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Brand new and scared to death after colostomy

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Sun Jun 26, 2016 8:41 am

Hi! I use the same 2piece bag as you. Am on blood thinners which they all produce a lot of gas. Have you heard of a bag that automatically gets rid of it? Tks

Wed Jul 27, 2016 2:41 pm

I'm a newbie too (Feb. 2016).  Regarding 'handling everything' this is how it was explained to me and I am fine with it all.  Ostomy nurse basically said 'When you used to go #2, you wiped yourself and you washed your hands' - that's the same thing you are doing now.  The only difference is that it comes out a different hole.  And quite frankly it is a much more convenient hole than the one I used to deal with.  Now I don't have to 'find a bathroom' or spend entire days in the bathroom, or take horrible antibiotics that made me so sick I could not eat.  I lost 60 pounds from being sick.  I dealt with poop all the time and I LOVE the fact it goes into my wee bag and I can throw it out whenever I choose to.  I like the 'control' element I have with the bag.  I don't even want a reversal.  What for?  At least now I can go on long road trips and not be constantly concerned about where there's a bathroom and be doubling over in pain.

I named my stoma the first week.  Make friends with her.  It's so much easier. 

I guess the best reason I can give for my attitude is that I never forget where I came from and what it was like before.  I was not 'normal' then that's for sure, but I am more 'normal' now than I was.  Keep hanging in there.  The first two months really do suck.  The stories I could tell, but not in the forum.

Wed Jul 27, 2016 4:54 pm

The first time, I wore the bag for 8 months. No problems and wanted to keep it. Surgeon and family talked me into reversal. Major mistake. Complete blockage and should have died. Now permanent bag with scar tissue causing blockage in small intestine. Am seeing surgeon tomorrow. Like you say, the bag has advantages. Good luck. Steve

Wed Jul 27, 2016 5:55 pm

I'm so sorry you are having all that trouble from multiple surgeries.  You know what I think?  I think our families are the ones that are more comfortable with us 'not having a bag', and that, in and of itself, is very hurtful emotionally.  It isn't them that has to go through surgeries and recoveries and take risks with their bodies, or suffer the many indignities we go through wearing a bag.   When I told my son I was getting surgery the only thing he said to me is 'Don't get a bag'.  LOL  I mean what's it to him if I have a freakin' bag?  None of his business is what it is.  I told him 'Of course I'm getting a bag, what do you think this surgery is?'  I'm not one of those who goes around telling people 'Hey I've got a bag, wanna see it?' - lol.  In fact I am VERY private about it.  This is MY body, MY deal and it was MY pain and suffering over the years - not theirs.  I can count on one hand how many people know I 'have a bag'. I think it is sad when family members care more about us somehow appearing 'normal' to society, than the literal hell we go through.  That's my story and I'm stickin' to it.  I have not had a lot of support from my family maybe that is why I feel as I do. 

Fri Jul 29, 2016 7:42 am

Your right. Cat scan this morning to find blockage. Yesterday surgeon said my small intestine is not working. Bad news. Hope he was wrong. Will soon find out. Steve

Fri Jul 29, 2016 10:49 am

So sorry to hear what your surgeon said to you.  On the bright side at least you don't have to 'prep' for a catscan.smile

I wish doctors wouldn't say such sweeping statements as yours did to you.  What does he mean by it's 'not working'?  Does he mean you are not absorbing some of your nutrients, all of your nutrients, does he mean it is blocked?  I guess that's what the catscan is for.  Are you in pain with this?  When I look back, I was told nothing before my surgery, and nothing after it either, except for the ostomy nurse helped me but not the doctor or surgeon. 

Hope and pray that they can take care of this quickly for you.  Life just sucks sometimes and when it does I try to remember that not every day is like that THANK GOD!

Hang in there Steve.  Where there's hope, there's life!

Sat Jul 30, 2016 4:21 pm

On liquid diet till Monday afternoon. Sure am hungry. Getting some liquid in Baggie.

Sun Jul 31, 2016 12:03 am

Oh dang!  You poor baby!  I hate the starving and liquid diet and prepping.  Are they giving you a colonoscopy now too?  What did your catscan show?

btw I've decided I'm going to call it 'the appliance'.  Not the bag (or baggie - lol) and not the pouch.  'The Appliance'.  It sounds kinda regal don't you think?  :):)

CH
Mon Aug 01, 2016 6:27 pm

I was told by a friend that "appliance" is much more sophisticated than "bag"...we definitely want to be "sophisticated" ostimates! :)



Last edited by CH on Thu Aug 18, 2016 7:28 pm; edited 1 time in total
Thu Aug 18, 2016 7:02 pm

Hello Everybody!

