Struggling with new ostomy - need advice on managing leaks!

I had an emergency colostomy as a result of a botched da Vinci robotic hysterectomy where my colon was burned and my small bowel was perforated. I had 1/2 gallon of "poop" in my abdomen, severe sepsis, horrible pain, etc., when I went back to the hospital after they released me after I told them "something is not right."

It wasn't until months later I learned that this da Vinci robotic surgery has had a lot of issues between product recalls, deaths, poor medical training, etc., when I went in for my consultation, my surgeon didn't mention any of this nor did she give me any other options.

I totally understand why you are pissed for being deceived.

I had an emergency colostomy as a result of a botched da Vinci robotic hysterectomy where my colon was burned and my small bowel was perforated. I had 1/2 gallon of "poop" in my abdomen, severe sepsis, horrible pain, etc., when I went back to the hospital after they released me after I told them "something is not right."

It wasn't until months later I learned that this da Vinci robotic surgery has had a lot of issues between product recalls, deaths, poor medical training, etc., when I went in for my consultation, my surgeon didn't mention any of this nor did she give me any other options.

I totally understand why you are pissed for being deceived.

I have an ileostomy for 30 years now and I have always hated it. I live with it. I cope. I've learned to take care of it as best as I can. I eat very prudently now as I have had blockages several times and you all know about that pain. As for having accidents in bed, I feel bad for you. That must be humiliating. Fearing that, I have trained myself to sleep on my sides and I am always aware of my pouch as I sleep and NEVER EVER roll over on my stomach. I live with that and have never had an accident while in bed sleeping. I have also learned to experiment with many different products to find the ones that work best for me. There is nothing great or wonderful about having an ostomy. It just plain sucks. However, reading about Maddie's complex medical health problems, I feel fortunate in a way. She is a young person who must be very, very brave to endure all her medical conditions. I wish her all the best of luck. I am glad to have this forum to be able to express my feelings about living with an ostomy. I try not to let it keep me from doing the things I want, but you all know about that "access to bathrooms" situation we live with. I cope, but I have always hated being an ostomate.

Good for you Bluetrain67.....another one brave enough to say how they really feel.

I salute you!

V.J.

Thank you V.J.

I have to say that I found Veejay's comment on the sometimes lack of honesty by the people posting. We are all giving our honest comments from our personal perspective. Yes, some of us are more fortunate in that we may not have the constant daily struggles that some others do, however, we all had to adjust to having an ostomy. I just think some of us went into it with a more positive attitude. I had rectal cancer and went through the radiation and chemo and surgery then more chemo. I told my surgeon, "You can gut and filet me, just keep me alive." I am here 4 years out. Do we all wish we could have avoided or have our stoma reversed? Hell yes! Do I waste my precious time dwelling on it? No. It is my new normal, and as I am, Rosie is not perfect but she is why I am here. I don't look back, too busy enjoying my husband, kids, and grandkids. Hope my

comments are honest enough for you.

Good for you, Rosiesmum....you have a positive spin on your lot.

Just to clarify, I have no problem with someone like your good self having an upbeat, honest outlook on life since your "adjustment" four years ago.

What I do have a problem with is those who outwardly make out they are happy with their "life adjustment" but deep down they are thinking the opposite. Where I come from, this is called living a lie. Something I could never do.

Rock on, altered plumbing I say.

V.J.

Hi, sorry you are having such a bad time of it. I don't think anyone intentionally misled you. Perhaps like giving birth, you forget the bad and concentrate on the good. I don't know what pouches you use, I use Coloplast Sensura. They come with little white tabs that you use to close the vent at the top. It may be that the vacuum in your pouch is too much. Closing the vent prevents this. Also, applying Vaseline to the front of the wafer and inside of the pouch allows everything to slide more easily. The vacuum seal can also create pancaking, which, when it builds up, will undoubtedly push your wafer off after it gets underneath. Hang in there, better days are ahead.

