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I Hate My Ostomy!! (Revised)

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Posted: Wed May 02, 2018 5:53 pm

*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 life saving. 

 

OMG! No joke! I realize I’m relatively new at this. My ileostomy is only 2 months old. But how to 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 of 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 Jpoches, totally soft-peddled 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!!! 👿👿👿

 



Last edited by Rozanskyism on Tue Jul 31, 2018 9:20 pm; edited 1 time in total
Posted: Wed May 02, 2018 7:45 pm

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 in 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 times 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 dieing 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 because part of my life. We are all different and our experience will be different, but if I could give any advice it would be 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 preasupr 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. 

Posted: Wed May 02, 2018 9:28 pm

Rosanskyism, I must say its quite difficult in the beginning and there things you will  have to change. Some have had there ostomies for years, so for them its a pc of cake. Each one of are different, some grasp it sooner than others. Remember their telling you their experiences. We all go through rough times in the beginning and its also mental, it takes time to adjust. In time you will, it may not seem so now, but it will happen. Once you except it mentally, it wil fall in place,truly its a life saver. 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

Posted: Thu May 03, 2018 1:49 am

Instead of getting used to having major blow outs, try to solve the issue altogether. It will be probably another month before your body regulates itself better. I would set 1-2 alrams during the night to empty the bag, also avoud 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 fiting bags or bags and supplies that just don't work for you can cause leaks and blowouts. So re-measure you stoma every time you change the bag. Around the 3 month market is when all the swelling with 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 change 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 ouptut.



Last edited by maddie50322 on Thu May 03, 2018 2:09 am; edited 1 time in total
Posted: Thu May 03, 2018 2:01 am

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 

Posted: Thu May 03, 2018 9:15 am

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

Posted: Thu May 03, 2018 12:27 pm

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 matresses 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 adjustble bed, because as I have said, I sleep in a recliner which restricts movememt and so helps to eleviate 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

Posted: Thu May 03, 2018 3:31 pm

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 blow outs and constant out-put.

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 ilieostomy advice although I do know two Australian girls with ilieostomies, one U.C., one Crohns, 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.

Posted: Thu May 03, 2018 10:19 pm

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 3am 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 nofifying 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 to 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 to be aware 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

Posted: Sun May 06, 2018 5:22 pm

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.

Posted: Sun May 06, 2018 10:57 pm

Posted: Sun May 06, 2018 11:00 pm

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 . GOODLUCK and GOD BLESS Smile

Posted: Mon May 07, 2018 7:15 am

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 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 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



Last edited by dadnabbit on Wed May 09, 2018 11:11 am; edited 1 time in total
Posted: Mon May 07, 2018 11:21 am

Gosh Dadnabbit, 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.❤️

 

Posted: Mon May 07, 2018 9:28 pm

Buffi,

Thanx.  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 disgarded 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 thru 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 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 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 nightime nightmare, I must admit that although I'm sure there are many with very good experiences I can promise you that neither my husband or 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

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