Struggling with new ostomy - need advice on managing leaks!

*I used to feel this way. I was filled with anger and felt no way out! I've since had my J-Pouch Surgery, and it was much more complicated, full of complications, and I felt insurmountable issues with my bag! Still, I am so grateful to be through with UC and have my eyes on the takedown. The support here has been lifesaving.

OMG! No joke! I realize I'm relatively new at this. My ileostomy is only 2 months old. But how do you get used to shitting the bed 1-2 times a week?! Last night, my wife and I woke up for the second time this week, in the middle of the night with poop on the sheets, mattress, floor, carpets... etc. I eat so light, so early, but it doesn't seem to make a difference. If I roll off my stomach while sleeping and the bag is full, I'm covered in shit!

I feel lied to. Before my surgery, I was told how great it is, that I'll get used to it in no time. All three of my brothers, who now have J-pouches, totally soft-pedaled the ostomy. So many people on this forum gushed with enthusiasm about their bags, giving their stoma sweet loving names.

Well, I've named mine Satan!!!

Sometimes I think we all hate ours. I have an ileostomy also, and have had it for almost 3 years. I used to sleep on my stomach and right side all the time. I can't now because my stoma is on the right side and if I do, I have problems with output. I learned to sleep on my left side and back. It takes time to adjust and yes, it sucks. But for many of us, it is a way to keep living because without it, we would be dead. I am one of those. I was dying and in pain 24/7. Now my health is 100% better than it was and I can actually work and live my life.

I have to get up 2-3 times a night to empty my bag because like you, that is when mine is the most active. It doesn't matter if I stop eating at 6pm or 10pm, I see no difference. So that has become part of my life. We are all different and our experience will be different, but if I could give any advice, it would be to get a good ostomy belt and sleep on your back. I got one from Ostomy Armor and it is great. Without it, I can't make it a day without a blowout. Now that I have it, I can last 4 days without a leak sometimes. Though I don't recommend waiting that long.

My stoma pulls in at the bottom when it produces and without the pressure from the belt, it will go right under the bag. I've been over two years without messing the bed after making those changes. Maybe they can help you also.

Rosanskyism, I must say it's quite difficult in the beginning and there are things you will have to change. Some have had their ostomies for years, so for them it's a piece of cake. Each one of us is different, some grasp it sooner than others. Remember they're telling you their experiences. We all go through rough times in the beginning and it's also mental, it takes time to adjust. In time you will, it may not seem so now, but it will happen. Once you accept it mentally, it will fall into place, truly it's a lifesaver. You will look back and say, "Did I actually feel like that?" The greatest part for you is your better half is there for you. Good luck! Angelicamarie

Instead of getting used to having major blowouts, try to solve the issue altogether. It will probably be another month before your body regulates itself better. I would set 1-2 alarms during the night to empty the bag, also avoid food for about 2-3 hours before sleeping. Eventually, you won't even have to set alarms and you will naturally wake up to empty the bag. Poor-fitting bags or bags and supplies that just don't work for you can cause leaks and blowouts. So re-measure your stoma every time you change the bag. Around the 3-month mark is when all the swelling will be done most and you will know your final size. If you haven't already, try convex bags, they grip around the stoma better. For me, the game changer with leaks was when I started using the Coloplast barrier strips. They are essentially band-aids that reinforce the edges of the wafer and bag. I went from leaking and blowing out 3-4 times a week to only leaking 1-2 times a month. They also make overnight bags which are typically 14 inches or so. There is one bag that can hold a ton of output.

Hello Rozanskyism. Thank you for your post, as it is always useful to be reminded of those early days when we are adjusting to a new lifestyle which can be so different to the one before. I never say that I 'like' having a stoma.  Rather, I do 'appreciate the advantages' that the stoma offers over the pain and suffering thsat preceded it. What I never appreciated, was the sort of incidents which you describe and which can still happen occasionally. Rolling over at nights and having leaks - for me were resolved when I bought a new bed, which elevates both head and feet (a bit like a hammock shape). This was remarkably effective in preventing me from rolling and trying to sleep on my side and almost impossible to sleep on my front. Effectively, I remain in the same position all night long which is ideal for preventing leakages. However, this was a positve  'side effect', as I bought the bed to help with my hiatus hernia and my CPAP apparatus, which had a habit of coming off if I rolled on my side. It then made a noise equivalent to the compressed air on lorry brakes, which not only woke me up with a start, but also woke my wife, who was not amused!  After realising that I was not moving during the night it was easy to adapt the 'bag' so that it was held in position by a belt rather than relying on the adhesive. Also, in the days gone by, when I had high output, I used to use the irrigation sleeves as a 'bag' which meant that they held a very high volume of output without any problems.

As with the other contributors, I feel sure that you will eventually find ways to overcome the present difficulties and then perhaps you may start to appreciate the positives of having the stoma, rather than enduring the disavantages.

