Recovering from Colostomy: Seeking Hope & Support

Hi! I use the same 2-piece bag as you. I 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

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.

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

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.

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

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

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, or does he mean it is blocked? I guess that's what the CT scan 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!

On a liquid diet until Monday afternoon. Sure am hungry. Getting some liquid in a baggie.

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 CAT scan show?

By the way, 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? :) :)

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

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, Crohn's disease or others. I had 4 similar episodes with same symptoms that worked out alright and that's why I got so bad that I was septic when I got to the hospital.

In my defense 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 embarrassment. 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 cesareans 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 19 cm but within 2 days it was back to 6 cm. 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 laser surgery with fewer incisions and less invasive. I had an EKG and an 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 a 3-hour surgery but was on the table for 5 hrs. They went in with robotics. Didn't work. Went in with lasers manually. Didn't work. Had to do surgery the traditional way and I have scars to prove it crisscrossing 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. Fortunately 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 wasn't 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 until I produced a bowel movement! They were giving me Dilaudid 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 Dilaudid 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 that's gotten better. I have a lot less heartburn. I've had diarrhea twice but it was not alarming. Once it was before going to the dentist to have a tooth pulled and knew I had to control it so I took an Imodium. That really concerned me for a couple of 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 plenty of life yet.

Hi pnwgirl1963, the same thing happened to me. I was in the 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 okay. Hope you are doing okay. Ang x

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 you're coming along.

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 through a lot of online 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 broken down at the time if I'd heard you. But thank you now. You're right! I've been through hell and back and lived to tell it!

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

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

Congratulations!!!!

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 a day in a spontaneous decision. It helped that my 90-year-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

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 knew 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 have gone through but to keep moving forward.

Thank you... This is very encouraging

Mine was 6 weeks ago....same reason....yes, it's overwhelming....I had a nurse visiting in the beginning. That was helpful, however, no one will truly know 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 appliance, which was a lifesaver 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.

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.

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.

8 days out is so early, you are entitled to be freaked out, nervous, etc.

January 2022 I had my entire sigmoid colon removed due to 15 cases of diverticulitis, and I was given the gift of a colostomy. Because my colon was so messed up from bouts of diverticulitis, my bowels had been unpredictable for a number of years and limited what I dared to do. Early morning car ride? No.

I had a fabulous Ostomy nurse, and I recommend you demand one asap. Mine stuck with me, trying all of the various products available, she did not stop until we found exactly what I needed (Hollister two piece, a pouch that empties, convex wafer). She taught me every trick in the book for caring for my stoma and skin and changing my gear.

It took me a while to become comfortable with it all (maybe 5 months?), but once I had it down pat I was as happy as I could be. No more worrying about being somewhere and needing to poo NOW. I can take early flights, if I decide to travel. The advantages I've discovered are endless. If I was offered a reversal tomorrow I would say No thank you! I like me just the way I am.

One challenge I still have is figuring out what foods are processed best by my system and don't either cause a rush or prevent emptying. I cannot eat any raw vegetables at all. French fries, never. Much pasta, no. My best meal is a protein and a cooked vegetable. You will learn what agrees with you best. It is a process; just eat small amounts of new foods and you will learn.

I can do more now than I could before surgery, because pooping my pants is not on my mind ever and I've never had a pouch or wafer accident because I have the right system for me.

You will get there. Give yourself a break, you are only 8 days out! You are entitled to all the emotions available. Use them. If I can help you, pop me a message.

Hi! First, take a deep breath, it's going to be alright. I'm 6 months in, 5 days post-surgery, and I'm feeling good in spite of a large hernia. I too had recurring severe diverticulitis and an abscess, hence the reason for my surgery. This surgery is life-changing. Give yourself time to adjust. Some of your anxiety may be because you have a lot of questions, as we all did, but you're in a good place with people who can relate to what you're feeling. Also, do you have an ostomy nurse? She/he can answer all your questions and concerns. Also, don't be afraid to request free samples from the places that sell ostomy supplies, that way you can figure out which bag and other products you like best. There are also a lot of helpful videos on YouTube that show you different bags and how to put them on and their opinion of which bag works best for them and why. Also, the more your questions are answered, the more confident you will become, at least that's how it was for me. Just take it one day at a time, sweetie, and I'm sure you'll be just fine. "Hugs"