out, so i agreed. Afterwards the obstruction was gone, BUT straight after, my colon just would not start to work, and hasnt recovered since.  i now take up to 30 senna a day. Fibre is the worse thing ever for a slow bowel. 
 
Before i had the sigmoid removed, I was able to sort of sufficiently go to the loo about 2x a day, but had to use 2 boxes of glycerin suppositores a day and spend 3 hours on the loo am/pm.  my bum always hurt in the morning and afternoon.  however, the last few months i have been having pain again - i think through the loose stool, plus the rectum can become inflamed - it became inflamed before because of all the assistance i was giving myself with the suppositories and finger etc.  I hope you and i and all of us find peace.
 
all the best x
 
Previous diagnosis/surgery:
 
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome (ODS); Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate worsening STC;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once) or be in discomfort. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(


sunshinefl
Regular Member


Date Joined Jun 2008
Total Posts : 49
   Posted 6/24/2008 12:26 PM (GMT -6)   
2much2bear~I hope one day we all find peace also, I just s omehow have to keep in my mind that it can't last forever I hope not anyways.... I have a true understanding that physicians truely are practicing medicine on each and every one of us!!! How much and how long do we have to suffer until we can decide how we want our medical care managed... if you want bigger boobs you just go in and have surgery if you are in pain and suffering and in aggany they want u to keep taking laxatives~doesn't make any since to me.... sorry that was me venting I just requested my results on my gastric emptying and it clearly says I failed both my small intestine emptying and my large and the dr wants me to take laxatives... everyone out there I suggest you request your medical records and read what they have to say... I always knew that I had slow motility but this clearly says I flunked I think there is a difference if I am reading them right....

lasbutterfly
Regular Member


Date Joined Nov 2007
Total Posts : 281
   Posted 6/24/2008 7:34 PM (GMT -6)   
Nonna, I've only had a couple of times of constipation since having colectomy surgery last year.  A couple times is enough, because you're right.  I felt bloated and miserable, and it does give you flashbacks of pre-surgery.  Some things that help me go to the bathroom are: eating bunches of purple grapes, eating a couple of pieces of sugar-free chocolate, drinking a coffee cup of warm microwaved prune juice, and eating a small bowl of chili...  I don't know if this list will help you or not, but I really hope that something does.  I understand how frightening not going can be.  I think that I'll always watch my bowel patterns for the rest of my life.. :-)
butterfly

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 6/24/2008 8:35 PM (GMT -6)   
Sandy,

I sent you another email and it was returned again! I'm leaving for vacation in the morning, but will be back on the 4th, and I'll be in touch then. Good luck!

ydonna
New Member


Date Joined Jul 2008
Total Posts : 5
   Posted 7/26/2008 11:15 AM (GMT -6)   
To SunshineFl... Here's my story. I feel your pain, I've been there. I finally came to terms with it and had to make a head adjustment.  Hope it helps. 

I’ve suffered from constipation for 15 years and believe me I’ve had my share of depression with that too.  I'm a 53 yr old woman, 125 lbs, 5'7".   I’ve seen enough doctors too, I’ve had all the tests, including the xrays with the markers and the defography. I’ve tried the drugs from the mild laxatives to Zelnorm to Amitiza. Nothing worked.  I’d go as long as 3 weeks before I would have a BM, then I'd give in and then I’d have to take 3 strong laxatives.  Those 3 weeks were painful. Just awful waiting around for something to happen, feeling more and more bloated, not being able to button my pants as the weeks went by. The left side always hurt the most.  Finally I’d give myself an enema and I’d have relief.  This went on year after year. I was miserable and depressed. Four doctors told me I needed to have part of my colon removed due to a motility problem.  Since I had been using the enema all those years, I worried that I was doing serious damage to my colon.  I gave it one more try with another doctor. The 5th doctor told me if continued to use the enema every day, that it would not hurt me and that I did not need to have part of my colon removed.  Well that was all I needed to hear. I went home and decided I needed to change my thinking.  I had to come to terms with it and accept it and that it was going to be okay. It was going to be a routine like brushing my teeth.  I could deal with it. Other people have a BM every day, well, so was I. Only I was going to do it a little differently.  And it was no big deal.  So now, I don’t wait until I am in pain, I just do it every day (in the morning before my shower).  I get up 30 minutes earlier and I don’t think about it anymore. It’s easy.  It’s actually my quiet time. I’m not depressed anymore and I finally got my life back.

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