I totally get it. I hate when people say, "Aren't you happier now? Don't you feel so much better?" Well, yes and no. I never wanted this. I had learned to live with Crohn's disease. But things happened out of my control and I now have an ileostomy for the rest of my life. Like you, mine is very active at night. I get up several times to empty my pouch. I also never sleep on my stomach, and just recently started sleeping on my sides. I wear a belt and a wrap at night to keep everything in place. When I roll on my side, I use a small travel pillow sometimes. I also will put that pillow slightly under one side of my back just so I'm not always flat on my back.

You must be a really hard sleeper. I'm not, so I wake up lots which helps me empty the bag and such. The alarm will really help you. And being mindful of your sleeping positions, I believe. I hope this is helpful and that things get better.

Also, wearing a wrap at night can also be helpful when your bag leaks because it helps contain it somewhat.

I am no pro at this but I'm learning. This site and others have really helped me; therefore, I am always happy to share what I can to help others.

Hi Rozanskysm, hope you are doing better both physically and emotionally. Believe it or not, I think of you often and hope things are improving for you. Hope the support you have gotten on this site has helped. Take care.

I have been away from this site for a helluva long time, which may reveal something of how I feel "deep down" about my colostomy. I've had it for 9 years now, and it took me 5 years prior to that to decide to go ahead with it, and only after my cancer surgeon told me about irrigation. Not an option for ileostomates, and not the panacea the surgeon made it out to be either. I have been SO fortunate to have had excellent siting of the ostomy, no skin issues or so many of the other horrors written about here. Still, I HATE my ostomy at times, and HATE it when people say to me (after 15 years of cancer care recovery) "well, be happy that you are alive!" (I want to do bad things to those people.) No one "gets" having a chronic health problem until they "get" one (or more). That said, I've noticed the folks who went years or decades in horrible pain and suffering because of IBD are the "thankful" ones here. Us other folks who had fully functioning GI tracts until things went wrong are generally the pissed off ones, understandably. The best of ostomy experiences are no-fun roller-coasters...who wants to be reminded of their own sh*t all the time??

My surgeon actually doesn't "get" why, when he suggests I have an additional ostomy (urosotomy) to deal with my radiation-induced urine leakage, I give him the death stare!! D

What a brilliant piece of writing!

You have nailed it, Pinky.

V.J.

Hi, I have recently been through my first revision and saw your post. I have a couple of ideas for you. If you sleep in PJs, you can sew a golf ball into the pocket of the shirt and when you roll over, it will wake you up. Also, you can set an alarm if you wear a Fitbit to wake you up a few hours into your sleep and you can empty. These are just suggestions to try to help. I sleep on my back or side as I have a CPAP and I can't sleep on my stomach with it. I can understand you and relate. I hated Maxine until they redid her. Turns out I had a horrible stricture from almost day one of the original emergency surgery. I didn't sleep a full night for the first 7 months of the first surgery nor could I eat hardly anything due to everything backing up behind the stricture. I almost died from the first emergency surgery. The doc said I was within 3 minutes of death before they stabilized me. My whole lower bowel died in less than 24 hours. Then when they opened me again, the doctor said it was the worst stricture and case of adhesions he had ever seen in his career and my intestines were backed up full behind it and ready to burst. He said had I waited even one more hour to come to the ER, I would have died. God saved me for three times!! I was pretty lucky. He saved my soul first and my physical life twice! I hope you find a solution. I am very glad for "New Maxine". She is working like a champ now.

Been there, done that. Gas makes the appliance blow up like a balloon. Roll on top of it and the wafer will fail. Guaranteed. Are you a heavy sleeper? Then you will have more episodes. You're going to have to wake up and go about every three hours. Depends. My ileostomy didn't ruin my sleep, per se. I was already a poor sleeper. My bag made things worse.

