Thinking about getting a colostomy??? Need to know the good and bad of it

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honestwoman50
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Date Joined May 2009
Total Posts : 833
   Posted 1/23/2010 3:20 PM (GMT -6)   
Hello everone, I am usually on the IBS forum.  I have been dealing with pain and nausia, swelling, and can never have a bm on my own.  I have delt with this for over 6 years and since last April it has gotten out of control.  Today is my 15 day without having a bm, my problem is not with hard stools at all, my intestines for some reason fill full of air and it wont allow me to go.  So I usually do a enema every other day to get the air out first then everythings else usually follows.  But it has not worked so I drank bottles of Citrus Mag. on 4 differnt days, and almost a whole bottle of Mirilax, went to the ER yesterday and they told me I now have laxative abuse and I all full of fluid and air. 
 
When I have trapped air like that they usually put a NG tube in me and hospitalize me for a few days and then everything will move.  But for some reason the doc in the ER told me no and sent me home to rest and be on clear diet, and he said everything will happen naturally, but I dont have any confidence in that...
 
So I am so sick of being sick every day and I want my life back...so do you think a bag is the way to go??  Any suggestions...Lesliesmhair
Leslie King


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 1/23/2010 4:40 PM (GMT -6)   

Have you been diagnosed with colonic inertia?  This sounds more like colonic inertia than IBS.  You should see a GI and request a sitz marker test.  Once a diagnosis of CI is made you will have options for treatment that may include surgery. 

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


honestwoman50
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Date Joined May 2009
Total Posts : 833
   Posted 1/23/2010 5:35 PM (GMT -6)   
suebear
I have had the sitz marker test and they said my outer sphincter is too tight, really clamped down and the inner one is not working right also.  They found that out from doing a pressure memometer test.  They want me to use bio-feed=back but its 300 a visit cuz insurance does not cover it.  So I am waiting for the specialist to call me back to see if there are other options.  But somehow I do not have much faith that getting my sphincter to relax is going to solve my problem...too sick to sit here and type more.  Thank you for getting back to me..Leslie
Leslie King


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 1/23/2010 6:38 PM (GMT -6)   

Well it's too bad you can't get insurance to cover biofeedback because it helped me immensely when I was incontinent!   Surgery may relieve you of some of your discomfort but it won't be a magic cure.  I'm sure others who have CI will chime in and report on their successes.

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


cocotlc
New Member


Date Joined Oct 2009
Total Posts : 17
   Posted 1/25/2010 12:01 AM (GMT -6)   
Your problem sounds much like my own. I am two weeks post op from a desending colostomy and love it. I had lived my life thinking that it was completely normal to only poop once every two to three weeks. I failed the sitz marker test, all the markers were stuck in the bottom of my colon. I also had an entire 6 months of additonal tests that continued to show that I had some serious issues. The first DR I went to also wanted me to try biofeedback because (I think) he wanted to milk more money out of my insurance. He had discussed surgery for 6 months then, POP, he thinks bio will help before we do the proceedure. Well, my insurance refused to cover it because they considered it an experimental therapy. I went for a second opinion upon the request of my gastro. and the DR immediatly explained that I NEEDED to have a colostomy seeing as my sphencter muscle and the anus muscle were practically frozen shut. There were no nerver's functioning. He explianed that all the therapy in the world would never help. I can tell you, two weeks post op and I am going, and going, and going. It's funny I don't think I went this much my entire life but I am happy with this. If you need anything feel free to write.

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 1/25/2010 12:31 AM (GMT -6)   
mda@gci.net,  OMG you sound exactly like me.  I know I have nerve damage plus the tightly clamped down sphincter, today is day 16 for me I have not had a bm.  I am so swollen, nausiated, in pain, so I am calling my doc and demanding that he see me so he can tell the ER doc to put a NG tube in me to get the air out so I can do a enema so I can poo........I have had to have NG 4 times before and for some reason the ER doc's wont do it I have been there 3 times.
 
I know what my body needs and all this stuff in me is making me so ill.  Thank you for writing back I am happy for the info.  I wish you continued success on your new venture, was it extremely painful surgery?  I remember my colon resection and that one was painful.  Thank so much..   Leslie
Leslie King


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/25/2010 6:09 AM (GMT -6)   
Leslie - I'm happy to see you asked for help on this forum. There are very caring folks over here, same as on the IBS board but I knew they'd answer your questions.