Best wishes

Bill 

Hi, don't give up. I know how hard it is as I kept waking up in shit a few weeks ago. But what I did was set an alarm for every 2 hours and I got up to check it. Then I went down to 3 hours and so on. I also stopped drinking and eating from 7pm, and I find that helps. Please let me know how you get on... I promise it will get easier, but I know how you feel...

Rozanskyism,

I too hate my ostomy. Worst of all is the fact that mine was unnecessary and the result of arrogant and ignorant medical care. That story aside, I have not slept in a bed for almost 4 years. I sleep in a recliner because I too became totally frustrated with washing sheets, blankets, carpets, and mattresses every few nights. Most distressing for me is reading stories of long-term ostomy patients still experiencing leaks years later, always unexpected and unpredictable. I tried changing eating habits, styles of supplies, and alarms in the beginning. I have not had more than 2 consecutive hours of sleep for four years, even with prescription meds. HOWEVER--there are a few very helpful suggestions here from our fellow ostomates. First, experiment with different supplies. They can make a difference. Wraps seem to help contain any mess, so that's a good addition to the supply list. Coming from someone who slept NAKED my entire adult life until this, that was a MAJOR adjustment for me. Also, eating habit adjustments help--- somewhat. BUT our bodies create 2.5 liters or better of normal intestinal fluids daily--even without eating, and without a colon, there is CONSTANT output into our bag. Alarms to keep from overfilling can help, but even small amounts can cause a leak with the wrong unlucky movement. All in all, the best suggestion that I have read at least for me is the adjustable bed because, as I have said, I sleep in a recliner which restricts movement and so helps to alleviate stress on the bag and limit leaks. However, both of these solutions have their own issues--beds are expensive and recliners are NOT beds, so the ability to stretch out your body and muscles is extremely limited. HOWEVER, the REALLY BEST advice from all of the ostomates seems to be the same--acceptance of a situation resultant from an issue over which we had no control. The desire to LIVE is strong in most humans, and hopefully the willingness and gratefulness of being in THAT particular club will kick in for you and help to create the acceptance giving you the ability to LOVE TO LIVE and ENJOY LIFE again.

Peace

Nancy

Congratulations Rozanskyism.....I admire your brutal honesty.

Good for you.

It is no sin to say how you really feel.....deep down. Something that is rare on this site.

I well remember the accidents you describe. Luckily I was on my own. I also remember blowouts and constant output.

I know all too well how you feel.

Although not exactly lied to, vital information was deliberately kept from me by "professionals" I naively trusted.

You are at your lowest point now.....the only way is up for you.

As I have a colostomy (most of my bowel still in place), I can't really offer any ileostomy advice although I do know two Australian girls with ileostomies, one U.C., one Crohn's, who have no issues.

I wish you all the best. You have an ally in me.

V.J.

P.S. I also agree with you about the childish naming of stomas. Each to their own I guess.

Hey VJ

It seems to be the norm for "professionals" to keep vital data from patients. They dare to call it "standard of care"! Lies permeate the medical industry, and despite the good that is done, NOTHING can replace FAITH once it has been trampled. Lies of omission seem to be a "habit" because doctors, ESPECIALLY SURGEONS, really do seem to have a "GOD" complex. They decide what the patient can handle, usually based on a lousy time-pressured meeting, and then determine what the patient should be told. "My" surgeon didn't even bother to read my records, and when I spoke with him about my allergic reaction to certain meds, he later acknowledged that he had never read the pathology report, even though he was telling me I had pre-cancerous cells (I DID NOT). His actual comment was "I am not your doctor". He provided the means for "someone" to administer those meds without my knowledge through TPN after I had refused to take them orally. When I discovered this at 3 am one morning, 36 hours before scheduled surgery, all hell broke loose. As I tried to cancel the scheduled surgery, I was heavily sedated (to calm me down). Then 12 hours before the scheduled surgery that I was trying to cancel, I was wheeled into PRE OP, without notifying my spouse, where I lay for 12 hours before they were able to work me into the surgical rotation. I was kept sedated, completely out of it with the help of meds administered "for my good". When I attempted to tell the anesthesiologist I wanted to cancel, the nurse said "she's on a lot of meds for anxiety and she's confused, but we have written permission".

You're right VJ, this site does tend to espouse the good done, because so many lives have been saved by doctors with integrity and an honest desire to "do no harm". That is the purpose of the site, to help ostomates adjust to the situation. Unfortunately, there are also those who are in this field for all the wrong reasons, or even if their reasons started out as honorable, their skills are severely lacking and modern medicine administration has changed their attitudes. Those situations also need to be addressed and discussed here, to help people be aware and to fight to self-advocate for themselves. I tell everyone to RECORD EVERY INTERACTION with medical personnel. I have said in the past and I stand by this—I will roll my ass out into the street before I ever set foot in a hospital again where I now know I have no freedom of choice. At least this way, I will see the truck coming to run me over.

