I MISS BEING IN CONTACT WITH ALL OF YOU THAT I WAS BEFORE MY SURGERY.I WOULD LIKE TO HEAR FROM AGAIN

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walking scared
New Member


Date Joined Jun 2006
Total Posts : 13
   Posted 7/6/2006 6:58 PM (GMT -6)   
   Hi there,
      I hope that all of you had a great safe forth of July and had a chance to spend it with your families.
      It will four weeks tomorrow, since I had my colostomy surgery done. I am starting to used to having a pouch attached to me, and not having to struggle to go to the bathroom, or not able to get to the bathroom in time. How ever I can not get used to having a dirty bag. My nurse told me to get used to it, back I can not stand the feeling of having something dirty on me. How long did it take you to get used to it? I am getting used to going out in public with it. But I do keep watching and looking down to make sure that I am not ballooning out on that one side. I am so scared to that I am going to pass gas through my stoma with out being able to hide the sound of it. There was a time when it happened, in an elevator, and I was embarrassed, because the elevator was full. My left side of my stomach is still a little bit swollen, do you know about long it takes, before it will go back down to  normal?
      Even though it has been pretty hot here on mid east coast, I am still not ready to get into a bathing suit yet. I am hoping that I will not be as timid next year and will be able to go the pool with my grandchildren and have fun with them. I feel bad letting them down this year.
 
                                                                walking scared  :-)

Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 7/7/2006 7:43 PM (GMT -6)   
cool  Hello!  Walking Scared
 
My name is Angel and I had my subtotal colestomy on 09/20/05 (9 1/2 hrs surgery), Emergency Surgery the next day for internal bleeding numerous blood clots around my kidneys, TPN line put in my right arm for 12 hr feedings from 10/31/05 until my reversal ileostomy Xmas Eve.  Having an ostomy bag for three full months was such an unbelievable experience.  It actually controlled me.  I could not go out of the house unless it was forr a doctors appt or for ostomy supplies.  I didn't get the hang of placing the wafer and bag the proper way until my last day before I had it reversed.  My home visiting nurses said I was doing a great job with it, the site was clean and healing properly plus the stoma actually decreased in size to almost a 1/2 inch.  I had a few accidents with the ostomy bag at home.  One thing I made it a point to trying to empty it way before it was half full.  At night when I was sleeping, it the bag got too full for my body, I would start to vomit in my sleep and that would wake me up to empty my bag.  It was always an adventure and I understand what you are going through.  The funniest time with the ostomy bag would be when I passed gas.  The ostomy bag would blow up like a balloon and then I would have to burp it. (Relieve the air)  Or sometimes I would watch it do its thing and ask myself, why did this happen to me?  It was supposed to be an easy procedure and it ended up being life threatening.  Anything was better than before the operation, not being able to have a bowel movement w/o assistance.  Over the counter and prescribed laxatives never worked not even an enema until the operation.  Now I go 8x's a day plus I am lactose intolerant.  If I know I have to go somewhere, I cannot eat until I come home.  I drink lots and lots of Propel Calcium Water and hot tea for breakfast and sometimes after dinner.  But soda, juices, lemonade, ice teas, milk, give me burning diarrhea.  I lost 28 lbs since my reversal and I am trying to gain weight, but what goes in now comes out real fast.  I know in time, my system will change for the better.  My surgeon said it may take me a year or two until I fully recover.  I am 5'4  and weigh 100 lbs.  So do not be embarrassed of what your body does in public especially with the ostomy bag and in time you will be able to do all the special things and attend events that you did before your surgery.  Especially try and keep active especially with your grandchildren.  You my not be able to go swimming, but you can watch them and participate in other ways with them.  And by all means, don't feel like you are letting them down.  They are just glad that their Nana is able to be there with them and feeling better than you did before the operation.  Kids are wonderful and they sometimes know alot more than most adults know and feel.  Keep a positive attitude, you will get better, all this just takes time.  I keep praying that someday everything will be better.  But we all have good days and bad days, hopefully alot more better ones! ! !
Have a great weekend!
 