I am 13 weeks out of reversal surgery and doing well.

Honestly, my whole support team: friends, family, doctors, none of them had any negative concerns about my surgery at all, so I finally quit reading this site with all the testimonials of multiple surgeries and all the horrors that went with them. So I admit I chose ignorance. I believe the reason for my success is that I had a bowel blockage with no peripheral causes. No diverticulitis, cancer, Chrones disease or others. I had 4 similar episodes with same symptoms that worked out alright and that's why I gt so bad that I was septic when I got to the hospital.

In my defence if "what's regular for you" is not to go for 3-4 days and that's normal, you don't notice when it's been 5-6 days or a week until there's symptoms. Also, I have had stomach aches since I was a child that resulted in bathroom blowups. As a teenager I wouldn't use the school bathrooms out of embarassment. I'm certain I damaged my plumbing down there. As a grown woman of 63 all things pertaining to "down there" are verboten subjects. It's stupid to realize what being in high school does to a person but there you have it. From me anyway.

The reason for my reversal after only ten months was because my stoma was inverted. It did not present outside at all and because of my 2 caeserians and 100 lbs of weight loss my stomach folds made my stoma even deeper. I used concave bags but the adhesive didn't stick to anything and fecal matter was always on the surrounding skin and caused bleeding and constant leakages. I often had to change bags 3 times a day and the adhesive pulled my skin off. Adhesive becomes pliable after using it a couple days but removing it within hours of application tears skin right off. Also having my stoma enclosed all the time my body was constantly trying to heal that opening. Usually my stoma measured 6 cm, I had a stoma repair job which stretched to 19cm but within 2 days it was back to 6cm. If I had a hard stool that forced it open more there would be a lot of bleeding.

So this whole scheduled reversal operation was SO different than the first time! Knock on wood and praise the Lord, this was only the fifth operation I ever had and 2 of those were "C" sections with a little bundle of joy to show for it. Elective surgery freaks me out! Asking to be cut on is crazy and I'm not prepared for it in any way except to do what they say while suffering abject terror. (Don't let it show! Step up and be the adult even though I'm in control of nothing here.)

I was referred to have lazer surgery with fewer incisions and less invasive. I had an EKG and a EEG and a colonoscopy. Everything looked good to go except the doc had to find a pediatric scope to check my bowel from the stoma because it was so small. Afterward there was blood present for a couple of days. I was scheduled for 3 hour surgery but was on the table for 5 hrs. They went in with robotics. Did'nt work. Went in with lazers manually. Didn't work. Had to do surgery traditional way and I have scars to prove it criss crossing my belly including a bikini cut that I never had before. There was heavy scar tissue on the outside of my colon that the colonoscopy didn't pick up and heavy, heavy bleeding. Fortuately for me I wasn't aware of all this.

From then on it was all different from the first time. I only saw nurses who were trying to make me walk. This time it hurt! I wasnt even AWAKE for 3 days after emergency surgery but they expected me to walk. I didn't have any appetite and I knew I couldn't go home til i produced a bowel movement! They were giving me dialaudid and that was something else. I had side effects on morphine the first time, I had an alternate universe going on in my head but I just enjoyed the scenery being seriously disabled. I had the same thing on the dialaudid but I was aware of it to the point I couldn't communicate.

Then I was sent home in 4 days. No rehab facility, no visiting nurses, my family didn't hardly provide any help because I was only gone a few days but it was almost the same procedure and I didn't feel up to minor chores for 6 weeks just like the first time. I did it myself though after hiring someone who did less than I could. I also had to change my own dressings without any medical experience at all. It is still draining now and I don't know why but my surgeon has released me.

Now I'm in the process of learning my new system. I take a powdered laxative once a day and stool softeners twice a day. My bowels move every day and I will make sure of that from now on. I get the urge to go from a different place than I used to and sometimes I don't recognize it. Sometimes my bowel is too loose and I have soiling I was not even aware of but thats gotten better. I have a lot less heartburn. I've had diarrhea twice but it was not alarming. Once it was before going to dentist to have tooth pulled and knew I had to control it so I took an immodium. That really concerned me for a couple days.

What is so great?! When I shower, I step in, wash, and step out. That's all! Cool right? And when I have an ambitious day to get things done, I don't suffer some kind of stupid relapse and end up in bed for days forgetting what it was that I wanted to get done. It's great to me.

I'm not 100%. I'm still not leaving the house and feeling bored by it. I've just started riding the bus which includes walks to stops so I get out some. My energy level is not up to where it was and I fear that the last year has aged me closer to my actual age. Indeed I know constant pain has etched lines on my face but I can take that into stride. The future looks good even if I am 63. I take care of my mom who is 90 so I've got plety of life yet.