I am hoping you find answers from your doctor.

Wishing you better days ahead.
Mary/Marsky
- Rectal Cancer 4/29/99, Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, temporary colostomy, reversed 8 weeks later)
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Takes Colace 50 mg each evening


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 1/25/2010 1:48 PM (GMT -6)   
cocotlc   So do you have the kind of colostomy that I have heard of called a bandaid one where you can irrigate once a day then just put a bandaid over the hole and your good for 23 hrs without pooping.  Just something I read on one site.   So 2 weeks out you must have felt good enough to get on the pc or you have a lap top that you can do from bed.
 
Are you getting around pretty well after the surgery, and how is the pain now?  Would love to hear from you as you progress.  Well its day 17 and still nothing....but more of the same...Best wishes to you ...Leslieturn
Leslie King


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/25/2010 2:47 PM (GMT -6)   
Leslie - I know we can't provide links here but the United Ostomy Assoc. has a website (an .org site). From there you'll see their forums. Look for their irrigators forum. Lots of people with colostomies they irrigate once every 24 to 48 hours. They are very helpful on that forum. I never joined, just lurked. I can't even contemplate surgery at this point, tight budget, etc. But look at their topics. I did a google search one day on irrigating an ostomy. From there I found their website.

Good luck. You're asking lots of questions which is excellent. And in the end, you may decide not to have an ostomy, which is your and your doctors' decisions to make. But it's always best to be informed, I believe.
- Rectal Cancer 4/29/99, Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, temporary colostomy, reversed 8 weeks later)
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Takes Colace 50 mg each evening


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 1/25/2010 3:56 PM (GMT -6)   
The ostomy your are referring to is not called a "bandaid" ostomy but rather a k-pouch or bcir. You can read more about the bcir at www.bcirostomy.org or go to www.j-pouch.org and click on k-pouch discussion thread to learn more about that option. Both surgeries are similar but the bcir has a proprietary valve.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 1/25/2010 9:50 PM (GMT -6)   
Marsky,  thank you so much...your very sweet.
Leslie King


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/26/2010 6:43 AM (GMT -6)   
suebear - thanks for the correct term. My colon surgeon just referred to it as an inverted colostomy. Perhaps because I had a temporary colostomy 10 years ago and know what one looks like and how to care for it. She tried to describe what an inverted or bandaid one would look like and perform as. She even wanted me to talk to her patients who have had one. That's when I put the brakes on the plan because of our current health insurance situation (high copays, deductibles, company refusing to cover tests). I had the impression her female patients would even show me how they irrigate their ostomies. How nice actually.

But I also heard the equipment is expensive. And I asked this too because I know our insurance won't pay for supplies either.

As of right now I am putting up with my situation as best I can because of our tight budget (hubby's pay reduced, we just had 2 daughters in college, one graduated but we have 2 more years of tuition). And I'm also not in your situation Leslie - I can't even imagine the pain you must feel. My surgeon only suggested this surgery so I can reclaim my life and begin to have more freedom from a bathroom. When the surgery is successful and the irrigation is possible, patients claim to have almost a full day w/o bm's. And no pain.

Do I believe it? I'd like to think it's that easy (irrigation).

But even if I ever committed to this surgery, I already know having a colostomy isn't a big deal. I managed my colostomy just fine. Better than fine. Don't let having a possible colostomy (even one with a bag) freak you out. Sometimes I wonder if I should have just asked for a perm. one but what did I know 10 years ago about all of this - nothing! Absolutely nothing. Should have obtained a second opinion too. But as they say hindsight is always 20/20.
- Rectal Cancer 4/29/99, Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, temporary colostomy, reversed 8 weeks later)
- Chronic IBS/D symptoms, multiple bm's, on low residue diet
- Takes Colace 50 mg each evening


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 1/26/2010 2:07 PM (GMT -6)   
Well went to the doc and he is sending me to the ER and he says I need to get a colostomy as soon as possible...If I come back on tonight then that means that they did not keep me but other wise I will be back on soon..thank you all..Leslie
Leslie King


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 1/28/2010 12:49 PM (GMT -6)   
Hello and how are you feeling?  How are you getting along with the new ostomy?  I just got out of the hospital and they got things moving so I am a happy camper till I decide to eat so trying to put that off.
 