Angel

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1243
   Posted 7/7/2006 10:00 PM (GMT -6)   
Angel Baby said...
You my not be able to go swimming, but you can watch them and participate in other ways with them. 
Yep, you most definitely can go swimming :)  I was in the pool swimming a month after my ileo op - but then I was a kid and kids tend to be more resiliant than adults after a surgery like this and more ready to try new things sooner lol. Give yourself time and you'll do it.
 
A lot of people like to picture frame their wafer with waterproof  tape to help stop water affecting it. Others like to use a hairdryer on it's lowest setting to dry the wafer after swimming. Others, like me, do nothing special at all and just go swimming. You'll find a way that works best for you if you really want to do something :)
 
As for the bag feeling dirty on you, a lot of new ostomates feel that way. As time goes on and you become more confident, you'll start forgetting you even wear a bag. The only time I think about mine now is when it's time to empty.
 
The noise is my biggest bug bear. Usually, I just laugh it off and say I'm hungry and that it's my tummy rumbling - after all, the noise is coming from the front of me and there is no tell-tale odour to give the game away :)   At other times, ie work where everyone knows I have an ostomy, I just look at my tummy and say 'shhhhh' and then everyone just ignores it or laughs.
I have had an ileostomy for 30 years now due to UC.
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 7/8/2006 11:20 PM (GMT -6)   
Sorry Sharon! I didn't mean Sandy could not ever go swimming because I did not exactly (Angel Baby said...
You my not be able to go swimming, but you can watch them and participate in other ways with them. ) whether or not she had a subtotal colestomy or a total colestomy. Plus I only meant in time she might be able to resume her regular activities. My sincere apologizes if my statement was miscontrued in any way, shape, or form.

Have a nice Sunday!

Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 7/17/2006 8:09 PM (GMT -6)   

cool  I am sorry.  The forum moderator made a statement regarding my one reply to you and I apologized to the forum moderator if my reply was misunderstood. 

In the beginning, I prayed that I would only have a temporary ileostomy until my small intestine healed properly to reverse it in a matter of 12 wks.  My surgery was suppose to be 1-2-3 instead it probably made the medical books lasting 9 1/2 hrs.  Complications occurred with the laposcopic colectomy; then emergency surgery on day 2 for internal bleeding another 5 1/2 hrs (open surgery) and my reversal ileostomy was 4 days before Xmas.  My biggest problem that I have been experiencing for the past 7 mos is hemmorhoids, swelling and bleeding of the rectum.  I can hardly eat anything plus I take Lomotil tablets 6 x's daily.  I live on Butterball Turkey Breast sandwiches daily, the white of eggs, bagels with lactose free butter, lactose free soy milk, lactose free peanut butter and lots of Propel Flavored Water.  I am from the Northeast (PA).  During my last surgeon's visit, I was scared for one the possibility of the removal of the hemmorhoids and two I had pain when I had a bowel movement.  Surgeon thought I might have a hernia, boy that is all I needed.  But after my examine, he said I was fine.  For the hemmorhoids, I am not a candidate to surgically remove them.  I had difficulty for my first two surgeries as a bleeder and it might be worst if I had them removed.  I have maybe two days a week that I feel fine the other five days, I am fatigue, afraid to eat because my BMs are 6 to 8 x's daily, and the more I go, the worse the hemmorhoids get.  It really hurts.  However, it is better than not going for weeks at a time.  I thought after 7mos, I would be better like a lot of the people in our forums here.  I cannot even go back to work full-time, not even part-time.  Cannot judge BMs yet and they come with a lot of pain in the behind.  I sincerely hope that your stoma site is alright.  Just follow the doctor's and stoma nurse directions in keeping it clean and dry and empty your bag whenever you feel necessary.  I hope everything goes fine for you!  Angel

 


Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 7/21/2006 7:13 AM (GMT -6)   
cool  Hey There Walking Scared!
I am sorry it took so long for me to reply, although I am having a difficult time with my recovery and believe me it is a horrible time right now.  I get one or two good days a week.  After reading all of the posting under the Ostomy Forum(s), I get upset, because everybody is doing so great in their recoveries from a reveral ileostomy and I am having such a horrible time during mine.  I hate to even get out of bed anymore.  There are days when I make more trips to the bathroom when I eat anything it goes right through me.  My husband is worried about me.  I can't gain any weight.  I keep dropping weight currently at 113lbs my height is 5'4 & I will be 42 yrs old in two days.  But everyone tells me I could pass for a 25 yr old.  Then there are days I can't go to the bathroom and that upsets me.  Because I start to worry about a blockage, infection, and more surgeries which I can't handle anymore.  It is very depressing at times.  But I have to be positive, because not only am I going through this, my husband (50 yrs old) was diagnosed w/Gioblastoma Multiforme Grade IV Brain Cancer and they gave him 7 mos to a year to live.  So I have to be strong for both of us as well as our children.  It like the book "Don't Sweat the Small Stuff" in life.
 
I am glad you responded to my replies.  You have gone through a great deal yourself.  You must have a wonderful support system built of family and friends.  To answer your question, I had a colectomy (removal of my large intestine) through laposcopic procedures with major complications ending up with an ileostomy (ostomy bag).  I had my reversal ileostomy (no more bag) 12/05.  I can't believe you ate an ear of corn.  Were you able to pass it through your ostomy?  When I had my ostomy bag, I watched everything I ate.  Mostly real soft foods.  I was given a list of foods that I could eat.  My ostomy never formed a regular stool.  It was mostly the form of liquid and sometime soft, loose stool.  Did your surgeon give you a list of foods to eat for easy passing of stool in your ostomy bag?  During my ostomy bag experience, it was very time consuming to change the patch and bag.  I made sure that I didn't have anything to eat or drink when I was going to change it and clean the ostomy site.  Otherwise, the ostomy would poop all over and what a mess.  I never got used to changing it until the last week before my reversal.  My ostomy nurses told me to get everything prepared in front of you and clean the ostomy site w/soap and water.  Dry it good.  Then there was a medicated pad I would wipe over the site.  You should have your patch with the adhesive on it already and attach it over your ostomy site.  Then place the clean ostomy bag to the patch and you are done.  The key is to have everything all ready to roll when you are doing this.  Don't worry it takes lots of practice.  And remember don't let your bag fill all the way up even if it is a quarter full empty.  How long did your surgeon say you will have the ileostomy for?  Your ileostomy is only temporary right?  Did you have UC, Crohns, Colonic Inetia?  I had a Colonic Inetia-Chronic Constipation, Low transit colon which I suffered over 15 years. 
Please keep in touch.  I do review the ostomy site from time to time.  Sometimes when I can't sleep at night, I read the site and reply that is why I reply at night during the day it is sometimes difficult.  Hope all is well in West Virginia.  Good all Northeastern Pennsylvania is humid and wet this morning!  You have a great weekend!
Angel

jjean
New Member


Date Joined Feb 2006
Total Posts : 16
   Posted 7/26/2006 9:10 PM (GMT -6)   
HI angel, I have been reading your postings regarding your reversal of your ileostomy. I had my large intestine removed last November for lack of blood flow to 2 areas of the intestine.  I was to have the reversal last March but unable to because of the lack of "blood flow" in that area maybe able to have it next year after a CT scan.  I'm interested in how you are coping and doing?  I'm sorry to hear you are having such trouble?  Has anyone been able to give an reason as to why? Are there certain foods that make it worse? Do they say time will correct all or most? I'm trying to deal with the ileostomy right now and hoping for an reversal. Tks in advance    jjean

jjean
New Member


Date Joined Feb 2006
Total Posts : 16
   Posted 7/27/2006 12:15 PM (GMT -6)   
Hi walking scared: I had an ileostomy last November and also had many problems with the pouches. One thing I found for myself was that if the opening on the pouch was too big for my stoma I had all sorts of problems, seal breaking and leaking at different times of the day or night.  My ET nurse pointed that out to me and it does make a big difference if the opening is just right. She also put me into a newer product "Cymed Micro Skin" pouches and I use a "Hollister Barrier Ring" with this product.  The rings are flexable and make it easy to get the right fit.  Once everything is in place I use my hair dryer on low for a minute or two to help warm  the seal to stay in place.  It works for me.This has been difficult for me aswell.  Hope that helps you some.  jjean
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