Fri Aug 19, 2016 3:06 am

Hi pnwgirl 1963 ,the same thing happened to me .I was in hospital for a cyst to be drained from my ovary,but the surgeon found matter leaking in my abdominal cavity .I had unknown diverticulitis which had gotten infected and burst . I had the hartmann procedure and spent time in icu.I am 8 weeks in and feel I am coping ok . Hope you are doing ok . Ang x

Sat Aug 20, 2016 2:45 pm

Hi CharK63,

Welcome to MAO! What a time you've had. I pray your reversal continues to go great for you and that you keep a great attitude. You my dear have been through so much and the fact that you know you still have plenty of life ahead is wonderful!

Keep posting and let us know how your coming along.

Sat Aug 20, 2016 10:57 pm

Mrs. A

Thanks for contacting me. I appreciate your sympathetic comments. I wrote one response to you but seem to have lost it while trying to upload a picture of my stoma before reversal, and not on a bad day  

As I stated before now that it's over it seems just a bad memory that is now over thank God. 

But in reading your letter I wonder if maybe I do have something to contribute after the fact that I was reluctant to share at the time. 

The whole miserable, horrible experience was aggravated by my inverted stoma so I am now posting a picture in case I can help someone else. The relief, such as it was, was obtained by me thru a lot of on line sources that I don't think I can attribute to after this time has passed. 

Thank you for your sympathetic comments. Really, I think I would have broke down at the time if I'd heard you. But thank you now. You're right! I've been thru hell and back and lives to tell it!

Sun Aug 21, 2016 12:04 am

I'm so very glad you've come back to tell us about it. What you have experience WILL help someone, and maybe already has.

You've won the battle and now your sharing so others can too. Stay strong my friend and visit as often as you can. HUGS and

Congratulations!!!!

 

Thu Sep 01, 2016 11:13 am

Hello again!

I'm sorry to say that I have a serious issue here with correcting my messages. I can't get to the word within a paragraph and since I can only backspace errors out I end up losing the entire note I just wrote. 

I just want to say how happy I am that I went on my first little vacation for a day in years! I went with my family to Santa Cruz beach Boardwalk! I rode the Giant Dipper with NO HANDS and waded in the Pacific Ocean. 

I had a ball but I'm also proud of myself for leaving for day in a spontaneous decision. It helped that 90 yr old mom was happy I got to go also and I lined up care for her easier than ever. 

Thank God and bless you all. I'm only 3 months out of reversal surgery and doing great! Feels so good to be happy again. 

Thanks for listening,

charK60

Fri Sep 02, 2016 10:01 pm

Good for you and your family!!! I hope you are still smiling from ear to ear about it. What a special day you had and the wonderful memories you've created with everyone.

Soon enough you will be moving on back to life as you once new it and barely looking back at what you have gone through. I think that's the way it should be. Not forget but not think or dwell on what we gone through but to keep moving forward.

Fri Oct 07, 2016 11:23 pm

Thank You...This is very encouraging

Fri Nov 11, 2016 8:15 pm

mine was 6 weeks ago....same reason....yes its overwhelming....i had a nurse visiting in the beginning.  that was helpful, however, no one will truly knows what works for you but you..  it does get easier.  the depression and self seclusion were the worst for me.  it took me two weeks to even entertain the idea of leaving my house.  clothing challenges improve.  i discovered rather quickly that my insurance covered the two piece apliance which was a life saver and is much easier, in my opinion, to keep the stoma clean and inspectable.  just remember, from, an early recipient, that taking care of you becomes easier.  I do still have pity parties lots.

Sat Nov 12, 2016 2:53 pm

Good for you! I already was reclusive and having the bag made me so much worse. This last year I've only had 2 friends around.

Now my best friend had an aneurysm and has had to go to San Francisco for brain surgery (had to one-up me didn't she?). 

Now, if it weren't for my wonderful daughters I would feel all alone. Even so, I really miss my friend.

I had the reversal so I hope to correct this situation if I can figure out where to go to make good friends at. Thank goodness I have all you to talk to.

Sat Apr 29, 2017 4:49 am

Hello, I am Mike and live in England. Like you I had a similar op following diverticulitis which resulted in a colostomy.

Emergency surgery removed 52% of my large bowel. I have embraced the situation and dont let this stop me doing anything I could do before.

Body image is probably my biggest issue but with flexibility this too is put into its right place.

I would love to help you get through this, and to realise that it doesnt define you or your life.

If you want to swap emails, my address is

Wed Jul 11, 2018 4:14 pm
I was in Panama. We invited Mr. Noriega to our Christmas party. He did not show up, so we had to go get him. Sorry about the mess we caused.
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