I was asked if I named my stoma. Response: no. My thoughts: why the heck would I name it? If I did, it'd be Thorn. I've been lucky in the nighttime sleeping, but my bag does fill up with gas at night, and if I don't wake, disaster. People loving theirs, I think they were in lots of pain and issues for quite a while before they got one.

I too have an ileostomy, but now I sleep in a recliner so I can't roll over, and my husband sleeps in the bedroom. At least like this, we both get a good night's sleep.

Hi, Rozanskysim.

How is it going, better I hope?

Hello from Maine. I used to live an hour north of you. I used to go to Cowboys, on Old Minden Rd. I miss those good 'ol days!!! As far as hating your ostomy, think of it as your lifeline. Without it, you may be looking at the roots, and having the worms visit you. I use a body pillow between my legs to prevent me from sleeping on my belly. I do have some night leaks, depending on when I eat my last meal for the day. I also placed underpads between the sheet and mattress in case of the dreaded airbag explosion. I researched as much as possible before I acquired Jake (my ostomy). I watched him being changed by the nurses, and I only had 3 visits from visiting nurses. I have had leaks in public, and I handle it like it is nobody's business but mine. If they are offended by me draining Jake in public, they can kiss both of my butts!! LOL Hang in there, you can do this!!!

Hi Roz..... Been there... had that problem... shit everywhere!!! I have two solutions for you. Two things changed my life with an Ostomy. The first is simple and affordable and VERY effective.

"Micropore Surgical Tape" the 3M Brand is the only one that works. It is a very gentle paper tape which will not irritate the skin... ever!! This tape will not come off in water... in the shower or even in big Ocean waves. I generally tape the four sides of the Wafer... almost like a "picture frame" around the four sides of the Wafer. I use Two Inch tape... even Three inch. If a leak is beginning you will feel it under the tape... before the tape actually lifts and this gives you the critical few minutes to get to a bathroom.

"Absorbagel" is a Moisture absorbing powder (looks like Salt) which comes in little sachets about the size of a quarter. You open the end of the bag... after you empty it... and put in two or even three of the little packets (sachets). These will absorb most of the watery liquid in the Bag. What is in the Bag will end up looking and feeling like a thick Pudding and will no longer pose a threat as far as leaking. When I use the Absorbagel I can open the end of the Bag... just leave it open and hanging and NOTHING comes out... I have to squeeze the bag like... haha... Icing a cake... lol... It will not pour out if the bag breaks open in any way. Using these two products will give you a totally new life... I guarantee you!!! I introduced my G Friend (Osto Lady) to 3M Micropore Tape and the Absorbagel and it changed her life. I haven't had a leak in my bed for years!!!!.

I get Absorbagel in Ireland and it is available in England and possibly Canada. Have a look online and you will find it. It is quite expensive if you have to pay. About 75 Pounds for 150 sachets in England. If you use three every time you empty it can be expensive. Try using two when going out or going to bed... it will change your life totally!!! magoomoran@gmail.com.... please write and let me know if it works for you. The Tape is available (about 7 a 2 inch roll... can get it for a buck a roll on the Net!!!

Please try one or both, you will not regret it.

Eamon....

I used to hate my situation more than the ostomy... I spent 60 days in a rehab facility after the operation with an open wound and horrible bags that leaked, didn't fit at all, and had a constant odor.. Now, I finally found the perfect wafer that is not uncomfortable and very seldom leaks (almost never, and no odors at all). I'm sure your feelings will change once you find what fits you better. I use a bigger convex wafer with very soft bags, and I sleep on top of it most nights without any problems.

I also had to have emergency surgery. I don't remember it at all. I went to CT and woke up in intensive care with my ostomy (surprise). But given the alternative, I thank my surgeons for saving my life. It has not been easy, but for the grace of God and hard work, I am still enjoying my life at age 78. I was 76 at the time of my surgery.