Peace

Nancy

Sure, an ostomy sucks, especially when it's an emergency one, as in my case due to a spontaneous colon perforation. I have bad leakage problems due to a large stoma hernia, a large stoma prolapse, and two other abdominal hernias. I sometimes go through three flanges a day when it's really bad. Nothing can be done for me due to my high risk. HOWEVER, I sure am grateful that I not only survived being septic and the operation, but the fact that I am alive! It's so much better than the alternative. After I thanked my surgeon for saving my life by giving me a colostomy, she replied that most people are upset with her when they find out they have one. This is hard for me to understand...did her patients just want her to not give them a lifesaving ostomy and just let them die? I struggle with that question.

This tape has been a lifesaver for me and my ileostomy. I had so many problems until I found this tape at my local pharmacy. I cut strips and put about half on my bag and the other half on my bag and it has worked great. Good luck and God bless :)

Buffi, not all ostomy recipients receive a "life-saving" procedure. Glad yours turned out that way for you, but unfortunately, surgery has become the go-to method for many situations when a person is in the hospital, whether for that particular reason or not, especially if the patient is well insured. My case was a rape of my right to freedom of choice and turned out to be an unnecessary procedure that has cost me my ability to function normally in society because I trust no one anymore, especially in a situation where my decisions can be overridden by a position of power and authority. When you lose the ability to trust, it colors everything in your life, no matter how hard you try to look past an abuse. Meds that can make me less anxious also make me less me. The surgery that was done to me (while I was in the hospital for a clot in my lower leg) without full and complete honesty, by the withholding of important pathology reports and misrepresenting information. This was all while overriding my refusal to take the meds that were dispensed secretly, against my explicit refusal. Those meds actually brought on and exacerbated the condition and allowed a surgeon to claim "standard of care". It was rape, pure and simple: "Using a position of power and authority to take something from an unwilling victim". Rape does not have to include sexual assault. Usually, you hope to be able to trust the honesty of your doctors, especially when their service saves your life. One bad experience can change all that. I'm glad your experience was a good one. Mine definitely was not.

Peace

Gosh, dadgummit, you have sure been through a lot. I'm so sorry to hear of what has happened. Of course, I'm not talking about horrible situations like yours. I don't understand though how you went in with a leg clot and came out with an ostomy. I have heard of such stories in the States due to insurance greed, etc. Here in Canada, no such thing would happen because no one would have the benefit due to our 'free' insurance. You are lucky here to even get an operation. The wait lists for any tests, scopes, MRI's, CT scans, etc... anything is outrageous. People die waiting, actually. I hope that you can move forward somehow as hard or ridiculous as that may sound.

Buffi,

Thanks. Yeah, a real nightmare. Blood clot in right calf, caused by annual colonoscopy error (teaching hospital trainee). 24 hours later, emergency room when foot turned blue. Meds prescribed for CDIFF (which their own tests proved immediately that I did not have). I insisted on an immediate blood test when they attempted to give me the meds that had caused severe diarrhea and hemorrhagic blood loss two years earlier after ANOTHER misdiagnosis, at which time those drugs were posted in my records as severe allergens. Proof they were aware test was negative--I was taken out of isolation and they discarded their hazmat gear. The meds were put into IV bags hung during first two surgeries for clot anyway. ICU for 14 days with multiple blood transfusions, 9 units total, all because the same meds continued to be administered in a TPN drip supposedly prescribed because of nutrient loss. DUH!!! When I asked if I was still being treated with those drugs through IV because I couldn't understand the reaction, the surgeon told me "I am not your doctor", but he prescribed the TPN. He lied telling me there were pre-cancerous cells--there were not. He withheld the pathology report corroborating my argument that drugs were causing the blood loss, etc. Removal of THREE ORGANS, colon, ovary, and gall bladder, none with damage showing a need for surgical removal. Three hernias almost immediately because of how I was cut, but surgeon insisted they were not hernias. Had to get CT scan to prove severe hiatal hernia with three loops of small intestine caught up in stomach, ventral hernia as well as another hernia under stoma. Multiple requests for records to find out who and how and what the hell, which resulted in corrupted computers, both my lawyers and mine. Two years later FINALLY got usable records, surgeon no longer working at THAT hospital, but still working.

I'm not sure but I prefer to believe that mine is most likely an extreme case, except we went through something just as frightening with my husband 15 years ago when a surgeon wanted to crack his chest--UNNECESSARILY. We insisted on a second opinion and were verbally berated and called names but we went anyway. The doctor who invented robotic surgical treatment for the heart saw him and informed him he had grown EIGHT new arteries around his blockage and not to let ANYONE tell him he needed surgery. Hubby's fine with minor meds. His records were also altered, as they (first doctor) treated him with betadine and he is allergic. I found him unresponsive in the hospital, tongue swollen and eyes rolled back. Afterwards, his records stated "pretreated for allergy" - LIES. Oh yeah, my identity was stolen by personnel in that hospital--they got caught but JEEZ ENOUGH ALREADY.

SO, Now that I've provided you with your nighttime nightmare, I must admit that although I'm sure there are many with very good experiences, I can promise you that neither my husband nor myself will EVER cross a hospital threshold again. I've told the last hospital board, if I have a heart attack I'll roll my ass into the street where I can see the truck coming at me.

Peace

Nancy

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.