On the initial surgery did you have ungodly pain?  I remember the pain of my resection OMG it hurt.   Do you have to eat differently once you have the ostomy?  Do you feel anyone treats you different now that you have it?
 
I am praying for you to have a great recovery and minimal pain...please keep my up dated on your condition and let me know what you think the good is and the bad is about it.  Well you have a wonderful day...Leslie.
Leslie King


cocotlc
New Member


Date Joined Oct 2009
Total Posts : 17
   Posted 1/30/2010 12:47 AM (GMT -6)   
Leslie, I was in intence pain directly after surgey only because my surgen had not written orders for pain medication and I had to wait until she would write them. After reciving my pump (morphine) I was sitting up within two hours of having the procedure. I was sitting up and walked about 20 feet the first real day after surgery, I wasn't even in recovery post surgery until 10 pm. On day one post surgery they sent me chicken broth and jello. I ate the jello, the sight of the broth mad me sick. On the second day I was up and walking and I don't think I ever sat back down. I was on clear fliuds for 3 days, then what they call full liquids which are like cream soups. Let me tell you cream of chicken soup is now my fav. food. I was on full liquids for another 3 days, then moved to low residue (no fiber) foods. Mashed potatoes, mac-n-cheese, and such. The top of my intestines didn't wake up until after I got home , about two weeks after surgery so eating for a while was horrible. Every time I had more than a 1/4 cup of soup I would become very ill. I have been home now and found that the low-residue is the best fit right now. I was asked to continue taking benefiber twice daily (they put me on it in the hosiptal) but I had taken a break when I got home because I didn't want to go out. about four days after being home I not only started it but I ate some Special K cereal. 48 hours later (2 tsp. benefiber and 2 bowls of cereal) later I knew I screwed up WAY to much fiber. I regresed back to low fiber and have been fine. Meat and me still dont get along and I have found that little meals are the key. I have 6oz of yogart at 8am.; a banana around 11; about 1 cup of soup at lunch, a roll around 3, then eaither soup or rice with a very small amount of meat for dinner. I will also sneak a cookie or a fruit cup around 9 or 10pm. I also live on s/f hot cocoa, coffee, hot tea, s/f apple juice, and water. Lots of water. I have to say the biggest adjustment is the discomfort while I sit. I now wake up and spend my entire day standing if I can, I will typically only sit to ride in the car, eat dinner at the tabel, or go to the restroom. I had some complications and the DR is still tring to figure out why I feel so uncomfortable when I sit but I can tell you other then getting sore after lifting somthing and not being able to run around I don't feel that different. If you want to chat more feel free to email me. Tracicampana@yahoo.com

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 1/30/2010 12:13 PM (GMT -6)   
cocotlc
    Good Morning:  thank you, wow, how long were you in the hospital?  Did you get a iverted ostomy?  I guess that is one you can irrigate like in the morning and get everything out and then you dont have a bm for like 23 hrs, and you just wear like a bandaid over it instead of wearing a bag all the time.  So if not what kind did you get and where?
 
Sitting hurts hugh?  Did they take your rectum out?  I love all the information that you included in you letter, that really helps me, to know what your going through.  I am so happy that your doing so well that is a blessing from God.  I know it sounds crazy but I cant wait to get mine.  I go to the docs thurs morn, and I hope I do not hit any road blocks, like if he wants more testing or something of that nature.
 
I took things into my own hands ,,,,I did not wait for someone to refer me I called and made that appt. myself and I am asking for the surgery, so I guess I have to wait to see how it goes..but my specialist in Portland , I am sure I can get him to tell the doc that I need it.
Well I added you to my yahoo...I am   freebabytaxi69@yahoo, just so you know my daughter uses my yahoo from calif....so usually if someone leaves me a message she gets it first and sometimes she forgets to tell me about the messages.  So when I log on I will message you and let you know its me...what is your name hun....have a great day...Leslie
Leslie King

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