To everyone who responded to Roz, have you noticed he has yet to acknowledge any of us? This will sound harsh, but there are those of us that just want to stay at the pity party. My brother, God rest his soul, was one of them. He had a urostomy which he simply would not accept, would not look at, or take care of. He just wanted everyone to know how unfair it all was. I tried to reason with him to no avail. This was before Rosie came into my life. Then, the good Lord took him home, a blessing of sorts as he would never have come to terms. It is what it is, you either adapt or stay pissed off and let life pass you by. The choice is yours.

f

God bless you Rosiesmom!

I'm sorry for not responding more. I have been totally overwhelmed by my recovery. My wife has been encouraging me to reconnect with this group.

Take care,

David

Hi David, sorry to hear you are so overwhelmed, however, have things gotten better? I know we are all hoping the response is positive. Please know you are not alone.

I have had an ileostomy due to ulcerative colitis for 18 years. I never have a good night's sleep because I am constantly checking my pouch for air, etc. I empty a few times through the night. When I do sleep, I have horrible nightmares about being out somewhere and needing to empty and not being able to find a bathroom. It happens to me a lot and is very stressful. Once in a while, I do spring a leak through the night and I absolutely hate it. In fact, it happened yesterday morning and thankfully only messed my PJ bottoms and not the sheets. I was so tired and miserable that I put 2 large depends on and slept for a while longer before bathing and changing everything. Having the surgery saved my life and I am so grateful, but the ostomy has taken over my life in so many ways. It literally rules me. However, it is what it is and I am so grateful for this site where we all understand each other and can support one another.

Best wishes everyone.

Angela

Hello to you. I used to go to Cowboys on Old Minden Rd, back in the late 80's early 90's. I miss listening to KMBQ and 98 Rocks. Back when I visited Shreveport (avoided Allendale at all costs...lol), I had to travel 71. You folks threw in an interstate since then. I was last that way in '07. My mom and sister still reside in Texarkana, which I have heard added 2 interstates (49 and 369). I will need someone as a tour guide the next time I visit.....lol How are you holding up with your "add-on"? I actually am used to it, after 5 months and 3 days of having mine. Volcanic in the mornings are the funniest moment of my day.....lol I got mine, due to stage 3 rectal cancer. I have completed chemo, awaiting radiation, then the takedown, which has yet to be scheduled. After the reversal, I will stay on this site, to support others. Some are handling ostomys well, and others have a difficult time. We are all here for one another.

I've had my ostomy for six months and have done very well overall, but I set the alarm at night for 3am to empty it. Even when I wake up later on, it looks ready to explode! I check the whole "rig" frequently for leaks. I had one horrifying incident a few weeks ago; I woke up with crap running down my legs as a result of major leaking.

Hi Roz (David). Are you doing better? Just finished reading all the replies to your post...you got some great advice and some terrific product ideas. I've had my colostomy for 14 months. It was the result of 3rd stage rectal cancer. I also had a hernia. They did it all in 3.5 hours. Of everything I went through—Chemo and radiation concurrently, surgery, then three more months of 'chemo cleanup'. So far so good—there are years of follow-up and collateral damage: hair fallout, three lost teeth (implant time!) and just the time and pain lost to cancer and treatment. So, back to my ostomy...I was so sick when I came home 'learning' all about my ostomy was the only thing that kept me occupied. Oh, I must ask—did you have good information before your surgery? I noticed you mentioned that your family 'soft-pedaled' the reality of your new plumbing. My surgeon and ostomy nurse were fantastic, held nothing back...my ostomy nurse telling me that once I learn all this stuff, I will do just fine. Physically, they were both right. No one understood the anger, depression, and surrealism of all this...that's why this site is here. I am a widow and an orphan...you may have lost a bit of your physical self, but you have a wife who sounds loving and supportive...so stop your bellyaching and learn everything you can about your new little buddy, accept it as you do your aging body, thinning hair, or whatever happens as you age. Like aging, this isn't going to go away, and it is the skill of many people who helped create that little guy so you can live a long and healthy life with your family. You are not damaged, you are one lucky man.